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Monday, December 29, 2008 9:55 PM ET
Day 339
Sunday, December 21, 2008 11:10 AM ET
Day 331
Greg's Dad is now with our Lord. He passed at 2:30 this morning.
Thanks for the prayers.
Love,
Nancy
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Saturday, December 20, 2008
Day 330
Please say a prayer for Greg. He has just left for Akron to be with his Dad. His Dad, George, has been sick for many many years and now has pneumonia. The doctors are not giving us much hope. Please pray that Greg arrives safely with all horrible ice we are having. Please pray for no pain for George. Please pray for strength for our family.
Love,
Nancy
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Friday December 19, 2008
Day 329
Whew, we are home safe and sound from our whirlwind trip to Cincy! Matthew and I drove down last night and stayed at the Arcadia again. We had lots of hugs and Christmas cheer with our friends there. Then bright and early this morning we headed to Children’s Hospital. Funny thing is that I had called Greg this morning to find out how the predicted ice storm came out. He told me that schools and many businesses were closed, lots of trees down and power outages. Meanwhile in Cincy, it was in the 60’s! Go figure.
Our appointment went very well today. Everyone was so happy to see Matthew looking so healthy and soooooooooo handsome. Everyone loves his curly mop!
Dr. D was happy with how the GVHD was responding to the steroids. Even though he is still having symptoms he is doing much better. He even put back on 5 of the 25 lbs he had lost so that was good progress as well. The not so fun news is that she wants him to stay on the steroids maybe up to 6 months. Sigh. All and all, he is doing very well.
Our next big milestone is the one year mark in January. Can you believe that we are talking about such a huge milestone in the life of a BMT patient??!!! We go back to Cincy mid-January for several days of appointments and testing. Hopefully, everything is A-OK!
Counts looked great today also! Such a great CHRISTMAS present!!
Today’s Counts:
Hemoglobin: 13.9 Yahoo!
Platelets: 158,000 Back to normal range!!
WBC: 4,400 Completely normal
ANC: 3,180 Nice!!
On our drive back we were treated to some awesome and beautiful gifts from God…….These are some pictures of our backyard………Enjoy!!
Love,
Nancy and the Gang
Tuesday, December 16, 2008 7:18 AM
Day 326
Happy News to share!!!!
Matthew finished & presented his 6 page research paper yesterday for his American Lit class. He received an A on it!
More Happy News to share!!!
Matthew received an A- in pre-calculus and an A in American Lit! That sure will look nice on the ole GPA!
Even More Happy News!!!!!!
I’ve been trying to get approval for Matthew to take 3 classes this coming semester so that he can finish his junior year……and …..I found out that he has been approved! Yeah! Matthew’s goal was to graduate with his class and God willing he is on track to do so! I’m so proud of his perseverance and his ability to live his motto………Never Give Up!
Ok, I’m going to go cry now!
Love,
Nancy
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Monday, December 15, 2008 7:18 AM
Day 325
Ho, ho ho! Christmas has arrived at our home!
We decorated the tree……..children full of glee (except for the bickering and tattling).
We decorated the house…….even included the spouse (who reminded me HE did the outdoor lights).
We decorated the cookies……not a soul could play hookie (except for Justin who had to work as usual).
And by the end of the weekend our home was full of the spirit once again!
Ho, ho, ho……….
On the recovery front, Matthew had a weird rash and mouth sore flare up, I’m not sure what that was all about but things are calmer today.
Love,
Nancy and her gang of elves
Thursday, December 11, 2008 12:22 AM ET
Day 321
Wow what a week so far……….
Brittany decided to get the stomach flu that lasted a couple of days. Of course the radar beeps go off because of Matthew. I emailed Cincy to see what we’d do if he gets it and I was told he’d probably have to go to Lutheran for labs and possibly hydration. The flu for him would be harder to recover from. So, we are spraying with Lysol, wiping with heavy duty wipes, washing hands, sanitizing hands, keeping him and Brittany apart, praying and doing the hootchie bakuchie dance constantly.
It’s been a chaotic week at my office….a very busy week indeed for little ole me. I’m pooped….well maybe not sleeping much for two nights (thank you dear Brittany) is probably contributing to that tired feeling.
Matthew’s labs looked good. His platelets were a bit low but boy does his hemoglobin and WBC look awesome. He sure needs those WBC’s to fight off all the germs floating around Fort Wayne. Overall, he is feeling very good. He is still dealing with mouth sores off and on and a bit of a rash. The steroids have really calmed things down, not complete resolution but a huge improvement. I’m wondering how long Dr. D will want him to stay on the steroids. I guess we’ll find out next Thursday/Friday.
Christmas is getting close! Hopefully we’ll get our decorations up this weekend and hopefully we all stay healthy.
Today’s Labs:
Hemoglobin: 13.7
Platelets: 142,000
WBC: 4,700
ANC: 3,196
Off to try to get some sleep………
Love,
The Fab Five
Monday, December 8, 2008 11:09 AM ET
Day 318
Technology changes everything!!!
This morning Brittany was lying in bed with me and she was “explaining” what a compound word was to me. This girl’s brain never shuts off I tell you!
Anyhoo, as she was explaining what it was she announces “HEY, compound is a compound word!!” I started to show her the errors of her ways by saying "pound is a word but not com honey"
She says “DUH MOM, dot.com Com is too a word”
Huh……
Love,
Nancy, the Mom who still doesn’t realize how technology has changed everything…even grammar!
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Saturday, December 6, 2008 3:39 PM
Day 316
A special hug from God….
Last night, Greg & I went out to do some errands. Matthew and the little ones hung out at the house together. It was after 7pm so it was already dark. As we pulled out of our addition, I looked up in the sky and saw something bright in the cloudy dark sky. From a bright cloud sort of thing, a ray of light shone down. I tried to point it out to Greg but he was too busy maneuvering on the newly falling snow.
After our errands were done, we headed home. All of a sudden I noticed the same ray of light up ahead. Both of us looked at it and tried to figure out whether it was an alien or some another unexplained phenomena. It really got us wondering so we decided to follow that….uh….bright….um…..star????
As we headed east towards the ray of light, we noticed the light was getting brighter and brighter. We kept driving…….wondering if we’d see the Three Kings or a Sheppard or two…..closer to that light we drove….
Pretty soon we saw it…..a real live Nativity Scene at a church that I have always thought had the most beautiful stained glass window…..and there in the middle of the Nativity was a ray of light shining directly up in the sky to make it appear as if a special bright star was shining down upon us…..
I think God decided to give us both a special Christmas hug last night…….
Love,
Nancy and Greg
Wednesday, December 3, 2008 8:33 PM
Day 313
Things are pretty darn good around here! The steroids seem to really help the GVHD issues quite a bit. The mouth sores come and go now instead of coming and staying. The rash with the help of steroid cream is better too. I’m anxious to hear what Dr. Davies says we should do next. Our next visit to Cincy is December 18th/19th.
Logan has been having a rough patch in the migraine department lately. I think all the weather changes are really disrupting the ole noggin. It breaks my heart to see him so miserable.
Brittany is still honking and tonight announced that her ear hurts. She still managed to sing gloriously at choir practice tonight!
Justin’s 20th birthday is coming up on the 13th. I can’t believe he’s turning 20! Yikes! The big birthday dinner plans are slowly coming together!
Keep praying and Never Give Up!
Love,
Nancy and the Gang
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Sunday, November 30, 2008 8:33 AM
Day 310
We had a super Thanksgiving. The sky didn’t fall either…imagine that!!! :0
Matthew had labs done on Wednesday and they look really good….good counts are a good thing in our world….especially at a certain point in the year….ahem.
Wednesday’s Counts:
Hemoglobin: 12.8
Platelets: 161,000
WBC: 4,700
ANC: 3,572
Yesterday Brittany I spent the day in our jammies. Brittany has yet ANOTHER cold and I just felt blah….so I anointed the day as JAMMIE day for girls only………
Mom, I feel better, can’t you tell???
Now the boys on the other hand…..I made them work!
Onward to Christmas we go!!!!!!!!!
Love,
The Fab Five
Thursday, November 27, 2008 9:19 AM CST
Day 307
Happy
Thanksgiving!!!
Love,
Nancy and the Gang
Thursday, November 27, 2008 9:18 AM CST
Day 307
Happy Thanksgiving!!!!!
Love,
Nancy and the Gang
Thursday, November 27, 2008 9:18 AM ET
Day 307
Happy Thanksgiving!!!!!
Love,
Nancy and the Gang
Sunday, November 23, 2008 2:05 PM ET
Day 303
Mom is having a tough time. I couldn’t figure out why the past few days have been so tough. I’ve been weepy and crabby for unknown reasons. I just feel sad. I stopped to look around me and other than the stinky world economic news and some GVHD, things are going “OK” in my world. After snapping at everyone around me and then crying for no reason…it hit me… November 27th is the 8 year anniversary of Matthew’s original diagnosis. I think it has been brewing somewhere in my subconscious. The trauma of that moment….finding out that my son had cancer has been forever burned in my mind…..
Once upon a time I wrote down the story of Matthew’s original diagnosis and here it is again….
Caringbridge Journal Entry – Initial Diagnosis
Tuesday, November 22, 2005 8:08 PM
Our New Millennium
• The world survived Y2k …..Matthew survived getting into remission.
• Sony's PlayStation 2 launches in the U.S. for $299.99 and is sold out by early morning….Matthew’s admitted to PICU near death and by morning is diagnosed with Leukemia.
• Geraldo Rivera busted open Al Capone’s Vault …Matthew the busted Leukemia Cells out of his marrow for his first remission.
• Hilary Clinton officially enters the NY Senate race …Matthew officially entered the race for his life.
• The “I love you” virus disrupts computers world wide….Leukemia disrupts our lives forever.
• Mad Cow disease alarms Europe….Leukemia alarms our family.
• Bush formally accepts the Presidency…..Matthew formally accepts the challenge of beating cancer.
• 17-year-old Ian Thorpe of Australia wins four medals (three gold)….Matthew makes it thru the first 30 days of induction and arrives solidly into remission.
• Presidents of North and South Korea sign peace accord, and at least symbolically, end a half-century of antagonism….Riley Oncologists determines type of Leukemia and decide which protocol to follow.
• Concorde crash kills 113 near Paris…..Matthew’s counts all crash to a critical level.
• England’s Queen Mother turns 100….Matthew turns 8.
• The first permanent crew arrived at the International Space Station….Our family arrives at Riley’s Children’s Hospital for the first time and arrives on the 5th floor…CHILDRENS ONCOLOGY.
• CBS's runaway 2000 summer hit Survivor…Matthew becomes our survivor.
Do you have a date or two that sticks out in your mind? That no matter what else you seem to forget during your week, those dates always are “right there”? I have three dates. November 27, 2000…January 27, 2004….December 20, 2004.
While the above events were what most of the world was dealing with, our family was dealing with the unthinkable.
In October of 2000, Matthew decided to run in the City Cross Country meet. So, our little 3rd grader began to prepare for the race. Greg and Matthew mapped out the mile course around our neighborhood and run he did…every single day before and after school. Finally during the middle of the month, the race arrived and our family headed to Northrop High School. The race began and I nervously waited at the finish “chute”. That was the big stress in MY life. Pretty soon, you could see the little 3rd graders in the distance, as they got closer Greg says “Matthew is about 15th”. I was shocked! My little boy was 15th out of 178 kids?? They ran closer to the finish line and Matthew, in typical Matthew style, began to sprint. He finished in 11th place! Since this was all new to me, I was even more surprised to learn that the top 20 moved on to the finals in one week. Wow! A week later, I was sure Matthew was going to win (even though Marty was running too, you see I didn’t know Marty’s ability yet either). We nervously arrived at the finals. Unfortunately, things did not go as expected. Matthew finished second to LAST. He barely made it across the finish line. We were all in a state of confusion. This didn’t make sense. We were all very proud but still very confused. Within days, Matthew began to get severe sore throats and run fevers. We went to the family doctor and received antibiotics. By the time he had finished his round, it came raging back. After the third time, the doctor was pretty sure he needed a tonsillectomy. GASP, how scary I remember thinking. That means surgery, boy was I worried. So he prescribed one last antibiotic and sent us on our way thinking that if this didn’t do the trick, we’d be scheduling surgery. That was the Wednesday before Thanksgiving the year 2000. The next day Matthew woke with a 106.7 temperature. I frantically called the doctor who instructed us on the steps to take to get his fever down. I remember crying on my way to the grocery to try to find a place that was open to try to find a turkey. I knew in my heart something was wrong. That night and the next day I scoured the Medical Encyclopedia. I tried and tried to diagnose Matthew. The odd thing is that I for some reason skipped the section on Leukemia. On Monday, I took Matthew back to the doctor. The fevers had returned and he could barely walk. He would stand and literally fall over. He was so pale he was green. I looked the doctor in the eye and said something is wrong and I want blood tests run. We headed to the lab with a very sick little boy. I had no idea just how much our lives were about to change. We went for labs and a chest x-ray. Later that night Greg was taking a final exam at school, Matthew was resting on the couch and the phone rang. It was our doctor. I remember thinking this is odd that he is calling at 6:30 pm. Dr. Kelty said “Nancy, you need to get Matthew to this doctor right away”. I started to feel a sense of panic as I questioned him. He said “Matthew’s chest x-ray is normal but there’s something wrong with his blood results”. I started to mumble something about Greg not being home, and what was I going to do with the kids. He finally said in a very kind manner “Nancy, Matthew is very sick and we need to get him feeling better. Why don’t you call your Mom and have her sit with the other 2 kids”. I frantically called my Mom and said “you have to come now, Matthew is really sick”. I paced and paced the entire seven minutes waiting for Mom and Bob to arrive. When they finally got here, Mom said “Bob is going to stay with the kids, I’m coming with you”. To this day, I feel that was God’s intervention. He knew the news I was about to face. He knew I needed my Mom to be there with me. We headed off to the doctor who was about to tell me the words that no parent ever should have to hear. Looking back, I can clearly remember the looks on the nurse’s faces (who had stayed until 7pm just for us) as they walked us to the exam room. I can remember the clothes the doctor had on, I can remember the song on the radio in the room. I remember Matthew sitting beside my Mom across the room from me. I remember standing there looking at this doctor. I remember him saying “what have you been told?” I remember saying “that something is wrong with Matthew’s blood work”. I remember this big tsunami wave hitting me as he blurted out “well, someone with blood results as bad as Matthew usually has Leukemia”. I remember someone slamming a chair under me as I started to sink. I remember my Mom flying across the room as I started to fall apart. I remember Matthew staring at me from across the room. I remember the fear I saw. In that split second the flurry of motion so incredibly fast, scary and surreal began. My Mom somehow found Greg and pulled him out of his final exam. We drove Matthew to Lutheran and he was admitted to PICU. We were told he was near death and his heart could give out at any moment. We were told his hemoglobin was only 3 and he needed multiple transfusions to save his life. Transfusions…masks…yellow gowns….reverse isolation…Pediatric ICU…heart monitors…oxygen. Why? What was happening?? What am I supposed to do?? As Greg was standing in the hallway directing family members who had magically appeared, a kind man walked up to Greg and said “my son has been here a while now and I think your son needs this more than he does” …he handed Greg a Pooh Bear. Logan sleeps with that Pooh every night. When I tuck him in, I think of that kind man and hope his son is ok. My son is in PICU and my son needs it more than another child in PICU? My mind just couldn’t understand all that was going on. I thought he needed a tonsillectomy………wait can we do that instead?? Please????
The next morning Dr. Hill breezed in like a knight in shining armor. He introduced himself to Matthew and told him he was going to try to make him feel better. He was so calm and professional. He was kind, yet concerned. He also told me that he was heading down to the lab to look at the slides of Matthew’s blood himself. An hour or so later, he escorted us to a conference room right outside of Matthew’s PICU room. I knew in my heart that it must be true, Matthew must really have Leukemia. I remember thinking I had lost my son. The only thing I knew about Leukemia was the book and movie Love Story…and Ali McGraw didn’t fare so well. Dr. Hill gently told us that Matthew, in his opinion, definitely had Leukemia. Greg and I both burst into tears. He then began the process of telling us there was much hope and much that could be done. He then proceeded to tell us that we would need to go to Riley’s Children’s in Indianapolis and they would do a bone marrow aspiration to determine if it was the “good kind or the bad kind”. Good Leukemia?? Is this guy nuts? How can you have good Leukemia? We headed to Riley and began what has become our new millennium, our new life and our new journey. Matthew had his bone marrow aspiration and 1st spinal tap. I held him during both procedures, sobbing, my heart breaking with each scream. Good news they said…He has the good kind….good kind…he has the good kind of Leukemia….hooray??? He was in surgery a few hours later and chemo started while he was on the table getting his port placed. Port?? What’s a port?? He gets chemo in his port? Why?? Three years and 2 months of chemo? He’s going to get WHAT? He’s going to lose his hair, bloat up, get sick, take thousands of pills, multiple bone marrow aspirations, too many to count spinal taps and he’s going to be ok, right?? Right?? His chances are 85 percent, but what about the other 15 percent?? Sign here…what am I signing??? A consent to be “on study”. What’s a study? What’s a protocol? Do I have any choices here? I need to read this 30 page document and you need it signed now? Why?? To start chemo…but I don’t understand all these words? What about all these horrific side effects? You are showing me pages and pages of side effects including death. Do I have any choices? NO?? How can this be? He’s so little, so sick, he’s so scared, he needs me, how do I decide? He’s my son Dr Oncologist person….He’s MY son, not yours. What do I do?????? I signed the consents, we started on the protocol and down the road to recovery….one day at a time.
This Thanksgiving day is the 8 year anniversary of the beginning of this journey. 8 years ago Matthew had 106.7 temperature and our lives were about to change forever. This year God willing, we will give thanks for our donor, our doctors & nurse, and the good health Matthew is now experiencing. God has given us a true gift.
Love,
Nancy
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Saturday, November 22, 2008 9:05 AM
Day 302
Hey, did anyone notice that we are 300 days post transplant? The 365 mark is a big milestone for BMT kids….and we are rapidly closing in!
Matthew’s GVHD issues seem to be calming down…except for the mouth sores that seem to be more on the stubborn side. Every time he eats he gets these awful looking blisters in his mouth. Poor kid is now on steroids, starving and it hurts to eat…talk about a bad situation…….
Dr. D wants to check him out herself in December, so we’ll be making another trip to Cincy next month. Then in January we’ll be spending a few days in Cincy doing our 1 year tests. The list of tests is quite long….
My speech at St. Francis went very well. My goal was to share our journey while hopefully making some points about Nursing from a parent’s perspective. 
Matthew and I met with a nice lady from the Nursing Program. She gave us some excellent information on their Nursing program.
We continue pluggin along! Keep praying and Never Give Up!
Love,
Nancy and the Gang
Wednesday, November 19, 2008 6:43 AM ET
Day 299
Matthew is doing well. His rash has calmed down and the mouth sores aren’t as extreme. He still gets blisters after he eats though…weird stuff. The steroids do seem to be helping a bit and so far no nasty side effects from the drug itself…Sigh.
Today, Matthew and I head to St. Francis College. I am giving a speech there today and Matthew will be there to lovingly support me (he better not stick his tongue out at me). After the speech, we will be meeting with a lady to discuss their nursing program, since that is the direction Matthew is thinking of heading! Wish us luck!
Keep praying!
Love,
The Fab Five
Friday, November 14, 2008 7:20 PM ET
Day 294
We had a good appointment today. It was so great seeing everyone….lots of hugs and laughs going on!
Just as I suspected, Matthew does have some moderate Graft vs Host Disease (GVHD). Dr D suspects all the issues and the fact that they don’t seem to be going away are all attributable to GVHD. The good news is that we now have a reason and a plan of attack. The bad news is that the plan includes going back on steroids. But the good news is that the steroid dose will be very low for now. The other good news is that we now have a steroid paste to use for his mouth sores. Hopefully, that will help the “can’t eat due to pain” problem. Matthew has now lost 22 lbs since we’ve been home. We are hoping that this will all help the weight loss as well.
Overall, everyone agreed that Matthew looks fantastic. I heard many comments about how “hunky”, “handsome” and “healthy” he is looking. Hooray for the TRIPLE H dude!!
Matthew and I both received a flu shot today. I was surprised when I heard that Matthew would be getting one. Dr D said it may not “take” due to his suppressed immune system but it won’t hurt him. The risk of influenza is high for a person with a compromised immune system so we are all getting the shot in our house. I got mine in Cincy because it was the only place I could find that had the Thimersol free version. Greg is the last in our family to get his….I must start nagging him this weekend!
Counts actually looked great. That eosinophil number was still high but I am feeling more comfortable that it is due to the GVHD issue. His kidney numbers were good but his liver numbers continue to be slightly elevated (nothing to panic about).
Today’s Counts:
Hemoglobin: 12.9
Platelets: 170,000
WBC: 4,900
ANC: 2,600
We both had a nice trip to Cincy. It was wonderful spending some one on one time together…especially when he is feeling good! But we are both glad to be back home where we belong…y’all know the saying……there’s no place like home!
Thanks for all the prayers and good thoughts! Hopefully, the steroids will bring some relief to all his uncomfy issues!
Love,
The Fab Five
Thursday, November 13, 2008 8:35 PM ET
Day 293
We are here in Cincinnati…safe and sound! I sure loved the low gas prices! Between the 46.7 miles per gallon and the $1.76/gallon Kroger special, it only cost like $6.00 to get here! Much different than the $50.00 we were spending early this year on our Cincy-FTW trips!
We checked into Arcadia around 3:30. It was so nice being back here. Believe it or not, we have good memories of our many months of living here. The staff was happy to see us again too!
We drove by the mall and noticed how completely empty the place looked so we darted in for a quick stop. I have been looking for something for Brittany for a month or so and guess what?? We found it! I think there might have been 10 other people strolling thru the place. Then we stopped for dinner at an EMPTY Mexican restaurant. I can sure see the signs of this recession that is plastered all over the news. YUCK.
Our appointment is early tomorrow morning. I’m very glad we are going to see Dr. Davies. Matthew’s mouth sores are back and his jaw pain is still here when he chews. (I’m not sure why we chose Mexican??) He also has a funky looking rash on his neck. Very weird “issues” indeed.
Well, I’m off to relax a bit with my favorite 16 year old dude…..that would be Matthew!
Keep praying……
Love,
The Dynamic Duo
Wednesday, November 12, 2008 7:56 AM eT
Day 292
Matthew continues to have jaw pain but the other “issues” have disappeared. I’m not sure if this is just his body’s way of adjusting to no immune suppression drugs? Or still part of the recovery process or what?? All I can say is it is driving me crazy.
We head to Cincy tomorrow. Hopefully Dr. D can shed some light on all these things for us.
Matthew continues to plod along quite nicely with Math and Lit. He has a big research project for Lit that he is working on. Next semester scheduling is in process. We got the 3 class idea to fly, so that means he’ll officially be a SENIOR by summer.
Keep praying….
Love,
Nancy and the Gang
Sunday, November 9, 2008 5:29 PM ET
Day 289
In Indiana the weather tends to be a bit on the crazy side. Last week we had temperatures in the 70’s. The trees were full of beautiful colors and the sun was shining brightly. Today, it is 28 degrees with the wind chill, we saw snow flurries and the trees are looking pretty darn bare.
As we were lamenting the temperature drop, the disappearing leaves and the snow flurries, we saw an amazing treat of nature….
Matthew’s issue of the week is jaw pain. All of a sudden while eating lunch, his jaw started to hurt. His other acute issues are resolved and this appears to be this week’s challenge. I wish the “issues” would not impede his eating anymore. He’s lost 20 lbs since transplant and I think he’s looking kind of skinny. SIGH.
Matthew had a busy, friend filled weekend. It makes me smile ear to ear when he’s doing normal teenage stuff with his buddies!
Brittany and I went to see High School Musical 3 with the Roos girls! Needless to say, Brittany loved it…she thinks Troy is SOOOOOO cute! (GIGGLE GIGGLE)
All in all things are going well in our corner of the world! Keep praying and never give up!
Love,
The Fab Five
Thursday, November 6, 2008 7:50 PM ET
Day 286
Sorry for the lack of updates….I had to take a mental health break from stuff….
Matthew is feeling better. His mouth seems to be healing and the headaches are gone. I suppose it was some funky viral thing. It seems that is the diagnosis when all else fails….musta been a virus. I’ll take viral!
I’ve been working on Matthew’s next set of classes. He is progressing quite nicely thru Pre-calc and American Lit. It looks like he’ll be taking another English class, a science class and US History next. That will give him enough credits to become a senior! The plan is for him to go back to Bishop Dwenger next fall as a senior! Isn’t that just amazing? I’m so very proud of him.
Labs the other day were ok. Not quite as good as previous results but all ok.
Tuesday’s Counts:
Hemoglobin: 11.4
Platelets: 166,000
WBC: 4,700
ANC: 2,303
We head to Cincy next Thursday/Friday for the 2 month checkup. It will be nice to see everyone again. I’m also glad that our wonderful Dr. D will be giving him the “once over”!
Tonight we had teacher’s conferences for Logan and Brittany. They are both doing just wonderfully at school. We loved both teachers and learned something new about both of our kids. We just happen to go to the best school in the country! It was great seeing everyone….it took us longer to stop and jabber than the actual teacher conference LOL!
Keep praying……..
Love,
Nancy and the Gang
Monday, November 3, 2008 12:21 pM eT
Day 283
Well, Matthew continues to have numerous “issues”. It reminds me of a circuit board that occasionally short circuits….he’s just having weird issues that seem to go away and then the next group of issues hit.
This weekend he had and continues to have a mouth full of painful mouth sores. He’s been doing his mouth care mouthwash all weekend and I called the clinic this morning. They wanted us to get labs done as a first step so we’ll see.
Last night we had a Mexican Spa night at our house. The Fean Family, the Roos Girls and Justin joined us in the Fiesta. We had a taco buffet, super hot chili, butt farting dip, a Halloween chocolate chip cookie and homemade (by Matthew) New York Style Cheesecake. The food was muy bueno and muy caliente! The company was fantastic…oh and the Margs and Mojitos were muy delicioso!
Logan and Tim were busy playing video games……
So was Greg AKA Janet…..
Tom took a nap….
Mary was busy looking adorable…
As was Brittany……..
Kathy treated us to facials at our spa night………and no we couldn’t get “the boys” to participate…….
Here’s our before and after pics….
Before…….Me wearing the bug headband to keep my mop out of my eyes….or maybe it was the Mojito’s making me wear it???
After……..Isn’t my face glowing (hehe)
Before……..Debbie the Dwenger Alum………
After………absolutely GORGEOUS my dear…..
Before……..Kimmie…what a cutie ….even though she’s BEARS fan….
After………How about those luscious lips???
Before…… Lauren…….another cutie….albeit a PURDUE fan…sigh…
After……..Lauren……..what smooth skin you have…….
Thanks to our dear friends for a fun filled evening!!
Please say a prayer that Matthew’s labs look good and that we can figure out how to resolve all of his health issues….
Love,
Nancy and the Fiesta Gang
Friday, October 31, 2008 10:57 PM ET
Day 280
Happy Halloween
We had SPOOKTACULAR weather for trick or treating! It was in the 60’s and just BOOTIFUL! We think we had about 150 kids tonight at our door! I took Brittany and Logan around the neighborhood while Greg and Matthew handed out candy. Matthew wore a super scary mask and even scared a few kiddos while handing out treats!
Here’s our very own witch………….
What’s up with these scary faces??
Much prettier witch………..
Oh no, she’s scary again…….
And then there’s the scary brother……….Logan………
Hey, look my ribs are bleeding………
Oh man, another scary brother……..Matthew
Or is it POPEYE???
Our pumpkins………..
Matthew had a rough morning today. He had a bad headache and was dizzy and lightheaded. His appetite dropped to ZERO today as well. Luckily, as the day progressed he picked up some speed and was able to complete his English class, hand out candy, and head to a Halloween party. It’s almost 11 and he’s still out, so that’s a good sign. I worry so much about that kid. I try not to but it’s not an easy task.
Happy Halloween everyone!
Love,
Nancy and her ghosts
Tuesday, October 28, 2008 10:12 PM ET
Day 277
As quickly as the knee pain came on, it disappeared just as quickly. No pain yesterday and none today. No crutches, no hobbling…nuttin…..We still have the MRI appointment for Friday, but I’ll cancel on Thursday assuming the mystery pain is still gone.
Sometimes one just shouldn’t question………..
Love,
Nancy and the Gang
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Day 274
Hollywood’s latest Blockbuster:
Opening scene:
A bunch of ragtag soccer players arriving for their final soccer practice of their very tough WINLESS season. One key person missing from the scene is Assistant Coach Matt. All the kids are questioning the Coach as to where their other coach was.
Camera zooms in on the coach (played by George Clooney):
“Well, kids Matthew has been fighting cancer for a long time. He is having some trouble with knee pain right now so he’s not here with us today. But he wants us all to do our best tonight at practice!”
Camera pans out to the team…with very serious, solemn faces:
Caleb says “Ok, team let’s win our last game ….let’s win it for Matt!”
Camera fades to black.....
Next Scene:
It’s the day of the final game. At the soccer field on a bitter cold, windy yet beautiful fall day is the very determined group of kids….. Triumphant music …maybe the Rocky song……blaring in the background. The temperature is in the low 40’s, the wind is about 25 MPH. The parents are all freezing…..enter Team San Francisco. Coach Matt (played by Christian Bale) hobbles in behind them…on his crutches. The team does their team cheer and the game begins.
Matt’s Mom (played by the lovely Cameron Diaz) cuddles with Brittany(played by the adorable Vanessa Hudgens) on the sidelines, buried under blankets, sweatshirts and other warm stuff.
The anticipation of the big game is almost unbearable.
Logan (played by Zac Efron) scores the 1st goal….and soon the team has 4 goals…and the other team zero…
Final scene:
The team triumphantly gathers around their beloved Coach Matt….joyful faces…smiles.. high fives….the glory of victory…..their 1st victory….
Let’s Win it for Matt!
And they did….and the best part is……..it’s a TRUE story!
Love,
Cameron Diaz
Friday, October 24, 2008 7:07 PM ET
Day 273
Well, the knee still hurts, so we have an MRI scheduled for Friday. We’ll continue to rest and elevate this week. If it improves, we’ll cancel the MRI.
Matthew had pre-calc tonight and has Lit tomorrow. He’s had a full week of classes this week! I talked to the lady “downtown” today about getting the process started for his next series of classes. Unfortunately, it is quite a challenge getting this done, so I’m starting early…..again….sigh.
Today is a very special day. Today the best husband and Daddy in the world is celebrating his birthday! Happy birthday Greg…….we love you!
Don’t forget to keep praying!
Love,
Nancy and the Gang
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Thursday, Oct 24, 2008
Day 272
The knee pain is the same as yesterday from all reports…no better, no worse. He’s using the crutches but just being up and moving around causes the knee to hurt. We’ll see how things are tomorrow and then call to report in to clinic.
Yesterday’s Counts:
Hemoglobin: 11.8
Platelets: 182,000
WBC: 4,700
ANC: 2,914
His Igg level was 407. 400 is our cutoff for needing an IVig infusion. So, we eeked by for another 2 weeks.
His counts all look pretty good, so I’m trying to relax about this. (trying being the operative word here)
Tonight we celebrated Logan and Greg’s birthdays at Logan’s favorite restaurant……..LOGAN’s! I can’t figure out why he thinks that is so cool. Anyhoo, Grandma, Aunt Jen, Uncle Neal and Cousin Bryce all joined us for good food and even better company! If anyone sees Grandma around town, ask her about St. Bernadette! : )
Keep praying…….
Love,
Nancy and the Gang
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Wednesday, October 22, 2008 3:07 PM
Day 271
There are three things that should be given in lifetime supply form to all Cancer Moms.
1st:
A box of Imodium
2nd:
Lamaze classes (did you know they don’t give those anymore??)
3rd:
A bottle of Ativan
This morning I was busy working in my home office when my cell phone rang. I looked at the caller ID and saw it was Matthew calling. I was a bit confused as I thought he was up in bed sleeping. I answered and he said can you come up here? My heart sunk, my stomach clenched and I couldn’t breathe…or was that because I flew out of my chair and up the stairs in 2.2 seconds? I whipped open his door and saw him sitting on the side of his bed holding his knee. He knee hurt so badly he couldn’t put any weight on it.
Enter item #1……..go call clinic……after stopping at the bathroom….twice….
Call clinic…..enter item #2 …..deep breaths….calm….think of the stupid ocean waves rolling onto the stupid beach…..hee hee hoo hoo…..
Drive to clinic but stop at local lab first for labs (just to calm Mom’s nerves…or maybe make things worse??)….where’s the next bathroom??
Arrive at clinic, Dr O checks him out….hmmmm could be micro-fractures….could be AVN (avascular necrosis = bone death)…..could be hmmmm….. Enter item #3……what is the hmmmmmm….let’s hope for…………uh………micro-fractures?? Yah, let’s hope our kid has micro-fractures…nice Mom that I am……….
Go to radiology for x-rays…….PT comes checks him out ….fits him for crutches since our last crisis we had crutches for 5’2” and below…Matthew is now 5’7”. X-rays show no fracture. Hooray…….I think??? I honestly don’t know what I’m hoping for except for NO RELAPSE.
This crazy mind of mine goes right to that scenario every time….I can’t help it…..it just does….So, don’t email me….don’t suggest counseling like before….I deal with it the way I deal with it….I swear I’ll be 80 and still worry about every bump, bruise or ache that he has…….
Matthew is supposed to rest (hmmmmm, not much different than his normal day), elevate (gasp, how will he play his video games), ice (dang I forgot the peas when I ran into the store), and take ibuprofen for inflammation and pain. He is to keep his weight off of his knee until Friday. If it isn’t any better, we’ll schedule the MRI to rule out AVN or to see if there is any ligament damage going on.
Please pray for this to be something normal like a ligament whatever, for Mom’s sanity and for Imodium to go on sale…..
Love,
The neurotic Mom and the rest of her gang
Sunday, October 19, 2008 9:20 AM ET
Day 268
You know you are a normal teen when……..
You are out until midnight both Friday and Saturday night! Yes folks, that was my normal teen this weekend.
You know you are a normal teen's Mom when you are watching the clock until you hear that door knob turn!
Yup that was me, wide awake snoring away , pacing the floor, and checking the clock every 15 minutes.
You know you’ve had a transplant when….
Fed ex delivers their SUPER size envelope from the insurance company and it’s filled with EOB’s (explanation of benefits). GAG
You know you are surrounded with great people when……….
You have 88 volunteers all offering to help a young boy to smile during a bone marrow transplant!
You know you live in Indiana when……...….
It’s in the 40’s when you arrive at soccer in the morning and it’s in the 70’s when the big birthday party starts at 3pm! How do you dress these kids anyways????????
A picture says a thousand words when.……...….
Love,
Nancy and the Gang
Friday, October 17, 2008 8:26 AM ET
Day 266
It has been a crazy busy week in our world. But ya know??? It’s all crazy in a good way! It took a lot for me to notice that actually!
Brittany loved her 1st Christmas Choir practice. All of her “I won’t know anyone” worries were put to rest as we entered the doors of our church. I heard the shrill sounds of little 1st grade girls chirping “Brittany’s here… Brittany’s here”. I saw my daughter’s face light up as she happily skipped away with her friends. I had brought a book to read during her 1 hour practice, I think I read 2 paragraphs. I soon found myself enthralled with their practice. Our music director is very good and was actually teaching them technique. It sure brought back my choir days with Mr. Nick! Loved it!!
Logan’s soccer practice was rained out….literally. They only practiced for 10 minutes before the downpour of Noah’s Ark proportions hit. They all looked a bit like drowned rats!
Last night I zipped out to the hospital to meet the new Mr. Stant…..yes, Mrs. Stant finally had their baby. He was absolutely adorable. I even had the distinct honor of holding little Eli! It really had me thinking about how fast time goes. I couldn’t believe that almost 20 years ago I was holding Justin in my arms. Now he’s all grown up and way taller than I am. SIGH…..
After the joyful visit to the Stants (by the way it is way nicer visiting than chemo-ing at Lutheran), I zipped over to visit the Matriarch of the Roos Girls. Yes, everyone’s favorite…Debbie Roos had knee surgery yesterday. She was actually looking pretty good last night or maybe that was the TWO Vicodens! Today is supposed to be her “bad day” though…love it when they tell you all the fun you have to look forward too!
When I arrived home, I enjoyed a yummy enchilada made especially by Matthew. YUMMY!
Last night I picked up the Never Give Up cookbook that Matthew had used to get the famous Mrs. Black enchilada recipe. I was tearing up as I read all the dedications that were written. Not only are the recipes delicious but the love and support was heartwarming. If you bought a NGU cookbook, you might want to dust it off and read some of the wonderful words and make something extra yummy for your family this weekend!
Matthew has been busy with Pre-calc and American Lit. I guess he’s having some trouble with this particular section of Pre-calc. His teacher is very good, so I’m hoping they can work thru it together. I often wonder how much of Algebra 2 really sunk in. Matthew was going thru some really really hard chemo and fighting to get back into remission during Algebra 2. Hmmmmmmmm
Last night was the last night for Cyclosporin! Yeah! No more immune suppressing drugs! So, now his immune system can begin to rebuild! We are still on quite a few drugs but are slowly working our way down. Getting off the Cyclosporin was a huge step though, but medically and financially. That drug is the one that is $6,000/month..yikes! I still don’t understand how a teeny tiny little bottle of liquid can cost so much…..I think I should call Joe the Plumber to see if he can ask Barack or John!
Smiles for Kyle is moving along really well. We have a team of over 80 volunteers. I will be sending out details this weekend. So, be sure to watch your emails. If you don’t hear from me, please let me know…..I may have missed you. Thank you to everyone for being such kind and compassionate human beings! I can still use about 10 more volunteers, so let me know if you can help. If you’d be interested in being on the list twice let me know as well!
Well, I think that’s about it for now! Enjoy the beautiful fall day……God sure was an artist…he created such beauty.
Love,
Nancy and the Gang
Tuesday, October 14, 2008 10:38 PM ET
Day 263
Boy this week is flying by! We had Brittany’s soccer practice and Matthew’s pre-calc on Monday. Tonight, Matthew had American Lit. Tomorrow is Logan’s soccer practice and Brittany’s 1st Children’s Christmas Choir practice! Thursday, Matthew has Pre-calc again. And then it’s the big Logan is turning 9 sleepover birthday party extravaganza buildup. The buildup has been going for days now and the party isn’t until Saturday. It’s going to be a long rest of the week! I still can’t believe my Loggy Bear is turning 9. (do you suppose he’ll still let me call him Loggy bear when he’s turning 16??)
Matthew is feeling pretty good. His feet are still swollen. I’m not sure how long it takes the BP medicine to exit the system. Hopefully by the 1 week mark we’ll see some improvement or I’ll give Dr. O a buzz.
My secret Smiles for Kyle project is shaping up quite nicely. We 73 confirmed with probably another 10 possible. If you have left me a guestbook message or sent me an email and you haven’t heard back from me, please re-do…that probably means I’ve missed you somehow! For those of you that are officially on the list. I will be sending you some information very soon….so stay tuned!!
Keep praying and Never Give up!
Love,
Nancy and the Gang
Saturday, October 11, 2008 8:55 AM ET
Day 260
Last night was the big game in town. Bishop Dwenger (Matthew’s high school) vs. Snider (my alma mater)…..Both teams were undefeated…..both teams have excellent teams every year….both teams have family ties……oooo ahhh….such excitement. Well around 10pm Matthew calls me from the field shouting …”WE WON!! WE WON!!” The whooping in the background was so loud! How fun!! I guess Snider (the OTHER team) led the whole game but in the last 30 seconds of the game BD came from behind to win the big kahuna! Matthew said after the win, everyone stormed the field. He told me… “I’m sooooo tired now”. I asked him if he thought he could make it back to the car ok…he said “Yep!” Must have been pure adrenaline pumping at that point! After the game, he went out with friends to celebrate. OH MY GOSH, how normal does that sound. What a tremendous way to end such a high stress week. Thank you Lord! Matthew’s feet and legs were really swollen when he got home. I sure hope stopping the BP meds help that situation.
Ok, I’ve named my secret project “Smiles for Kyle”. For those of you that have already signed up (all 43 of you blessed angels), you know what the secret is! If you haven’t received an email with “the plan” and you emailed or left a guestbook, please let me know because I think I’m all caught up! I don’t want to miss an Angel in my presence you know! I’m busy planning and getting ideas together for those of you not so creative folks. So stay tuned! I need at least 17 more angels!! My friend from the wonderful St. Francis University thinks she might be able to round up some more volunteers. I tell you what that school has an amazing lady teaching there and some amazing students. As you may recall, the same lady brought an entourage of volunteers to the Light the Night Walk! Hooray! Lucy from Boston that signed Matthew’s guestbook kindly offering to help (and oh a bit curious too), all I need is your email address and you can become lucky number 44 on the Smiles for Kyle list!! So, either re-sign the guestbook or send me an email! Thanks!
Today is soccer day. It should be a beautiful day at the field. The trees are starting to turn color finally and the sun is sparkling! What a gift from God. So may gifts surrounding us every day…be sure to look around you today, enjoy the gifts and be sure to thank God for them all!
Today is also the big Ohio State vs Purdue game. The Roos girls are coming over for the big butt whoopin game! Of course I.U. is busy preparing for the basketball season…Although I heard something about being lucky to win 2 of THOSE games this year. Sigh….well I.U. still has one of the top rated Business Schools in the nation…go Kelley School of Business (another of my old alma maters)!
Time to jump in the shower to get ready for the big day of sports in the beauty of the world God has given us!
Keep praying and Never Give Up!
Love,
Nancy and the Gang
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Friday, October 10, 2008 2:55 PM
Day 259
We survived the day quite well! All of us are still partially sane! Matthew counts looked great. His hemoglobin dropped a bit but the rest looked pretty good. Dr. O said Matthew is looking good. He has a rash but Dr O doesn’t think its GVHD. We’ll be using the super-dooper steroid cream again to clear it up again.
The good news is that we are making some medicine changes. We’ll be stopping the BP meds since his BP was actually nice and low. We are also changing one of his meds from 3 times per day to 2 times per day. We have one more week of Cyclosporin and we’ll be done with that thank goodness!
Dr. O said that even with his cough his lungs sound nice and clear. All and all things looked good.
Now, if we could just turn this stupid economy around and make it look so good!
Yesterday’s Counts:
Hemoglobin: 11
Plates: 189,000
WBC: 4,600
ANC: 2,898
My new secret project for my friend Denise and her son Kyle is really shaping up. I’m looking for 60 volunteers for a fun, creative and low cost way to help! I’m already up to 30 volunteers! Now since I’m an accounting wiz…I’m here to tell you I need 30 more helpers! You can live anywhere in the world, so search your heart and if you can help, just email or leave a guestbook message. I’ll share the details with you then! Please consider helping me help a family facing a horrible crisis. Thanks everyone!
Love,
Nancy and the Gang
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Thursday, October 9, 2008 6:55 PM
Day 258 part 2
One of those Awwwww stories to share:
Brittany and Logan’s school save “Box Tops for Education”. It’s a great fundraiser for our school every year. Well, last spring they announced that someone had donated a boatload of Webkinz and they would be having a “Box Tops” contest in the fall. The prizes would be the very highly coveted Webkinz! So, all summer my little ones have been busy saving, clipping, talking Mom into sending mass emails, and going door to door to collect Box Tops. Well, fast forward to this fall…they FINALLY announce that the contest is starting….and then they announce the rules……gulp. I was sitting in my home office reading the rules when suddenly I groaned out loud. I then broke the bad news to Greg. The rules said that only 1st and 2nd graders can receive the Webkinz as prizes. 3rd thru 8th get to vote for either a “no homework night” or a “dress down day”. So, what is so bad you ask? Logan is in 3rd grade. So, I decided that we’d leave it up to Logan, we could split our hundred plus Box Tops in half equally or????? Well, I shared the BAD news with Logan who without a moments hesitation said “we will let Brittany take them all so maybe she can win a Webkinz”….all together now everyone “awwwwwwwwwwwww”.
Well that happened a few weeks ago. Tonight we were talking about how generous and kind that was of Logan. He beamed with pride. Later in the evening, Brittany says “Mommy, if my class wins the Webkinz, I’m probably going to give mine to Logan”. LOUDER THIS TIME…….”awwwwwwwwwwwwwwwwwwww”
This true little tale reminds me of that Christmas story about the young couple so much in love. She decides to get her loved one a watch chain for his prized pocket watch that he had his eye on for so long. They unfortunately didn’t have much money, so she thought and thought about how she could buy that watch chain. Meanwhile her loving husband wanted to buy his wife those beautiful pearl hair combs. He thought they would be so lovely in her beautiful hair. He thought and thought as well. Well, the wife cut and sold her lovely locks to raise the money and the husband sold his prized watch to raise his funds. A sign of true love……
hmmmmm I think my kiddos love each other….Gotta go…Logan is arguing with Brittany…………… wink wink
Love
Nancy
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Thursday, October 9, 2008 6:55 AM
Day 258
We had one of those “ships passing in the night” nights last night. Coaches Greg and Matthew and star soccer player Logan headed to soccer practice while pretty as a daisy Brittany and her worn out Mom headed to Daisy Scouts. Crazy night for sure! I *think* we all got something to eat last night??? Maybe???
Later that night I received a horrible call. A friend from Colorado called me. Her son and Matthew both went thru relapse protocols together. Denise and I leaned on each other through many scary and hard times. Sweet Kyle relapsed again. As we were talking it was all I could do not to sob or scream out in anger. I felt sadness, anger and utter disbelief that yet another child will have to endure a bone marrow transplant. My heart ached for Denise. As a Mom, finding out that the cancer is back and KNOWING what the next horrifying step will be….well, I just can’t even put it into words. Please stop and say a prayer for Kyle and his Mom Denise.
As I was talking to Denise about next steps and what to expect, it dawned on me that she could go to this journal. Go into history almost exactly one year ago to the day and see what might be coming down the pike. As we talked, the memories came flooding back. Things I had forgotten about suddenly seemed crystal clear. Memories of the pain, the nausea, the fevers, the devastation….all smacked me in the head.
I stand ready to help Denise and I have some ideas of a way we can help them when transplant gets closer. My idea is very little cost but lots of creativity, so if you are interested in helping me help them, leave me a guestbook message, send me an email or call me. I remember how important all the support was for Matthew and I was…many of you reading this journal were a huge part of our support. So, if you can spare a few minutes to help, please let me know!
Labs are today. Please pray that all looks good. Matthew showed me his feet last night. For some reason they are very swollen…top of the list item for tomorrow’s appointment. Please keep Matthew in your prayers and after all that praying I’ve just asked you to do…if you can please say a prayer for my sanity. Thank you!
Love,
Nancy and the Gang
Tuesday, October 7, 2008 7:41 AM ET
Day 256
We had a great weekend and a pretty good start to our week. Matthew’s Pre-calc teacher had to cancel last night due to a death in the family but he has Lit tonight. I think tonight is his big power point presentation…hmmmmmmmm maybe I could sell tickets!!
Matthew is feeling pretty good these days. Yesterday in fact, he ate 3 pretty good meals, including breakfast. That was a first in recent history! Stamina building continues to be a challenge but he’s doing pretty well at that too. He just tires out pretty easily. Labs are on Thursday and a checkup at Lutheran on Friday. We’ll be discussing his meds to see if we can possibly drop any additional meds. Friday will also be another taper day for Cyclosporin and hopefully it will be our LAST taper day!!
They are still entering donations in Indianapolis but it appears that Team Never Give Up raised approximately $6,200! Yahoo! You guys rock! Thank you to all that collected, donated and most importantly walked with us! Our team is amazing!!
I also wanted to thank those of you that have been attempting to help me muddle thru our CNS relapse crapaversary. I really do try to focus on today...(I still am not able to get to the future part). Most days that's what I do...marvel at today...marvel at the gifts from God...marvel at our little miracles that we receive daily...marvel at the fact that Matthew is here and is doing well.....but.......there are a few days that make me pause, that make me cringe, that make the bad memories flood my brain. I guess acknowledging them for what they are.....crappy, scary, awful days...helps me deal with the emotions and helps me get back to .......TODAY!
Keep praying!
Love,
The Fab Five
Saturday, October 4, 2008 11:44 AM ET
Day 253
Matthew went to the BDHS Homecoming game last night! He was all bundled up since the weather turned cold this week. He said he had a good time and he enjoyed seeing all his friends from school!
We headed out this morning bright and early for soccer pictures and soccer games. It was 38 degrees out! Brrrrrrr. By the time Brittany’s game was over it was 50 degrees. Suddenly 50 felt warm….it’s all a matter of perspective. Both of the kiddos lost their games, but Logan did score a goal!
Matthew isn’t feeling well at the moment so he’s resting in bed. He is supposed to have English class today but if I can get a hold of his teacher, we might have to cancel. I think he might have overdone it between last night and this morning.
We go for labs on Thursday and a checkup on Friday at Lutheran. Friday will be a tough day emotionally for me. October 10th one year ago was the day we confirmed his CNS relapse. I can remember every mila-second of that day. Sometimes that date seems like a completely different lifetime ago…sometimes it seems just like yesterday. When I really stop to think how far we’ve come in a year it almost blows my mind. I know we will muddle thru the day and it will pass just like any other day….but I know I’ll pause more than once to thank God for watching over us the past year.
Keep praying!
Love,
Nancy and the Gang
Thursday, October 2, 2008 5:04 PM ET
Day 251
After the cold made its rounds through our family, it finally hit our immune suppressed one….yes, Matthew has the cough. Hopefully, his immune system will kick in enough to get rid of it. Eating is still not very good but the tummy pain is gone and so is the nausea. We taper the Cyclosporin again tomorrow. We are in the home stretch!
We are still waiting for a Team Never Give Up total. I’m still buzzing from the excitement!
Matthew has been keeping busy with Pre-calc and American Lit. He has been working on a power point presentation for Lit. It was looking nice the last time he showed it to me. He took his first Pre-calc exam and did pretty well on it. He is also keeping busy as the assistant coach for Logan’s soccer team. The rest of his time has been spent recovering. He still tires very easily and his appetite stinks but overall he’s doing very well.
Brittany and I are getting our hair done tonight! It’s always nice to get a good spruce up now and again.
Keep praying and Never Give Up!
Love,
Nancy and the Gang
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Monday, September 29, 2008 9:04 PM
Day 248
Tonight I took Brittany to soccer practice. I was chatting with another Mom. We both bring our books to read every week but instead we end up jabbering the entire hour. Tonight we started talking about the economy and the whole bailout topic. That conversation branched off into about 10 different directions. Unfortunately, all the topics were scary, sad or seriously depressing. At one point we both said how much we hate to watch the news anymore. It’s all bad news it seems. We paused, both feeling pretty down. She said something about falling back on our faith. That sparked another more hope-filled conversation. Then after a few minutes, I looked up and saw the most beautiful rainbow. I joyously pointed it out to Sarah. We both stared in awe at the gift from God. God’s message of the day to us both……….never give up hope…….I am with you.
We are still recovering from the big walk last night. We are still receiving donations! I have it on good authority that Fort Wayne has raised more than $80,000. Isn’t that amazing?!?! I’ll share our team and the Fort Wayne total as soon as it becomes official. Thanks again to everyone that helped us make the walk such a big success! I forgot to mention last night that our wonderful Youth Group came to the walk last night with 9 teens, Miss Johns and Mrs. Digan and a few other helpers! They brought us a truly amazing donation as well! Thank you St. Charles Youth Group!
Matthew’s feet are still swollen but his legs look better. He is enjoying the Steelers game with his feet elevated!
Take time to look for the rainbows in your life…..there is always hope….never give up…never give up hope…..
Love
Nancy and the Gang
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Sunday, September 28, 2008 9:34 PM
Day 247
Wowzer….the walk was a huge success!! Our location’s goal was $64,000 and at last count we were at $75,000! Yeah!! Team Never Give Up won the Top Friends and Family award again this year. Our team ROCKS!! It was so wonderful to see all the people sitting out on the lawn eating tacos together. Then we all crowded together, all 80 plus for a group picture! It really almost made me cry! I can’t thank everyone enough for coming out to raise awareness and to support Matthew. I can’t thank enough, my two wonderful friends, Doreen and Sally, for driving all the way from Indianapolis to join us at the walk! I just have the bestest, most wonderful friends!
Here is the Black Family……..all sporting New York Yankee gear. Our friend Sean (from guestbook fame) donated a whopper of an amount to Mary’s fundraising page and in honor (ok he made them do it) of Sean they all came decked out in Yankee gear!
Aunt Jodie, Uncle Tony, Karlee and Kendra’s knees………..
Mommmmmmmmmmmm, do I have to pose again???
My friend Kristen, who brought 15 of her nursing students along to help. We had the most wonderful lady helping us at our table!! Go Cougars!
The Fean Family……..we love you guys!
Debra and Logan busy tallying up one of the team envelopes…it’s always nice to know an Accountant!
Justin loves his Grandma……..and Aunt Jen can’t avoid the camera THIS time….Isn’t Justin handsome??? 
Justin and Moi………
Matthew and pal Ryan……….Yes Matthew actually did the walk with everyone…a true survivor!!!!!!!!!!!
Hey, there’s our hero with Sally………
My family……….I love you guys so very much!!
Matthew did so great tonight. I was worried he might not have the energy to make the loop. But in true Matthew Never Give Up style....he did it! His legs and feet are very swollen now. Hopefully, they'll deflate by morning. He is my hero!
Thanks to everyone who walked with us tonight, who were with us in spirit, who raised money and everyone that donated! Team Never Give Up was a strong force full of people who really care!
Love,
Nancy and her wonderful gang
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Sunday, September 28, 2008 8:34 AM
Day 247
Today is Light the Night Walk Day! We are so excited! My best estimates show our team to be at 92 walkers. Early reports show us over $5,000! I have my list of “stuff” I need to bring all ready. My camera battery is all charged up. We are ready to go! Team Never Give Up is ready to go! Go team go!
Yesterday was a soccer day for us. We left the house at 7:45 and didn’t get back home until 5pm. We were all exhausted and sunburned. Ok, maybe it was just me! We all had fun and really enjoyed spending the day together. We are thankful for every day that God has given us. We are so thankful for every day we are all together.
Keep praying!
Love,
The Fab Five
Thursday, September 25, 2008 4:47 PM ET
Day 244
What a beautiful fall day today has been. Things are going along pretty well this week. I ended up catching Brittany’s cold and it sounds like Logan might be next. So far so good with Mr. Matt though! Hopefully his immune system is starting to work pretty well these days.
We continue to taper the Cyclosporin per the taper schedule. Tomorrow is another taper day. If thing continue to go well, we should be done with the Cyclosporin in 3 more weeks. Yeah!
Matthew’s tummy issues seem to have calmed down. He is off the Zofran and the Carafate and seems to be doing quite well. He still eats like a bird but the nausea and pain is gone.
Labs look overall pretty wonderful! Thank the Lord. I have a few questions on some results and the clinic is closed for the day.
Today’s Counts:
Hemoglobin: 12 (normal 13-16)
Platelets: 191,000 (normal 150,000-450,000)
WBC: 4,800 (normal 4,500-13,500)
ANC: 3,043 (normal >1,000)
Did anyone notice that his counts are all in the normal range! This is a first since his relapse last October! Hooray!!!
Team Never Give Up has been very busy this week. We have 65 walkers joining us on Sunday. We have reported in over $4,200! I would just LOVE to beat $5,000! It’s not too late to donate. Click on the 2nd link below! The walk is Sunday night and the weather is supposed to be good! We would love to see you there. If you would like to join us as we show our support for Matthew, please let me know. You can email, leave a guestbook message, or call me! We’d love to have you…..oh they are having TACOS!!! (food usually works if nothing else does!)
Keep praying!
Love,
The Fab Five
Tuesday, September 23, 2008 4:30 PM ET
Day 242
Guess what? Tomorrow will be exactly 8 months since Matthew received the beautiful gift from his donor. WOW. Matthew has come such a long way since his relapse in October. Each day, I can see him getting stronger and starting to venture out of our little cocoon a bit more. I think of our wonderful donor so often. I hope she is doing well, I hope that she somehow “knows” how well Matthew is doing, I hope that at the one year mark we can somehow “meet” her.
Matthew is busy with Pre-calc. He has a bunch of homework to do between classes and will have his first exam on Wednesday. I sit in my office doing my work while he and his teacher work on his Pre-calc. My head starts to spin just listening to them HA! Matthew also has a project for English that he has been working on in Power Point. So, he is finally getting deep into his class schedule.
Team Never Give Up is up to 60 walkers now and I believe we have over $4,100 reported in! Go team go!! You can donate by clicking the link below!
Keep praying!
Love,
The Fab Five
Sunday, September 21, 2008 10:45 AM ET
Day 240
We had a really busy day yesterday. Coach Greg and Coach Matthew started our day off bright and early with Logan’s soccer game. They didn’t win but they are starting to play more like a team and I think they are having fun! After the game, Matthew’s stomach started to bother him so I ran him home while Greg stayed for the start of Brittany’s game. The Roos girls joined the cheerleaders on the side line for lots of loud cheering support for both Logan and Brittany’s teams. Unfortunately, Brittany’s team didn’t fare any better. But fun was had by all.
Then we went to Cardinal Fest. It was lots of fun! We hung out for several hours and then headed home for to eat since we couldn’t eat the festival food because of Matthew’s food limitations. We just hung out for the rest of the evening! Relaxing was the name of the game last night.
Matthew has a rash developing on his neck and I’m not exactly sure what it is. We brought out the tub of steroid cream that has been collecting dust for the past few months. Today, it looks somewhat better. We’ll be lathering cream and watching closely for the next few days. If it doesn’t improve it looks like we’ll be visiting Dr. O.
Matthew’s tummy issues are not as severe anymore but he still isn’t eating a whole lot. He’s lost about 11 lbs since the eating issues came up. I’ve been noticing that he is looking very thin lately. For awhile I thought it was just de-steroiding but I think he’s just not eating enough.
We are in a semi-quarantine mode around here. Brittany has a cough. Usually not a big deal for most ….but………so we are trying to keep Princess B busy in her room as much as possible.
Team Never Give Up is busy in the home-stretch week. We have 55 walkers now and our tally is over $3800 reported in. Let’s go team!!
Keep praying and Never Give Up!
Love,
The Fab Five
Friday, September 19, 2008 4:00 PM ET
Day 238
Matthew is having a “feel good” day. He isn’t eating large amounts but he is eating something at least twice a day. He has English class this afternoon. He has been busy reading stories and writing a paper and doing some worksheets this week for the class. He also has a large amount of Pre-calc homework. I just LOVE seeing him do homework…how normal…how wonderful…how teenage-ish…how mean of me???!!!
We will be going to Lutheran monthly and Cincy every 2 months now. I find that to be very exciting! We’ll still do labs every 2 weeks for now just to be sure everything is looking good!
Our school’s festival is this weekend. Tonight they are having fireworks to celebrate our church’s 50th anniversary! I love fireworks!! Tomorrow afternoon there are games, food and activities all afternoon and a beer tent at night. I am volunteering at one of the games…the penny drop….so come see me if you are going to Cardinal Fest!! I haven’t talked Greg into the beer tent yet….sigh!
Team Never Give Up has 51 walkers and the tally is over $3,500! We are moving!!
Have a great weekend everyone…hugs your kids….do something nice for a neighbor….thank God for all your blessings!
Love,
Nancy and the Gang
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Thursday, September 18, 2008 4:59 PM
Day 237
All is good in our little corner of the world. Matthew’s having intermittent tummy issues sorta like intermittent thunder storms if you know what I mean. He has been busy with homework, coaching soccer and reading some books for fun!
How about this for exciting news……..
Dr D (in Cincy) says she doesn’t need to “lay eyes on him” until November 15th! Yahoo!! We really miss our pals in Cincy but this means good things for Matthew! I need to call Lutheran tomorrow to discuss our next appointments here in Fort Wayne and lab schedules. All good stuff
Team Never Give Up has 50 walkers and has raised $3,300! We are in the homestretch with only 9 more days till the walk. If you have any cash or checks in your possession, please let me know. I need to make arrangements with you to get it turned in by Wednesday. If we can’t meet up, let me know your cash/check totals and you can bring it on Sunday.
Don’t forget to ask your company representative if they do a matching program! You get credit for double and it raises double the money for Light the Night!
The walk is at the same location as last year. Lutheran Hospital in front of the Cancer Center. The program starts at 7pm and the walk starts at 7:30 pm. The “doors” open at 5pm though, so come early to get registered, eat yummy food, enjoy the entertainment and hang out with the team! If you have any questions be sure to let me know!
It’s not too late to join our team by the way and it’s not too late to donate!!
Time to run……
Keep praying and Never Give Up……
Love,
Nancy and the Gang
Tuesday, September 16, 2008 6:50 AM CDT
Day 235
Matthew had some tummy issues yesterday but still made it to “school”. He had his 2nd pre-calc class yesterday. It sounded pretty grueling to me. He has lots and lots of homework to do as well. He’ll have his 2nd English Lit class on Friday. I heard terms such as “power-point presentation”, “papers”, “ vocab & grammar” etc. The funny thing was that all the Junior year books he mentioned as being on his list for Matthew to read, he had already read in Honors English his Freshman/Sophomore year.
I’m in a weird state these days. I’m having long conversations with myself actually. This time last year, I was so incredibly busy with Matthew’s OT party, my speech at the Camp Watcha Wanna Do Fundraiser, and the Light the Night Walk. I was busily and happily rushing thru the month, still in the Matthew is done with chemo glow. I had no idea that a train called RELAPSE was heading my way on the same track. Less than 3 weeks after Matthew’s big Off Chemo celebration that train wreck happened. The headaches started the first of October and the CNS relapse diagnosis came 10 days later.
So, the conversations I’m having with myself go something like this…”Nancy, you have to live for today and not worry about trains coming your way” BLAH BLAH BLAH “you are doing everything possible to keep Matthew healthy, you are getting his labwork done and having his checkups done” BLAH BLAH BLAH “you can only do so much, you are praying and you are having faith that God has it all under control, so much of this is out of your control…let God take care of it” hmmmmmmmm “Just because he was originally diagnosed in November, he relapsed the 1st time in December, he relapsed the 2nd time in October, does not mean the last quarter of the year has any significance…so quit worrying” BLAH, hmmmmmmm, Blah, Hmmmmmmmm.
Yup, those are the insane conversations this particular cancer Mom has with herself on a daily basis. Those conversations and prayers are what keep me looking somewhat sane on the outside. If you all only knew……mmmmmooooaaaahhhhhhhhhh (that is my evil and somewhat insane sounding laugh).
Team Never Give Up now has 49 walkers and has raised$3,250. I sure would love to see our team over 50. 50 lit balloons all walking to support Matthew. Matthew who has been thru so much in the last 8 years. Please consider spending a few hours to support Matthew. Even if you donate $5, I know it would mean the world to him just to have you walking beside him.
Keep us in your prayers……..we sure could use them now and again!
Love,
The slightly insane Mom and her fantastic family!!
Saturday, September 13, 2008 10:23 AM ET
Day 232
CHANGE:
Life is all about change. The key is successfully accepting change, adapting and adjusting as you go along. Our big change came as a complete shock to us. We found out yesterday that Dr. B has left Lutheran Hospital. It all happened very fast and I don’t know anything other than she is gone. So, we adapt to yet another change in our medical care. We’ve been doing this cancer thang so long now that we are pretty used to numerous health care professionals. The good news is that we know Dr. O and so that adjustment shouldn’t be as monumental as some changes.
NOAH’s ARK PLEASE???:
This morning Brittany had soccer. She played valiantly in a complete downpour. It rained buckets the entire time. It wasn’t the most comfortable game of her short career. I kept thinking of all the folks in Texas and the rain and wind they are dealing with, so the wet, soppy downpour I was sitting in suddenly didn’t seem as bad. We have an hour break and then we head back for Logan’s miserably wet, soppy and chilly soccer game.
FEELING GOOD:
Matthew is feeling pretty good these days. Dr. O said he is looking great! We are so thankful! His English Tutor is coming this afternoon for English class. Hopefully, he’ll be all dried off after coaching soccer!
Love,
Nancy and the wet, soppy Gang
Thursday, September 11, 2008 7:18 PM ET
Day 230
Lots of good news to share!
First, Matthew is feeling pretty darn well these days. I said to him last night “it seems like your stomach is doing better, huh?” To which he replied “yes, actually it is”! Hooray! He is still taking 3 different medications to help with the problem but at least he is taking the 3 meds and we are finally seeing some positive results!
Second, Matthew’s labs looked good again this week. His creatinine is still a wee bit high but much better than a month ago. Things seem to be pretty stable in the count department! Thank goodness.
Third, Team Never Give Up now has 43 walkers! How cool is that? 43 people walking to honor Matthew!
Fourth, Mom had a FANTABULOUS time at the American Idol Live concert last night. Thank you Debbie for the wonderful gift! David Cook is even better live!!
Today’s Counts:
Hemoglobin: 11.5 (pretty consistent)
Platelets: 179,000 (slowly creeping upward but very much in the normal range)
WBC: 4,300 (just a tad under normal but still very good all things considered)
ANC: 2,674 (pretty darn good for some who is immune-suppressed)
All and all today was a day that we give thanks! Thanks to our Lord for so many blessings!
Love,
Nancy and the Gang
Tuesday, September 9, 2008 7:18 AM ET
Day 228
Matthew had his 1st Pre-calc class last night. It was 2 hours of review basically of the things he learned in Algebra 2. It sounded pretty foreign to me. It’s amazing what you forget when you don’t use it anymore! I think after the 2 hours, he was pretty worn out but I think he felt good about getting back to school. He starts English on Wednesday, hopefully that won’t be as exhausting!
Matthew’s Math teacher was a bit nervous about coming over. I had told him on the phone last week, a bit about Matthew’s history with cancer, relapses and the BMT. I think he had this picture of Matthew being bald, frail, in a bed with an IV pole. He told me he was a little nervous but that he prayed about it. He said he felt VERY comfortable now after seeing and meeting Matthew. Watching that whole human transaction unfold once again pointed out to me how well overall Matthew is really doing. He has a full head of dark hair, he is definitely not frail and he is riding bikes, coaching soccer and going to school (well sorta). He has come such a long way and has done so with style and grace.
Keep praying,
Love,
Nancy and the Gang
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Saturday, September 6, 2008 3:18 PM
Day 225
And you thought the suspense for the selection of Biden and Palin was exciting…..wait till you hear this big announcement.
Greg is Logan’s soccer coach again this season. He has been busy working on the roster, practice schedules, playing schedules, snack schedules and getting to know the team. He hadn’t said anything about his assistant coach….until last night….the night before the first big game….and the question was posed…..and the answer was an immediate YES!
The new Assistant Coach of the San Francisco U10 Soccer team is……….
None other than…………
MATTHEW!!!!!!!!!!!!!
Team Never Give Up is growing! (Must have been my offer to dance?? HA!) We are up to 38 walkers. We have raised over $2,800! Yahoo!
To join click on the “blue” link located just a smidge below:
Team Never Give Up!!!
To join Team Never Give Up:
1. click on the above link.
2. Select “join team”.
3. Search by “team captain name”
4. Enter my name “Nancy Vinson”
5. You should see Team Never Give Up
6. Click “join”
7. any questions, please email me!
If you can’t join us, you can still help by making a donation. Just click on the 2nd link way at the bottom of this site……
Thank you for any support you can give!
Keep praying and Never Give Up!
Love,
Nancy and the Gang
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Friday, September 5, 2008 9:41 PM
Day 224
The back hurts, the tummy hurts, the head hurts and a sniffly, stuffy nose……….sigh.
Did anyone watch Stand Up To Cancer tonight? I’d be interested in hearing your thoughts! Email me or let us ALL know in the guestbook!
Tomorrow will be an incredibly busy day for us. Brittany has soccer at 9am. We have zoo day and lunch catered by Casa (YUM) thru Cancer Services at 11am. Then we have to race back for Logan’s soccer game at 12:30. Yikes! Naptime afterwards is sounding mighty good already!
Team Never Give Up is starting to rustle around a bit. Over the past few days, I’ve had a few “yes I’m going to join’s”, a “we are rolling it out to the Youth Group on Sunday”, an “I’m checking with my employer about an idea” and a “how to I sign up again?”…..sounds promising to me!
Also, I spoke with the walk director (hi Kate) about some of the fun things in the works for this years walk. A few things she mentioned are……face painting, Mexican food by Moe’s (yeah, no icky hot dogs this year!!), a DJ (anyone want to come dance with me?? Join the team and I’ll see what I can do), Info booth by our wonderful Peds Hem-Onc staff, and the most exciting thing…..the Indiana Blood Center will be doing FREE mouth swabs…. FREE I said FREE mouth swabs…. to get you signed up to be on the National Bone Marrow Registry….Oh my gosh, it is worth the drive to the walk just for this huge honor!! Kate is still working on some other things for the event, so I’ll keep you posted when I find out more.
Today I had lunch with a wonderful lady by the name of Kristen (hi Kristen). Kristen is an instructor at St. Francis College here in Fort Wayne. She has asked me to come speak to two of her pediatric nursing classes this fall. I’m honored to speak and anxious to be a small part in the process of learning for these students. I hope to share not only a bit about our journey with pediatric cancer but also my experiences with the many nurses we have taken care of us over the past 8 years. Each one has been such an important part of our journey toward the prize…….a cure. I really want to express to these students how life altering their job can be to a family with a sick child. Family and us, both are important words….when a family has a traumatically ill child, the whole family is affected,…the whole family needs support…the whole family needs a shoulder to cry on or a hug during a meltdown. I have a lot to say, can you tell? Anyhoo, lunch was delish and also my first Thai food experience. You get me talking about cancer, sick kids, family dynamics in a cancer family, medical professionals and my crazy family…..well I can monopolize a conversation pretty darn well. Hopefully, Kristen’s ears are clanging too much tonight.
Well, I’m off to lay out oodles of medications……Where oh where is my superhero cape when I need it??????????
Love,
Nancy and the Gang
Thursday, September 4, 2008 7:52 AM ET
Day 223
Sorry to keep you hanging in suspense about the lab results from yesterday. For some reason I’ve been just plain ole exhausted the past few days. While Greg took Logan to soccer practice last night, I went upstairs to take a nap. After dinner, I zonked again on the couch. Sooooo, this Mama Bear must need some TLC and rest.
Anyhoo, on to the scoop on our hero…Believe it or not, Matthew’s counts looked fantastic. I was especially happy to see his creatinine and BUN were both normal. His platelets were very much into the normal range! Hooray!
For now, we are adding Zofran round the clock instead of “as needed” to help with the nausea. Hopefully, that will help calm things down tummy-wise so Matthew can resume eating and drinking. We are also going to try to see the Pediatric GI doctor here in town. Now that we know it’s not GVHD I feel comfortable seeing a local GI specialist.
So, on to nagging and resting this Mama Bear shall go……..
Today’s Counts:
Hemoglobin:11.1
Platelets: 173,000 (Yahoo!!)
WBC: 6,100 (very nice indeed)
ANC: 3,874 (gotta love this number too!)
Matthew starts Pre-Calculus on Monday with his home-bound tutor. I am still waiting to hear from his English teacher. I tell you what; this whole home-bound schooling stuff has been a challenge. I seriously question how this whole thing is set up and how it is being run. I’ve been frustrated since July. Regardless, we are moving forward.
Team Never Give Up is holding steady at 32 walkers and $2795.00 in donations. We are a bit over 3 weeks away from the walk, so if you haven’t joined our team, began collecting or donated, please consider doing so today! I hear the walk should be lots of fun this year!
Keep Praying and Never Give Up!
Love,
Nancy and the Gang
Tuesday, September 2, 2008 6:28 PM ET
Day 220
We need to find a Tummy Fairy to come sprinkle some magic tummy powder on Matthew. He just cannot eat or drink very much. We’re getting labs done tomorrow to see how his creatinine and BUN numbers look.
This is so frustrating.
Love,
Nancy and the Gang
Sunday, August 31, 2008 9:54 AM ET
Day 218
We are home safe and sound. We were both pooped from our latest adventure. Matthew is still experiencing eating issues. His surgery site feels much better today.
Brittany and Logan are going to a water park for a day of fun with their friends, Sam & Rose (and their parents).
Summer is definitely winding down!
Don’t forget to donate! Team Never Give Up is currently at $2,770! And we gained another walker!
Keep praying!
Love,
Nancy and the Gang
Friday, August 29, 2008 6:35 PM ET
Day 217
The C-line is out, gone, kaput! Surgery went well. Matthew has been so nauseous all day though. They started an IV in his hand and the fluids infiltrated into his hand. It’s now pretty bruised, puffy and sore. His chest is tender but he says the hand actually hurts worse. We are back at Arcadia and Matthew is in bed watching some TV.
I picked up all of Matthew’s meds for the month. I almost needed a shopping cart to get it all out to the truck. It’s amazing how much medication he is still on.
We’ll sleep in tomorrow and then head back home for the rest of the holiday weekend.
Thanks for the prayers!
Love,
The Dynamic Duo
Thursday, August 28, 2008 8:38 PM ET
Day 216
Hello from sunny Cincinnati! It took us forever to get here. Lots of traffic, lots of construction and lots of police busy radar-ing holiday travelers. Can anyone explain why if the speed limit is 65 and a policeman is doing the radar-thang that everyone has to slam on their brakes and start to drive 55 mph? If you everyone would just drive the speed limit like ME things would be a lot easier. Crazy people.
We started our check up with a temperature of 100. AGHHHHHH…We checked it later and thankfully it was closer to normal. All we needed was a temp of 101 to land us inpatient and a cancelled surgery. Matthew’s legs and arms were completely pink and covered with a bit of a rash. Dr. D said it’s not GVHD so we all said “hooray”. Matthew’s tummy has been giving him fits since last night. He’s been nauseous and unable to eat again. GROWL. I think that everyone is stumped. All and all we decided Matthew is just being Matthew by doing his own “thing”.
Matthew’s creatinine and BUN are both up again, which is pretty much expected since he’s not able to drink much again. So back to harping I go……..
His other counts all look great though! I am breathing much easier this week. Hooray!!
Today’s Counts:
Hemoglobin: 11.5 (not too shabby)
Platelets: 151,000 (how awesome!)
WBC: 4,500 (fantastic)
ANC: 2,660 (Love it)
We are all settled into our room here at Arcadia. It’s kind of like our home away from home! We love our friends here at Arcadia.
Tomorrow we have to be at outpatient surgery at 11am and his surgery is at 1pm. Please say a prayer that all goes well.
Love,
The dynamic duo
Wednesday, August 27, 2008 5:00 PM ET
Day 215
Matthew’s lab results looked FANTASTIC! His kidney numbers are back to normal and his counts are all back to the “Mom is breathing better” range. As long as he takes the new medication prior to eating he is able to eat pain-free. Today, he forgot and he was not able to eat again.
I’m still waiting to hear if the biopsy results are back yet. I’m assuming all is ok but want to hear the official “A-OK”.
We leave for Cincy in the morning for his monthly checkup with Dr. Davies. Then on Friday, he will have his central line surgically removed! We will be staying at Arcadia and coming home on Saturday. I wanted to allow him some recovery time prior to making the 3.5 hour trip home. We are both very excited to get the line pulled. It is a huge step towards normalcy. I sure won’t miss the flushing and dressing changes or the risk of infection!
Monday’s Counts:
Hemoglobin: 11.1
Platelets: 143,000
WBC: 2,700
ANC: 1,628
Team Never Give is stuck at 31walkers but the good news is that we are raising our total! We are now at $2,670.00. If you are planning on walking, be sure to email me so I can sign you up! Or you can sign up yourself or donate by clicking the links below.
Keep praying……
Love,
Nancy and the Gang
Monday, August 25, 2008 9:47 PM ET
Day 213
Somebody didn’t fax the lab results to me today so I don’t have the results…grumble growl. I don’t know why the lab has all these “issues”. Matthew ate pretty well today but had some nausea late in the day. All and all he seems MUCH better than last week!
I went back to the eye doc again today. My left eye is pretty much healed. My right eye is pretty much back to when I first started having trouble. I’m seeing 20/60 with my contact in and 20/100 with my glasses. GROWL. We are trying two new drops and trying to rest the eye as much as possible. That is a seemingly difficult thing to do…….but I’m trying.
Team Never Give Up has stalled at 31 walkers. If you are able to join us at the Light the Night Walk, please email me so that I can get you signed up on the team. If you can’t join us, please take a moment to make a donation. Any amount will help us reach our goal! We are currently at $2,595.00 so we are a bit over ¼ of the way to our goal! Please help!
We had the Roos girls over for dinner and some fun. We had some Sing Star fun after we ate…..some of us are better than others of us…..not naming any names here…….Send my your $20 and I’ll be happy to share details LOL
Kim serenading her Mom………
Brittany dancing to Lauren’s rockin and a rollin………..
I’m not sure what Deb is thinking of Matthew and Kimmie’s duet…… but how about that studly new haircut Matthew is sporting???
What ARE you singing dear???
Always lots of fun at one of our Game Nights!! Psst……..I’ll even fess up for $10 buck!
Keep praying and Never Give up….
Love,
Nancy and the Gang of rock n rollers
Sunday, August 24, 2008 10:59 AM ET
Day 212
I think yesterday was a pretty good day. Matthew is eating a bit more but the good news is that it is pain free to eat now! He hung out with his friend Zach and then they both went to his friend Kourtney’s surprise birthday party. Yes, you read that correctly. He went to a party….away from me….kinda like a normal teen! It was held mostly outdoors so I felt ok about that. We still have restrictions on indoor events but outdoors is ok.
Home health care is coming tomorrow for labs to check his creatinine level and his blood pressure. Both were high when they released us on Friday.
Keep praying!
Love,
Nancy and the Gang
Friday, August 22, 2008 8:49 PM ET
Update #2
We are home!!!!!!! Boy is it good to be back! Matthew is pretty pooped and is already in bed.
Thanks for all the prayers and support!
Love,
Nancy and the Gang
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Friday, August 22, 2008 12:49 PM ET
Day 210
The internet has been down all morning so I couldn’t update. Lots of good news to share down here….they are going to release us some time today. He is getting all of his antibiotics in to keep him safe. Matthew’s BP was sky high yesterday and last night, so they have started him back on BP meds for now. Second, Matthew has eaten a bit this morning and was pain free thanks to the new medications! Yeah!! Third, Matthew’s counts look somewhat better today, so I’m breathing again!
Today’s Counts:
Hemoglobin: 11.5
Platelets: 98,000
WBC: 2,400
ANC: 2,090
Creatinine: stubbornly still at 1.4
Hopefully, we’ll be sprung soon and can be back on our way home!
Love,
The Dynamic Duo
Thursday, August 21, 2008 7:01 PM ET
Day 209 Update 2
Mission accomplished…the scope is all done and we are back in the room. The GI doctor said he saw why Matthew was having the discomfort. He has a bad case of gastritis. He showed me the really cool pictures of the inside of Matthew. Then he showed me the picture of the stomach that was covered with little red spots. He said Matthew’s stomach was really cramping while they were scoping so he said he could understand why he was having such discomfort. They prescribed a medicine called Sucrolfate to help coat the stomach. This will hopefully allow it to heal and him to eat in the meantime. He is already on Previcid so that will continue.
They took lots of biopsies, one of which will rule out GVHD. They also tested for H. Pylori which is a bacteria that can cause this condition. If the test for H. Pylori comes back positive they will prescribe some antibiotics. Hopefully, all the tests come back fine and we can get this calmed down so he can eat again.
We have to stay overnight because he needs at least two more post-procedure IV antibiotics. Since he is immune compromised they are taking extra care since biopsies were done in a not so “clean” area of the body. So, hopefully we will be heading home sometime tomorrow afternoon!
Matthew’s counts continue to drop and dropping counts freak me out. Hopefully, it’s just a blip on the radar screen.
Counts for the past 3 days:
Hemoglobin: 11.5 (Th), 10 (W), 10.2 (T)
Platelets: 93,000 (Th), 111,000 (W), 114,000 (T)
WBC: 1,600 (Th), 1,900 (W), 2,800 (T)
ANC: 910 (Th), 1,140 (W), 1,790 (T)
Creatinine: 1.4 (Th), 1.4 (W), 1.6 (T)
Matthew is snoozing so I'm going to find some food and a DDP! I'm starving...this NPO stuff stinks HA!
Thanks for the prayers, emails, guestbook messages and phone calls!
Love,
The Dynamic Duo
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Day 209 update 1
No alarms today! Hooray! Matthew slept very well. Mom, on the other hand, couldn’t sleep. I read until 3am! I can’t tell if it was from the chair/bed thingie starting to wear on my stinky back, laying here thinking of all the “what ifs” that might be wrong with Matthew stomach, or maybe it was the gallon of diet coke I drank yesterday….hmmmm…
Did I mention that we are on the hem/onc side of the 5th floor since the BMT side is full? Well, being over here has its perks that’s for sure. For one, Mom can eat or drink in the room. Well since Matthew is NPO I don’t eat but I do drink and drink and drink…if only one of those diet cokes were a margarita maybe I could have slept. Second perk is that we can shower in the bathroom right here in his room. Well, that would have been a good thing because as you might recall the swamp land type shower from our January days. The only problem was that there was no hot water here in the room….hmmm swamp or cold …swamp or cold…. The third perk and by far the most important in my book is that we can use the toity in the room! And trust me after the two gallons of pop that is a huge perk!
The GI doc stopped by this morning whilst I was freezing in the shower and told Matthew that today he is first on the “stand by” list (unlike yesterday’s third) so there is a slight possibility the scope may happen today. (insert growling sound)
Matthew does seem to feel somewhat better (thanks to the IV fluids and IV Zofran). We are just hoping for the scope to show us the problem. I have been warned by several that the scope may not show anything. I guess there are a lot of nerves in the stomach that can get irritated. I’ve heard ulcers, fungus, bacteria and GVHD thrown around as possibilities…so we’ll see. Hopefully they figure whatever it might be and fix it!
Well, I’m off to find a diet coke ….sure wish I’d find a Diet Dr. Pepper………
Love,
The Dynamic Duo
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Wednesday, August 20, 2008 8:01 PM
Day 208 Update 2
No scope done today. This flying standby sure requires a lot of patience! Matthew ate some scrambled eggs after they told us “no scope today”. He was miserable after the fact of course but at least he ate something.
Keep praying!
Love,
The Dynamic Duo
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Day 208 2Pm Update
Just so poor Stacey from Vegas can get back to work saving the dogs….here’s the scoop
NOTHING
Matthew is on the “list” to “squeeze in” if they “can” get him “in” today. The good news is that he is on IV’s and Zofran so he is feeling and looking somewhat better. Of course, since he’s “on the list” he is NPO (which means no food or drink) so he’s hungry. Of course even if he wasn’t “on the list” and he tried to eat he probably couldn’t eat more than a bite or two without the pain starting up again. SIGH
So, we are resting, doing crossword puzzles, reading (one eyed) and checking out the world on the internet. Mary Ann and Sarah both stopped by to check up on us and to let us know they are keeping an eye on our progress.
Matthew’s counts all tanked downward somewhat…not sure what that is all about…never a dull moment.
The elevators in the “A” building were out this morning, so we had all sorts of alarms going off at 5 am. I think that was the excitement for the day….ho hum.
Keep praying!
Later………..the dynamic duo
PS….Please donate!! Please join team Never Give Up!! (my not so subtle hint for the day)
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Tuesday, August 19, 2008 8:01 PM
Day 207
Reporting live from the 5th floor of Cincinnati Childrens ….yes we are inpatient. It has been a long day here in the trenches but we are bound and determined to get Matthew feeling better.
We arrived at Day Hospital around noon. They ran some labs and started his pre-medications for the IVig. Within 10 minutes of the IVig infusion, Matthew had a killer migraine. Luckily the Maxalt (the wonder drug) helped. But in addition to the headache he felt pretty nauseous. He just does not get along with IVig too well.
Around 4pm the GI doctor arrived for the consult. He felt the only way to know what was going on was to do the endoscopy. (yup, pretty much as we all expected) Then he proceeds to say “we can get him in NEXT Friday”. Needless to say, this frustrated Mamma Bear wasn’t too happy with that answer. So, the doc and I discussed “other options” and then he left to go discuss with the BMT team. Mamma Bear headed out the door the other direction to go vent with our NP and BMT coordinator (I love you guys so much) who calmly listened to my concerns. They brought Dr. J over to have a pow wow.
We powed and wowed for a bit and came up with a plan.
Since Matthew is pretty dehydrated and isn’t eating squat and hasn’t been for weeks now, we decided to admit him. This way we can keep him on IV fluids, keep him on IV Zofran, run some more viral tests and cultures that Lutheran can’t do and hopefully push us thru the system for the scope with in the next day or two. We also hope to be able to meet with the Neurologist about his continuing migraines.
I was pretty stressed over this. I just want Matthew to feel better…period…end of story…..
Matthew on the other hand was NOT happy about being admitted. He really does NOT want to be here. I can’t say that I blame him but as I told him…we want to figure this out soon…. We want to get him feeling better. He continues to lose weight and just looks and feels a bit like dog do-do.
So, here we are…..please say a prayer that they can figure out what is going on and that they can get him feeling better really soon.
Love,
The Dynamic Duo
Monday, August 18, 2008 6:30 PM ET
Day 206
We headed to Lutheran this morning after dropping Brittany and Logan off at school for their 1st day of the year!
Matthew was in pretty rocky shape by the time we arrived in the room. He was so nauseous, gray and shaky. Dr. B consulted with Dr. D (cincy) and they decided to NOT give him the IVig today even though he really needs it. They just don’t want to compound the problems he is already having. They did however decide to give him 1.5 liters of IV fluids and IV Zofran for nausea. He was pretty dehydrated so the fluids were a GOOD thing. By the time he was all pumped up and had the nausea meds on board he actually started to look a bit better. His stomach pain is around the clock now instead of just during eating. His pain is 7 out of 10 so he’s pretty miserable. We have him on round the clock Zofran for now to help with the nausea. He hasn’t eaten anything today. I’m going to make him a shake tonight hopefully he’ll be able to drink a few sips at least. He has lost about 7 lbs since last Monday and I can see it in his non-existent energy level.
We head to Cincy first thing tomorrow. We will go to Day Hospital for IVig and fluids. They are also trying to get a GI specialist to come to the Day Hospital for a consult. Most likely we’ll do some “scoping” and if that’s the case we have to schedule OR time as well as the GI’s time. Our NP told us to plan on a few days. We also are waiting on stool culture results to see if something is going on in that department as well. I did notice some bloody mucous in his sample this morning, so I’m hoping that isn’t anything too serious. That kid can sure make a person worry.
I had another follow-up eye exam today. Good news is that we are making progress in the healing of my eyes. When I started this ordeal I was seeing 20/60 (YIKES) and now I’m at 20/30 in my left and 20/40 in my right. Not perfect but much better. With my glasses I’m still at about 20/50 or something... (too many numbers to remember). Time and drops continue to be our approach.
The first day of school went really well. Per Brittany “I love it”, “I love Mrs. E”, “I sat next to Aubrey and Laura”, “We toured the school” “Somebody said they knew I was Logan’s sister and she has candy in her office”. Per Logan (when I asked how school was)……. “good”….. Ba dum dum! Enough said!
Please pray for Matthew. He just feels so crummy right now.
Love,
Nancy and the Gang
Sunday, August 17, 2008 7:32 PM eT
Day 205
On the last day of the weekend, my true love gave to me………
1. migraine (Logan)
On the last day of the weekend, my true love gave to me……….
2. blurry eyeballs (Mom)
On the last day of the weekend, my true love gave to me……….
3. upset, full of pain, non-eating tummy
And a partridge in a pear tree………..
Matthew is so miserable. He is nauseous and in a lot of pain. He has no energy and is probably eating 150 calories a day.
I’m so glad we are heading to Lutheran tomorrow and hopefully Cincy on Tuesday. There is something terribly wrong with Matthew’s stomach.
Please say a prayer that they can figure out what is wrong quickly……I’m getting pretty concerned.
Love,
Nancy (the discouraged mom) and her gang
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Saturday, August 16, 2008 3:32 PM
Day 204
Good news: the organs we checked via ultrasound yesterday are all OK! Whew
Bad news: Matthew still feels awful. In addition to the pain when he tries to eat, he threw up last night. Today he feels a bit better but still can’t eat. He ate ¾ slice of toast for breakfast and ¾ milkshake for lunch. Not much for a teenage boy.
Keep praying………
Love
Nancy and the Gang
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Friday, August 15, 2008 6:32 PM
Day 203
A long day in the trenches…..we arrived at clinic around 10:15 for our appointment with Dr. B. She gave him a good checking over and then had some discussions with Dr. D in Cincy. We decided to not give the IViG today (even though his levels are pretty low) to avoid adding any other issues that might confuse the stomach issues. Matthew had an ultrasound done today to check his kidneys, liver, spleen and gall bladder. If those all check out ok, and the pain and inability to eat continue then we will be making a road trip to Cincy next week. Most probably he will be checked by Dr D and team and a GI specialist. I think they are thinking he’ll need to have an endoscopy done to check out the GI tract/tummy. Today, Matthew ate ½ a slice of toast and ¾ of a beefed up milkshake. He has lost 4 lbs this week. Hopefully, we’ll figure this out pdq.
I haven’t heard back from Dr B yet with the results of the ultra-sound. I’m pacing and trying not to stare at the phone with my marginally improved ONE eye. SIGH.
Monday, unless Matthew is feeling worse, he’ll get the IViG and a Pentamidine breathing treatment. Sounds like a ducky day to me!
Keep Praying and Never Give Up!
Nancy and the Gang
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Thursday, August 14, 2008 6:32 PM eT
Day 202
Well, I have jumbled report for today. The good news is that Matthew’s CBC (complete blood count) is looking better and better and more normal with each lab draw. The really exciting news is that his platelets are 134,000! Hooray!!
The not so wonderful news is that Matthew’s creatinine number is back up again. Cincy wants us to keep plugging along with the Cyclosporin. Tomorrow is another “taper day” so we’ll be reducing the amount of the drug that we know is hard on the kidneys and hopefully the taper will lower the creatinine numbers a bit more.
The other not so great news is the digestive issues seem to be getting worse. Matthew is having some diarrhea and his eating is very poor. The pain he gets is making it near impossible to eat. I bought some Carnation Instant Breakfast today after work and made him a milkshake. He drank the whole thing without any pain. So, until we figure out the stomach issues I’m going to make him a lot of those to try to get some calories and nutrients into him. Cincy will discuss w/ Dr B while we are in clinic tomorrow what the next step might be for these issues. It looks like at minimum we’ll be doing cultures and viral testing.
Today’s Counts:
Hemoglobin: 11.4
Platelets: 134,000
WBC: 3,700
ANC: 2,442
Creatinine: 1.4 (normal .5-1.0)
Don’t forget to support Team Never Give Up! Join our team today or make a donation below! We have stalled at 31 walkers but our team total eeked up a bit to $2,245!
Join us:
Team Never Give Up!!!
To join Team Never Give Up:
1. click on the above link.
2. Select “join team”.
3. Search by “team captain name”
4. Enter my name “Nancy Vinson”
5. You should see Team Never Give Up
6. Click “join”
7. any questions, please email me!
Keep praying and Never Give UP~
Love
Nancy and the Gang
Wednesday, August 13, 2008 5:49 PM ET
Day 201
Well, the tummy issues don’t seem to be improving much. He barely ate anything at all today. I made him a yummy chocolate milkshake and he was able to drink the whole thing. I was thrilled for some calories actually. We’ll see what the plan might be when we go to clinic on Friday. Lab work is tomorrow. Hopefully, his kidney numbers are ok still and all the normal counts as well.
I went for my 3rd eye appointment tonight. Thankfully, the eye drops seem to be helping a bit. My left eye has improved quite a bit. My right eye not so much but better. When I was there on Monday, I couldn’t read the top line. Today, with my left eye I read 4 lines down from the top and 2 down from the top with my right. So, it appears we are heading in the right direction. Boy, this has been a challenge not being able see.
We are all enjoying the Olympics. We each seem to have our favorites! Other than enjoying our last days before school, things have been pretty normal around here. Thank goodness for normal!
Love,
Nancy and the gang
Monday, August 11, 2008 7:15 PM ET
Day 199
Well, the princess adventure was a big surprise. Princess Brittany has been asking to get her ears pierced for awhile now. I had told her she had to show me she was taking better care of her things first. Well, she finally proved to us that she was ready. So, Greg and I decided to take her to get them done. She was a bit nervous but very brave until the girl doing her right ear hollered “OH MY GOD”. I yelled back at her “don’t yell Oh My God”. At this point, I think Brittany was terrified. The manager grabbed the gun thingie and finished the job. Poor Brittany broke down in tears. It was all quite stressful, but they let her pick out some earrings to say how sorry they were. Smiles were big at that point. So, now we are doing the cleaning and the twisting routine!
Here she is………..
Matthew’s tummy issues are about the same. He really only eats half of what he would normally eat. He also seemed to have a bit of a rash today on his arms. We are putting the special cream on and watching very closely. Dr. B returns from her vacation tomorrow, so we’ll see how things go. He only has 2 more doses of steroids to take! Hooray! We’ll be glad to be done with those nasty things. It’s funny how you can be so thankful for a drug yet hate it passionately at the same time.
My eyes are still a mess. I went back for my follow-up appointment this afternoon and things have not improved one bit. UGH. So now we are adding some prescription eye drops to our plan. I really can’t stand not being able to see. I’m typing this with 22 font so that I can squint and see it sorta kinda. Whine whine whine.
This is our last week before school starts. It seems like a lot of folks are happy about that but I’m going to miss having the little ones around all day. I think maybe I missed them a whole bunch while we were in Cincy.
Speaking of Cincy, we went to a picnic put on by Cancer Services and one of my friends was telling me about how excited they were to leave on vacation today. I asked where they were going and she says “CINCINNATI”. For some reason I found that to be on the hysterical side!
Never a dull moment in our world…….
Team Never Give Up still needs more walkers and a bunch more donations. We are stalled at 31 walkers and we have raised over $2,000 so far. You can donate by clicking the 2nd link located below.
Join us:
Team Never Give Up!!!
To join Team Never Give Up:
1. click on the above link.
2. Select “join team”.
3. Search by “team captain name”
4. Enter my name “Nancy Vinson”
5. You should see Team Never Give Up
6. Click “join”
7. any questions, please email me!
Keep praying and Never Give Up…..
Love,
Nancy and the Gang
Saturday, August 9, 2008 9:58 AM ET
Day 197
Good news …..Medium news……Bad news..
Good news……..
*Matthew’s kidney numbers have improved not normal but much better
*Dr. Davies (Cincy) decided it is TIME
*For what you ask?
*It is time to start tapering the Cyclosporin
*Trumpets are blaring ….listen and you’ll hear them too!
*His first taper went from .95ML to .50ML (nice taper indeed)
*We will go down .5 every Friday
*If all goes well and GVHD does not rear its ugly head, we will be done with Cyclosporin mid October….
*There’s those trumpets again!
Medium news……
*Tummy issues are about the same..no worse…no better
Bad news…
*Mom’s eyes are a mess
*I have burned/damaged my corneas
*We’ve linked it to a change in disinfectant that the manufacturer made.
*I can’t see at all with my glasses but can see a wee little bit with my contacts.
*We are trying some things but mostly I have to wait for the ole eyeballs to heal
*This stinks big wads
Good news………
*Greg and I had a wonderful dinner out to celebrate our big anniversary
Bad news…….
*We skipped the movie since I can’t see squat.
*If you see me around town this week and you are waving frantically at me and I’m totally ignoring you…….please remember I CANNOT SEE YOU!
Good news…..
*Greg and I are taking Brittany on adventure today and it will be a much anticipated surprise for our Princess……stay tuned!!
Keep praying and never give up!
Love,
The sightless wonder and her gang of seeing eyed family
Friday, August 8, 2008 2:12 PM ET
Day 196
Thank goodness……..after holding the Cyclosporin (which is very hard on the kidneys) and with constant nagging loving reminders to drink, drink, drink………Matthew’s creatinine (kidney number) is going down instead of up. It’s still high but much better than Wednesday.
Cincinnati had me “hold off” giving him Cyclosporin last night and this morning pending the results from today’s labs. Since the levels have gone down, I now have to wait until they decide when we should restart the Cyclosporin back up.
Matthew’s tummy issues continue but I think I might be seeing a wee little improvement but then again I can’t see this week Haha!
I am having vision problems this week. I can’t see a dang thing. I can sorta see with my contacts but absolutely cannot see with my glasses. I have heard an overwhelmingly huge amount of comments about “getting old” all week! Growl! I’m heading to the eye doctor at 3 today and I’m hoping he has some solutions. Greg is driving me around town like I’m an old fart or something.
Greg and I are celebrating our 10th wedding anniversary today! Of course, since I can’t see he thinks he can now take me to some stupid, mindless, overly annoying comedy and I since I can’t see I’ll enjoy it. Hmmppff. Seriously, Greg and I have been through so much in our 10 years of marriage. I truly thank God every day for bringing Greg into my life. He is an amazing husband and I am so very blessed.
Please say a prayer for the family of Tyler Copley. Tyler passed away yesterday. We shared a condo with them 2 years ago when we went to our first Lighthouse Retreat. Tyler fought cancer for almost as many years as Matthew. He was brave and had a great attitude about life. My heart aches for his parents but I KNOW with every ounce of my being that Tyler is whole, healthy, cancer free and happy now. Also, please continue to keep our friend Brandon in your prayers. And of course our hero Matthew needs our continued prayers as always. Thank you!
Love,
Nancy the blind one and the rest of her gang
Wednesday, August 6, 2008 5:53 PM ET
Day 194
Well, the eating and tummy issues are about the same. He just isn’t able to eat much. It’s probably too soon to see if the increase in meds has made a difference. We also rechecked his creatinine level (kidney function) and the results were higher than Monday. UGH. We are pushing the “drinking” (AKA nagging incessantly) to keep those kidneys well flushed. We will recheck his creatinine and cyclosporin levels on Friday to see where things are. Just another day in BMT land!
Love,
The Fab Five
Monday, August 4, 2008 9:14 PM ET
Day 192
We ended up going to Lutheran today to see what Dr. B had to say about Matthew’s stomach and not eating issues. He also got some lab work done. Matthew’s kidney numbers were high today so he got a bolus of IV fluids. His other lab work wasn’t quite as stellar as the last time either.
After some head-scratching and a consult with Cincy, we decided to double up on Matthew’s dose of Previcid starting today and then on Wednesday we’ll increase the appetite stimulant medication and also repeat the labs to check his kidney functions. He is also on the “Mom is going to harp at me if I don’t drink” schedule. They don’t think we are dealing with GVHD but rather getting into a vicious cycle of “can’t eat” and then the all the meds he is taking are irritating his stomach. So, we are hoping the increased dose of Previcid helps calm things down so he can eat again.
Today’s Counts:
Hemoglobin: 10.5
Platelets: 86,000
WBC: 3,800
ANC: 3,048
Keep praying and Never Give Up
Love,
The Fab Five
Sunday, August 3, 2008 5:17 PM ET
Day 191
We have had a good weekend around here…especially spoiled rotten Mom!
My pedicure was so much fun! I am now sporting hot pink toenails! They really pamper you at this spa! It was fun and very relaxing. Later that night Greg and I had date night. We went to our favorite Mexican restaurant and then went to see Swing Vote. The food was YUM and the movie was good and the company was fantastic!!
Today, Brittany and I ran over to the church and then off to do our grocery shopping. I don’t really like grocery shopping but spending time with Brittany was wonderful. After lunch, Logan and I worked on his First Holy Communion scrapbook together. We both enjoyed our Mom and Me time as well.
Matthew on the other hand is really not eating much this weekend as his stomach is really bothering him. I guess I’ll have to call to find out what the plan might be. Growl. He isn’t really eating enough to feed a bird let alone a 16 year old teenager.
Other than the tummy issues and some fatigue, he is doing well!
Keep praying and Never Give Up!
Love,
The fab five
Friday, August 1, 2008 9:19 PM ET
Day 189
Well, they all can’t be spectacular days, now can they??
Let’s see……..
Logan stapled his thumb.
Brittany fell off her bike at least 6 times and once she landed on poor Matthew’s bike. She completely squished herself between the two bikes. Matthew had two lumps on his ankle that instantly turned black and blue.
Matthew couldn’t eat much at lunch today.
Matthew got a migraine before dinner. He couldn’t eat. It didn’t go away after the Maxalt and now he’s nauseous and just took another Maxalt.
Matthew’s has taken several naps today as he just feels exhausted.
My back is in a snit again.
Greg is doing just dandy as usual.
UGH…luckily my friend Debra is treating me to a relaxing Pedicure at the spa tomorrow…I think relaxing is the really important word here. I invited my hubby on a date tomorrow night since I’ll have such sexy toes and all….hopefully the health and safety issues are all resolved so we can go enjoy my sexy toes together.
Stay tuned……….
Love,
Nancy and the not on the feeling good side of life today gang
Thursday, July 31, 2008 9:25 PM ET
Day 188
Today, I received confirmation about the date and time for Matthew’s surgery to have his central line removed. We’ll need to be in Cincy on August 27th for clinic appointment and then his surgery will be the next day at 1pm. We are excited to have the line removed. No more dressing changes, cap changes, daily flushing or high risk of infection. Showering suddenly becomes a non-event and just not having those tubes hanging from your chest has got to be very exciting!
Today was another “feel good day” and also another steroid taper day. We taper again next Thursday to a wee little bit and then the following Thursday we are done with steroids!! Hooray!! Anyone else see fireworks??!!! Then we wait a month and if all goes well, we begin to taper the Cyclosporin over the next 10 weeks. Another bit step in his recovery process!
Keep praying and Never Give Up!
Love,
The Fab Five
Wednesday, July 30, 2008 8:41 PM CDT
Day 187
It has been a good couple of days around here….nice and calm…..normal family type stuff in fact. It’s feels weird not know what Matthew’s counts are this week….2 weeks will be the longest period of time w/o labs since last October…gulp!
Sarah, our transplant coordinator, is busy making surgery plans for next month. That will be another big step in our journey. Homebound schooling is “supposed” to be in the finalization stages….hopefully. Good news is that we didn’t have to do any back-to-school shopping for Matthew!!
Brittany and Logan are done with swimming and are finishing up Wildcat baseball tomorrow. Then we have a few week break and start up with fall soccer. It just ends!!
We had a fun hot wing night with Aunt Jodie and Uncle Tony! Some day we'll actually get them to eat a HOT wing!!!
Keep praying and Never Give Up…….
Love,
Nancy and the Gang
Monday, July 28, 2008 6:46 PM ET
Day 185
Today was a much better day in the “issue” department. Matthew is still sore from his bike riding adventure and took a nice nap today but all and all he’s feeling much better.
Logan had a killer migraine today which resulted in throwing up. Poor kid.
Never a dull moment in my world.
Keep praying!
Love,
Nancy and the Gang
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Sunday, July 27, 2008 10:46 AM
Day 184
Houston, we are having “issues”. Matthew has been having tummy issues again since Friday and isn’t really eating so well. Ugh. And this morning he woke up with a migraine, took his Maxalt and it only went away for a half hour. He just took another dose a bit ago. We’ll see how the day progresses and decide whether we need to call the clinic tomorrow.
We had a great day yesterday! Brittany and I went school shopping yesterday. We found everything on our supply list for both Logan and Brittany except folders without prongs! And Wal-Mart had a whole bunch of stuff for .22 cent each. Very productive day indeed! We also found Brittany’s uniform stuff on sale at Kohl’s. They were all 55 percent off! Awesome prices! Logan still fits into all of his clothes from last year! So, all we need are shoes and we are ready for school! Yippee!
Matthew and his buddy, Ryan, went for a bike ride and attempted to ride up Rocket Hill. Matthew said he made it about ¾ of the way and started to roll backwards! He is very sore today. I’m wondering if he overdid it yesterday?!?
The Roos girls came over last night for a cookout, games and giggles! We had an awesome time. Those girls really know how to have a good time!
Cheers, Greg and Debbie!
The infamous kickball game………….
The best pitcher ever………
What an awesome throw to first…..
Heading to home plate (isn’t he a cutie pie?)
Why is Kimmie catching the ball and not KICKING the ball???
Uh………..anyone wanna guess what Lauren is doing??
Boy I’m hot and sweaty…..
Look at those curls…………
Please say a prayer for Brandon as he fights for his life. Please say a prayer for Matthew’s “issues” to be resolved and for continued remission forever.
Love,
Nancy and the Gang
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Friday, July 25, 2008 5:46 PM
Day 182
We’re home safe and sound. Our trip was very nice!
The staff at Arcadia was really happy to see us and were we happy to see them! We went to pick up some hot wings at the place down the road from Arcadia and they remembered me. They were thrilled to hear we were able to go home and they gave us free dessert to celebrate. We both relaxed after dinner!
We headed to Cincy Children’s this morning and were warmly received with lots of hugs and smiles. Mary Ann our NP and Dr Davies both said Matthew is doing great and looks fantastic! We were able to drop another med completely and reduce the dose on another one! We also got the “ok” to only get labs drawn every two weeks instead of weekly! Talk about making progress!!!
We jointly decided that next month we will get Matthew’s Central Line pulled when we go for our monthly checkup. So, our next trip to Cincy will be a few day stay, so we can get his physical done and the surgery and a night to recover. It will be so nice not to have to worry about the high risk of infection, and dressing & cap changes.
Then we started discussing restrictions. Since we are at 6 months, Dr. D eased up somewhat on his restrictions. He still has to stay away from large crowds (especially indoor crowds) but she cleared him on a few more social activities. At one point, I announced that I would be needing therapy to acclimate myself to all this. SIGH. Seriously, I so badly want Matthew to have the freedom that normal teens have, it’s just a wee bit scary for dear ole Mom!
Matthew’s counts look FANTABULOUS! His platelets were 94,000!!!!!!!!!!!!! (normal= 150,000-450,000) We are creeping ever so slowly towards the normal range. On top of that, his hemoglobin is increasing on its own and creeping towards normal. Today it was 11.4 and normal range is (13-16). Hooray!!
All and all, the appointment went well and Matthew is doing very well! We are so blessed and are thanking God daily for Matthew’s continued remission. Please continue to keep Matthew in your prayers. Our friend Brandon continues to fight for his life and is still in PICU. I asked our Mary Ann our NP to deliver his Mom a bag of books to help keep her mind occupied. My heart breaks for Brandon and my heart aches for his Mother. Please say a prayer for him and his family too if you could.
Today’s Counts:
Hemoglobin: 11.4
Platelets: 94,000
WBC: 3,700
ANC: 2,590
IGG Level: 519 (needs to stay above 400)
Love,
Nancy and the Gang
Wednesday, July 23, 2008 8:50 AM ET
Day 180
It has been 180 days since Matthew’s transplant. Six months have passed, some of them slowly, some of them very quickly. All and all Matthew is doing very well. His tummy seems to be doing better so hopefully we’ll be able to continue on with our tapering of the steroids. We are leaving for Cincy tomorrow afternoon and are staying at the Arcadia. Driving 7 hours and a multi-hour visit to the clinic is just too hard on Matthew in one day. Our appointment is on Friday morning. We are excited to see all of our friends at Cincy Children’s. Hopefully, they will agree that Matthew is doing great!
Don’t forget Team Never Give Up needs your support. Please consider joining our team or making a donation today! We have stalled at $1885 and 30 walkers!
Team Never Give Up!!!
To join Team Never Give Up:
1. click on the above link.
2. Select “join team”.
3. Search by “team captain name”
4. Enter my name “Nancy Vinson”
5. You should see Team Never Give Up
6. Click “join”
7. any questions, please email me!
To donate in honor of Matthew copy/paste this link into your browser or go to the 2nd link at the bottom of this site:
http://www.active.com/donate/ltnIndian2/2458_vinsonn
Keep praying and Never Give Up!
Love,
Nancy and the Gang
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Monday, July 21, 2008 11:50 AM
Day 178
Yesterday was all about one thing and one thing only…..S W I M……..Logan started his morning at 8am practice…..then on to a pancake (and eggs, sausage, fruit, juice) breakfast made by some of the swim team Dads. Then after that the prep team (that would be Brittany’s team) hopped up onto a big fire truck to lead the parade of decorated vehicles through our addition. The kids threw candy to lively fans that were sporadically lining the streets. Then it was time for the big caravan to South Side High School for the City Swim Finals.
The big fire truck………
Brittany working her way towards the front of the fire truck……
There’s a smile………..
We arrived at South Side….here’s our qualifying team….
Logan hanging out………
Announcing Arlington Park Swim Team…
Our part of the parade……
Logan is right behind our lead off swimmer ……..getting ready……excitement….
Ok, I got so darn excited I didn’t take ANYMORE pictures, so you’ll have to use your imagination …picture our team…….dive….stroke…stroke….stroke…reach…finish…….
We entered the building from the cool (haha) 89 degree outside temp to at least 150 degrees inside temp. It was so hot it was difficult to breath. Then there were the annoying people that spread BLANKETS on the seats to “save seats”. I’m sorry but there were over 2000 people crammed in this building and maybe 500 were sitting on the seats with their big blankets. I even saw some dude lying down taking up at least 6 seats. Growl. So the remaining 1500-ish people were crammed into the upper area 6 and 7 people deep….all sweating….all standing on their tip toes….all way taller than my 5’4” and Brittany’s 4 ft whatever height….and then the fire marshal walks by hollering “we need to keep the aisles clear”. At this point I felt like hollering right back at him “tell the dude lying down to sit up and share his 6 seats”….but I didn’t. Did I mention it was very hot in this building?
We arrived at noon, Logan’s team warmed up at 12:30 until 1pm. And then the parade started. Each team dressed in a “theme” and marched into the Natatorium in reverse alphabetical order. Arlington Park was close to the end. After the parade, we sang the National Anthem and the meet began!
And so we waited….in the hot building…with thousands of other sweaty parents…all standing very closely together….sweaty body parts smashed together…waiting for Logan to swim. We started heat #1….and Greg happily announces “Logan is swimming in heat #64”……gulp….sweat…wait…gulp…..sweat…..sigh.
Fast forward to 4:55 pm…..heat #63 is starting….Mom begins pushing and shoving her way to the middle of the pack (forget front…ain’t gonna happen)….have I mentioned how hot it is??? A kindly lady offered her chair to Brittany so she could see over the 7 ft guy standing in front of her. Heat #64 (boys under 8 freestyle relay) headed to the blocks. Logan was the 3rd leg. The excitement was building and thus so was the sweat…..Our 1st guy dove in and struggled a bit…Our 2nd guy jumped in and closed in a bit…Our 3rd guy (AKA the LOGAN-ATOR) jumped in (not the prettiest jump) but quickly closed the gap a bit more…Our 4th guy (AKA one of Logan’s friends Eddie-the monster-reach) jumped in and swam his heart out. The race was really for 3rd and 4th place…the excitement was at its crescendo. Everyone was screaming (ok maybe it was just me??) like crazy people. Eddie (our anchor) and the other kid were neck and neck….my calves were cramping from standing on my tippy toes for so long….I could no longer feel the heat or smell everyone else’s sweat….all I could see was …….Arlington Park…reaching for that wall…….and……….finishing 3rd!! Hooray!!!
Gosh, it was exciting!
Matthew seems to be having some adjusting to this last tapering of steroid issues. His tummy hasn’t felt quite right and he isn’t really eating as much as normal. It’s not to a “better call the doctor” point but just something we are watching. We made it safely past the 20 mg point (fade back to our bad point in May) and are at 10 mg now. We’ll see. I hope we can continue our tapering so we can get him off these steroids. Matthew spent a lot of the weekend with friends. It is so nice to see him with his buddies and to hear them all laughing. The sound of laughter just makes me smile!
Keep praying and Never Give Up!
Love,
The Fab Five
Saturday, July 19, 2008 7:08 PM ET
Day 176
Guess what? Logan qualified to go to the city swim finals tomorrow! We think he qualified on the IM relay and Freestyle relay but we aren’t sure…all we know is he is going to city!
We spent about 5 hours at South Side’s Natatorium on Friday and boy was it hot. It had to be over 100 degree in there. Of course I had a ¾ sleeve cotton shirt on so I was dying. Tomorrow I’m wearing my hair up and going in a tank top…I’m going prepared! I won’t be a newbie Mom this time…nope…no way….
Here’s Logan doing the freestyle…….
Patiently waiting his turn……..
Getting ready for the backstroke…….
Look Ma, my name’s in lights!!
Am I the cutest fan here??
And here’s the cutest fan with her handsome Pop……..
Today Greg and I went over to the Angels on the Pitch soccer tournament. What a wonderful event that was! We met Carlos and Jodi, two very kind and wonderful people who put the event together. Their son, Alex, is also a Leukemia survivor and is doing great! We are so thankful to the Cruz family for putting on such a wonderful event and for the help they provided to us for the medical care expenses. They even presented me with a trophy and t-shirt for Matthew! He was very touched when I gave it to him. Thank you Jodi and Carlos!
Since we’ve been home during the past 3 weeks, I have been using the term “adjustments" a lot as I describe the period we are in now. We are merging our two households, schedules and lives back together, which entails adjusting by all. We are getting used to a change in medical staff, home health care, labs, which entails adjusting by all. Matthew is spending time with friends again. I am back to work full time again. Lots of adjusting. So, as I’m using this term I began to think that no one probably really understands what I’m rambling about. Maybe, I’m over analyzing the situation? Well, today Greg and I strolled to the mailbox and I pull out a 6-9 month post BMT news letter from the National Bone Marrow Registry. On the cover in big red letters is the word “ADJUSTING”. Huh….I guess it’s not just us! I swear I could have written the article myself.
Speaking of the National Bone Marrow Registry….one of the readers (Marie) on our site emailed to ask how go about signing up to be a potential donor for someone and then she reminded me that now might be a good time to remind EVERYONE how important it is to sign up. Matthew is here today because a wonderful person decided to sign up. So, I asked my pal Sandy (who headed up our bone marrow drive last fall) for the info….so here it is:
here is the link to the national Bone Marrow Registry
http://www.marrow.org/index.html
They can click on the part where it says become a donor. They can then either register online to receive a kit by mail. The cost is $52. There is also a spot where they can put in their zip code to find a local donor drive. I think the website offers some fantastic information.
Thank you Marie and Sandy! Now go sign up folks…you can help save a life!!
Matthew is feeling good today. He spent the afternoon with his buddy Zach! I’m so thankful that he is doing so well. It breaks my heart about Brandon (from Cincy) who is fighting so hard for his life. Please remember to say a prayer for Brandon and to keep Matthew in your prayers as well.
Love,
Nancy and the Gang
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Friday, July 18, 2008 2:08 PM
Day 175
Today was clinic day at Lutheran! All went well. We had some scheduling type issues to work thru since next week we go for our 1 month checkup in Cincy. Brittany was treated like a Princess like usual. She was able to pick out a book from Kate’s Cart, which is a new thing at our Children’s Hospital since we left in January. She did a puzzle with Michelle, our wonderful social worker. Nurse Shelly gave her a special book and a Hot Wheel car for Logan. I was able to catch up with Laura our child life specialist and finally able to see Nurse Jenny! Matthew needed his breathing treatment today so we also were able to see David our Respiratory Tech. Dr. B checked Matthew out and declared him to be “doing great”! I also stopped into the Leukemia & Lymphoma office to drop off a nice size check for Team Never Give Up. Whew a busy day at the clinic.
Speaking of Team Never Give Up (see how smoothly I did that transition??), we now have 30 walkers and have raised over $1,900!
Team Never Give Up!!!
To join Team Never Give Up:
1. click on the above link.
2. Select “join team”.
3. Search by “team captain name”
4. Enter my name “Nancy Vinson”
5. You should see Team Never Give Up
6. Click “join”
7. any questions, please email me!
To donate in honor of Matthew copy/paste this link into your browser or go to the 2nd link at the bottom of this site:
http://www.active.com/donate/ltnIndian2/2458_vinsonn
Logan went to his last swim practice before City Preliminaries which are tonight. They presented him with the team trophy (the smaller one) today AND a trophy for “the most improved swimmer” (the BIG one)! He was grinning ear to ear as you can see below!
The Lord has blessed us with a beautiful day, a healthy day for Matthew, and a physically fit day for Logan. We are so blessed.
Keep praying and Never Give Up!
Love,
Nancy and the Gang
Thursday, July 17, 2008 8:19 PM ET
Day 174
Matthew’s kidney numbers and potassium level were all perfectly NORMAL! All and all, this weeks lab results rocked! We have a checkup at Lutheran tomorrow morning. Matthew did have another migraine tonight but the Maxalt helped.
Team Never Give Up is starting to grow. We are at 29 walkers and we’ve raised over $1,800.
We still need more walkers and more donations, so please consider joining Team Never Give Up or making a donation today!
Team Never Give Up!!!
To join Team Never Give Up:
1. click on the above link.
2. Select “join team”.
3. Search by “team captain name”
4. Enter my name “Nancy Vinson”
5. You should see Team Never Give Up
6. Click “join”
7. any questions, please email me!
To donate in honor of Matthew copy/paste this link into your browser or go to the 2nd link at the bottom of this site:
http://www.active.com/donate/ltnIndian2/2458_vinsonn
Keep praying and Never Give Up!
Love,
Nancy and the Gang
*****************************************
Wednesday, July 16, 2008 12:19 PM
Day 173
Matthew’s lab results look spectacular today (except for the fact they forgot to run the kidney labs this week again so we have to go give more blood)! His counts don’t look much like a post-BMT kid to me!!
The white, red and platelets all went up on their very own! I went back and looked in my records and it has been over 1 month since his last blood transfusion and about 7 weeks since his last platelet transfusion! And his ANC is completely in the normal range! Yahoo! His platelets haven’t looked this awesome since before his relapse in October! (still not normal but lookin pretty darn good)
Today’s Counts:
Hemoglobin: 10.9
Platelets: 54,000
WBC: 5,400
ANC: 4,535
Keep praying and Never Give Up……….
Love,
Nancy and the Gang
Monday, July 14, 2008 10:26 PM ET
Day 171
Today has been a good day in our corner of the world. Matthew felt good all day, in fact he rode his bike to Logan and Brittany’s baseball game! How normal is that? Of course he slathered on the sunscreen and only stayed 1 hour.
His appetite is starting to scale back just a tad since we tapered the steroids last Thursday. I hope the tad stays a tad. Today was dressing and cap change day and all of our normal bottles and bottles of post BMT meds!
My dear friends Debbie and Mary kidnapped me tonight. They took me to my favorite Mexican Restaurant (Cebollas) for Margaritas, chips/salsa and nachos. We yacked, ate and drank for 3 hours! Matthew asked, upon my return, what the heck we did for 3 hours!! It was so nice to relax and have some fun! Thank you Debbie and Mary!!!!!
Keep praying and Never Give Up!
Love,
Nancy and the Gang
Sunday, July 13, 2008 2:29 PM ET
Day 170
Wow, it’s hard to believe that in 10 days Matthew will be 6 months post BMT. He really is doing well and we are so blessed.
Yesterday, some buddies came to hang out with Matthew while the rest of us and the Roos Girls went to the Fort Wayne Wizards baseball game compliments of the Leukemia and Lymphoma Society. We had a great time even though our team lost by one. After the game they had an incredible firework display. It was so good. We stayed in our seats, listened to music and watched some great fireworks! We really enjoyed our relaxing evening!
Brittany and the Roos Girls getting ready for the game……..
Logan (in blue) throwing out the “first” pitch…..see the ball???
After his magnificent pitch………
Standing in line (2 kids away from Dinger the big blue dragon)……
Walking off the field…….full of pride………
Here comes Dad………..
Brittany, Logan and Kim went for munchies…….
Between inning entertainment by Mr. Noodleman……
What are Dad, Logan & Brittany looking at???
The FIREWORKS of course!
Team Never Give Up now has 14 walkers proudly walking in honor of Matthew! We have raised $1,760 already! Hurray!
Here’s the scoop…….we need your help!!
Team Never Give Up!!!
To join Team Never Give Up:
1. click on the above link.
2. Select “join team”.
3. Search by “team captain name”
4. Enter my name “Nancy Vinson”
5. You should see Team Never Give Up
6. Click “join”
7. any questions, please email me!
To donate in honor of Matthew copy/paste this link into your browser or go to the 2nd link at the bottom of this site:
http://www.active.com/donate/ltnIndian2/2458_vinsonn/
ANGELS on the PITCH:
The soccer tournament that I announced a few days ago is still in need of volunteers. If you can donate an hour or two, need service hours or anything, please email Linda at chubbyspizzas@verizon.net. We very much appreciate any help you can give. They are having a raffle at the tournament and the proceeds are kindly being donated to help with medical expenses. THANK YOU!!
Our next clinic visit will be to Lutheran on Friday. I’m hoping this week is calm, event free and symptom free week. As so many have pointed out to me in the past few days, God is in control, God can perform miracles, take it one day at a time and God is taking care of my family including Matthew. Thank you all for reminding me of that during my overwhelming week last week.
Keep praying and Never Give Up…….
Love,
Nancy and the Gang
*************************************************
Friday, July 11, 2008 7:29 AM
Day 168
It has been a “challenging” week for dear ole Mom. I can hear two songs dueling in my brain I’ve Had a Bad Day by Daniel Powter and Livin on the Edge by Aerosmith.
This week has been a bit overwhelming for me. Between the “1 stupid headache incident” from Tuesday increasing my stomach acid 10,000 degrees and the “you’re going into kidney failure” incident from Wednesday, I’m feeling a wee bit of anxiety. Things have been difficult at work this week, so I’m feeling a wee bit of anxiety. I messed up my eyeball and the stupid thing wouldn’t stop watering all day yesterday and I can’t stand going into the sun and I had to wear my glasses (gasp) to let the poor thing rest. Now picture this, I’m wearing my glasses and my non-prescription sunglasses over my regular glasses……anyone envisioning a dorky old lady?? I’m feeling a wee bit of anxiety. My allergies are the worst they’ve been in 5 years; maybe I’m allergic to being home?? I have piles of EOB’s to wade thru, so I’m feeling a wee bit of anxiety there too. I’m trying to make sure we have enough meds to last us thru to our Cincy appointment when I can get refills, so I’m feeling a bit of anxiety. I still have 6 months worth of filing to do for all our personal bills and such, so I’m feeling a bit of anxiety.
But, except for all the anxiety, things are really going OK. Matthew is headache free since the “Tuesday headache” and the dose of migraine medication. Matthew’s kidneys are just fine. Matthew looks good and has a full head of wavy soft hair. Matthew feels fine after his first day of tapered steroids. Yes, we finally dropped his dose to 20 mg yesterday and so far so good.
My eyeball is doing better today. I took my Claritin and two Sudafeds for my allergies, hopefully that will help my incessant sniffing that I’m sure drove everyone nuts at work yesterday (sorry guys). I’ve calculated that we should be “ok” on his meds. I’m attempting a bit of filing every day. The EOB’s just plain stink but I’ll get thru them and just ignore the part that says “patient responsibility”.
We are really ok, I’m just stressed and need to decompress….if I had a box of Calgon and a personal Masseuse I could drown myself in the Calgon after a nice long massage……ahhhhhhhh!
Please say a prayer for our friend Brandon who is still on a ventilator and dialysis in Cincy and for our friend Avalon who is going for her 2nd brain surgery to try to try help her after damage that was done from her chemo and a previous botched brain surgery. Please continue to pray for our hero, Matthew as well. Have I mentioned how much I dislike cancer??
On a lighter note, Team Never Give Up continues to grow. We have 13 walkers and have raised $1,435. Slow but sure progress! Join us in helping to fund research so no child has to suffer like Brandon, Avalon and Matthew.
Team Never Give Up!!!
To join Team Never Give Up:
1. click on the above link.
2. Select “join team”.
3. Search by “team captain name”
4. Enter my name “Nancy Vinson”
5. You should see Team Never Give Up
6. Click “join”
7. any questions, please email me!
To donate in honor of Matthew copy/paste this link into your browser or go to the 2nd link at the bottom of this site:
http://www.active.com/donate/ltnIndian2/2458_vinsonn/
The soccer tournament that I announced a few days ago is still in need of volunteers. If you can donate an hour or two, need service hours or anything, please email Linda at chubbyspizzas@verizon.net. We very much appreciate any help you can give.
Thank you Dave L for donating some raffle items! What a wonderful idea that was!!
Other exciting news……..Greg and Logan (along with another little girl with Leukemia) will throw out the first (and second) pitch at Saturday night’s Wizard baseball game. Greg and Logan will be throwing their pitch in honor of Matthew since he cannot attend the game himself. How cool is that?!?!?!?!
Ok, I’m off for now.
Love,
Nancy and the Gang
Thursday, July 10, 2008 8:06 AM ET
Day 167
Kidneys are fine....Mom's nerves aren't......
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Wednesday, July 9, 2008 4:36 PM
Day 166
Today has been another “issue” and “adjustment” day. Because of “issues” with the way the lab Lutheran uses does their billing it causes insurance problems for us. We can’t afford insurance problems at this point. Well, we came up with a work around, where home health care draws the labs and takes them to a different lab that does not cause insurance problems for us. When the lab results were faxed to me last night, I noticed that they did not report his BUN and Creatinine (kidney function) numbers. So, I called our clinic this morning and they concurred. So, I asked if they could just run it from the sample they took yesterday. (I thought I was being pretty creative) We were told they could do that. Well, we went for our appointment and the kidney results weren’t back yet. When I walked in the door the nurse called me with the numbers. The creatinine number she gave me was 5 times higher than last week and 3 times higher than normal. I even asked her to repeat it to me several times. GASP. Dr B is hoping that the number is incorrect due to the sample being from yesterday (I’m not sure why the lab would say it’s ok to run it if it’s not ok). Dr B decided we needed to re-run them since they were so high. So they then called home health care to come back out to draw more blood. Home health calls me and says they can’t be out until 6:30 and the local lab closes at 5. GRUMBLE. So, I call back to the clinic and suggest that I should just run him to the local lab we use. Dr. B agreed we needed to get them re-done today since the result was sooooooooo high. So, they called the local lab to let them know we are coming and that he needs to go directly back ASAP. I just ran him over and we were in and out in minutes. So, now we wait for the results. Hopefully, it’s just a fluke (again).
Today’s other big decision was whether or not Matthew should get an IVig infusion. Since this particular med causes severe headaches for Matthew, Dr. D decided to lower his threshold to an absolute low while still being safe level. Matthew was exposed to parvovirus B19 and that can cause complications for BMT kids. UGH. His Igg level came back above the 400 cutoff so Dr B and Dr D agreed to hold off and keep our fingers crossed that he doesn’t end of with the virus.
There just always seems to be “issues” after BMT, luckily we have a good team to step up and try to solve them all!
Keep praying and never give up.
Love,
Nancy and the gang
************************************************
Tuesday, July 8, 2008 5:06 PM
Day 165
Today started out a bit on the crummy side. Matthew woke with a really bad headache. He came down squinting and holding his head and said that his head hurt REALLY badly. My stomach clenched, my heart rate tripled and my breathing grew shallow. I gave him one of the migraine meds the Neurologist prescribed and went upstairs to try to calm myself down. The “what could it be’s” started running thru my mind….sinus, low hemoglobin, uh….um……everything went running thru my mind. Now why couldn’t it just be a headache for gosh sake?? That horrible dreadful feeling just comes racing back and I hate the fact that a headache can throw us or maybe just me into such turmoil.
My mind was preoccupied all morning. I had trouble focusing on my way to work and at work. Finally around 11 Matthew called to tell me his lab results and I asked how his head was feeling. He said “fine”! Stomach unclenched, heart rate slowed, breathing more normal and the fog started to clear. This roller coaster ride just seems unending.
Now having said all that, Matthew’s counts looked good. Both his hemoglobin and his platelets were looking ok. Matthew feels fine right now and Mom has a few more gray hairs but is calm again.
We have a clinic appointment tomorrow but we aren’t sure if he will need an IVig transfusion since the Igg lab test won’t be done until tomorrow sometime. We’ll have to see what happens.
The soccer tournament that I announced a few days ago is still in need of volunteers. If you can donate an hour or two, need service hours or anything, please email Linda at chubbyspizzas@verizon.net. We very much appreciate any help you can give.
The link with more information is:
Angels on the Pitch
Team Never Give Up:
We are still at 11 walkers! Be sure to sign up! We have $1325.00 in donations as of today! Be sure to donate if you can!
Team Never Give Up!!!
To join Team Never Give Up:
1. click on the above link.
2. Select “join team”.
3. Search by “team captain name”
4. Enter my name “Nancy Vinson”
5. You should see Team Never Give Up
6. Click “join”
7. any questions, please email me!
To donate in honor of Matthew copy/paste this link into your browser or go to the 2nd link at the bottom of this site:
http://www.active.com/donate/ltnIndian2/2458_vinsonn/
Today’s Counts:
Hemoglobin: 10.5
Platelets: 30,000
WBC: 3,000
ANC: 2,250
Keep praying and Never Give Up……….
Love,
Nancy (the frazzled Mom) and her fab fam
************************************************
Monday, July 7, 2008 1:06 PM
Day 164
Matthew had a bloody nose this morning but it stopped after about 10 minutes, so his platelets must be doing their job. Labs will be drawn by home health care tomorrow so we’ll know if we need any blood or platelets or IViG transfusions on Wednesday.
We had a really relaxing weekend. Matthew had several different friends over all at different times this weekend. By 9pm last night he was pretty pooped. You should see his beautiful head of hair (ok, maybe I should say STUDLY). It is looking kind of curly in the back in fact.
Overall, Matthew seems to be doing pretty darn good. I’m anxious to see how all of his labs look tomorrow.
Team Never Give Up is making progress. We are up to 11 walkers and $1,300 in donations.
Team Never Give Up!!!
To join Team Never Give Up:
1. click on the above link.
2. Select “join team”.
3. Search by “team captain name”
4. Enter my name “Nancy Vinson”
5. You should see Team Never Give Up
6. Click “join”
7. any questions, please email me!
To donate in honor of Matthew copy/paste this link into your browser or go to the 2nd link at the bottom of this site:
http://www.active.com/donate/ltnIndian2/2458_vinsonn/
Keep praying and Never Give Up!
Love,
The Fab Five
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Saturday, July 5, 2008 9:46 AM ET
Day 162
Yesterday was a day of Independence, vegging, drama, and team success!
Independence:
As you probably know if you live in the USA and are reading this, yesterday was the 4th of July AKA Independence Day. (we do have readers from around the world so I felt the need to point this out) Independence Day is a federal holiday commemorating the adoption of the Declaration of Independence on July 4th, 1776, declaring independence from the Great Britain. So, we celebrating our country’s independence as well as Matthew’s independence of sorts………from Cincinnati!
Vegging:
The act of doing absolutely a whole lot of NOTHING, a true form of relaxation. Well, we were wildly successful in doing just that. Justin came over for a nice visit. He brought several boxes of those noisy things that you throw and they pop. We all busily popped thru our 4 boxes in ohhhhhhhhhh about 3 minutes. We had a nice cookout for dinner. Complete with spicy smoked sausage, hot dogs, watermelon, homemade pasta salad and red, white and blue cupcakes. Other than that, Brittany read so she could get some Summer Reading Program points, I read because I LOVE to read, Matthew and Logan played some video games, Greg watched a few old movies (musta be Steven Segall day or something). Brittany and I did some more scrapbooking; this is rapidly becoming a Mommy and Brittany project!! I love it!!
Drama:
Well, our cocker spaniel, Bella, discovered a nest of baby bunnies under our maple tree beside our patio. Logan caught her with one in her mouth. It created lots of drama. Dad had to “take care” of the baby who was obviously “in trouble”. Brittany was full of dramatic worry about whether or not the Mommy would be able to find her baby. Yesterday afternoon, Bella went straight for the bunny nest again, all of a sudden we heard squealing and we quickly figured out that she was trying to get the bunnies again. There was lots of screaming (me and Brittany mostly) as Justin superman jumped over the bushes to get Bella away from the bunnies. Yikes….drama…
Drama #2 is a bit more stressful for worry-wart Mom. Logan has a red splotchy rash of sorts on his face and arms. Of course one of the things I found that it “could” be is not something we want Matthew to be around. If that is what it is he already been exposed since by the time the rash appears you aren’t contagious. UGH. We tried Benadryl just in case it was an allergic reaction. No improvement. We’re in the watch mode to see what happens today.
Team Success:
Team Never Give Up is beginning to build. We have 9 walkers signed up and our team total is $1,225.00 so far! Yahoo! Please consider joining and or donating today. Thank you Gloria for being my 2nd donation! Thank you to Sean D who rose to Mary Blacks challenge in a HUGE way!!
To join team Never Give Up:
Team Never Give Up!!!
When you get to this site, search by: Never Give Up (team name), select the Lutheran Campus location, Team captain Nancy Vinson….click on “join”. If you have any trouble or can’t figure it out let me know and I’ll sign you up!
To donate in honor of Matthew copy/paste this link into your browser or go to the 2nd link at the bottom of this site:
http://www.active.com/donate/ltnIndian2/2458_vinsonn/
Matthew is feeling good….no complaints at all in fact! We are plugging along with our medications and stamina building. We are continually praying for no long term side effects and for remission forever and ever.
Keep praying and Never Give Up….
Love,
The Fab Five
******************************************
Thursday, July 3, 2008 6:46 PM ET
Day 160
Well, the quirks of the past few days appear to be just that…quirks. Matthew’s labs came back looking better. His hemoglobin was 10 so that should get us thru till next Tuesday’s lab draw and more good news his platelets went up to 30,900! Yahoo!! We haven’t seen 30,000 for awhile! The other seemingly quirky issue was his BP…it was normal today thank goodness! So, I think we can relax for the weekend….I think LOL.
Team Never Give Up news:
We have 8 walkers registered and our 1st online donation. Thank you Margie from Florida!! I have put our team link and my personal fundraising page (neither of which have been personalized) down below, so please stop by to check our team progress, join our team and/or make a donation!!
Team Never Give Up!!!
Search for Never Give Up or Nancy Vinson
School News:
I’ve started the ball rolling in regards to Matthew’s Junior year. It appears that he will be homebound schooled for the 1st semester for sure and possibly the whole year. He won’t have any immune studies done until the 1 year mark (which won’t be until the end of January). It just isn’t safe for Matthew to be around a lot of people and there are a LOT of people at his high school. I’m also not sure he’ll have his stamina built back up by then either. He still has a long way to go. So, with the help of our wonderful Social Worker from Lutheran (thank you Michele), we started the process. I have more calls to make on Monday but we have a plan. The good news is that Matthew needs 40 credits to graduate and he has 20, so he is right on track to graduate. I find that to be on awesome feat and a testimony to his drive and fortitude.
Tournament/Fundraiser News:
A wonderful family Jodi and Carlos Cruz and their company Cruzbol International, LLC is holding a soccer tournament. It is called the Angels on the Pitch 3v3 Charity Soccer tournament. Jodi and Carlos have a son, Alex, who also fought and has beaten Leukemia. They decided, as part of their tournament, to hold a raffle at the tournament with the proceeds going to their first “Tournament Champion”. That champion happens to be Matthew. We are touched and honored that they chose our family and Matthew to be their “Tournament Champion”. We are so grateful for the help with our medical, lodging and travel expenses.
Jodi is in need of some donated items that can be used as prizes for the raffle winners. Suggestions given to me were Gift Cards, money or any other prize items that might induce people to buy a ticket. If you can help, please email my pal Mary Black at mary.black@doitbest.com or rosary101@verizon.net They are also in need of volunteers for the actual tournament days which are July 18, 19, 20. If you can donate your time (any amount of time would be awesome) please email Linda at chubbyspizzas@verizon.net . And if you like soccer, feel free to attend the tournament and see some great soccer!
The link for more information is:
Angels on the Pitch
Thank you Jodi and Carlos!
Today’s Counts:
Hemoglobin: 10
Platelets: 30,900
WBC: 4,100
ANC: 3,469
Happy 4th of July to all of you! Ours will hopefully be pretty laid back and relaxing. I’m all for relaxing these days!
Keep praying and Never Give Up.
Love,
The Fab Five
Wednesday, July 2, 2008 7:59 AM ET
Day 159 Part 2
Our clinic visit was great today! It was so nice to see everyone….lots of hugging going on! Greg made his world famous brownies so we took a batch in for everyone! Everyone kept commenting how great Matthew looked and they were all shocked when he took off his hat to show off his full head of hair.
Matthew is pretty much covered in bruises but his plates are high enough for now! We spent some time reviewing everything including the medications and the comment was made that his BP has been very good considering all the meds he is on. Then Nurse Shelly took his BP and it was high. UGH. We all decided it must be all the excitement of being back “home”. Shelly took it a few more times and even took it manually….still high.
Since Matthew’s hemoglobin took a rather large dive and his BP was high, we are going to have home health care come back for another lab draw and to check his BP tomorrow afternoon. We are hoping the hemoglobin results were a fluke or at least stable so we don’t have to mess around with a blood transfusion over the holiday. We’ll all feel better knowing what his hemoglobin actually is doing.
I’ve been doing a lot of thinking lately about the Light the Night Walk which is coming up in September. I wasn’t sure if I had the energy to do it again this year. Today I thought to myself, what am I whining about??? Matthew doesn’t have the luxury of saying “I don’t have the energy to walk up the stairs today”. I also thought about the 25 percent of the kids that aren’t cured…I thought about Kevin and Jonnae who didn’t survive their battle with the beast after transplant…I thought about Corey, Adam, Johnny and Dean who are no longer with us. I thought about Brandon who is fighting for his life. I thought about the fact that we need 100 percent cure rate….75 percent just isn’t good enough…we need a therapy that isn’t so harmful to our kids…a therapy that doesn’t actually cause other cancers….a therapy that if is unsuccessful ends up in the horrors of transplant.
Sooooooo, after all that thinking and an email from our friend Tammy (AKA the Craft Lady) letting me know she’s raised $750 for Team Never Give Up (yeah Tammy)….I’ve decided to go ahead and continue as Team Captain for Team Never Give Up. I hope you will all consider joining me again this year and if you can’t join I hope you can spare a buck or two to help our cause.
I haven’t set up the fundraising site yet but I do have the link. Feel free to start joining our team. If you need any help joining please let me know! Imagine this…..Matthew has between 800 and 1000 hits a day to his site…if each of the 800 people raised or donated $100 we could raise $80,000!
Team Never Give Up!!!
When you get to this site, search by: Never Give Up (team name), select the Lutheran Campus location, Team captain Nancy Vinson….click on “join”. If you have any trouble or can’t figure it out let me know and I’ll sign you up!
Please join today!!
Keep praying and Never Give Up!
Love,
The Fab Five
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Day 159
Busy day in the Fort…..I went in to the office today for the first time in a long time. It was a wonderful feeling to be doing something “Nancy Normal”. I work with the most wonderful people so it was great being back together with them!
I did some scrapbooking last night after the kiddos went down to the pool and Matthew had a friend over. Greg and Matthew watched a really good pitching Indians game, they were both bummed when they lost it at the very end. More normal stuff!
We are still working thru transitional stuff. The plan we had for labs didn’t go exactly as planned but after making a few stern phone calls to the lab, I finally received his counts at 10pm last night. His platelets increased a bit, still low but higher than Friday. His hemoglobin took a big plunge from 11.3 to 9.7. That surprised me and now presents some holiday/repeat lab/transfusion issues….ugh. We’ll be working thru it today when we go to clinic I suppose. I think we’ll be tapering his steroids again today, hopefully he’ll respond well to this taper. I’m a bit nervous about that 20 mg dose.
Matthew is doing very well overall. He was however able to see the consequences of not using sunscreen. He was outside for a bit over an hour and he had missed a spot on his feet and wrist when he applied sunscreen. He has a flare of skin GVHD in both spots. It’s scary how the sun can make that GVHD rash pop up. He is also at extremely high risk for skin cancer so sunscreen will be his best friend for a lifetime.
We are anxious to see everyone at clinic today. We haven’t seen them since December!
Today’s Counts:
Hemoglobin: 9.3
Plates: 27,000
WBC: 3,400
ANC: 2,771
Keep praying and Never Give Up!
Love,
The Fab Five
Monday, June 30, 2008 5:41 PM ET
Day 157
I think Matthew wore himself out on Saturday. He pretty much rested or hung out on the computer all day yesterday! It was really nice seeing him with his friends. He still has to be very careful since his immune system is squat. Crowds, public places with people and the sun are all no-no’s. We are still working thru what is safe and what’s not safe. It’s a fine line we walk between being a normal teen and being a teen with no immune system.
Every morning since we’ve been home, I feel a wee little princess wiggling her way into our bed. She works so hard to be quiet and not wake me up. She eventually curls up in my arms and as I peek thru my eyelashes I see her grinning and my heart just melts. I’ve missed my little princess!
Today, he had a 10 minute nose bleed and is sporting a gross looking bruise on his arm. I really wonder what his platelets look like. We will get labs drawn tomorrow and we’ll go from there. Assuming his platelets aren’t critically low, we have our 1st weekly appointment at Lutheran on Wednesday! We are pretty excited to see all our friends there plus we get to go to the NEW clinic for the 1st time. They finally opened the Pediatric Cancer Center shortly after we left for Cincy.
We are getting close to being unpacked. I spent a lot of time this weekend unpacking. We still have some “stuff” to organize, but we’re settling in!
Keep praying and Never Give up!
Love,
The Fab Five
Sunday, June 29, 2008 11:09 AM ET
Day 156
Wow! What an awesome homecoming day yesterday was!
My goal was to be ON THE ROAD at 10am, since I knew we had a gang of “welcome home Matthew” folks waiting for us. We loaded up our 1st cart load, opened the outside door to find a lovely downpour. I remember hollering “don’t let my scrapbook stuff get wet!” By the time we had our 1st load loaded the rain had stopped. We went back for our 2nd load, opened the door and got smacked with the humidity…UGH! By the time we finished our 3rd load, I began to fret about not having enough room for all our stuff. After the 4th load, I began to think…hmmmm…maybe Denise from Arcadia would hang on to some stuff for us until we go back next month for Matthew’s 1st monthly checkup. But lo and behold we managed to cram delicately pack all of our junk very important belongings into our van with a few spots where I could see out the back. At 9:58, we pulled up to the office to drop off our key. At 10:00am on the dot, we pulled out of the parking lot of Arcadia Suites! But alas, a few minutes after pulling onto 75N, we hit construction traffic. It took us a half hour to go 10 miles. After that snarl we hit two torrential rain storms that slowed us down. We finally arrived around 1:30 to our addition. As we turned the corner onto our street, we saw lots of people, balloons, and welcome home signs! Matthew said “I knew you had something planned!” It was so great seeing all the smiling faces on our friends and family!
Several of Matthew’s friends came and went as their work schedules permitted! We had pizza for dinner and went to our housing addition’s annual Family Fun Weekend Fireworks.
There were a few times that Matthew headed out with friends….without ME. No hovering watchful always concerned Mom eyes. GULP. Yesterday was a tough day for me. Even though I know Matthew sat thru Dr. Davie’s lectures on avoiding crowds, avoiding the sun and taking care of himself, I worried…..I lectured…and I only called him once on the cell phone! Matthew knows what he needs to do to keep himself safe…but good grief he’s been isolated for over 6 months now…I can’t blame him for wanting to just enjoy being a teenager. He did use his sunscreen, they did watch the fireworks from a hill all to themselves….he did the right things. But boy is it scary for dear ole Mom.
Well, things are great here! We are about ½ unpacked. We are falling into our medication, line flushing, dressing changes and gentle Mom harping loving reminders from Mom.
Our friends the Roos girls took pictures of our homecoming but then left for vacation, so it might be a week before we get the pictures! So, stayed tuned!
Keep praying and Never Give Up!
Love,
The Fab Five
Saturday, June 28, 2008 10:30 AM ET
10:00 Nancy and Matthew
are headed home ETA 1:00
Day 154
It is official …..154 days post transplant…166 days since we arrived in Cincinnati to start radiation….we are going home!!
It was a long day in clinic, lots of details to go thru, long discussion with Dr. D, picking up our grocery bag full of medications and lots of good bye hugs! We are as ready as one can possibly be to start the next stage of Matthew’s journey!
Labs today were very good. Plates are still low but holding their own. It’s been 5 weeks since he’s needed platelets…quite an improvement from our every other day transfusions of not long ago!
Here’s a few pictures from our last day in clinic as a Cincinnatian……..
Please don’t take my picture AGAIN Mom…….
Goodbye favorite scale………..
Goodbye Dr. Davies……..we love you!
Goodbye Mary Ann……..we love you too!
Mom and Mary Ann……..we had our very own little book club going with Mary Ann’s Mom too!........
We will spend the rest of today resting up, packing up and loading up some of our stuff into the van (hope it all fits). Then our plan is to be on the road tomorrow morning at 10am and be home sweet home around 1pm! Look out Fort Wayne………here……..we………comeeeeeee……..
We will have labs on Tuesday and clinic on Wednesday. I’m guessing we may need IV-ig on Wednesday since we didn’t have it this week, but we’ll see! We are excited to see all our Lutheran Hospital friends!!
Today’s Counts:
Hemoglobin: 11.3
Platelets: 24,000
WBC: 5,100
ANC: 3,720
Keep praying and we’ll see ya on the flip side……….
Love,
The realllllllly excited dynamic duo
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Thursday, June 26, 2008 8:43 PM
Day 153
Today has been a good and very busy day. We worked on some more details today. I did our laundry and we packed up all our clothes except what we’ll need for the next few days. We packed all our pictures and special gifts from everyone. All Matthew’s meds that aren’t being used at the moment are packed away. We made a huge dent. Our little home is starting to look less like “us”. We really worked hard to make our home away from home comfy, cozy and full of family. I can really see it now that we are starting to pack up. We are working on eating our frozen and refrigerated items so we have less to cram in our cooler. We are watching the last of our Netflix movies so we can get them mailed before we leave.
Matthew has been feeling really good. We are seeing NO side effects (thank you Lord) from last weeks decrease in steroids. Hopefully, the same will be true for our next taper tomorrow. Matthew still has a lot of bruising but no bloody noses or toes!
Keep praying and Never Give Up!
Love,
The slightly excited Dynamic Duo
PS Happy Birthday to my sis Susan!
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Wednesday, June 25, 2008 6:23 PM
Day 152
Today has been a whirlwind of phone calls. My head is actually spinning. There are a lot of details to work out for us to be able to go home! We are so lucky to have such a great team down here to help coordinate everything. Lutheran has been notified…..look out Lutheran folks we are coming to pester you all very soon! Our home health care team at home has been notified. We are working with the local lab we use about what labs they can or cannot do for us. We are working on getting refills figured out on all the meds that Matthew is on. We are working with our Home Health Care company here to be sure we have enough central line supplies to get us home and beyond for a bit. We are working thru my list of questions for Dr. D and will be discussing them in-depth I’m sure.
I’m starting to feel a bit stressed though to be quite honest. There really is a security blanket issue here. I know and trust that our team here wouldn’t let us go if we weren’t ready. I know and trust our team in Fort Wayne. But I’m feeling just a wee bit anxious. I’m sure once the details are worked thru that will help. Plus I know once we are home we’ll fall into our “new routine” pretty quickly. We are both so anxious to go home. I can barely get my arms around the reality of it all.
I went to talk to our staff here at Arcadia. They were happy for us! They have been such a wonderful group of people here…they really took good care of us.
Well, it’s time to think about dinner…….
Keep praying!
Love,
The Dynamic Duo
Tuesday, June 24, 2008 5:31 PM ET
Day 151
Ok, we are trying really hard not to get TOO excited down here in Cincy!
Matthew’s appointment went very well today. He was indeed busy growing platelets…..they were 28,000. Still really low but growing on his own. It has been exactly one month today since his last platelet transfusion! Yeah rah!!
Today we started talking transition plans……..In usual Nancy style I had a million questions. Sarah, our transplant coordinator, kept saying that is a Dr. D question. So upon our return home, I developed my list of questions and emailed them off to Dr. D. We should hopefully get our answers and the plan solidified on Friday to …..gasp…..go……excitement brewing……..home! If the taper we do on Friday goes well next week then we might…….yipppeeeeee…..get to…..double gasp…go home for good…. just in time to celebrate INDEPENDENCE DAY….how appropriate!!!
Today’s Counts:
Hemoglobin: 11.1
Platelets: 28,000
WBC: 4,000
ANC: 2,920
Keep praying that Matthew tolerates the next taper well and that we can finally go home!! Also, say a prayer for our friend Brandon who continues to fight so hard.
Love
The trying not to flip out from excitement Dynamic Duo
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Monday, June 23, 2008 10:11 PM
Day 150
We are back in our home away from home! Our drive back was very uneventful (which is a good thing) and we made excellent time!
We head to clinic tomorrow morning. Our NP called today to tell us that Matthew doesn’t need to get IVig tomorrow since his Igg levels were over 1100 which is great!! IVig is the drug that seems to be triggering the bad migraine type headaches. So, we are all really glad he doesn’t need it tomorrow. Hopefully, his marrow has been busy growing some platelets so that we won’t need a transfusion.
We had a super wonderful weekend. It was perfect. So many special people came to visit this weekend and we enjoyed every minute. Matthew felt pretty good most of the weekend with just a few digestive type issues on Sunday.
Please say a prayer for another young man that went thru transplant at the same time as Matthew. Brandon is close to Matthew’s age and is having a really tough time right now. He is ICU, is intubated and in renal failure. He needs a lot of prayers. Thank you.
Keep praying…….and Never Give Up.
Love,
The Dynamic Duo
Sunday, June 22, 2008 10:20 AM ET
Day 149
Good morning! We are having a great weekend here in the Fort! Matthew has had a few friends over every day so far this weekend.
Brittany and Logan had their big soccer tournament yesterday. They both won their first game and advanced to the next level. Logan’s team went down in a heartbreaking one point loss. Brittany’s team was up by one (according to Brittany) when they had to call the entire tournament due to lightening. Both of the little ones were pretty bummed. After the tourney, Mrs. Roos (our biggest fan) joined us for lunch at McDonalds. That cheered the gang up quite nicely!
I have to put an unsolicited (and unpaid) plug in for the Wii gaming system. Our family has really enjoyed this system so much. We have guests of all ages and all skill sets over to play and we ALL have fun. We have as much fun watching (and laughing hysterically) others as we do actually playing. I have never heard as much screaming and giggling in one room as we did yesterday. And it is good exercise too…..my right arm actually hurts today after playing some crazy rapid rabbit game. Can’t figure out how to get my hips to hurt though…just what I wanted a toned arm…..hmmmppffff.
Matthew made us some delicious cookies yesterday. He is becoming quite the culinary expert these days.
Matthew looks and feels pretty good. He has had to take some anti-nausea meds a few times this weekend. That seems to work pretty well for him. All and all, he’s doing well!
Keep praying and Never Give Up!
Love,
The Fab Five
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Friday, June 20, 2008 11:20 PM
Day 147
What a great day today has been! Clinics went well and guess what?? Matthew did NOT need platelets. They went up to 21,000 all on their very own. He stubbed his toe and had a bleeder this morning but he got it to stop. So given the fact they are over 20,000 and the bleeder stopped we didn’t transfuse. Hopefully, this is the start of sumpin good!
We talked with our BMT head cheese today! (We love you Dr. D) We discussed how we can go about getting us home. She was leery about tapering his steroids now but we talked about the fact that if he was going to have trouble like he did the last time we got down to 20mg then I wanted him in Cincinnati where they know how to deal with BMT issues such as GVHD. She agreed. So starting tomorrow we are tapering down from 30 to 25 and then to 20 next Saturday if he does well. Then if he gets past the 20 mg ok, then we are talking about some serious “we are coming home” stuff! I’m not getting too excited after last month’s disappointment but I did grin a wee little bit!
After clinic we headed home for the weekend! We had a nice dinner together and then Brittany and I headed out to watch the Roos Girls and Katie (the infamous life saving lifeguard) dance their hearts out downtown at the Fort Wayne Embassy Theater. It was a great show. Brittany and I loved every minute!
Matthew had three buddies over for some Euchre tonight. When I got home they were all shooting the breeze in our kitchen. How normal is that? It was such a FANTASTIC sight to see! Thank you Lord for the gift of friendship and the gift of Mom being able to see it!
Today’s Counts:
Hemoglobin: 11.7
Platelets: 21,000 (yippeeeeee)
WBC: 4,700
ANC: 3,620
Conversations with the Little Ones:
Talking with Logan:
Logan had his first swim meet the other day. He was so excited to tell me how it went…our conversation went something like this:
Logan: Mom, guess what??
Mom: What Logan?? (See how attentive I can be?)
Logan: I swam in my first swim meet of the year!
Mom: Yes, I heard Logan. How did it go? (said with sincere interest)
Logan: It went great! I got two 1st places and one 2nd place!
Mom: OH MY GOSH!! YOU DID?? FOR REAL?? TWO 1st Places? (bursting with pride)
Logan: AND a 2nd place Mom.
Mom: Oh Yes a 2nd is great too! (gushing like Old Faithful)
Mom: Gee Logan, you have really improved over the winter. I can’t believe it. I’m so so proud of you. Gee maybe you’ll be in the Olympics soon!
Logan: Yup, I sure did great!
Poignant pause….Mother and son soaking up the excitement and pride……
Logan: Hey, Mom….
Mom: Yes, Logan?
Logan: I was the only one that swam in the first two heats and one of two who swam in the third heat. (said in a totally casual, matter of fact sort of way)
Dead Silence…..
Mom: (slight muffled giggle)…for real??
Logan: yep!
Mom: (sounds of laughter turning into hysterical giggles) Well, I’m very proud of you…two 1st places and a 2nd is great (giggle giggle)
Talking with Brittany tonight:
We were discussing two friends of Matthews that are brothers. Brittany was trying to figure out which was which. Our conversation went like this:
Mom: Brittany you know who Brian and Pat are.
Brittany: Yes Mom (sounding slightly annoyed) I know who they are. I just can’t remember which is which.
Mom: Well, Matthew ran Cross Country with Brian remember.
Brittany: but Mom (sighing loudly) that was a year ago. I can’t remember what he looks like.
Mom: Well, Brian was there when you earned your “red band” at the pool last summer…remember?
Brittany: Mommmmmmm, I know who Brian is but who is Pat?
Mom: (running out of ideas) Well, Brian is older and is taller. And Pat is shorter and a bit heavier.
Brittany: silence….thinking….thinking…thinking….
Brittany: Mom?
Mom: Yes dear? (proud of herself ….she finally explained it just right)
Brittany: How do you know Pat is heavier?? Did you pick him up??
Ba Dum dum…………….
Boy it’s nice being home with my little ones!
Keep praying and Never Give Up!
Love
The Fab Five
Thursday, June 19, 2008 7:21 PM ET
Day 146
Today was a pretty laid back day. I worked most of the day via email and phone…just love technology! We did some laundry, watched a movie (Kingdom which was so-so) and I scrapbooked! Matthew is napping after making us a nice dinner.
Tomorrow we head to clinic at 9:30 and then if all goes well, we are heading home for the weekend! I sure wish gas prices would slow down….ugh.
Keep praying and Never Give Up.
Love,
The dynamic duo
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Wednesday, June 18, 2008 5:21 PM
Day 145
Our Weekly Adventure!
We took a trip to downtown Cincy and then crossed the river into Newport Kentucky! We have spent most of our time on the north part of Cincy and in Uptown Cincy (where the hospital is located). We decided we wanted to actually see what downtown looked like, plus we wanted to see the Reds and Bengal’s stadiums. Our favorite NP, Mary Ann, suggested the Levee in Newport so we grabbed our water, camera, hat and sunscreen (a biggie for Matthew) and headed south.
It was pretty exciting working our way thru town. The first thing we saw was the Bengal’s stadium. It is called the Paul Brown Stadium and it was built in 2004.
Then we saw the Cincinnati Reds Ballpark which is called the Great American Ballpark and was built in 2003. Personally, I liked the old Riverfront Ballpark much better….sigh. 
Then we crossed the river into Newport Kentucky on the big yellow bridge, lovingly called the McDonald’s Bridge since it looks like McDonald’s big yellow arches.
While we were cruising around Newport, we discovered a Riverboat cruise line. We both thought it might be fun to see the sites from the river side. 
Since Matthew cannot tolerate the sun, we sat inside in the a/c. We were practically the only other ones sitting inside....that was very nice! Matthew had his mask on the entire time and I kept pouring hand sanitizer every few minutes. (nerve wrecking for me......)
Here’s Matthew checking out the Red’s ballpark from the riverfront side……
Here is the Purple People bridge……yes it’s a huge purple bridge that only walkers can use to cross the river…..we didn’t think Matthew had the stamina to attempt that yet…maybe next time!
The red building is where the Cincy rowing team is housed….and the pretty church way up high has a bunch of steps leading up to it, I guess a prayer is said on every step. (I should have made notes on all these interested facts!!)
Isn’t this a cool building?? It’s a condo, each room has rounded walls and it costs like a million plus per condo….(needed dang notebook again!)
The boat tour was an hour long. And as we jumped into our van, the rain hit….talk about good timing! We both had a great time on our adventure today!
Matthew’s had a lot of nausea today and is tired but so far so good with the low platelets!
We also wanted to say congratulations to two people. Our friend Claudia’s brother Rick, became a Priest last week and said his first Mass at St. Charles on Sunday. Best wishes to Father Rick. Also, our friend Katie is a life guard at a local pool near home. She actually saved someone recently! Way to go Katie!!
Keep praying and Never Give Up……
Love,
The Dynamic Duo
Tuesday, June 17, 2008 6:43 PM ET
Day 144
We were right… Matthew’s platelet counts fell again. Today they were 17,000, which explains all the bruising. The BMT doc decided to “hold off” on transfusing platelets since he isn’t having bloody nose problems at the moment. We are close enough to the hospital that we can go get transfused if we run into trouble. They really want his body to start producing them on his own. So, hopefully we make it until Friday without needing platelets. Everything else lab-wise looked good. His kidney results looked much better. He has really been working on increasing his fluid intake and the results are showing!
Nausea and platelets seem to be the only unresolved issues. We will be seeing Dr. Davies on Friday to try to develop a “plan” for getting us home. I am someone who operates much better with a plan. Even if the plan has to change (which in the world of BMT is quite likely), I feel better having a plan. At least I feel like we are all working in the same direction and are addressing all the issues.
Today’s Counts:
Hemoglobin: 11.7
Platelets: 17,000
WBC: 3,800
ANC: 2,960
Keep praying and Never Give Up!
Love,
The Dynamic Duo
PS I put the cicada video clip on You Tube....can anyone find it?? A challenge has been issued!!
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Monday, June 16, 2008 9:43 PM
Day 143
We are back safe and sound in Cincy. Matthew had an upset tummy and went directly to bed!
Tomorrow morning we have a clinic appointment and from the looks of Matthew’s feet, I’m guessing he’ll need platelets. His feet are covered with some nasty looking bruises.
Keep praying!
Love,
The Dynamic Duo
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Sunday, June 15, 2008 12:43 AM
Day 142
Matthew is one big walking bruise. I hate to think what his platelet count might be. I’m just hoping that we don’t spring a nosebleed this weekend. Matthew looks and feels pretty good overall, just tired. A few friends have stopped by to visit which makes Matthew immensely happy! (and me too!)
The kids all surrounded Greg with Happy Father’s Day hugs and surprises very early this morning! Brittany decided that Daddy HAD to have a Webkinz….so Dad is now the proud owner of a Monkey named George. Logan bought Dad a new Wii game since he decided Dad HAD to have a new game! Matthew made Dad the coolest stepping stone for the garden that we don’t have….it has his hand print and says Fathers Day 08 and is filled with beautiful cut glass. He worked very hard on it and it turned out beautiful!
We are very thankful that God has provided us with such a lovely weekend, that Matthew feels pretty darn good, that friends have come to visit and that we are all together to celebrate Fathers Day with our #1 Dad!
Happy Fathers Day to all our special Dads that we know. You guys are the best!
Keep praying and Never Give Up!
Love,
The Fab Five
Friday, June 13, 2008 6:34 PM ET
Day 140
We are home safe and sound. Matthew woke with a bad headache and I gave him his new migraine medication (Maxalt). It worked great! He has been headache free the rest of the day. After a horribly bad evening for dear ole Mom, I woke headache free for the 1st time in weeks! So far so good for me too! Hurray!
We are looking forward to a pretty laid back weekend with hopefully some visits with friends and family!
Have a great weekend everyone! Keep praying and Never Give Up!
Love,
The Fab Five
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Thursday, June 12, 2008 9:54 PM
Day 139
The Haunting of Room 592…………..
We have decided that room 592 is haunted….the last time we were in that room was the mysterious low O2 sats and high heart rate from Pentamadine that resulted in an overnight stay.
Today, we were in room 592 for a blood transfusion. Matthew’s hemoglobin actually held at 9 but he was having some symptoms in addition to being very pale his heart rate was high. So they decided to go ahead and transfuse. Matthew has had oodles of blood transfusions with no reactions. Well, today in addition to the high heart rate his blood pressure decided to sky rocket and his face & ears turned beet red. So, we stopped the transfusion after the first unit. We unanimously decided it was room 592 and all decided to NOT assign Matthew to that room ever again. Thankfully, we got the first unit in so that should bump him up enough to enjoy the weekend. When we first arrived, Matthew’s BP was just a bit higher than normal so they aren’t really sure if this was a true reaction to the blood product or if we have a BP issue or ….or…or….. They ran a urine analysis to be sure there is nothing going on with his kidneys that might cause high BP. They also talked with the Neurologist about his continuing headaches and her first question was “does he have high BP”? Hmmmmmmmmm
Oh, platelets went up 1000 so we didn’t do the platelet transfusion….so I think that is good ….i guess….yes, it is….i think….
His WBC was high today. In fact the highest it has been in years while not on GCSF. I think that is good too………I guess…yes….i think so….
We didn’t get home until almost 7pm. We ate some dinner and then my headache decided to flare up again. I felt so awful that I took a two hour snooze. I have had a bunch of suggestions of what to try to relieve this stupid headache and I’m trying them all one by one. Maybe a nice visit home is what we both need…..
They wanted us to try stopping the Zofran (for nausea) to see what happens with his tummy issues. So, we skipped the afternoon dose and during dinner he was nauseous so we restarted the Zofran. Sigh.
I’m starting to feel this frazzely type of feelings. I’m not sure what issue we are working on anymore and my headaches aren’t helping me think too clearly. I’ve decided that if my headaches don’t improve over the weekend, I’m going to try to see if my family doctor can squeeze me in Monday morning before we have to head back to Cincinnati.
I feel like I’ve been rambling in circles tonight, probably because that is how my life seems to feel lately.
Today’s Counts:
Hemoglobin: 9
Platelets: 22,000
WBC: 5,600
ANC: 4,370
Back to my bed and cold wash cloth i go......
Keep praying and Never give up………
Love,
The still sorta dynamic duo
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Wednesday, June 11, 2008 5:41 PM
Day 138
Matthew’s headache was pretty bad today and I’m on day 12 of my stupid headache. Matthew took some meds and then felt good enough to invite me on a picnic. We made our sandwiches, grabbed our camera and Sorry Game and headed back to our favorite park!
It was quite an adventure, during lunch Matthew sprung a nosebleed, and luckily those few platelets he had stopped it pretty quickly. Also while we were there we were highly entertained by the song of the Cicada. Pretty soon we noticed that the Cicadas were so loud we were actually talking very loudly to be heard over their song. I took a video on my camera so people could actually hear how loud it was. We honestly have never heard anything that loud coming from bugs. We kind of felt like we were in some kind of alien/horror movie. The clip is too big for me to figure out how to put it on here…but if you are interested in hearing the cicada and seeing Matthew’s bright shining smile….I think maybe I can email it to you!
As we looked around we started seeing just how many of these bugs were in this park. We saw the bugs on trees, crawling and flying around and even their “shells” that they have shed. Then we noticed all the holes in the ground where they had burrowed. It was really quite interesting and a tad bit GROSS at the same time.
Well, because we were so interested we decided to take some pictures…..and because I’m sure there has to be at least 2 interested people out there, I decided to post them here….
Ok, here is a cicada on a tree….isn’t he gross looking??? I think he might be molting….but I’m not sure….if there are any Entomologists out there feel free to correct me!
This one appears to have shed (molted) his skin…check out those red beedy evil looking eyes ....ewwwwww
Here’s a pile of shedded skins….some really busy cicadas in this park…
Now this is the interested and less gross part to me….the holes that those little buggers crawled out of…….
Now here is the handsome dude that we all know and love….
And his weary Mom…….
Thanks to everyone for the encouraging guestbook messages and emails and phone calls….I sure was feeling discouraged yesterday but y’all pointed out just how far we’ve come and that the light at the end of this incredibly long 8 year tunnel is getting closer. So, thank you!
We have clinic tomorrow to see if Matthew’s marrow has been busy growing some cells. I think the plan is for us to go home for the weekend….if all is calm with Matthew we are going to attempt a trip home to celebrate Father’s Day with the most awesome Dad in the whole wide world.
Keep praying, Never Give Up and listen to the Cicada’s song!
Love,
The Dynamic Duo
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Tuesday, June 10, 2008 12:41 PM
Day 137
Today was sort of disappointing at Day Hospital. Matthew’s platelets dropped to 21,000, just a mere 1000 over his transfusion cutoff. So now we are hoping the nose bleed issue doesn’t crop up again. After 2.5 weeks of holding steady or increasing a bit they took a big dip. His hemoglobin was at a frustrating number. It was 9 which is low enough to make Matthew feel crummy (fatigued, light headed, dizzy and I think headaches are a factor too) but too high for a transfusion. His BUN and creatinine (kidney numbers) were also creeping up since we stopped the fluids. Ugh.
They are still trying to figure out what to do about the IVig induced migraines. They had me double his Elavil and continue the med I re-started this afternoon to try to get this one stopped. Then they are debating about giving him hydrocortisone prior to the next IVig or switching to subQ-ig. This is a different way of infusing under the skin instead of thru the vein. Double ugh.
We continue the anti-nausea med for now as well to help keep the nausea away after eating.
The good news was that his Bp was normal after stopping the Bp med this weekend.
We are going back on Thursday since his plates and hemoglobin were both borderline. We’ll see what happens, maybe his marrow will get busy growing some cells!
Todays Counts:
Hemoglobin: 9
Platelets: 21,000
WBC: 3,900
ANC: 2,960
Keep praying and Never Give up!
Love,
The slightly disappointed dynamic duo
Monday, June 9, 2008 1:07 PM ET
Day 136
The headaches and nausea after eating have returned. We are both thinking it was from the IVig. I called our NP to see what we could do immediately for his head/nausea issues and what the heck we’ll need to do with the IVig long term. She is going to talk with the docs and see what they think. GROWL.
Matthew and I decided yesterday to work on some puzzles to give him something to keep him busy. We are working on a nice sea scene.
Our friend Jonnae’s battle is over; she is with our Lord now. Please say a prayer for her family for strength to get thru the upcoming difficult days and beyond. My heart hurts for them and all the others that we have said good bye to, also. This is a hard circle to be in…….
Keep praying and Never Give Up…..
Love,
The Dynamic full of headaches Duo
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Sunday, June 8, 2008 11:07 AM
Day 135
Mom has a headache that won’t go away. I’ve had it since a week ago Friday. What is up with these stupid headaches anyways?? I spent most of the day on the couch in and out of a headache induced sleep state. Speaking of headaches, Matthew did have 2 headaches after the IVIG so I’m glad they reduced the concentration. It might have triggered that horrible headache he had before if they had kept the original concentration (thank you Dr. Jossi).
Believe it or not we did have some productive moments yesterday. Matthew has been working on a secret project for someone special (evil laugh). We made some Easter cookies…yes Easter cookies. Don’t ask. And Mom sorted pictures for her next scrapbook project….the life to date of the Princess. I’m still working on Logan’s 1st Communion scrapbook, but Logan is doing it with me, so I needed a project to work on while Logan isn’t with me! I hate to admit how many pictures I’m using…….anyone want to guess??
We also found a different BW3’s today. According to their site was only 1 mile away vs. 5.9 miles away (our normal BW3). Well, I’m here to tell you that it was wrong….only trust Mapquest (have I ever mentioned what a wonderful invention Mapquest was….). Anyhoo, we got to see the little town or whatever of Blue Ash, drove by a “huge” small airport which made me think of my Dad, and found a SUPER WALMART. Oh boy, what an adventure! Used more gas, which was my original reason for trying the new location but had an adventure! Speaking of BW3’s….did that strike anyone as amazing?? It was amazing to me since Matthew wasn’t eating anything a month ago, was not eating much 2 weeks ago and was throwing up everything 1 week ago……yes our superhero was eating medium hot wings yesterday! Yahoo!! Can you feel the excitement??
I think today will be a “go on a walk day” and a “watch some Netflix (have I mentioned how wonderful Netflix is before??) movies day”. Maybe we can make some Halloween cookies???????????
Keep praying and Never Give Up!
Love,
The Dynamic Duo
Friday, June 6, 2008 9:13 PM ET
Day 133
We just got home from Day Hospital. There was a snafu with the IVIG delivery to the room, so we had a late start. They also diluted the IVIG concentration to hopefully avoid any chance of headaches, so the infusion took longer. The good news was that we missed rush hour traffic!
We are trying some new “stuff”. We are going to give Matthew his last IV bag tonight and then stop the IV’s to see how he does. We’ll check his kidney functions on Tuesday and see if he can make up the fluids on his own. We also dropped the appetite stimulant and blood pressure medicine. Dr. D didn’t want to taper the steroids just yet. She wants to see how he does with the changes we are making today and then decide. He’s had such a positive trend since his discharge a few weeks ago she doesn’t want to push the steroid reduction at this point. So, it’s a weekend full of unknowns….hopefully everything goes smoothly.
Platelets held stable…. no growth but not a loss either…so I guess we’ll take it! His chemistries and counts actually look pretty good!
We have decided to stick around town this weekend. Two weekends in a row just seemed to be too hard on Matthew last time so we’re not going to push our luck especially with all the med changes.
I also received word that one of Matthew’s Never Give Up Team members (I think maybe Michelle S??) brought a wonderful surprise to the BMT parents on the 5th floor. I heard it went over GREAT and they were very appreciative! Thank you thank you!!
Today’s Counts:
Hemoglobin: 10.3 (holding steady)
Platelets: 33,000 (these too)
WBC: 4,800 (this is actually NORMAL)
ANC: 3,650
Keep praying and Never Give Up….please also say a prayer for our friend Jonnae and her family. She is in her final days towards her journey home.
Love,
The Dynamic Duo
Thursday, June 5, 2008 5:00 PM ET
Day 132
Today has been another good day. Matthew ate a bit less than yesterday but he’s is still nausea (on Zofran) free and eating. His drinking is about the same as yesterday. Tomorrow we have Day Hospital for IVIG and labs and hopefully no transfusions! We’ll discuss whether we can taper the steroids again to see how that affects his digestive issues.
Weather wise, we had another bad storm last night but today it is sunny and HOT. I’m talking 95 degrees hot. We go from the tornados of Kansas to the heat of Las Vegas (thinking of ya Stacey).
Today I had an important errand to run. I had to find a pair of shoes for Matthew who decided to outgrow his old shoes by a whole size. Now the challenging part was two-fold. One, he’s a teenage boy and I’m a middle-aged (sounds better than old) Mom. Two, I couldn’t take his FOOT with me into the store. I opted for a simple pair of black Champion sandals on sale at Payless. This was our BMT challenge of the day and I rose to the occasion with flying colors (plus they had a cute pair of flip flops on sale for $4.99)! Shhhhhhhhh Greg, I needed them I really did!
Today, Matthew was watching the Food Network. He was watching Taste of America where they highlight specialties of different cities in America. They previewed a bowl of Chili. We both instantly knew the next city would be none other than Cincinnati. How did we know that? Well, the snippet they showed was a plate of chili heaped with shredded cheese. You see here in Cincinnati they “do” there chili a whole lot different than my famous chili recipe. They do a 2,3,4 or 5-way chili. They put spaghetti on a plate and top is with a pretty thin, no chunks of meat and no beans chili (a 2-way) or they add a heap (and I mean a heap) of shredded cheddar cheese to the top (a 3-way) or they add chopped raw onions before the heap of cheese (a 4-way) or they add kidney beans (a 5-way). Many of the recipes add unusual seasoning such as cinnamon, nutmeg, or cloves. The texture and taste is completely different than what we are used to. Matthew and I both said that we wouldn’t have ever guessed Cincy 6 months ago! Just a little flavor of Cincy for ya!
Keep praying and Never Give Up…
Love,
The dynamic and nicely shoed duo
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Wednesday, June 4, 2008 11:00 AM
Day 131
Holy cow…we had some wild and crazy weather during the past 18 hours or so. We’ve have tornado sirens blaring, thunder, lightening, high winds, tornados, funnel clouds and a wild and crazy weather man. Even though this whole weather biz was pretty scary and serious, the weather man had Matthew and me cracking up. I think this was his 18 hours of fame and he was taking full advantage of it! At one point he was almost hollering “take cover…dive, dive, dive”. Then 15 minutes later he says “if you can hear my voice (in other words…. you are still alive???) You can come out now”. I don’t know but this had Matthew and me giggling. Then there was his co-hort Cindy, whose job it was to operate the computer. The poor thing was zooming when the weather-dude said zoom and then while she was zooming in he is hollering “Cindy give us a bigger view”. Poor Cindy deserved a pitcher of margaritas in my humble opinion. At one point the weather-dude was explaining that when the VPI (Viper something or other Indicator) went over 7 that meant there had to be a tornado. (dive, dive, dive) It went up over 9 so he was absolutely 100 percent sure there was a tornado. The news-guys says “Ok, weather-dude we are going live to Sheriff Do-Good who is live in the spot that the VPI is telling us there is definitely a tornado”. Then you hear Sheriff Do-Good on the line saying “Nope, don’t see no tornados around here”. The look on the weather-dude’s face was priceless. He spent the next half hour defending the VPI. (you know just because Sheriff Do-Good doesn’t see one doesn’t mean there isn’t one out of his line of sight…good point weather-dude) The weather-dude and poor Cindy was still going at it as I fell asleep late last night.
This morning I woke to the siren blaring again so I flipped on the TV to see if I was going to Kansas or not…and who do I see?? The Weather-Dude still talking about the Viper thing-a-ma-bob!
Now, don’t get me wrong, tornados are very scary and dangerous and must be taken very seriously. But……..a little amusement whilst cowering in the bathtub is not such a bad thing!!
Having survived the Cincy tornados of 2008, I move on to our hero, Matthew. He is doing pretty well this morning. He drank some OJ and ate 2 not 1 not 0 but 2 toaster waffles this morning. Woo Hoo! Hopefully, this is the start of something good!
Ok, I’m off to check on the weather-dude and poor Cindy…
Love
The Dynamic albeit windy Duo
Ps Today would have been my Mom and Dad’s 48th wedding anniversary. Happy anniversary Mom and I miss you terribly Dad.
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Tuesday, June 3, 2008 3:00 PM
Day 130
Today was a good day at the clinic. Our great news for today was that Matthew’s was busy growing a few platelets this weekend! He went up again WITHOUT a transfusion! It’s still low but going slowly up!! He went from 30,000 on Thursday to 33,000 today! Yahoo! Matthew’s hemoglobin is slipping down about the same speed as in the past. I’m guessing he’ll need a blood transfusion next week. The bad part is that he starts to feel pretty weak and overall crummy when his hemoglobin gets below 9.
We started back up the anti-viral medication today as Matthew has a mouth sore under his tongue. Hopefully, it’s nothing but they did a swab just to be sure.
We are continuing the IV fluids since Matthew still isn’t able to drink enough on his own. He also lost another 2 lbs since Thursday, which is about 11 lbs since the “eating issues” cropped up. The good news is that he is eating a bit now as opposed to not at all. So, I guess that’s an improvement. For now we are keeping the Zofran (anti-nausea med) round the clock so we don’t have a day like Saturday.
All and all, things are going ok today. Matthew is napping and I’m off to answer work emails.
Today’s Counts:
Hemoglobin: 10.2
Platelets: 33,000
WBC: 2,700
ANC: 1,940
Keep praying and Never Give Up……..
Love,
The Dynamic Duo
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Monday, June 2, 2008 9:51PM
Day 129
We are back safe and sound in Cincy. Our drive was pretty uneventful, which in our lives is a GOOD thing. We arrived back to our home away from home to find a wonderful stack of mail. Thank you Stacey, Joan and Ms Witte’s 4th graders (who kindly made some really wonderful cards) for thinking of us! It sure was a nice surprise to find!!!
Matthew is all hooked up to his IV's and is sleeping soundly.
Tomorrow morning we have clinic again. I’m anxious to see what they have to say about Matthew’s digestive issues. I hope they have some good ideas. I’m also really curious to find out what his platelets are! Wouldn’t it be great if they went up again on their own??!!
Keep praying and Never Give Up
Love,
The Dynamic Duo
Sunday, June 1, 2008 1:15 PM ET
Day128
We are still home (FTW home that is). Matthew is feeling a bit better today. He still doesn’t feel great but the vomiting has stopped. He ate a wee little bit and is trying his hardest to drink. This stinks…….
Love,
Nancy
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Saturday, May 31, 2008 8:40 PM
Day 127
Matthew isn’t feeling very well. He has been nauseous and started vomiting a few hours ago. I’m sitting here debating about calling Cincinnati. I feel kind of nervous being 3 hours away from my safety net. Please say a prayer that he starts to feel better and we don’t have to “go to a hospital somewhere”.
Love
Nancy
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Friday, May 30, 2008 5:15 PM ET
Day 126
We are home safe and sound! We were about a half hour from home when Matthew remembered that we forgot the IV pump. So, I called our trusty nurse Shelly at Lutheran to see if we could get our home health care here to deliver a pump for us. Sure enough we had a pump in our possession a few hours later!
Matthew hasn't eaten or drank very much today so I’m glad we have the pump situation figured out. Greg and I ran to the grocery together (ahhhhh a nice date indeed) to pick up some family favorite meal items. It was nice spending quality time in the rice aisle with my hubby!
Brittany and Logan were excited to have us home and we were excited to see them!
Keep praying!
Love,
The Fab Five
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Thursday, May 29, 2008 4:15 PM
Day 125
I have ANOTHER announcement to make:
Matthew made some platelets ON HIS OWN!! His platelets today are 30,000. He has not needed a transfusion since last Friday! They went up on their own from Tuesday’s 25,000. There was much cheering to be had in clinic today! There were even rumblings of the next step (assuming this becomes a trend rather than a fluke) of eventually getting his double lumen C-line surgically removed. Holy cow! We are starting to see those signs again, remember the signs we started to see prior to the spirally crash we encountered a few weeks ago?
For now, we will be heading home for the weekend tomorrow. We are wildly excited. We’ll be going home on nightly IV’s and the hope that we are (as big bad Sean D would say) back on the road towards Fort Wayne…
So much excitement this week…I don’t know if my ticker can handle it all!
Keep praying…..and Never Give Up…
Love,
The excited and dynamic duo
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Day 124
I have an announcement to make:
Matthew completed his sophomore History class today! I’m busting out with pride. Since his transplant, neither chemo, or radiation, neither puking or pain, nothing stopped my son from completing 2 semesters of English, 2 semesters of Algebra II, 2 semesters of World History, 1 semester of computer applications and 1 semester of Health. The only class he is lacking is Science and that’s because he was taking Chemistry and they couldn’t quite figure out the “lab” thang. I’m just so impressed with his determination and drive. Please join me in a huge round of applause for SUPER MATTHEW!
Love,
The Proud Mama
Tuesday, May 27, 2008 5:38 PM ET
Day 123
We had a good day at the clinic today. We are trying some experiments with the medications Matthew is on. We took him completely off of one drug that he is on that has nausea listed as a side effect. In addition we had increased his steroids this past Friday. Hopefully, that will help the eating/nausea issue. Good news of the day was that Matthew didn’t need platelets. He held on to his platelets over the weekend! Yeah.
Some have questioned why the concern or seemingly surprised reaction by our staff to Matthew’s eating issues. I don’t think anyone is “surprised” per se. A lot of Mom’s have emailed me with similar eating issues with their BMT kids. (thank you to all you loving BMT Mom's & Dads) Most of them have said they came out of transplant with these issues. Matthew didn’t. He was eating pretty normally until 3-4 weeks ago. The docs seem to link it to the tapering of steroids. The body stops producing natural steroids if they are being given at such high doses. We taper the steroids to allow the body to re-start the production of natural steroids. So, it can be that his body hasn’t re-started yet, it could be a bit of GVHD or it could be a multitude of other things. Transplant and its accompanying radiation/chemo regiment wreak havoc on the body. We are trying different ways to help the issue without putting Matthew thru invasive testing. The concern is that Matthew’s body has been thru hell the past 7.5 years. A normal body needs proper nutrition to function well, let alone a body that has been beat up and trampled on for so long. We want Matthew not only to feel better but to gain some stamina and to avoid getting sick with something that his immuno-compromised body can’t fight. Thus the concern. Ok, just had to get that off my chest.
Our plan is to go home for the weekend if all goes well for the rest of the week. We are thinking of alternating weekends. Two weekends in a row proved to be very hard on Matthew.
We are still doing the nightly IV fluids to supplement Matthew’s “not drinking too much” issues. Matthew took a 3 hour nap after clinic. I think clinic days wear him out too.
All and all, we had a pretty good day.
Please continue to pray for Jonnae and her family as they go thru the difficult process of saying “see ya later”. My heart aches for her family and the families of the kids that recently passed. This is a horrible disease….
Keep praying for Matthew too and never give up!
Love,
The Dynamic Duo
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Day 122
We had a glorious weekend. Our picnic was perfect. The weather was clear, sunny and high 70’s, perfect weather for a picnic. We took a small little hike to our favorite creek, and it pretty much did Matthew in. His chest and head were both hurting, so we dragged him to a place to sit down to catch his breath. He is such a trooper who just wants to do fun and normal things.
The eating issues have improved somewhat. He is eating a little at each meal but his stomach really bothers him and he has to lie down for awhile afterwards. It seems like eating is a chore for him anymore. He isn’t drinking as much as he needs to be but he’s trying in that department as well. Thankfully, the IV fluids will keep him from dehydrating again. Matthew took lots of cat naps this weekend. He seems pretty tired out. As soon as Greg and the kids left, he headed to his room and fell asleep immediately. He’s been snoring away since 5:00.
We surprised Brittany with a birthday cake, complete with a singing candle. She was truly surprised. We had lots of little surprises for her throughout the whole weekend!
Brittany’s very surprised look……..as Matthew carries her cake
3 wishes for our Princess……
Yeah she did it and we are oh so proud……
I just love birthdays!
My new shirt from the movie ENCHANTED!!!!!!!!!
Oooooooooooo, a new Webkinz from Logan……the PINK POODLE…..
Greg and the little ones left around 5:30. Today, Brittany was the one with sad tears. It really breaks my heart to see one of my little ones cry. Hopefully, it won’t be much longer until we are all home together!
We have a clinic appointment bright and early tomorrow morning. I hope it’s a smooth and quick one.
Keep praying and Never Give Up……
Love,
The Dynamic Duo
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Sunday, May 25, 2008 9:38 AM
Day 121
All is good in our little world! We have been thoroughly enjoying each other! My little ones want to fill every moment with “doing” something. I think I’m getting exhausted since I had to take a nap yesterday. Luckily they are completely happy hanging out in our apartment. Matthew played some xbox with Greg, I’m not sure who “won”! I took the little ones to the indoor pool. Matthew took several naps today and actually ate a bit at each meal today. He was trying so hard. I think he seems to be feeling a bit better so maybe the increase in steroids is helping! Brittany and I watched our favorite movie, Enchanted! It is so darn cute, I highly recommend it! Today we have a picnic planned and a birthday celebration as well! Ms. B has no idea what we have planned!!
This has been a sad week in my world of ALL. We have lost 4 children from our All-kids list in the past week or so. I had talked with a lovely woman, Gloria, last Wednesday. I was giving her some advice about transplant for her son. Yesterday, I received the news that her son Ethan had a seizure and a brain bleed. He is now is heaven. Our friend Jonnae who we went thru transplant with has been given the news that there is nothing more they can do for her. Her parents brought her home to spend her last few days with her family. My heart is heavy but yet joyful that Samuel, Elijah, Craig, Ethan and soon Jonnae are with our heavenly Father, finally free of this horrifying disease.
Enjoy your family my friends, as I intend to do, we never know when our time or a loved ones time to head to Heaven might be.
Happy Memorial Day weekend everyone!
Keep praying and Never Give Up….
Love,
The Fab Five
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Friday May 23
Day 119
Today was a long but non-eventful day at clinic. Calm is good. I ran into a whole bunch of people, both staff and parents, today so I was yacking the whole day…I know you are all shocked at that bit of news. I am still receiving apologies from different staff member regarding our “issue” w/ the anesthesiologist the other day. I also received a follow up call from the Patient Rep regarding their follow up. All is good and I am happy with the response from everyone. Matthew and I are now making silly about the event, anytime one of us whines about something we say “now Mom (or Matthew) there comes a time in all of our lives that we must grow up”…and then we burst into giggles. All is good again.
We discussed Matthew’s tummy issues today in length with Dr. Davies. She still doesn’t think the VRE he tested positive for is affecting his stomach. She decided to increase his steroid dose from 20 mg to 30 mg. She thinks that might help. So, we are doing an experiment with the steroid dose. Also, that would help if there are some GVHD things happening inside. We shall see. She also ordered an Antibody/Heparin test today to see if Matthew has developed antibodies to Heparin (which he gets every time we flush or access his line). I guess this can contribute to Matthew’s ongoing low platelet issues.
Matthew’s spirits seem much higher now that we are home. We are both soooooo excited for the family to get here in a few hours! I have some fun things planned for the weekend and a party for our Princess’s birthday! I hope everyone stays well!
Today’s Counts:
Hemoglobin: 11.8
Plates: 19,000
WBC: 2,800
ANC: 2,240
Keep praying….and Never Give Up!
Love,
The soon to be Fab Five
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Thursday, May 22, 2008 5:38 PM
Day 118
Ugh. Eating and drinking remains an issue. Matthew ate ½ of an Eggo Waffle and then was so nauseous he went to lie down in his room. He pretty much slept the rest of the day. I am very glad I asked for Matthew to come home on fluids, as he has only drank about 4 ounces of fluid all day. His spirit is much better here even though the tummy remains a problem.
Our transplant coordinator called today and I guess one of Matthew’s tests came back positive. It is a bacteria in the gut that is resistant to a strong antibiotic called Vancomyocin. This can happen in immune-compromised people and people that have been on a lot of antibiotics. She told me that unless it would get into his blood stream or urinary tract it’s ok, due to the fact that it’s resistant to strong antibiotics particularly Vancomyocin. So, here’s the kicker, Dr. D doesn’t think this is related to Matthew’s eating/drinking issues and they don’t do anything to treat it since it’s resistant to antibiotics. Sounds just ducky to me.
Well, I’m off to go bug Matthew about eating a bite or taking a sip………wish me luck.
Please say a prayer for our friend Jonnae. We went thru transplant with them and she relapsed about a month ago. She had some bad seizures and other issues from the intense chemo they are using to get her into remission again. They are doing a BMA today to see if the chemo has done anything at all to clear the Leukemia. They are a great family with a brave child. They could use our prayers.
Keep praying….Never Give Up
Love,
The Dynamic nagging and non-eating Duo
Wednesday, May 21, 2008 7:03 PM ET
Day 117 – Update 3
Oh my gosh, I’m exhausted….even my bones are exhausted…I’m pooped beyond words….
Matthew finished his IVIG around 3pm. While he was getting his infusion, I ran to the hospital pharmacy to fill his numerous new prescriptions. Then I ran our stuff to the van while they were filling the scripts. Then I ran back to get the prescriptions and back to the 5th floor for Matthew. We fought rush hour traffic and arrived back to our apartment by 4:30. I got Matthew all settled and ran to Krogers. I haven’t been to Kroger’s for about 3 weeks so I knew we were completely empty. Plus I know Greg and the little ones are coming here for the weekend so I needed to stock up with kiddo-friendly food. I arrived back to the apartment around 6:00 and found the handy dandy luggage cart, brought our food in and unpacked it all. I returned the handy dandy luggage cart, moved the van to our preferred parking spot (close to the door so Matthew doesn’t have to walk so far) and carried in my 12 pack of DDP and 24 pack of bottled water. I then proceeded to put all the food stuff away and then started on the huge box of medical supplies that was delivered while I was gone. I had to put the pump back together, organize all his new IV supplies, and organize all his new and old meds. I had to throw out expired meds and make an entirely new med schedule since everything has changed so much.
Matthew has been sleeping the whole time, I need to wake him to try to get him to eat but he’s resting so peacefully I’m torn. He has had ZERO to eat today…zip…zilch…nada….and nothing to drink. I’ll be starting his IV fluids at 10pm tonight… hope I can stay awake.
I’m honestly exhausted I just feel like crying but I’m too exhausted.
Ok, I need to go email myself the new schedule and run to the front office to print it out…..aghhhhhhhhhh…and then I should eat something myself…I think I forgot about that but I’m too tired to be sure…..
We are happy to be “home”……..
Keep praying……and ……..Never Give Up
Love,
The happy to be “home” somewhat Dynamic exhausted Duo
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11:03 AM
Day 117 – Update 2
We have a plan. Matthew will be getting his IVIG today and then they plan to release us this afternoon back to our apartment sweet apartment. I told the docs at rounds that Matthew really wants to go home and that I could do the fluids at home myself. They all agreed. They are stumped as to what the stomach issues are but we all are hoping getting out of here might help. So, the plan is to get the IVIG, get all our new headache and nausea meds, I just spoke with home health care about what supplies we need and made the arrangements for delivery. Once that is all done, we’ll get released. We’ll need to come back to clinic on Friday (I think) for platelets and to see how the eating issues are going. In the meantime we can always call if anything changes. They will be watching his weight loss closely to be sure we don’t need to do TPN.
Matthew is happy, so I am happy.
Onward…….
Love,
The dynamic duo
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10:03 AM
Day 117
Last night Matthew really tried to eat. I kinda sorta forced him to try 2 bites, which he did. He spent the rest of the night with the puke bucket under his chin. He was so nauseous that we added 2 more anti-nausea meds to his IV. He was having such trouble that he couldn’t get his oral meds down. Finally at 1am he got the most important one in (the cyclosporin). I felt kind of guilty “making” him try two bites.
We woke this morning to more nausea but no need for the 2 additional anti-emetics and he took his oral meds. The waffle we ordered had one wee little teeny tiny bite gone once we sent the tray out. The dietician brought us some Fruit type nutritional juice (Boost Breeze I think) to try. The orange was yucky he said but he did drink a few sips of the fruit drink. I know we are both frustrated that he can’t eat or drink without the nausea. I don’t know what the plan might be today. Matthew really wants to go back to the apartment and I do too but I think we need a plan of sorts.
All the other issues seem to be resolved thankfully.
I’m starting to make some new friends on the unit in addition to a few that are still here from our long stay in January. There are some very nice parents here…all that love their children unconditionally. All that hate with every ounce of their being, watch their kids suffering so…..
Things were calm yesterday thank goodness. The response to our series unfortunate of events (sounds like a good name for a book Ha!) in Radiology has been overwhelmingly good. I feel confident that the appropriate steps are being taken to rectify the situation in the future.
We are just hangin out waiting for rounds……..
Today’s Counts:
Hemoglobin: 12.3
Plates: 22,000
WBC: 2,400
ANC: 1,660
Keep praying and Never Give Up
Love,
The Dynamic but trying to eat Duo
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Tuesday, May 20, 2008 7:23 PM
Day 116 – Update 2
The tests are all back and everything bad that they test for came back negative. They are pretty much stumped. Overall Matthew is doing better. The headaches are gone, fever is gone and so far no diarrhea today. He is still not eating. He really tried. He at a bit of a biscuit for breakfast, nothing for lunch and two bites of chicken for dinner only because I got mean and made him try 2 bites. He got nauseous and went to sleep.
Dr. Davies stopped by today and along with a million other people today, apologized for our nasty trip to the MRI place yesterday. She will be following up personally with the doctor herself. Matthew expressed to her that he thought he’d be able to eat more at the apartment than here. I say “good try ole chap”. She asked him to really try to eat tonight and tomorrow, if he eats a bit and if he remains fever and diarrhea free, maybe she’d give us a get out of jail card. I saw a wee little grin on Matthew’s face. That is an accomplishment as Matthew has been very down the past few weeks. If anyone has any “lets cheer Matthew up” ideas….have at it!
I’m feeling weary and sorta like I was hit by a Mack truck. Yesterday’s battle with the creepy poophead really took a lot out of me. Anger can be an exhausting emotion.
Once I found out we were going to stay at Hotel Cincy one more night, I packed up our laundry and headed to our apartment. I noticed our message light was blinking, so I checked for messages. The message was from Denise our lovely staff lady at Arcadia Suites. She was worried about Matthew and I and really misses her cookie monsters (AKA Brittany and Logan). How sweet was that? So I wrote her a quick note and left it up front, since she wasn’t working today. I did our laundry, took my wonderful shower in my wonderfully clean bathroom and even did a few scrapbook pages while I waited for the laundry to finish.
Helpful hint of the day (just call me Heloise):
If you ever find yourself in an apartment far away from your home and your toiletries are in the hospital room with your sick child and you step daintily out of your warm clean shower with your long hair tangled ever so slightly atop of your head and you discover you left your stinking brush at the hospital and terror hits……..don’t fret go to your apartment kitchen and find a plastic fork that you purchased to help in the germ department and ta daaaaaa instant comb! Now you can’t tell me that you didn’t learn something new today……..
Keep praying and never give up……
Here’s hoping for a better day tomorrow……
Love,
The weary mom and her nauseous non-eating son
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9:23 AM
Day 116
I’m going to start with our man Matthew. After the ordeal in the MRI place, even Matthew’s BP was elevated. (I think mine would have been so high I would have broken the machine). The nurse and I commented that it was high for him, so I told her a bit about the horrible experience. She told the night on-unit doctor, who came to talk with us. He was appalled and apologetic as well. He filed a report for me, told Dr. Davies (head of transplant and our primary BMT doc). A patient rep is supposed to come see me today to get a formal complaint made. I also ran into our transplant coordinator while Matthew was getting the test done and I had told her about the 1st part of the ordeal. I’ll fill her in on the rest today. So, I think the staff is responding to the issues very quickly and appropriately. Two doctors have both been in to talk to Matthew about basically ignoring the ridiculous doctor. The both explained that many adults are claustrophobic in MRI’s, in fact that is why they had to develop the open view. They were very kind and compassionate about Matthew’s experience and feelings he might be having.
The staff was discussing the possibility of needing an NG tube (the feeding tube thru the nose) or TPN (nutrition thru his central line). We decided to give him another day to see if the headaches being gone, a high hemoglobin level, the IV fluids, the round the clock anti-emetics and the appetite stimulant might help. Matthew was not thrilled at all about an NG tube (can’t say that I blame him I did that once and it’s not a pleasant thing) and I told him TPN might delay our release. So we’ll see how he does today with the eating issue. I know he’s really trying but just doesn’t feel well when he eats.
A few more stool sample tests are back and they are negative. There are a few still pending and 2 of them are ones I’m really interested in. He has had C-diff twice since his last relapse and we have been told that once you get it you tend to keep getting it while immune-suppressed. So, we’ll see. GVHD is always a concern but the BMT docs think at this point the volume of the issue doesn’t seem to be high enough for GVHD. Hopefully, we get the final results today and we’ll have some answers.
Matthew overall seems to be looking and feeling better. He is talking again and watching some TV…both things he hadn’t been doing for the past week.
Mom is somewhat calmer this morning. I’m not sure why there seem to be so many stressful situations going on here. Maybe the fact that Matthew had so many unexplained problems was stressing me out more than normal. But I do know that Matthew was obviously bothered by the event of yesterday. Thank you to everyone who left supportive gb messages and sent me emails and of course to my husband who casually asked if I was going to be ok for a few more days and if I thought I could avoid killing someone. SIGH.
Amy the amazing massage lady came to give Matthew a massage…I think I might have actually been drooling…..my neck hurts from stress, my back hurts from this chair bed. Yup, I was drooling as Matthew was getting his well deserved massage.
I’m not sure what the latest thoughts are on releasing us. I think they are waiting for the final lab results. I think I may have to run back to the apartment to do some laundry since we are starting to run low again. Oh and there is that wonderfully clean, dry, as long as I want to shower, shower waiting for me!!!
Today’s Counts:
Hemoglobin: 12
Plates: 23,000
WBC: 2,200
ANC: 1,470
Say a prayer for Matthew’s appetite to return, the headaches to stay away, for continued remission and for a peaceful and calm day in our little world.
Love,
The Dynamic Duo
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Monday, May 19, 2008 8:23 PM
Day 115 – Update 2
I seriously need a break. I seriously need to get out of here. Matthew needs the same.
Since they were unsure whether or not Matthew would be getting the MRV done today they had him listed as NPO (nothing by mouth) from midnight on. He had no appetite yesterday so the last time he ate or drank was yesterday at noon.
Finally around 4pm, they came to get us for the MRV. While we were going thru the normal forms and questions, the anesthesiologist from hell arrived. I have never in all my hospital experience met anyone as arrogant and condescending and just plain IDIOTIC in my entire cancer-mom career. This idiot sat there and tried to talk Matthew out of sedation. Matthew told him he gets claustrophobic. He then says “Matthew there comes a time when we all need to grow up…..”. I literally flew out of my chair and said “hold it right there….you have crossed the line buddy…my son has been thru more in the past 8 years than you ever have in your lifetime. You are preaching and we don’t need to be preached at”. He started to argue with me that he wasn’t preaching. I told him he WAS preaching and he was making me uncomfortable let alone Matthew. He left the room and came back a few minutes later and said “what did you have last week for the MRI?” I said “he had Versed” and he says “tell me more”…..duh…I’m not a stinkin anesthesiologist what more do I know about administering Versed. So, they finally take Matthew back at 5:45 and said it would be about 20 minutes and they would call me on my cell phone. Around 6:45 I started to get worried thinking maybe the idiot doctor had screwed something up. So, I went to find Matthew myself and I finally found him. For some reason, the nurse would dial my cell and some other poor lady kept answering. Hmmm… Well, the nurse says I think there might have been some miscommunication. Matthew received Versed last time. I whipped my head around and said “yes, what did he get this time?” She said “Profophol”. I said that I had told the idiot doctor he had Versed the last time. By this time, that lava erupting feeling was coming back and the idiot doctor comes back in the room and starts to PREACH at me again. “Next time you need to be more specific”. I just about screamed at him, in fact maybe I did. I told him that NEXT time he should read the stupid chart in the stupid computer so he knows what HE is supposed to be doing. The idiot had the nerve to start to argue with me. I was so angry that I finally just ended the conversation. The poor nurse was apologizing profusely. I’m so angry I just feel like screaming.
Then we get back to the room and I tried to order something for poor Matthew to eat and they won’t let me order because he is still showing NPO. So, I had to try to figure out who our nurse was since we switched shifts during our lovely adventure in the MRV place.
I got that figured out and dinner arrived at 8:15…..and of course he can’t eat any of it.
I don’t know when we’ll get the MRV results back. I don’t know if the viral test results from the stool sample are back yet……….agggggghhhhhhhhhhhh
I’m a bit on the edge….
Love,
The slightly frazzled Mom and her exhausted tired of not feeling well son
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10:42 AM
Day 115
Mom vented about the BMT doc in charge this weekend. I feel like the lava burst might have been averted. I also expressed that we aren’t going anywhere until Dr. Davies is ok with us going home. If she’s ok then I’m ok. Ahhhh…that feels good getting that frustration out.
We are going to proceed with the MRV. Matthew’s pain is gone but he says he still feels like there’s a “hole” where the headache used to be. That is the best way for him to describe it. Doing the MRV will eliminate the lingering questions of a clot.
The diarrhea continues and they are running (for sure this time) the full range of tests. (lava bubbling)
The eating or should I say not eating is still an issue as well. But the good news is he remains fever free.
Today our nurse says to me “hi, I know you from online”…..isn’t that amazing? Yes, Alicia, Felicia is our nurse today! Talk about a small world. One of the wonderful parents on the ALL-Kids list serve that I belong to told me about their favorite nurse once. Her daughter, Avalon, and Alicia loved Nurse Felicia. Well, Felicia is now at Cincy Children’s and is our nurse today. We also stole this same Mom’s favorite Oncologist (Dr. O). He is one of the Hem-onc docs in Fort Wayne now. Hmmmm, this sounds a bit like medical stalking!
Ok, I talked with our social worker today about “how can members of Team Never Give Up help the BMT parents in Cincy?” topic. Here are some ideas:
The only limitation she mentioned was that meal type food must be from a restaurant. There are about 20 families currently inpatient.
Here are some ideas I had:
1. Comfy socks or slippers
2. Toiletries (shower gels, hand lotion, shampoos, razors)
3. Baked goods (brownies, cookies)
4. Weekend salads (they would need to be from a restaurant) since the cafeteria is basically closed.
5. a Weekend meal or pizza
6. Change for laundry
7. Fresh fruit
8. Fresh Veggie tray (especially on weekend)
9. Anything “comfort-ish”
10 Cards or inspirational type things.
11. Something for a Dad that might be comforting….we do have Dad’s that stay with their child. So all you men out there reading this…Dan and Sean D come to mind might have some ideas here!
I love the idea of a class project or service projects. I can work directly with those of you that have those types of connections. So, get with me folks! For those of you that emailed or left gb messages that live in or around Cincy, you can get with me and we can coordinate for our clinic days and I can deliver or on weekends you can deliver directly to the BMT unit on the 5th floor. Just drop me an email and I’ll coordinate with our social worker. While we are still in Cincy, you can mail me items (not the restaurant food of course) and Matthew and I will deliver to the inpatient unit on our clinic days. Once we go home, we can take items with us when we have to come to Cincy for checkups. We would be thrilled to deliver them. I was thinking with any item, you should put a note card something along the lines of:
Help yourself! Something to brighten your day compliments of Matthew Fackler’s friends and family! And then “your name”.
You are all amazingly generous people. I was overwhelmed by the response to my thoughts on how we can help some parents feel comfort and love while going thru a BMT with their child. Thank you all for being such wonderful caring people.
Well, we shall see how the day transpires and what Dr. D has to say. Hopefully, we’ll be going back to the apartment soon.
Today's Counts:
Hemoglobin: 12.1
Plates: 26,000
WBC: 2,100
ANC: 1,430
It dawned on me last night when my friend Debbie R told me that this coming weekend was Memorial Day weekend (talk about living in a time warp), that my sweet little Brittany’s 6th birthday is next Tuesday. Aghhhhhh, we have nothing planned, no presents, nothing…it’s so hard to plan anything anymore. Greg and I talked about it this morning and I think we have a mini plan. Until something changes that is! The latest plan is for them to come to Cincy for the weekend. Hopefully, Matthew will be out of the hospital but won’t have to do the long drive home. If he’s not out, then Greg can stay with him for a night so I can hang out with the kids. And since it’s not “flu/influenza” season anymore the kids would be able to visit Matthew. Then while they are here we’ll have a birthday celebration for our princess.
Keep praying and Never Give up!
Love,
The starting to feel more dynamic Dynamic Duo
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Sunday, May 18, 2008 8:12 PM
Day 114 – update 2
Today has been a better day for Matthew. His headache is gone. The Neurology team stopped by and they were pleasantly surprised that Matthew’s headaches suddenly disappeared. Both of the new medications he is on take a few weeks to start to work. I think it might have been all the prayers! They put the IV-DHE and the MRV on hold for now. They felt much stronger that it wasn’t a “clot” situation since the headaches stopped. If it was a clot, the pain would continue until the clot disappeared. That sounds logical to me. They will decide tomorrow if they will do the MRV or not depending on whether the headaches come back.
Matthew is still running a low grade fever but nothing over 99.8 today. He is eating a little bit more than yesterday …about enough to keep a small bird alive…much better than yesterday diet that would only keep a flea alive. I think that is forward progress. Although he’s not wanting anything for dinner….hmmmpppfff
The other unresolved issue is the diarrhea. I was a bit frustrated with the BMT inpatient doctor today. This was the first time since we have been here that I have felt ANY frustration with our medical team. I will be calling our transplant coordinator in the morning to discuss my concerns. One of my worries is GVHD in the gut. It can cause all of the symptoms Matthew has been having in the digestive area but then again so can several other things. Today I found out that the tests I ‘thought’ were being run since Thursday haven’t been run. In addition to a few other “issues” I experienced, I found myself very frustrated and concerned. So, we’ll see ….before we get released I just want our primary BMT doc to be aware of Matthew’s symptoms. If she’s ok…I’m ok.
Matthew is pretty down in the dumps. I think this latest series of issues have him feeling pretty worn out. I’m hoping getting back to our apartment will cheer him up….
Keep praying and Never Give Up
Love,
Dynamic Duo
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9:48 AM
Day 114
So far so good today! Matthew woke without a headache this morning. He ate ½ a glazed doughnut too. Not much better definitely better than last week. He is still having diarrhea though. His temp was 99.5 this morning.
Each day I see more of the normal Matthew so I think that we are heading in the right direction. Of course, I don’t know what the underlying problem has been but whatever it is, we seem to be making some progress.
His labs looked much better today. His kidney numbers are beautiful thanks to all the fluids. His liver numbers are all normal for the first time in a while. His hemoglobin and Platelets are better thanks to the transfusions from yesterday. I’m sure getting his blood tanked up and his chemistries normalized are making him feel better too. His white blood count and ANC are better today, which makes me think he was fighting some kind of infection somewhere in his body.
Today’s Counts:
Hemoglobin: 11.0
Platelets: 35,000
WBC: 1,900
ANC: 1,290
We’ll see what the doctors have to say during rounds. I’m not sure if they will do the IV-DHE since his headache is gone so far today. I’m also not sure what the diarrhea and low grade temperature might be all about.
Keep praying and Never Give Up
Love,
The slightly more perky Dynamic Duo
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Saturday, May 17, 2008 9:18 PM
Day 113 – Update 2
Matthew is now officially tanked up. He has platelets and red blood cells both. Now would be a good time to encourage you all to donate blood and platelets for kids like Matthew who desperately need them and also to thank those of you that already do! He has lots of fluids in him too, his kidney numbers were starting to look better this morning already.
His headache remained a “5” on the pain scale most of today but is getting worse as I’m typing this. He still has the pain but its three notches lower than yesterday!
His temp has stayed under 100 today and was actually below normal a few times today. But then again, he had to have Tylenol for premedication for his transfusions. Tomorrow will be a better gauge since he won’t be needing transfusions.
He slept a lot this afternoon which I think he really needs. And the really good news is that he actually ate and kept in almost a whole HOT DOG! Nothing else for the day but hey that’s a start!
Tomorrow we’ll do the IV-DHE for the headache. He is doing well with his two new meds (the appetite stimulant and headache med). I’m going to need an entirely new med schedule when we leave here. Just when I get it all figured out, they change a few dosages, remove a drug and add a few more….sigh. I’m beginning to think you need a PHD to be a BMT Mom.
I ran back to the apartment for some clean clothes and a nice, warm, long, clean, puddle- free shower! YEAH! Upon my return I ended up with a killer headache too (it must be like the Daddies who get sympathy pregnancy symptoms), so I kicked back on my now comfier (thanks to the egg crate thingie I brought back) to read and watch some Netflix movies. Matthew and I both ended up sleeping several hours.
Weekends stink around here for food. I forgot the cafeteria pretty much shuts down on the weekends (which still boggles my mind since sick kids and their parents don’t typically go home on the weekends just because it’s a weekend). I was planning on having a yummy salad and was sorely disappointed when I remembered there are no salad bars on the weekend. I did find some peanut butter, a packet of honey from KFC (made me think of Justin) and a slice of bread in the parent lounge…..not quite as tasty as that salad I was dreaming about….
Matthew is going to have a headache cocktail because his headache seems to be getting worse and he is having some stomach issues again. Hmmmmm, I think they need to offer a Mommy cocktail as well since I am doing the sympathy pain part I should also be offered a sympathy cocktail…..
Thank you Aunt Debbie for the wonderful balloon bouquet! They are so darn cute and cheerful and I did indeed see a smile when they arrived!
Keep praying and Never Give Up……
Love,
The half alert dynamic duo
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Day 113
I think all the meds and fluids they have Matthew on might be helping a bit. Matthew looks somewhat better and I think he might just feel a wee bit better. We ordered him some breakfast, so we’ll see if the round the clock Zofran for nausea and the new appetite stimulant med might be helping the eating problem. He said the head pain was now a 5 out of 10 (better than the 8 out of 10 from yesterday). Thanks to all the fluids he didn’t lose anymore weight! His temp is down to 99.6 this morning. All an improvement.
Today, they will hold his Flucanazole since the IV-DHE doesn’t like the Fluc. Tomorrow he will get the 1st IV-DHE treatment to hopefully break this headache cycle he is in. I think the MRV is tomorrow or Monday to rule out clots.
So far so good in the culture department….nothing is growing! Two of the many viral tests they ran came back just fine.
Matthew’s hemoglobin and plates are both low, so he’ll be getting pumped up with some blood and plates today. I tell you what Matthew is getting a super fine tune up of EVERYTHING! I think he was in a downward spiral and we are slowly getting him built back up and a culmination of issues resolved. I said to Greg that over the past 3 weeks I’ve felt like Matthew was a snowball of issues getting larger every day. Then by Tuesday the snowball turned into an avalanche.
I couldn’t sleep last night so I watched two Netflix movies online! I just love Netflix…it has been an insomnia life saver many a late night for this Mom. We also have some movies that I grabbed on our way out the door on Thursday. Maybe today Matthew will feel like watching one!
After rounds, I’m going to run back to the apartment for some more clothes. Hopefully, everything will be calm while I’m gone!
We’ll see how the day goes. I’m rooting for today to be a much better day than yesterday and the day before!
Todays Counts:
Hemoglobin: 7.6
Platelets: 17,000
WBC: 1,200
ANC: 910
Love,
The slightly worn out but still Dynamic Duo
Friday, May 16, 2008 4:41 PM ET
Day 112 – Update 3
Man there’s a lot going on around here. Two Neurologists came by to examine Matthew. We now have a plan. They are going to do the MRV to rule out clots in the vessels that go over top and down the back of the brain. I guess radiation can cause clots so they want to rule that out. They are also going to give Matthew an abortive drug called IV-DHE (no clue what the real name is ….I’m a bit overloaded right now. He will get that three times per day until the headaches stop but no more than 10 doses. They are also starting him on Elivil (which Logan takes for his migraines). They don’t think it’s truly migraines but a migraineous type headache cycle that he is in. Hmmmmm….
Matthew still has a 102 degree fever. We are still waiting to see if anything grows in the two days of blood cultures. Nothing back on the viral tests yet.
Appetite…They are starting him on an appetite stimulant drug tonight as well. He has lost a good bit of weight and they get concerned at a loss of 10 percent of body weight. I think he’s at 8 or 9 lbs lost and 10 percent for him would be 14 lbs. I spoke with the dietician in the hallway about what they might do if the appetite doesn’t kick in and she said they would see how he’s doing on Monday but they may need to start him back on TPN (feeding thru his central line) if things don’t turn around. SIGH
Hey, the salad bar is awesome here! How’s that for good news!
Matthew seems pretty down in the dumps. He just doesn’t feel well and is very tired of being sick. It makes me so sad and I feel very helpless.
Keep praying………Never Give Up
Love,
Nancy and Matthew
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1:41 PM
Day 112 – Update 2
Matthew continues to feel yucko. His temp is now 102.2, so they drew more blood cultures and are running viral studies as well. His headache is still pretty awful.
They just sent in a Neurologist to examine Matthew. He has several “thoughts” that he wants to run by another Neurologist. He rambled off possibly doing an MRV which is like an MRI but it looks primarily at the vessels on the top of the brain. I guess radiation can cause clots. That’s just ducky. He also rambled off some other stuff but then said…well let me discuss and we’ll get back at you. I always find it amusing when doctors brainstorm with us….at least we seem to be getting to the bottom of the headache issues…..I HOPE!
Keep praying and Never Give Up……
Love,
The dynamic duo
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9:41 AM
Day 112
Good news of the day, the chair bed was still intact this morning.
Not so good news of the day, they are doing construction on the room right below us so some sort of pneumatic drill woke Matthew up at 8am. What the heck????
Mathew’s headache is still really bad. He is still not eating or drinking. His temp is back below 100. He is on two IV anti-biotics. We are still waiting on viral test results and to see if the blood culture grows anything. Overall, Matthew is just feeling yucky.
We’ll see what they have to say during rounds this morning.
Yesterday’s Counts:
Hemoglobin: 9.5
Platelets: 28,000
WBC: 3,300
ANC: 2,710
Today’s Counts:
Hemoglobin: 8.6
Platelets: 22,000
WBC: 1,800
ANC: 1,580
Love,
The Dynamic Duo
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Thursday, May 15, 2008 11:41 PM
Day 111 – Update 3
The saga of the chair bed…….
The story started on Tuesday’s visit to room 517 here on the BMT unit. This silly 3 part bed has major problems. On the first night, 2 of the 3 sections worked and the 3 section was lying on the floor. I was too tired to whine so I curled up and slept on the top 2 sections. Today, we arrived to the unit in the same exact room and I just knew they hadn’t changed out chair beds.
Around 9, I tried to open the bed….no luck….told Nurse #1….she tried…no luck…she called Ling the PCA…she tried…no luck….eventually we were both lying on the floor pushing and pulling and laughing hysterically….no luck….she tried another way and the 3rd chunk of the bed crashed off the frame onto the floor waking Matthew who stared at us both lying on the floor laughing….no luck…she called maintenance…..around 10:30 Boris and Gomer arrived to fix the bed…..Boris mumbling about nurses not opening beds….Gomer pulling and yanking…Boris yelling at Gomer (in thick Russian accent) “NO NOT ZAT WAY”….Boris still mumbling about nurses not opening zee beds….Boris pulls trash can out of the bathroom….flips on the overhead light waking Matthew….puts the chair bed on its nose and balances it on the trash can….Boris still mumbling about poor Ling not opening the bed by herself….Boris (who is probably 77 years old) is holding this 40 lb chunk of chair bed by himself while Gomer is mumbling “watch your back man”…..Boris finally slams chunk into place….kicks trash can out of the way and slams the bed back on its legs …..waking Matthew again….THEN Boris begins to lecture ME on not opening the bed….so I said “well, if I can’t open the bed and the nurse can’t open the bed…who’s supposed to open the bed every night…and does this person bring mints??”……Boris was speechless…..as Gomer was leaving I asked “is this thing going to collapse tonight” ….he said “gee I hope not”……sigh…
Stay tuned to see if I wake up on the bed or on the floor……
Matthew is feeling really lousy. They gave him a cocktail of two non-narcotic drugs for his headache. He is still very nauseous and is now vomiting on top of everything else. Poor kid just feels horrible. I’m hoping now that Boris, Gomer, Ling and I are done with the chair bed that Matthew can get some sleep….at least until they come in to take vitals at midnight….big sigh…
Love,
The still trying to be Dynamic Duo
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6:41 PM
Day 111 – Update 2
Here we go again…….
Matthew has been re-admitted to the BMT unit.
He started feeling worse as the day went on and finally around 1pm his temperature hit 100 so I called the clinic. We were told to come on in. So, figuring we’d be admitted I packed our bags and my trusty laptop. Sure enough by the time we got to clinic his temp was 101, his head was pounding and he was having trouble with diarrhea, and stomach cramps. He just feels like crap. He is still not eating or drinking anything at all. He’s lost about 6 lbs since Friday.
As we were getting labs and blood cultures drawn, a tech came rushing in saying she was here to do a STAT EKG. I calmly said “I think you have the wrong kid”, she checked her orders and told me she was in the right place. I was about to get burly with her when our BMT doc came in. She was surprised the tech was here that fast, even before she had a chance to tell me they were running the test. (HUH, why are you running an EKG on MY KID????
Then she says “we have the MRI test back and we have good news and not so good news”. At that point I began to blink, flush and almost hyperventilate. She asks “are you alright?” so I know that I must have looked as stressed as I felt. I said “I don’t know you tell me, you are running an unexplained STAT EKG, you have news on the MRI…..what is going on?”
Well, to make a long story short, the MRI did not show any structural issues, tumor or anything that would explain the headaches. (good news) It did show some “white matter” that was consistent with radiation and chemo but wouldn’t be the pain culprit. (not sure what kind of news for the long term) So, they were consulting with a Neurologist who thinks it might be migraines (lovely). She said he has so many things going on right now that they could be triggered by a combination of things. Tapering the steroids, Cyclosporin, dehydration, nutritional issues caused by not eating can all cause migraines. And she also thinks the narcotics he’s on for the pain could be causing rebound headaches that are exasperating the problem. So they cut him off the narcotics (the not so good news) and can give him another non-narcotic migraine type med via IV instead. The Neurologist wanted a baseline EKG before taking him on due to some of the meds he might need to try???? I don’t know, I didn’t get a solid explanation but the Neurologist is supposed to be coming for a consult soon I guess. So, after I realized the not so good news wasn’t actually horrible scary news I started to breath again.
So, they admitted Matthew for round the clock antibiotics and to try to figure out why he’s not feeling so well. Our NP says she thinks the headaches and this new chain of events are not linked but who knows.
So, we wait for test results to come back, get him some much needed fluids and antibiotics just in case it’s bacterial.
They put us in the same exact room…I hope they fixed the stinkin chair bed LOL.
Well, there are no pillows in here, I’m on a mission for some comfort for my guy!
Keep Matthew in your prayers and Never Give Up!
Love,
The Dynamic, tense and not feeling well Duo
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11:41 AM
Day 111
Is there anything magical about the number 111? Someone tell me YES please….
Matthew is just not feeling well. He is having all sorts of digestive issues and bad headaches. He looks like he feels like dog poop actually. He is also running a low grade temperature again. I am debating about whether I should call the clinic.
It makes me sad to see him feeling so poorly. I wish I could do something to make it all better…like wave the magic wand that my friend Sara gave me a few years ago.
Please pray that Matthew feels better soon and that the MRI results are ok.
You folks are a very brilliant group of folks. The ideas about how to “make a Cincy BMT parent feel loved and comforted” are fantastic. Keep them coming!
Keep praying and Never Give Up!
Love,
The Dynamic although sorta under the weather Duo
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Wednesday, May 14, 2008 7:09 PM
Day 110 – 2nd Update
We are back in the apartment! Matthew’s sats remained in a normal range the rest of the day. We still don’t know what caused all the problems but I think maybe they are thinking it was a bad reaction to the IV Pentamadine. Although, they have never heard of such a weird reaction…Matthew is the king of weird reactions though. I’m just relieved his lungs are ok.
He did fine during the MRI. We won’t have the results until tomorrow or Friday. Hopefully, it’s all ok.
Matthew finally ate about 2/3 of a peanut butter & jelly sandwich for dinner. The first food he’s had since Monday. He is completely exhausted and has been resting in bed since we got home. We are both looking forward to a calm day in the apartment.
Our next clinic visit is on Friday. I’m guessing he’ll need a blood and platelet transfusion but that’s just my guess.
Today’s Counts:
Hemoglobin: 8.8
Platelets: 34,000
WBC: 2,200
ANC: 1,520
Thank you for the prayers! Thank you also for the response to my “how do we lend a helping hand to the BMT parents?” question….keep them coming. We’ll get our heads together!
Keep praying and Never Give Up!
Love,
The Dynamic Duo
****************************************
11:49 AM
Day 110
We are hanging out on the BMT unit waiting for Matthew’s 1pm brain MRI. He will have some mild sedation since it will be a long noisy test with a head pounder. He is NPO due to the sedation, which is really not a biggie for him since he has ZERO appetite. He hasn’t had any food since Monday lunch and that didn’t stay with him. He is getting fluids thru an IV so I’m calmer since that will prevent dehydration and help the kidneys too.
Matthew’s O2 sats have been great without the help of oxygen all night and so far today. Overall, he is just not feeling well.
If the MRI shows nothing of an immediate crisis state, then I’m pretty sure we’ll be sprung later this afternoon.
I really miss our apartment. All the old BMT unit rules came crashing back….no drinking or eating in the room for Mom, having to hike to the ONE POTTY on the floor, and of course the dreadful chair bed. My chair bed was broken so I had like 2/3 of a bed but honestly I was so tired after the chaos of the horrific day in Day Hospital, that I fell fast asleep with no trouble. I went to the parents lounge around midnight to use the ONE POTTY on the unit and had happy (of sorts) reunion with two Moms that were on the BMT unit for months prior to our transplant. Neither of them has been released yet. That means those poor kids and their worn out Moms have been inpatient for over 6 months. I felt so lucky at that point. I also felt the need to DO something for the parents on this floor. I’m going to ponder long and hard on this to see how I can help. These parents are living in a nightmare with honestly minimal support from anyone. The accommodations for the parent are unacceptable in my opinion. I remember sharing our goodies that so many of you sent us during transplant. I would take a box of cookies or candy to the parent lounge and within an hour they were completely gone. Such small thing brought a tad bit of comfort to these parents. Anyone have any suggestions or thoughts on this topic? What can I/we do to make this ordeal a bit easier for the parent? Email or leave me guestbook idea if you have any!
Well, we have about an hour until they take us down for the MRI, so please say a prayer if you could that they figure out the cause of the non-stop headaches and that it’s fixable and not TOO serious.
Love,
The Dynamic Duo
**********************************************
Tuesday, May 13, 2008 6:49 PM
Day 109 – 2nd Update
We are all cozy in our room on the BMT unit. Matthew is doing better, everyone is calm again. His O2 sats are looking better too. He’s getting pumped up with fluids and that should help his creeping kidney numbers. He hasn’t eaten a bite today but is going to try again as soon as it’s delivered. I feel better that he’s at least getting some fluids…..I can quit harping for awhile…poor kid!
They moved his MRI of the brain to tomorrow at 1pm. We are hoping to figure out what might be going on with his headaches. I’m not sure if the headaches are causing some of the nausea maybe? Our BMT was rambling something about trying some different medications, talking to a Neurologist etc. Some of the meds she mentioned, I recognized from our frolics with Logan’s migraines. Hey, maybe I can get a discount like two for one or something. GROWL.
They are “observing” his O2 levels until the MRI is done tomorrow. Hopefully, it was a fluke of a day and they will be normal tomorrow and we will be able to head back to our comfy apartment.
All discussions of “going home” screeched to a halt today. Even before the panic of the day started they had told me they want him to be more stable before we go home “for good”. (Stable as in needing platelets only once a week, the headache issues figured out and addressed, and the appetite/eating issue resolved.) But it sound like once that happens the next step might be to continue our long weekends at our REAL home (Friday night to Monday afternoon) and Tuesday thru Friday in our Cincy home with clinic visits on Tuesdays and Fridays. Then once we can get to weekly visits we would go HOME HOME and go to Lutheran clinic weekly with a visit to Cincy monthly. That sounds pretty doable to me! It sure would be nice to get things stable again and it sounds great to be HOME for real!
Matthew is pretty tired after all the excitement of the day….I am too actually.
When I ran home to the apartment I found a stack of mail waiting for us! It perked Matthew up when I gave it to him up here in the hospital. Thank you Michelle for the snacks! Thank you Mary for the DVD’s. Thank you Ruth and Stacey for the cards! They sure meant a lot after a long grueling day at the hospital.
Keep praying for our Super Hero and Never Give Up!
Love,
The Dynamic Duo
*******************************************************
Tuesday, May 13, 2008 2:49 PM
Day 109
Well, this is a fine kettle of fish………
Matthew is being admitted to the BMT unit. He is not feeling so well. This weekend his eating and drinking was markedly decreasing. This morning we arrived to the Day Hospital at 7:30 AM. Nurse Brooke drew labs. Then Matthew sprung a leak. Yes, a gusher reminiscent of Old Faithful began. So, we all chuckled and mumbled, I guess he needs platelets. Brooke started his IV Pentamadine and about 20 minutes later Matthew got very nauseous, hot, his heart rate flew up to 159 and he began to shake. I ran for a puke bucket and the nurse. They stopped the Pentamadine right away. Meanwhile Matthew’s dry heaving (from no food or drink) and blood is spurting everywhere.
They gave him some IV Zofran for the nausea and finally after 1hour and 15 minutes the nose bleed stopped. Matthew’s headache really began to give him trouble, so they gave him some pain meds. Then about 4 hours later while he was resting, I noticed his O2 sats dropping. Normal is 100. I’m watching them drop to the low 90’s and then the low 80’s, then low 70’s and when they hit 69 I ran screaming for the nurse. When she heard O2 in 60’s everyone ran into the room. The BMT doc was paged, our transplant coordinator, the NP and our nurse AND me were all staring at the monitor watching it slowly creep back up and then drop back down again. They ordered a portable STAT chest x-ray and blood gases to be run right away. They changed the O2 probe to rule out equipment malfunction and then started him on oxygen.
The chest x-ray is normal, he sounds normal but the blood gases were low. They want to admit him for now to observe and keep him on oxygen but if the sats continue to drop they will do a bronch-o-something-or-other to rule out Pneumocystic pneumonia (PCP). The dreaded pneumonia we don’t want to have. I guess that is the only way to diagnose this as it may not show up on an x-ray or by listening. Low O2 is a symptom. UGH.
I also asked them to hook him up to fluids since he’s not drinking. He’s got fluids going now. They didn’t want to give him his platelets due to the pre-meds possibly further suppressing his O2. But now that we have him on oxygen they feel safe to proceed.
So……….I’m here at the apartment typing 10000 words per minute and packing some stuff for a 2 day stay. Luckily, we are only 15 minutes from the hospital if we need more stuff.
Please pray that we figure out what is going on with the headaches, the nausea, no appetite, not drinking and the dropping O2 sats.
More later…….
Love,
Nancy
Monday, May 12, 2008 9:36 PM ET
Day 108
We are back in Cincy safe and sound. We made excellent time on the way home! We had a delay with leaving home because Matthew suddenly didn’t feel so well. We finally got on the road at 6pm. He slept most of the trip back and is resting in bed now.
We have to be at Day Hospital at 7:30 Am….yikes!
Keep praying!
Love,
The Dynamic Duo
************************************************
Sunday, May 11, 2008 6:16 PM ET
Day 107
Yawn……… Stretch………Smile…………
What a lazy and relaxing day at our home. We’ve played some games, we’ve played on the computer and x-box, we’ve napped (ok, just me), we’ve had breakfast in bed (Ok, just me again), we’ve have handmade gifts of grand artwork dropped excitedly into anxiously outstretched hands (oops, that was me too)…hmmmm, I think it must be Mother’s Day or something.
Being a Mom is an amazing honor. I’ve always thought my Mom was special and very deserving of her annual day of love and respect. But there’s something about becoming a Mom yourself that puts a whole new spin on that whole “Mother’s Day” thing. I’m lucky…I have my Mom here to love and respect (unfortunately dinner plans weren’t a reality due to Grandma having a cold) and I have my children here to shower me with their love. I also have a husband here that spoils me rotten today and every day. I have my four children here with me. I, unfortunately, know way too many Mom’s that will only feel their child’s angel wings touch their hearts today. I am thankful that all my children are here. I truly appreciate the gift of Motherhood that God gave me 19 years ago. It’s really the gift that keeps on giving you know!
Yesterday, we enjoyed a day of soccer with the little ones and 2/3’s of the Roos Girls! Brittany’s team won by HUGE numbers of goals…so huge we all lost track of the final score. Brittany scored four goals on her own. That girl has tenacity and also Matthew’s drive to NEVER GIVE UP. She follows that ball in and even when the other team’s coach is bending over to pick up the ball she slams it in the net… YES! Logan’s team tied 2-2. It was a tough game but still very exciting.
Here’s some picture of my Logy Bear ….. He is #9….
And Logy Bear’s coach…I think I have a crush on the coach…giggle giggle…
And we can’t forget the biggest fan……..Mrs. Roos……
Oh, Matthew and I “found” Jesus on the way home on Friday…..This is a real statue on I75 north of Cincy about 15 miles. Isn’t it amazingly beautiful?
Speaking of Matthew the star of this blog……he’s still having headaches and his appetite is ZILCH. I’ve been a harpin mama this weekend about drinking fluids. His creatinine and BUN were on the high end of ‘normal’ on Friday so he really needs more fluids to protect his kidney from all the meds he is on. Harp, harp, harp. He also had a few signs of a bloody nose. Thankfully they never turned into a gusher.
Well, our dinner (made by Matthew) is almost ready….I’m going to go enjoy my last few hours of pampering!
Happy Mother’s Day to all of you that are Mom’s and are reading this! It’s a special day for a bunch of very special ladies!
Keep praying and Never Give Up!
Love,
The luckiest Mommy in the world
Firday, May 9, 2008 9:24 PM eT
Day 105
SURPRISE!!!!!!!!!!
We are home for the weekend! We wanted to surprise the un-surpris-able one in the family. And we did it. Greg opened the door and just stared at us!
Matthew got his IVIG infusion this morning and also needed platelets. There was a sense of disappointment in the air when the labs came back. After the big 43,000 of Wednesday we were all a bit surprised with 17,000. In fact, Dr. Jossi had them re-run the CBC by finger-prick just to be sure. Yup, we needed a transfusion.
The truly funny thing was that today when we were in Day hospital I mentioned to Mary Ann our NP that I was hoping Greg wasn’t coming to Cincy to surprise us! Well, after Greg recovered from his surprise, he said “we were coming down to Cincy after soccer to surprise you for Mother’s Day! That would have been too funny if we had passed each other on the highway.
We are thrilled to be home!
Today’s Counts:
Hemoglobin: 10.9
Platelets: 17,000
WBC: 2,600
ANC: 2,270
Keep praying and Never Give Up!
Love,
The Fab Five
**************************************************
Thursday, May 8, 2008 4:04 PM
Day 104
Sign Sign everywhere a sign
Blocking out the scenery breaking my mind
Do this, don't do that, can't you read the sign???
Well, there are signs everywhere here in Cincy…..
Sign #1:
Jess our friendly home health care delivery person came to pick up the IV pole, the IV pump and the IV adaptor and the Sharpie box…..We are done, done, done with all that IV stuff! Hooray!
Sign #2:
Doug the Pharmacist called to discuss what we needed for delivery tonight. I think he was kinda sad that we won’t be getting deliveries anymore (except for every other week supplies). He paid me a nice compliment by saying that I was one of his easiest clients ever. I guess he was glad I’m an overly organized person!
Sign #3:
Matthew and I are starting to box up stuff we don’t use daily and our “winter” wardrobe as well. We have a nice pile forming in the corner of the apartment behind my desk! We sure have accumulated a bunch of stuff over the 4.5 months!
Ooooooooooo, isn’t this exciting!?!?!?!
Matthew did a ton of work on his History paper today. I think he worked 3 hours on it! I got our laundry done and answered work emails (in between looking for signs of course). Matthew’s head seemed pretty pain free today but his stomach has been bothering him today. I’m not sure if it’s from the oral meds or what. Sarah (our transplant coordinator) called today to say that Matthew’s Cyclosporin level was way too high again, so we are not to take tonight’s oral dose and we’ll re-check it in the morning.
We have to be a Day Hospital at 7:30 am for a cyclo level, lab work and IVIG. His IGG level (his immune system-ability to fight germs and such) was way low today. Talk about confusing LOL. I hope that his platelet counts are the same or even higher!
All together now………………….
Sign Sign everywhere a sign
Blocking out the scenery breaking my mind
Do this, don't do that, can't you read the sign???
And the sign said everybody welcome, come in, kneel down and pray
But when they passed around the plate at the end of it all,
I didn't have a penny to pay, so I got me a pen and a paper and I made up my own little sign
I said thank you Lord for thinking about me, I'm alive and doing fine.
Love,
The Dynamic Sign Seeking Duo
*************************************************
Wednesday, May 7, 2008 6:34 PM
Day 103
Good Evening:
Today’s clinic visit was short and sweet and full of very exciting stuff! We drew labs and waited for the results. Matthew and I, as normal, put our platelet guesses on the dry-erase board in our room. Matthew guessed 22,000 and I guessed 27,000. Well, I’m happy to report we were both significantly UNDER the actual plate count. Are you ready for this whopper?????
Matthew’s platelet count was 43,000! YAHOO!!! WOOPPPIIIEEEE!!! So, we didn’t need a platelet transfusion today! His other counts looked really good too. His liver and kidney numbers were both a bit high but not over the top high….just need to watch them high.
Exciting news for today was the fact that we were in and out of clinic in under 2 hours!
The big news of the day was that next week we shall be moving to two times per week to the clinic! Another big step towards “you know where”!
And even more exciting and promising news is that we will do our (hopefully) last dose of Cyclosporin in an IV form. We will have our level checked tomorrow morning and start our first ever ORAL dose of Cyclosporin! A huge….huge…huge…step towards going “you know where”!!!
Boy oh boy, everything seems to be moving fast and in the right direction. I’m knocking furiously on wood as I type this…..
We still have some issues to deal with such as bad headaches and the appetite/nausea issue but things are turning around!! There are lots of coordination type plans that have to be discussed and decided upon as well. The whole transition plan will need to carefully thought out and worked thru! What a happy plan to be making!!
Today’s Happy Counts:
Hemoglobin: 12.0
Platelets: 43,000
WBC: 4,300
We are feeling the GLOW people…I hope you can feel it too!
Keep praying and Never Give Up!
Love,
The slightly excited Dynamic Duo
Tuesday, May 6, 2008 8:26 PM ET
Day 102
Good Evening!
Headaches seemed somewhat better today! It was really bothering him this morning but he seemed better as the day went on.
Matthew started working on his History paper this morning. I think today was the first day in a few weeks that he was able to focus on homework.
We found a new park today…not a beautiful as our first park adventure but the company was GRAND and the picnic food we packed was good! The birds were doin their thing and the pavilion we found to stay out of the sun was empty and nice and clean.
Tomorrow we don’t have to go to clinic until the afternoon. Hopefully, platelets held or increased so we can attempt to hold off a platelet transfusion until Friday! It would be so awesome if we could move to a Tuesday/Friday schedule. Home health care will come draw blood on Thursday since they want to see where his cyclosporine level is since we cut it back so much on Monday.
Back to American Idol!
Keep praying…
Love,
The Dynamic Duo
************************************************
Monday, May 5, 2008 7:26 PM
Day 101
B-I-G….. S-I-G-H……….reality is painful…..
Reality is that Matthew and I are back in good ole Cincy. The rest of our family is back home in Indiana (sounds like a good song title?)
Reality is that Matthew and I spent the day in the clinic.
Reality is that Matthew needed platelets.
Reality is that everyone is in a tither about Matthew’s continuing headaches. A lot of possibilities are being considered (thankfully CNS relapse has been ruled out), including medications, allergies, continued cell growth causing pain in the large flat bones of his skull (eewww), vessel “issues” or other “issues” caused by the radiation in his brain….ugh
Reality is that medicine is not always an exact science. Matthew “head” will be the topic of discussion over the next few days. We were given several suggestions on what we can do to alleviate somewhat the pain until we can figure it out. Since Logan is the King of Migraines, we have some tricks up our sleeves on this one too. One of the things we may do is an MRI just to rule out the yucky stuff. Stay tuned.
Reality is that the body doesn’t always do what it’s supposed to do. Today, Matthew’s Cyclosporin levels were high again, so we are not giving the night IV and are reducing the dose until we draw another level on Friday.
Reality is that everyone on our team recognizes that we desperately want to go home, especially after our taste of normalcy this past weekend. So, our plan for this week was to give the platelets today, hopefully hold on Wednesday ifthey are close to the 20,000 cutoff and see if we can go until Friday without a platelet transfusion. If that all happens, then they will move us to 2x/week clinic visits which is another step towards getting home!
Reality is that Matthew’s latest “I have no appetite and I’m nauseous when I eat issues” can be from a variety of sources such as pain meds, switching to oral steroids or blah blah blah. We are going to “watch” this issue for a bit and see what happens. His weight loss stopped so that is a good thing!
Reality is that as usual these long days at the hospital coupled with a busy fun weekend, really wore us both out. Naps for all!!
Reality is that our support system continues to support us and somehow seems to know when we need a “pick-me-up”! When we arrived back to our digs, we had a box from the East Coast….yes the official NYY hat and a surprise T-shirt were waiting for us. I’m still working on the official “unveiling” though! We also had a singing card that sang a very appropriate “I Will Survive” tune for us! And to really spread some cheer around our apartment were some cheery “Never Give Up, its spring, we are praying, get well etc” cards from Ms. Witte’s 4th grade class back at Matthew’s alma mater and Logan and Brittany’s current school…..St. Charles! You guys rock!
Reality is that we have made great progress….when we stop and take a peak behind us it is overwhelming how far we’ve come.
Reality is that we know we’ll be going home soon and what a joyous homecoming that will be!
Keep praying!
Love,
The Dynamic Duo
******************************************
Sunday, May 4, 2008 11:46 PM
Day 100
Does anyone else hear trumpets blaring?? Today is Day 100! Yeah! In the world of BMT Day 100 is a huge accomplishment. I’m so proud of Matthew for fighting his way to Day 100 and beyond. I’m so proud of Greg for being SUPER DAD, holding down the Fort in the Fort (ha), keeping Brittany and Logan safe & happy in their somewhat normal world. I’m so proud of Logan and Brittany for carrying on with their young little worlds without their Mommy there to…well…you know…be their Mommy. I’m so proud of Justin who has entered the adult world of living in his first apartment and working quite hard to afford it all without Mom in town to keep a watchful eye. Heck, I’m even proud of my two dogs! I’m proud of our schools and church community for being there with us and for us every step of the way. I’m proud of our Cincinnati Children’s Hospital team, for guiding safely and successfully through the entire BMT process. Never have I seen a staff quite as caring and professional as this team. I’m a proud and happy Mama!
Logan’s First Communion was a spectacularly blessed and happy event. The only thing that would have made it even more perfect would have been to have Matthew with us at Mass and lunch.
Logan looked incredibly handsome in his suit! He did everything just perfect! I think he might have been a wee bit nervous!
After Mass, Grandma and my sisters and families headed to Logan’s favorite restaurant……..LOGAN’s! Since Matthew can’t be around a lot of people, we weren’t able to have our traditional big party at the house. So, we opted to celebrate with our family at Logan’s favorite place! While the family headed to the restaurant, who unfortunately doesn’t take reservations, our immediate family headed to the church gym for a reception. We wanted to say a quick hello to some friends that I personally haven’t seen in almost 4 months! While we were there we snapped a few pics…..
Logan and Msgr Suelzer outside the church………
Logan and his teacher, Mrs. Brickley….
Logan posing with Sister Pat who we happen to think is very special….
We stayed a few minutes and then headed to meet the rest of the clan.
Logan and Grandma waiting outside the restaurant ….
And here’s Mom too…
Aunt Susan and Justin lookin fine……..
Cousin Bryce is REALLY liking those ribs!
Logan opening gifts…….
The weekend was just so perfect….we got to see so many friends and family. Matthew was able to visit with his special friends. I was able to attend Logan and Brittany’s soccer games (Mrs. Roos in tow). I was able to share in Logan’s special day….it was just perfection……..until…..it was time to leave.
Little Logan, my sensitive, quiet youngest son began to cry. I held him tight and asked why he was crying. He whispered “I want you to stay…..” and the tears turned into big sobs. Then Brittany noticed Logan crying and SHE joined in. Oh dear, it was really hard to leave them both crying while Greg tried his best to comfort them both. I think each “see ya later” is getting more difficult. We just have to get ourselves back home…really…really….soon.
Tomorrow we need to be back to clinic at 9am. Matthew is pretty sure he’ll need platelets since he has a new crop of bruises all over his bod. SIGH.
Onward we go…..happy and sad all at the same time…..
Today, our family is thanking God for allowing us to be together, for keeping us safe, and for keeping Matthew in remission.
Love,
the Dynamic duo
******************************************
Day 99
Good Evening,
We are home and are thoroughly enjoying ourselves. Logan was so surprised! Greg had us enter thru the garage and hide in the laundry room. Then he called Logan downstairs to “get one of his First Communion gifts” (giggle giggle). Logan and Brittany came down with Brittany hollering “no fair, Logan should have to wait until Sunday for a gift” (gee thanks Brittany). So, Greg sat them both down on the couch and close their eyes. Matthew and I tip-toed into the family room and Greg said “Happy First Communion Logan” and I shouted “SURPRISE”. As soon as Logan and Brittany heard my voice, they both dropped their hands in complete and utter shock. Logan said “Are you home TODAY??” Joyous hugs ensued! It was such a great surprise….I can’t believe half of Fort Wayne was able to keep this a secret from both Logan and Brittany!
Today, The Roos Girls came over. Kim hung out with Matthew while the rest of us went to Logan and Brittany’s soccer games. They both did super-dooper! Both looked great and both won and both seemed so happy that Mommy was able to cheer them on! Matthew’s buddy, Ernie, came down today too. Matthew really seemed to enjoy being with his friends!
Here’s Brittany………..
“I’m open, I’m open!!!”
I need a rest, Coach……
Logan goofily cheering his lil sis on……and so is Mrs. Roos!
Part of our family “family photo”………………..
Logan tried on his First Communion suit tonight so we were sure it was all ready for the big day tomorrow. Mom, of course, had to share some pictures of her very handsome, grown up son……….
Here he is!
Brittany cheering her big Bro on…..
I have a feeling it’s going to be really difficult leaving home for Cincy again….ugh….
Well, tomorrow is our big day! Thanks for all the prayers….I’m sure they were a big part of Matthew and I being able to make it home!
Love,
The Fab Five
Friday, May 02, 2008 7:50 AM ET
Day 98
Good Morning,
Hopefully, if all goes well, we will be in our home with our family in about 7 hours! We can’t believe that this might actually be happening!!
Keep praying!
Love,
The Dynamic Duo
*****************************************************
Thursday, May 01, 2008 5:40 PM
Day 97
Good Evening,
Matthew seems to be having a rough time recovering from the bone marrow aspiration and spinal tap he had done on Tuesday. He is in significant pain and is sleeping a lot. He went to bed early last night, slept in late today and has been napping most of the day today.
We did manage to get in a walk around the apartment property today. It is gorgeous outside today, in the 70’s and breezy. Matthew did well on the walk but was pretty pooped afterwards.
We also played some x-box together and that wore us both out. Those games seem pretty real if you ask me!
I was reading some literature that the National Bone Marrow Registry sent us recently. They are an amazing organization that has been involved in our BMT process from day 1. They send info packets that coincide with the phase you are in during the process. The info we just received discusses the “aftermath” of a transplant. They made a very valid point that has me thinking a bit differently. They said the actual transplant itself can be a very short time span. It is the recovery period that is the long process. It can be months, years or even a lifetime. I guess I have watched Matthew bounce back from incredibly difficult chemotherapy time after time year after year….this was so much more plus it comes on top of over 7 years of constant chemotherapy. Matthew has a long recovery period ahead of him. BUT the one thing I am sure of is that Matthew will recover in style as always. He will continue to amaze me and many others. It’s unfortunately a slow and painful process. The good news is that he has so many people that love him and will be here to help him. Most importantly, he has God on his side….
We have to be up bright and early tomorrow to do our last minute packing, do the morning IV’s and oral meds and then be at the clinic at 9:30 am. Matthew may or may not need platelets. My guess is if they are close, we’ll transfuse to be safe. After we are done, we’ll be stopping back at the apartment (which is just a hop, skip and a jump off the highway) to pick up our luggage and most importantly the meds that need to be refrigerated. Then we’ll be on our way HOMEEEEEE!!!
Does anyone else find it amazing that Logan’s big day is the exact day that Matthew hits Day 100?
Keep praying for Matthew’s recovery and for continued remission and for our safe trip home.
Thank you everyone…
Love,
The Dynamic, soon to be fantastic five, Duo
*********************************************
Wednesday, April 30, 2008 6:40 PM E
Day 96
Gooooood Evening:
Houston, we have a problem. Around noon I received a frantic text message from a dear friend that happens to teach at Logan’s school. She said “Matt can stay with us this weekend so you can still come home. I assume you know Logan went home with the flu”. My text message reply was “WHAT????” and a few other expletives here in Cincy. Judy then called me to say that Logan threw up at school and was absolutely green. My heart sunk. I thought good grief, we begged, we jumped medical hurdles, we’ve been talking to everyone under the sun to rearrange schedules on Friday, change home health care delivery schedules, etc, etc. Everyone on our team has bent over backwards to get us home for Logan’s big weekend. Matthew is doing everything humanly possible to stay well and now this??? It’s on the other end??? Talk about screaming in frustration. Well, I called my Mom who gave me the up-to-date report. By the way, I just have to mention how WONDERFUL our school is. They knew Greg was here with us during our April crisis and they somehow knew my Mom doesn’t drive so they were going to drive my little Logan home. Bless them!! Anyhoo, Aunt Jen happened to be on her way to my house so she was diverted to go pick up Logan (thank you Jen). Upon his arrival home, Grandma gave Logan some migraine medicine and he collapsed on the couch into a dead solid sleep. I guess he slept for hours and when he woke he was fine. We are 99 percent sure it was a migraine! According to Logan, it hit him hard and it hit him fast and the pain was so bad he got nauseous and before he knew what was happening he threw up. This is pretty much what happens when he gets a super bad migraine. Soooooooo, I think maybe just maybe we are back on track for our big surprise. Geez!
Matthew was pretty much a zombie today, had no appetite and wasn’t drinking very much. He had to have 2 doses of Dilaudid too and the pain was still pretty awful. So, I called the BMT team and we jointly decided to remove the Fentanyl patch. We are to continue the Dilaudid and alternate with Tylenol w/Codeine. I’m also supposed to watch both his spinal tap and aspiration sites for signs of infection. I guess there is a higher risk of infection since he is immune suppressed (just ducky). Matthew’s BMA site was so sore that he asked for some heat packs. Darn, we were all out so we had to head to Walgreens which happens to be right beside Kroger and we needed a few staples. So, I got the heating pad at Walgreens and ran into Krogers. Since Matthew is so doped up on narcotics, I took him with me in the van and he rested while I ran around the stores.
Ok, so here I am in the check out lane and I decided that the cute little check out girls at Krogers have NO CLUE what this “GO GREEN” bag concept is all about. I handed the cashier (feeling mighty proud of my contribution to saving our earth) my green well actually black (isn’t that stupid they should have made it green) cloth bag and she gave me my .05 cent credit and tossed it to the bagger girl. Out of the corner of my eye I watched the bagger girl turn it over and glance around with a dazed look. She finally pointed to it and said “do you want me to put something in it????” Um…………..
Well, while I was giggling at the bag girl, I suddenly remembered that in the crisis of the past few weeks I had forgotten to share the “Top 10 Uses for a Plastic Krogers Bag” with you…..so here they are in no particular order (got that from Dancing with the Stars) the “TOP 17 (not 10) USES FOR A PLASTIC KROGER’S BAG”:
1. A great place to put used tissues when having a bloody nose and you need to drive to the ER.
2. A great place to put used medical supplies.
3. To hold “Kitty poop” when cleaning the litter box.
4. Who needs Coach or Luis Vuitton or even Vera Wang
when you can carry it in a Kroger????
5. A place to keep your brand spankin new Yankee Cap so
no one of those Clevelanders will steal it at the Jake!!
6. they are great for "diaper duty"
7. to line the bathroom waste basket
8. I'm going with the obvious, the #1 use of a Kroger bag---to
carry your Kroger groceries home.
9. a lunch box/bag!
10. I use one to carry my lunch from home to the work frig then donate it to the school to be reused for the little ones who have accidents during the day and need to change clothes and take dirty ones home. Its better then sending them home in a backpack.
11. To hold frozen meat bones and other food trash too big for the garbage disposal and too stinky for the trash - until trash day.
12. Underwear for the fixed income/environmentally
conscious population. They can cut 2 holes at
the bottom for each leg, pull them up and put
an arm in each bag handle. So for women, it
suits 2 purposes.
13. We have used Kroger plastic bags as parachutes
for the 'little army men' toys! FYI: all you need is one
plastic bag, some thread, and a toy army man (just in case
you are bored and want to make one later I included all the
materials you would need)!!!
14. Mrs. Fisher collects them at school (bless her!) and takes them to Miss
Virginia's. For those who don't know who Miss Virginia was,
she was this awesome lady here in Fort Wayne who collected
food and clothing and distributed it to the poor out of her
own home. A true persona of Christ! Her mission continues
even though she is no longer living.
15. maybe one of those Kroger bags, with a few holes poked in it would have made a lovely rain slicker for my grandkids dog, that I walk. I guess I could have used one as a makeshift rain bonnett too.
16. We use them as Easter "baskets" for our outside Easter egg hunts. They are much more practical than actual baskets since the already-found-eggs don't bounce out while you are running to the next egg-that-you-think-you-see-behind-the-tree-over-
there.
17. They are also useful to wrap up your muddy, wet, or just plain stinky cross country shoes in your duffel bag after a meet. You wouldn't want to get everything in your duffel bag all muddy, wet, or just plain stinky, now would you? CAUTION: Do remember to remove the shoes from the Kroger bag when you get home. A day or two in that Kroger bag and you'll have the makings of a very disgusting smelling science project on how to grow mold and bacteria. EWWWWWW!
Ta daaaaaaaaaaa! Are we a creative, resourceful and totally nutso group of people or what??
Well, I’m off to make Matthew some dinner. Hopefully, he is getting hungry since we had the patch off for 3 hours now and the BMT doc said it could take 3-4 hours to “wear off”.
Keep praying! No more pain for Matthew OR Logan. For nothing else to go wrong so we can go home for to surprise little Logan. And as always…….continued remission for Matthew forever and ever.
Love,
The Dynamic Duo
*************************************************
10:40 AM
Day 96
GOOOOOOOD Morning!
You folks just cannot imagine the relief and pure joy we are feeling today! We celebrated with some yummy carry in dinner, no margs though (what a bummer) we may have to celebrate again this weekend! Matthew was very exhausted from his long and painful day yesterday so we were pretty low key in fact Matthew was in bed shortly after we ate dinner.
I went in to wake him this morning to get his IV’s started and his morning meds in. He said he was still in a lot of pain. His head hurts, his bma site hurts, his tap site hurts, and his hips hurt. My heart hurts to hear that he is in so much pain. But that sharp burning gut wrenching pain in my stomach and chest was not there today!! He still has the Fentanyl patch on (it lasts for 72 hours) and a dose of Dilaudid on board. He and Greg are playing Xbox right now so I think it must be helping a bit!
Sarah our fabulous Transplant Coordinator just called with more good news. The engraftment study is back and Matthew is 100 percent donor cells YEAH! And the final spinal tap pathology reports are back too…NO EVIDENCE OF MALIGNANCY FOUND! Hooray! We are still waiting for the final “flow and cytometry reports on the marrow” but it is all looking good.
I’m sitting here looking at a kitchen counter full of oral medications. WOW. He is taking 11 different oral meds now. They switched us yesterday from IV steroids to oral steroids. Another oral and another step towards going home. So, now the only IV med he is on is the Cyclosporine. They want to see how he does on the oral steroids and then they are thinking possibly about switching the Cyclosporine to oral as well! Yeah! It is looking like things are pointing towards the FORT in the sooner than later future! I’m sure we have to get this pain issue stabilized a bit. Hopefully, the platelets are stabilizing! And then getting off the IV’s……wow I think I’m seeing the light at the end of the proverbial tunnel!
Greg will be leaving around noon if he can drag himself away from Matthew and the x-box. Only 2 more nights and we’ll all be together for the weekend. Oh my gosh, I’m so so excited!
Keep praying for the final results to be good and for continued remission forever and ever. Please also be sure to send a prayer of thanks to God! God is good.
Love,
The Terrific Trio
***********************************************
Tuesday, April 29, 2008 6:40 PM
Day 95
We arrived at the clinic at 6:30 on the dot. I was a complete bundle of nerves and Matthew and Greg were cool as cucumbers. Matthew’s procedure was at 8am. We kissed him and told him to sleep well and we left the OR. I then burst into tears AGAIN. My nose is permanently red and eyes are forever puff-balls.
The procedures went well and we waited and waited. Finally, his CBC came back and he needed a blood transfusion. So, we waited some more…..around noon the news came back that the spinal fluid was ALL CLEAR. No word on the marrow though. I told the BMT doc that one lung was now working and I needed to hear the marrow results for the other lung to kick in.
So, they transferred us upstairs to Day Hospital to get the 2 units of blood….and we waited some more…and waited and waited.
Finally around 4pm, I saw Sarah our Transplant Coordinator walking around the corner, heading towards our room with the most HUMOUGOUS SMILE I have ever seen on anyone’s face. I hit Greg’s leg and said “Sarah is smiling”. She and our NP, Mary Ann were heading towards our room….both smiling…and then they opened OUR door and I said “do you know something??” Sarah burst out with “YES, MATTHEW’s MARROW VISUALLY IS FINE!!!”
Everyone began to hug, Mom began to cry and Matthew lay in bed, calm as can be…finally I asked him if he was thrilled? He raised his eyebrows and gave a sly little smile (kinda like I knew it all along folks). As I was crying in joy, I choked out “you should see how I would have been if it were bad news!”
It was such a joyous moment. I think I said as many prayers of thanks as I did prayers for healing after we heard the news!
They still have to complete the “flow and in-depth cytology testing” but all were very confident that the Leukemia is NOT there. In fact, Dr. Davies said all she saw were strong, healthy looking cells! We won’t have the in-depth reports until Friday. But we are celebrating here in Cincy!
After the congo line finally stopped, we began to discuss the pain issue. The bottom line is that they really don’t know other than it is not from the LEUKEMIA. They gave him a Fentanyl patch for pain in addition to the Dilaudid and Tylenol with Codeine.
We are still on schedule to go home this weekend for our surprise First Communion visit! We have lots of details to work out as far as meds, IV’s, home health care deliveries etc. But we’ll get it done!
Greg will be celebrating with us tonight and heading home tomorrow. Thanks again to everyone for helping out on such short notice. Thanks also for all the bezillion of prayers that were storming the heavens today. And most importantly, thank you to our dear Lord in Heaven for healing Matthew, for answering our prayers and for keeping Mom somewhat sane!
PS thank you to the Roos Girls for the great sign that everyone signed for Matthew! Thank you also to Boni and Lee for the Huskers gear and book all the way from North Platte, Nebraska!
Love,
The Terrifically Happy Trio
Monday, April 28, 2008 6:24 PM ET
From Matthew to Sean D......
Good Game Sean!
Matthew
************************************
Day 94
Evening Update:
Matthew’s platelets were super low at only 9,000. We were kind of disappointed. I had hoped they would have held their own over the weekend. So, they gave Matthew 2 units of platelets and will give him another in the morning prior to the BMA and Spinal Tap.
Everyone involved was very clear that “this” is just one of the things they think might be causing all the bone pain and headaches. They would have been doing the BMA and tap at day 100 regardless but since we are having the pain issues moving it up a few days and just going in and ruling out Leukemia just makes sense.
My stomach is one huge knot and I’ve chewed a hole in my lip. Greg is on his way thank goodness. Matthew is sleeping.
We have to be at clinic at 6:30 AM tomorrow and should have some preliminary results sometime tomorrow afternoon or evening. Dr. D will view the slides with the Pathologist. The visual is the first test. There is a flow test and cytology test as well and those will take a few days to come back. But we would feel a wee bit better if the Dr D and the pathologist visually see no blasts.
The peripheral blood looks solid and blast free, which is good!
Today’s Counts:
Hemoglobin: 9.5
Plates: 9,000
WBC: 2,300
ANC: 1,890
The past few days have been like walking on hot coals. Tomorrow we are at the peak of the hottest pile of coals. The agony is beyond words. The desire to “just get off these stupid hot coals already” is overwhelming.
Matthew and I have spent a lot of time today talking about our thoughts. We can only go so far with them and one or the other of us will say “but we don’t have to worry….it’s not back”. Matthew is so calm and so brave. I’m in constant awe of his resolve. Nothing throws him out of his calm mode. What an amazing young man…..
Please pray that all the tests are clear of Leukemia. Please pray that we find the reason for the pain. Please pray we are able to go home for our weekend. Please pray that Matthew feels better and can enjoy being home.
Love,
The slightly frazzled Mom and her rock solid son
******************************************
7:04 AM
Day 94
Matthew and I are off to clinic for labs, cyclosporin and Plates! Please pray for EXCELLENT counts today!
To Sean D-
Matthew says: "You're on!" But he's concerned that the hat may not match his shirt of choice for the day!
Nancy and Matthew
********************************
Day 93
Evening Update:
Well, the headache was our biggest complaint of the day …oh and a 99.8 temp….grrrrr. We were able to control the head pain with some Dilaudid and Tylenol w/ Codeine.
The exciting news of the day was that Matthew’s friend Sean and his Mom Mary surprised Matthew with a visit today! It was the perfect “pick-me-up” for Matthew. We were so blessed to have Sally and the Blacks visiting us this weekend. It kept us sane and grounded.
Matthew’s IV’s are running now and he’s resting after our busy weekend. We have an early morning in clinic and then the procedures are on TUESDAY.
Thanks to everyone at home who are stepping in to help with the little ones so that Greg can be with us as we get through the procedures. We are very blessed in this regard as well.
Keep praying!
Love,
The Dynamic Duo
****************************************
1:04 PM
Day 93
Hi Friends,
We had a super day yesterday. Matthew felt really good all morning and afternoon. We ordered gobs of different flavor hot wings and the jumbo size onion rings. (so much for shrinking my waistline). We also went to Walgreens for some stronger pain meds for Matthew. We headed back to the apartment to gorge ourselves with the yummy wings. Sally (who orders the bottom two on the Heat-o-meter) was happily munching thru her wings, while Matthew (who orders the middle two on the Heat-o-meter) was drinking lots of water, while Mom (who orders the 2nd and 3rd from the top on the Heat-o-meter) was gasping, sniffing and drowning herself in water. We played one of our favorite games “5x5” (a favorite from Sally and my childhood days). I have to be honest and tell you that Sally actually beat me ONCE (but she cheated). We laughed so much yesterday. Matthew was laughing, smiling and pain free. We laughed so much that both Sally and I have sore stomach muscles today…now that is either a lot of laughing or we are both out of shape ….shhhhhhhhhhhhh no comments please.
Around four Matthew decided to lay down for a nap. Sally and I cuddled up on the couch like the old days and talked and talked and talked. Finally, I said “boy Matthew’s been asleep for a long time”. I looked at the clock and it was almost 7:30. We let him sleep some more and continued discussing all the important issues of the world…finally the next time I looked at the clock it was 9:30. I hadn’t pulled his cyclosporine out of the refrigerator yet, so I jumped up to pull it out and prepare his IV’s. Finally a bit after 10:00 I woke Matthew up to get his IV meds and take his orals meds. I think we wore him out with all our laughing!
Since it was so late, Sally decided to stay the night, which thrilled me to no end. When we woke, Matthew made us some of his famous pancakes, sausage and bacon for brunch. During breakfast, he got a bad headache again. He was in the process of getting his cyclosporine so maybe that is what is causing the headaches. He took some diluadid and is now resting.
I really hated to see Sally go. I think having someone else here with us is a huge help. It’s a diversion of course but it’s more than that. The stress of this big heavy world seems lighter with someone else around. I slept like a baby last night for the first time in 2 weeks too.
Greg will be coming down tomorrow night to be with us. Tomorrow morning Matthew and I will be going for labs and 2 units of platelets most probably. His platelets have to be 50,000 to do the procedure safely, so they want to really pump him up good for the BMA and spinal tap on Tuesday morning. It will probably be a long day tomorrow.
Please continue to pray…specifically for EXCELLENT test results on Tuesday and for strength for our family.
Love,
The dynamic duo
**********************************************
Saturday, April 26, 2008 11:54 AM
Day 92
Good Morning,
Matthew slept well last night and woke feeling pretty “ok”. His hips are still hurting and he has a bit of a headache, but not painful enough to need any pain meds.
We are both excited to see Sally and Matthew has requested more hot wings…………so……..off to the hot wing place we shall go. I’m not sure it will be warm enough for another picnic though. After being in the 80’s last week today’s high will only be the low 60’s. We’ll see.
Thank you one and all for the emails, guestbook messages and phone calls. You always rally when we need you the most. This Never Give Up team sure is a great team!!
Brittany and Logan called this morning. They both were sooo excited. Logan’s team (Greg is the coach) won 9-0 and Logan scored 2 goals! Yahoo. Brittany’s team (Greg is the back-up coach) won 9-3. Brittany scored 3 or 4 goals (she couldn’t quite remember the exact number). They were just bubbling with excitement. Brittany seemed a bit sad that Matthew and I weren’t there and she was going on and on about “maybe in a month you can come home”. It was really hard not to spill the beans about our surprise visit this upcoming weekend.
I finally found a pharmacy that carries the pain med that Matthew needs so while we are out “winging” we’ll stop at the pharmacy too. Just in case!
Keep praying!
Love,
Nancy and Matthew
****************************************
Friday, April 25, 2008 7:14 PM
Day 91
Today has been a tough day. Matthew woke with a terrible headache and his hips were hurting. We arrived at clinic and told the NP of his pain. The BMT doc came in and began to question Matthew. The NP touched my arm and said “Nancy are you ok?” I whispered “no” and burst into tears. I left the room and headed for the nearest bathroom for a meltdown of gigantic proportions.
When I finally pulled myself together and opened the door our wonderful NP was waiting for me. I looked her in the eye and asked “what are they thinking this is”. She took a deep breath, her eyes welled up and she said “they had all his files out and had a meeting and they are concerned about the bone pain” to which I burst into gasping loud crazy sounding wails…..
I calmed back down and she said BUT…his platelets are definitely coming up (no plates needed today) and that is a GREAT sign. And his WBC/ANC is good and his hemoglobin is doing what it has since BMT… (transfusions every 2-3 weeks).
They do cyclosporine (anti-rejection meds) levels weekly to be sure he not getting too much or too little. It was very high today which everyone was glad about because that COULD CAUSE headaches… they all seemed relieved a bit at that point and the air in the room seemed to warm up a few degrees.
So, I asked “what else could it be?” …We were told it very likely could be his marrow kicking in to grow all these platelets. Rapid cell growth can be very painful. Or it could be from the steroids, steroids are a wonderful drug packed full of dangerous and painful side effects.
The BMT doctor said, let’s be positive and see the glass half full. There are other things it could be….. don’t forget that. She also reminded me that even though they are “concerned” about the bone pain, they would have done these tests probably right after the Communion weekend anyways. So they are moving up the tests a few days and clearing up the fears and concerns had by all at the same time.
Matthew is rock solid and brave. I’m a wobbly mess. His worry is not himself but rather his Mom that is worried silly.
It is going to be a long couple of days in limbo, so I ask you for your prayers not only for Matthew but for his worn out Mommy.
My dear friend Sally is coming to visit with us tomorrow, perhaps she sensed the Mommy needed a friend?? And Greg will be coming to town on Monday night to share the GOOD news of Matthew’s aspiration and spinal tap results with us …live and in person.
Please my friends, pray that Tuesday’s test results go well.
Love,
Nancy and Matthew
Thursday, April 24, 2008 3:05 PM ET
Day 90
Hi Friends,
Matthew has been pretty tired today. I let him sleep in pretty late today before starting his IV meds, so we’ll have to do the night meds later than normal. He hasn’t had any bone pain or headaches so far today! We did our laundry for the week and now he’s resting. You can tell his hemoglobin is on the slide again.
Our transplant coordinator, Sarah, called me this morning to let me know that Dr. Davies wants to do a bone marrow aspiration and spinal tap on Tuesday. My immediate question was “why?” She told me that some BMT docs do one routinely at day 100 and some don’t. Since Matthew has been having mystery bone pain and we are very close to day 100, she decided to just go ahead and do the Day 100 studies and also just check things out.
Assuming everything goes well with the tests, we are still on schedule to go home for the big surprise for Logan. (shhhhhhhh it’s a surprise) I think we both really need a weekend at home!
So, please pray, pray, pray that all Matthew’s test results look spectacularly good and that we can make it home for the weekend.
I also asked what the next steps would be towards getting us home. She rambled off some “stuff” but ended that with “we need to discuss this with Dr. D”. So, I think the discussions are starting and we are starting to at least “think” that direction.
Thanks everyone for continuing to follow our journey and for all the prayers and support.
Love,
The Dynamic Duo
*****************************************
Wednesday, April 23, 2008 5:35 PM ET
Day 89
Evening Update:
Today’s day hospital visit went pretty smoothly. All the viral tests ran on Monday were negative as was the blood culture. Good news! The BMT doc was a bit puzzled by all the random mystery bone pain Matthew is having. She threw out several theories that it “might” be.
The first is that it could be because his marrow is kicking in with producing platelets on its own finally. When the marrow starts producing a lot of cells suddenly that can be painful. Matthew has experienced bone pain many times before with rapid cell production. That theory makes some sense to me since his platelet counts have been increasing over the past few days including today. I like that theory.
The other theory is that high doses and long term use of steroids (oh yes, we have to check both boxes on that question) can in effect “suck the calcium” out of the bones. That could cause pain in his bones. She said you can look at calcium levels in the blood (which we do) but that really tell us what is going on deep in the bone. Ok, I suppose that theory has merit but I don’t like that theory as much since that can cause long term issues for Matthew.
The third thing she wants to do is another engraftment study to be sure he is still 100 percent donor cells. I absolutely do NOT like that theory. It is actually unacceptable to me. Of course I want to do the test to prove her wrong….nope he is still 100 percent donor.
Those are the theories that she seemed to focus on today. She wants Matthew to start eating Tums for calcium. We will revisit the theories and issues on Friday if he continues to have bone pain.
The past week and a half have been rocky and random. Matthew hasn’t felt great and has some times during the day when he feels downright yucky. So, please say a prayer that all this passes and that his engraftment study shows 100 percent donor cells.
Today's Counts:
Hemoglobin: 10.4
Plates: 30,000 (Yahoo)
WBC: 2,800
ANC: 2,100
Time for dinner!
Love,
The Dynamic Duo
PS It has been another beautiful day….in the mid 80’s, sunny and clear. GORGEOUS!!!
*******************************************
11:35 AM
Day 89
Morning Update:
The guestbook problem has been resolved! Thank you to those that emailed us when they couldn’t access the guestbook! We truly value and enjoy each and every guestbook message!
Matthew hasn’t been feeling very well this morning. Just an overall “I’m just not feeling well feeling”. Temp was in the low 99’s again today. Good news is that his leg muscles aren’t hurting…we both thought after all that walking that he would be very sore!
I finally went and bought some Tylenol PM and I did sleep some last night for the first time in 12 days. Good news is that my head doesn’t hurt this morning (knocking loudly on wood). Thanks to everyone for harping at me to go buy some! I love you guys!
Well, I need to do Matthew’s dressing change and then we head out for a fun afternoon at the Day Hospital!
Keep praying!
Love,
The dynamic duo
*********************************************
Tuesday, April 22, 2008 2:44 PM
Day 88
Afternoon Update:
Matthew’s temp has been between normal and 99.4 all day thank goodness. It is still low grade but in the safe zone. He has a headache and his arm is hurting in a different place today.
The past week has been kind of rocky. Not necessarily a bad week just some issues that can make one’s stomach churn and head start to pound. I decided we both needed a pick-me-up for our spirits. So, I got on the computer (I just love the internet) to investigate some parks in our area. I found a delightful sounding park just a few miles from the hot wing joint we both love. So, I mapped out our adventure, told Matthew to get his meds in and homework done because we were going to have some fun.
After morning IV’s , meds, work emails, and homework were done, we jumped in the van with our cooler full of water and headed to the wing place. Then we found our way to a wonderful little park outside of West Chester. It was so amazing. The trees were in bloom, wild flowers were everywhere and we had a nice outdoor pavilion to ourselves. We spread our towels out and plowed through our hot wings in record time. Then Matthew decided we should take a hike on the hiking trail. HUH?? Mom scratching her head wondering how she might get him back to the van if he got too tired. But since our spirits needed that jumpstart I decided to trust the Lord would get us back safe and sound. We made our way down a path, down some wooden steps and down to a beautiful creek. It was all so pretty. The temperature was in the high 70’s with a light breeze, the birds were singing, the water gurgling and then………the spider crawled out towards my foot. (SHRIEK) Luckily, Matthew took care of the ghastly looking monster.
Here is Mom at the start of our hike……..can you see the spirit in me??
If you look really close…way up at the top….that’s ME! And these are the treacherous steps we hiked down……
Ok, we made it down the steps and we arrived at the gurgling creek with a wee little water fall….
Oh look here’s our superhero Matthew……….doesn’t he look spirited and full of pep?? Note the dangerous rock hopping he is attempting……
Look how handsome my son is……..
After moseying around the creek, very aware of spider sightings, we decided we better head back UP before Matthew got too tired. Well, we made it with a lot of huffing and puffing and sweating…..ok I was glistening not sweating….but we made it, headed directly for the van, turned the A/C on high and headed back to the apartment. Matthew headed straight to bed and has been sleeping ever since. I wonder if he’ll get up for dinner!?!?!
The spirit is lifted….we trudge onward on our journey….one day at a time…one issue at a time….one glorious moment at a time…….
Ok….off to check his temperature again……….
Please continue to pray for no fevers and remission forever…..
Love,
Nancy and Matthew
Monday, April 21, 2008 7:04 PM ET
Day 87
Hi Friends,
Well, we dodged a bullet today at Day Hospital. Let me back up a bit. Matthew was running a 99.8 temp yesterday and had 2 rounds of diarrhea in the morning. That can be a big concern for BMT kids because it could be an infection, a difficult virus or GVHD that has reared its ugly head in the gut. Both fever and diarrhea are on the “have to call the BMT doc list”. So, we watched and waited all day. By afternoon, Matthew perked up and seemed to be doing ok. Today while I was reviewing yesterday’s “issues” Matthew spiked a 100 temp in Day Hospital. UGH. So our NP mentioned that pesky word “inpatient” and went to find the BMT doc. While we were getting plates, the word came back that for now we would run some viral blood tests, some blood cultures, and send us home with a specimen cup if the diarrhea starts up again. We have to check temperatures frequently and if it hits 100.5 we’ll be calling the BMT docs and going inpatient. Yuck.
The good news of the day was that the ENT doc found nothing worrisome inside Matthew’s nose. (guess he has good boogers) He saw one vessel that “might” be causing the bleeding coupled with the low plates, so he cauterized it. We’ll see. Hopefully that will allow us to increase his platelet transfusion threshold. The other good news is the platelets count itself. They were 32,000 on Friday but we gave him plates to hold us over the weekend. And today after 2.5 days they were 24,000. That is still crazy low, but for Matthew that is great! I’m getting a good feeling that we might be able to start stretching out the days between transfusions and hopefully we can stretch out our Day Hospital visits to twice a week instead of three. That’s another step we need to accomplish to be able to go home for good!!
So, for now we are on fever alert.
Mom’s headache is going on day 10…this is crazy.
Today's Counts:
Hemoglobin: 11.2
Plates: 24,000
WBC: 3,100
ANC: 2,390
Please pray for no fevers or diarrhea. Also, please say a prayer for our friend Jonnae. She had her BMT done a month before Matthew, recently went home and is now back in Cincy inpatient. They were doing a bone marrow aspiration today to rule out a relapse.
Love,
The Dynamic Duo
*********************************************
Sunday, April 20, 2008 10:24 AM
Day 86
Good Morning:
Hey folks the First Communion isn’t until May 4th! We are still here in Cincy!
I have been having some “issues” with insomnia and bad headaches, so I spent yesterday just relaxing. I did some scrapbooking, reading and watching Lifetime Movie Channel movies! Ahhhhhh.
Matthew did some homework (not really his task of choice) and we made some pasta and garlic bread for dinner. Matthew hung out on the webcam with Greg and the Roos Girls while I chilled and eventually slogged off to bed.
Matthew’s mystery pains seem to be better. His knee is better with the brace and the arm pain is gone.
I forgot to mention that on Friday they decided to drop one of Matthew’s BP meds. His BP has been doing really well and we are really making progress on tapering down the steroid dose. So, we’ll see how his BP responds with just one BP med. Yeah, another step towards home….getting off some of these drugs!
Keep praying!
Love,
The Dynamic Duo
Friday, April 18, 2008 10:11 PM
Day 84
Hi Friends,
Today went well, long but everything went smoothly. Matthew had his boatload of IV’s and even though his platelets were actually high (relatively speaking), Dr. D wanted to tank him up for the weekend. So, he had a platelet transfusion too. We left around 7:45 this morning and arrived home around 5pm. Once we got home, we both made a quick bite to eat and sat down to watch a movie.
Dr. D didn’t seem to have an explanation for Matthew’s mystery bone pain. So, we are in a “let’s watch” mode. He said it felt better tonight and his knee feels better with the brace. We’ll see!
Today's Counts:
Hemoglobin: 11.2
Plates: 32,000 (WOW)
WBC: 2,100
ANC: 1,510
I still have my week long headache, so I’m going to take some more pain relievers and retire to read in my room.
Keep praying!
Love,
The Dynamic Duo
**************************************
Thursday, April 17, 2008 8:11 PM
Day 83
We enjoyed our day of freedom from the hospital. We both did some work today and also ran a few errands. The weather was absolutely perfect. As I ran into a few places looking for the perfect 1st Communion gift for Logan, Matthew enjoyed the radio and the fresh air while sitting in the van.
We also took a nice walk this afternoon around the apartment and then sat in the shade on the patio! It was nice.
On the negative side, Matthew is having some pain issues now in his upper arm. I’m really hoping this is from steroid withdrawal. I’ve been reading a lot about this and the symptoms seem to fit. This whole mysterious bone pain issue tends to make my stomach churn. The Tylenol w/ Codeine doesn’t seem to be helping, so we’ll have to discuss the whole issue and pain management tomorrow.
Tomorrow will be a long day at Day Hospital. We’ll be getting platelets, IV Cyclosporin IViG, and Iv Pentamadine. That should take most of the day.
Please pray that the pain Matthew is experiencing is not a huge issue and that we can get him some pain relief.
Love,
The Dynamic Duo
************************************************
Wednesday, April 16, 2008 5:11
Day 82
Evening Update:
Today has been an awesomely great day! The weather is beautiful today it was 75 on the way home from the hospital! The sun is shining, the sky is crystal blue and the trees are in full bloom.
Matthew is feeling good today. The brace is really helping his knee! It bothered him some last night but nothing like the previous night thankfully.
Our checkup went really well today too. Today was the 1st time in several weeks that we actually saw Dr. Davies. It was so good to see her. She said Matthew is looking really good. She also wants us to see an ENT about Matthew’s nose bleed problems. So, we have an appointment on Monday! Plates were low again today and we needed platelets (surprise surprise). Everything else looked ok. His chemistries were a bit low on some numbers, so we’ll see what they want to do about that.
But the BEST news of the day ends up turning into something TOP SECRET. No one is allowed to utter a word……can I trust ya’ll? Ok, the good news is that…………If nothing happens (pounding on wood as I type this) Matthew and I will be able to go home for Logan’s 1st Communion! We are so darn excited. I wish I would have had a camera when Dr. D said “yes. Matthew’s face turned into one humongous smile…from ear to ear! I called Greg right away and he’s excited too! Matthew suggested making it a surprise and Greg and I agreed. One, because we think it would be totally cool to surprise the little guy and two, just in case (pounding on wood again) something would come up and we couldn’t go home for the weekend visit. So, everyone pleaseeeeeeeeee help us keep this exciting secret a secret! For Matthew’s safety, he won’t be allowed to attend Mass and we can’t have a crowd at the house. But, we are hoping a friend or two can come spend some time with Matthew while we are at Mass and lunch afterwards. Put your heads together OH WONDERFUL friends of Matthew and let Greg or me know! And remember……. Shhhhhhhhh….it’s a surprise!!
I just love the good days….We are thoroughly enjoying the day the Lord has made!
Today’s Counts:
Hemoglobin: 11.7
Plates: 16,000
WBC: 2,500
ANC: 2,100
Love,
The very happy Dynamic Duo
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Tuesday, April 15, 2008 9:41 PM
Day 81
Last minute update:
I ran to Kroger’s tonight and guess what??? Big twubble in Kroger-land……they have gone GREEN. GASP….You see this could be good for our planet but horrible for the world of BMT…..I bought 3 twelve packs of Pepsi products at a GREAT price…and because I bought 3 (which was a great deal so what’s the big deal??)….I received a Kroger’s/Earth Sound ………double gasp……CLOTH…….oh my…….shopping bag…..does anyone else hear that ominous music??? And to make things worse…the bag lady (not a homeless lady but the one packing my stuff) says “oooooh, isn’t this exciting?? Cloth shopping bags!! And if you come back WITH this lovely CLOTH bag you get 5 percent off your total sale! Before you know it everyone will be using these instead of (OH MY GOSH) plastic!”….Dead silence……fear in eyes….sweat on brow…..Whatever will I doooooooo if……(heart pounding) they…….(eye twitching now) stop making ………(hyperventilation is close) KROGER'S PLASTIC BAGS?????????????????
And…..for those of you waiting to see the official GMC certificate newly given to our GMC guestbook supporter Sean……………..drum roll please………
If you would like to apply...please email Sean for his secret....
Love you all!
Nancy (the slightly crazy Mom) and Matthew (feeling no pain at the moment due to good drugs and a brace)
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5:51 PM
Day 81
Evening Update:
I think we are taking up permanent residence at Cincy Children’s. They keep talking about some day going to 2 times a week visits and now we seem to be doing 4 times per week. GRUMBLE GROWL.
We arrived at the clinic to check out why Matthew was in so much pain. They decided to start with a plain ole x-ray. So, we wheeled down to radiology and did the x-ray. The nice thing about being a BMT patient is that you NEVER have to wait…they take you immediately. See, I found a nice thing about being a BMT patient!! After the x-ray, we headed to a consult with an orthopedic doctor. The BMT docs were feeling pretty sure it was AVN and of course anytime there is a sudden onset of severe bone pain I think relapse as well as AVN. So, I was trying to figure out which I was hoping for. Of course that took about 2 seconds and I was rooting for AVN. AVN is Avascular Necrosis. (bone death) High steroid use is a cause of AVN. And we all know Matthew has been on high doses of steroids for 7 ½ years. So, it was logical to expect that to be the diagnosis. The good news is that the x-ray did not show any “severe” AVN or fractures. The bad news is that x-rays rarely show AVN unless it is a catastrophic amount of bone deterioration. So, the ortho doc decided to put him in a knee brace and on pain meds and on Physical Therapy. She is hoping that his quad muscle might have weakened to the point that it is not supporting the knee joint and thus is causing pain. So, her plan is to try this for 2 weeks, if there is no improvement she will order an MRI. If it gets worse in the meantime, we’ll do an MRI. At this point she can’t say if it is or isn’t the start of AVN. But the good news is that it isn’t full blown at this point.
I’m so stressed out.
Time for dinner…….and then meds and IV’s and more meds………Calgon take me away…….
Oh and more good news…they did labs today “just in case” and his platelets were 39,000! So he’s held them for a day at least! We’ll see tomorrow.
Love,
The dynamic, sleepless and stressed out duo
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9:51 AM
Day 81
Morning Update:
Our morning has not started out so well. Matthew was up all night (unbeknownst to me) with severe pain in his knee. He finally woke me this morning in absolute agony. I got him a heat pack to see if that helped and it didn’t. So, I paged our NP and she said to give him Tylenol, finish his morning meds (if we can) and head into the clinic. I have no idea what the problem is and I’m hoping it’s not anything serious. Matthew also had another bloody nose which stopped again in less than 10 minutes. Those must have been some healthy platelets from yesterday.
Guestbook stuff:
Way to go and congratulations to Sean, our newly inducted member of the Gorgeous Men Club. We are so proud of you! I’m going to try to figure out how to get this important award set up a link so you can all see it…stay tuned!
Mary B…Hit me with your Best Shot by Pat Benetar is the lipstick case song!
Stacey….Mom’s headaches….trying everything, Claritin, Tylenol, Motrin etc…..no luck yet…probably stress and all the trees in bloom.
Stacey…Logan’s 1st Communion…It is May 4th!
I think that’s it!
Please say a prayer for Matthew. Pray that it’s nothing serious going on and we can get him some pain relief.
Love,
The Dynamic Duo
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Monday, April 14, 2008 8:51 PM
Day 80
Evening Update:
I can’t believe we are at day 80. Wow! Today we went to Day Hospital at 8:30. Matthew needed platelets as we all guessed. We had a super efficient nurse and believe it or not we would have been out of there in 2 ½ hours EXCEPT the BMT doc that we were supposed to see had to stay home since her daughter had the chicken pox (GASP a big no no for BMT kids). So that threw the whole BMT doctor scene out of whack. Needless to say we left in 5 hours…grumble growl. The good part was that we had a mini-BMT reunion today so that was good. I was able to chat with Melissa (Reece’s Mom), Becky (Michael’s Mom) and ran into Susan (Brandon’s Mom) on the elevator. Everyone seems to be doing well but we each are dealing with our own “issues” but mostly our boys are doing OK! What a blessing.
I spoke to the little ones on the web cam tonight. Logan was happy tonight so Mommy is happier tonight. Logan told me all about the upcoming 1st Communion things that are quickly coming up. He mentioned “bread making”, a luncheon the day after and a few other things that escape my memory at the moment. It was just made me happy to see him happy again…..those tears are horribly hard to see.
After our semi-long day at the hospital, we walked into the apartment to make ourselves some lunch. Matthew heated up his lunch of choice, sat down to eat it and promptly got a bloody nose. Luckily those newly transfused platelets did their job and clotted that nose bleed right up in less than 10 minutes! Good thing we got those plates today or we would have had to turn back around to stop the bleeding. Other than that Matthew has some good color thanks to a wonderful hemoglobin count! And he’s getting some hair too. All good things!
I spent the afternoon with work emails, a few work projects, calling about insurance and billing problems (yes Greg brought me a stack of EOB and bills this weekend UGH). I found 3 bills that were paid to Cincy and we were still inpatient in Lutheran. No clue what that’s all about. We are “working” on it. The scary thing is we are only up to mid -January bills which was BEFORE the transplant even started. I am just overwhelmed with the size of these bills I’m seeing. HOLY COW.
Today’s Counts;
Hemoglobin: 12.7 (Yahoo)
Platelets: 15,000 (par for the course)
WBC: 2,600
ANC: 1,920
Keep Praying!
Love,
The dynamic duo
Sunday, April 13, 2008 8:42 PM ET
Day 79
Weekend Update:
Tears of a child….there is not much more heartbreaking than that. Our family weekend was wonderful but saying goodbye was gut wrenching. My little Logan just sobbed when we had to say goodbye. Tears were streaming down his face and he kept saying I don’t want to leave you. What do I say? I couldn’t make him feel better. I can’t even say we only have 21 more days because I don’t know that we do. This was so hard.
I had a horrible headache most of the weekend. It’s been 4 days straight and the drama of saying goodbye isn’t helping matters much.
Matthew has a bad sore on his chest from the dressing tape we’ve used for months and months. All of a sudden it looks like his skin was ripped off. Infection worries are top on my list. We’ve been slathering on the antibiotic cream to hopefully keep any infections away. He has a dandy bruise on his arm, probably needs more platelets.
Brittany and I played dolls several times this weekend in between headaches moments. I can tell she misses us…she talks non-stop!
All in all it was wonderful having the family together. I’ve missed them all so much. Matthew had fun playing Xbox with Greg and Logan. And we had some yummy meals!
Greg and I took Logan shopping on Saturday. I so very much wanted to have some “special Logan time” and we did. We bought him a special First Communion outfit. He looked so adorable and so grown up. Then we took him for lunch. We talked a lot about his upcoming First Communion and how quickly he was growing up! He looked so proud! I’m still hopeful that we can come home for the big day but I feel very much apart of it now since I was able to share a special afternoon with him. Greg and I have some thoughts on how to make his day special…with or without Mom and Matthew physically being there.
I’m trying to smile thinking of the good moments, but all I want to do is cry.
Tomorrow we have an early day at Day Hospital. I hope it goes quickly. I just want to wallow a bit tomorrow.
Keep praying…..
Love,
The sad Mommy/wife and her superhero son
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Friday, April 11, 2008 6:42 PM
Day 77
Evening Update:
We’re home from our long day at Day Hospital. Matthew needed plates again and also a blood transfusion. His hemoglobin actually eeked up to 8 but since it was in the 7’s on Wednesday, he’s having headaches, and extreme fatigue they went ahead and gave him 2 units of blood too.
Today seemed to be full of changes. Mostly good changes, which is a good thing! They stopped his IV night fluids today! Yeah! But they started him on oral potassium and oral magnesium. Bummer! They cut one of his blood pressure meds in half today since they are stopping the fluids! Yahoo! Although today his bp shot up to 168/93…HUH??? We decided it was because I was stomping his butt at a game of SORRY when the nurse took it! We did another taper of steroids today! Yipppeeeeeeee!
The not so good news of the day came in response to my discussion about possibly Matthew and me coming home for a Saturday/Sunday the first weekend in May for Logan’s First Holy Communion. I really really really want to be there with him. Matthew of course couldn’t go to Mass and we couldn’t have a big celebration or anything. But we’d all be together. Well, that would be somewhere pretty darn close to Day 100 so I was pretty hopeful. I got a “we’ll have to see in a few weeks and there’s no way he’s going home at day 100” from our main BMT doc via our NP. (Enter doom and gloom music). We are making such good progress but we have to get him off some more meds, off the IV’s and we have to get his transfusion dependency, and nose bleed issues stabilized. Hmmpfff. So, I guess the good news is we got a “we’ll see” and not a “NO” on 1st Communion but the bad news is as we always knew day 100 does not automatically mean we go home. My ultimate goal is to take Matthew home when it’s safest for him to go home. We have worked so hard to keep him safe …we aren’t taking any chances.
So, all in all it was a good day. We are still making forward progress and that is a good thing!
And the best news of all………The love of my life and my little ones should be here within the hour! YEAH!!!!
Today’s Counts:
Hemoglobin: 8
Plates: 12,000
WBC: 1,900
ANC: 1,460
Keep praying!
Love,
The Soon to be Fab Five
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Thursday, April 10, 2008 9:22 PM
Day 76
Good Evening:
Today was a day of rest for the weary and anemic. I’m weary, Matthew is anemic.
In addition to rest, I did quite a bit of work today. I had a few conference calls and a few reports to do. I also did our laundry for the week. And I did 4 more scrapbook pages. I’m really on a roll now!
Matthew did a lot of resting and TV watching today. I can tell his hemoglobin is really low. He’s pretty pale, has dark circles and is pretty tuckered out. We did manage to tag team Greg’s famous Chicken Fajita’s for dinner. Don’t worry hun, they weren’t near as good as yours (wink wink)!
We have to be at Day Hospital bright and early for our long day of transfusions. Matthew tells me he doesn’t need the IVIG and Pentamadine (and I think he may be right). So our day might not be quite as long as I envisioned. Either way, we know that Greg and the Little Ones will be arriving tomorrow evening and that will get us thru the day!
Here’s the updated Top 10 uses for a Kroger’s Bag (we still need 5 more for the top 20…OR we could vote on the top 10 and throw out 5…hmmmmmmmm…I can’t decide!)
1. A great place to put used tissues when having a bloody nose and you need to drive to the ER.
2. A great place to put used medical supplies.
3. To hold “Kitty poop” when cleaning the litter box.
4. Who needs Coach or Luis Vuitton or even Vera Wang
when you can carry it in a Kroger????
5. A place to keep your brand spankin new Yankee Cap so
no one of those Clevelanders will steal it at the Jake!!
6. they are great for "diaper duty"
7. to line the bathroom waste basket
8. I'm going with the obvious, the #1 use of a Kroger bag---to
carry your Kroger groceries home.
9. a lunch box/bag!
10. I use one to carry my lunch from home to the work frig then donate it to the school to be reused for the little ones who have accidents during the day and need to change clothes and take dirty ones home. Its better then sending them home in a backpack.
11. To hold frozen meat bones and other food trash too big for the garbage disposal and too stinky for the trash - until trash day.
12. Underwear for the fixed income/environmentally
conscious population. They can cut 2 holes at
the bottom for each leg, pull them up and put
an arm in each bag handle. So for women, it
suits 2 purposes.
13. We have used Kroger plastic bags as parachutes
for the 'little army men' toys! FYI: all you need is one
plastic bag, some thread, and a toy army man (just in case
you are bored and want to make one later I included all the
materials you would need)!!!
14. Mrs. Fisher collects them at school (bless her!) and takes them to Miss
Virginia's. For those who don't know who Miss Virginia was,
she was this awesome lady here in Fort Wayne who collected
food and clothing and distributed it to the poor out of her
own home. A true persona of Christ! Her mission continues
even though she is no longer living.
15. maybe one of those Kroger bags, with a few holes poked in it would have made a lovely rain slicker for my grandkids dog, that I walk. I guess I could have used one as a makeshift rain bonnett too.
Keep praying!
Love,
The dynamic duo but soon to be fab five
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Wednesday, April 9, 2008 4:52 PM
Day 75
Good Afternoon,
Well, our new plan of scheduled platelets works wonderfully except for one thing….we were in the day hospital, vitals done, premeds done, platelets delivered and transfused, and a checkup in approximately 2 hours. An all time record for us! As we were happily walking out the door with still an hour before the rush hour from hell….the BMT doc, says “his plates were actually 21,000 but his hemoglobin was 7.7”. AGHHHHHH. After some discussion we decided to plan on plates and blood transfusions as well as IVIG and Pentamidine on Friday. We will be there allllllll day long! We have specific instructions on what to watch for with his hemoglobin being that low. Hopefully, we can hold out until Friday.
The CT scan was normal so no one KNOWS what is wrong with the NOSE. (HAHAHA, Get it??? HAHAHA) We are all relieved there is no sinus infection or fungus issues going on up there. Those can be so difficult to fix while immune compromised.
Yesterday when I ran to no where but KROGER’s to get more KROGER’s bags, I picked up some Afrin (actually the KROGER’s brand that was ½ the price) and sunscreen (also Kroger brand at ½ the price) for Matthew. (good bags and good prices too) We are all set if another nose bleed occurs (more bags and the magic Afrin) and all ready to sit outside again safely for more than an hour fully slathered in sunscreen preventing GVHD! Oh I also picked up a Tide To Go stick...so maybe all the voodoo purchases will ward off future nosebleeds!
Speaking of Kroger bags….we are one funny and creative bunch….I may take Mrs. Roos up on her offer to make a contact with Kroger corporate. Ok, so we have more than 10…so maybe we could find 7 more and have the top 20.
And now presenting the Top 13 uses for a Kroger’s bag………
1. A great place to put used tissues when having a bloody nose and you need to drive to the ER.
2. A great place to put used medical supplies.
3. To hold “Kitty poop” when cleaning the litter box.
4. Who needs Coach or Luis Vuitton or even Vera Wang
when you can carry it in a Kroger????
5. A place to keep your brand spankin new Yankee Cap so
no one of those Clevelanders will steal it at the Jake!!
6. they are great for "diaper duty"
7. to line the bathroom waste basket
8. I'm going with the obvious, the #1 use of a Kroger bag---to
carry your Kroger groceries home.
9. a lunch box/bag!
10. I use one to carry my lunch from home to the work frig then donate it to the school to be reused for the little ones who have accidents during the day and need to change clothes and take dirty ones home. Its better then sending them home in a backpack.
11. To hold frozen meat bones and other food trash too big for the garbage disposal and too stinky for the trash - until trash day.
12. Underwear for the fixed income/environmentally
conscious population. They can cut 2 holes at
the bottom for each leg, pull them up and put
an arm in each bag handle. So for women, it
suits 2 purposes.
13. We have used Kroger plastic bags as parachutes
for the 'little army men' toys! FYI: all you need is one
plastic bag, some thread, and a toy army man (just in case
you are bored and want to make one later I included all the
materials you would need)!!!
Today’s Counts:
Hemoglobin: 7.7
Plates: 21,000
WBC: 1,700
Keep smiling, laughing and praying!
Love,
The Dynamic Duo
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Tuesday, April 8, 2008 6:02 PM
Day 74
Evening Update:
Today has been a super day here in Cincy. Our day started with some good news from Mary Ann our NP. Matthew had another FISH test done on Friday which looks at the cells in his peripheral blood to determine what percent donor cells Matthew has. Well, the news was AWESOME. He is 100 percent donor cells! YEAH RAH. The other news is that they were discussing Matthew’s platelet issue in their weekly meeting and are all on board with getting the CT scan done tomorrow AND they decided for now to put him on “scheduled platelets” for MWF. This means no waiting 2 hours for lab results and then waiting to order and then waiting for them to prep them and deliver them. That should cut our Day Hospital time down quite a bit! We’ll reassess as his body starts producing platelets on its own.
Today I received an email from a college student who has to write a speech for a nursing class. She is doing her speech on the importance of blood donations. What an important topic and one near and dear to my heart. She asked me for some info which I’m thrilled to provide for her. I also received another request from a young lady last week for info for a paper she was writing on Leukemia. I just am in awe at how Matthew’s journey has touched so many of our youth. I’m thrilled to help in any way I can!
Matthew spent the afternoon working on homework and made a nice dent in it today! It was sunny and high 70’s today. It has been absolutely beautiful weather here in Cincy.
The other good news is that I finally after 4 months got my mop done. Boy I sure feel better. I think she cut off 10 lbs of hair and I still have a lot! For the male readers out there, you have no idea what a good cut and some highlights do for morale! Or maybe you do???????????? Please let me know your thoughts on the topic.
Here I am…all refreshed and ready to face the hospital tomorrow!
Matthew and I are having hot wings for dinner. They are made by Tyson and are called Oven Roasted. They look good on the label so we’ll see!
CT scan is at 11am tomorrow and Day Hospital at 1:30. We aren’t sure where we’ll park ourselves that is out of the way but we’ll figure it out. Maybe if the weather holds out we can find a spot to sit outside and eat some lunch!
Greg and the Little Ones are coming this weekend! Yippee! I’m missing my babies and hubby a lot!
Questions of the Day:
#1 P.S. I HAVE A QUESTION FOR DR.NANCY!!!! WILL THEY DO ANOTHER BONE MARROW CHECK AT 100 DAYS OR IS THAT ONLY IF THEY ARE CONCERNED ABOUT SOMETHING? THANKS!!!!!!!!!!!!!!
#2 Did Matthew go INSIDE of Kroger’s with you?
Answer:
#1 The plan is to NOT do one unless there is a concern.
#2 NO WAY JOSE. Matthew goes pretty much NO PLACE except the hospital and outside. When he “goes” to Kroger’s with me, he sits in the van and reads and listens to music. Public places are a NO NO for a long time since he has zippo immune system. We were told he is very similar to a new baby when it comes to an immune system.
I’m interested in developing a Top Ten list for Uses of Kroger’s bag…There has to be a way to get some corporate sponsorship going here. Look at all the free advertising I’m doing on this site. So, I need your help………
Top Ten Uses for the “KROGER’s BAG”:
1. A great place to put used tissues when having a bloody nose and you need to drive to the ER.
2. A great place to put used medical supplies.
3. To hold “Kitty poop” when cleaning the litter box.
Need 7 more!
Keep praying for more good news tomorrow with Matthew’s CT scan…….
Love,
The newly refreshed Mom and her superhero son
Monday, April 7, 2008 6:14 PM ET
Day 73
Evening Update:
We beat all records today at Day Hospital. We were in and out of there in 4 hours! With rush hour traffic we were home by 6pm! Wahoo. Matthew needed platelets again, surprise, surprise. His hemoglobin popped back up to 9 so no blood was needed.
They have been discussing Matthew’s frequent and severe nose bleeds amongst themselves. They want to do a CAT scan to rule out some kind of infection. We’ll get that done on Wednesday. If that is ok and we continue the bleeds, they may call in an ENT to check things out. They are hesitant to do that though because they know the ENT may want to be poking around and poking when immune suppressed is scary. We’ll see. They also want us to try Afrin (thank you Sara for the suggestion!) spray. It is a vasoconstrictor which means the blood vessels are constricted thus slowing the flow of blood. This might temporarily stop the flow long enough for what little platelets he has to clot or get us thru till morning if we have a middle of the night bleed.
They also cut his IV fluids in ½ again. If his chemistries continue to look good, they may eliminate them altogether on Friday. YEAH RAH!!
Everything else looks good!
Today’s Counts:
Hemoglobin: 9
Plates: 19,000
WBC: 2,100
ANC: 1,720
Keep praying!
Love,
The Dynamic Duo
*************************************************
Day 72
Good Evening,
Today has been pretty much perfect. Health-wise we had no issues today! Yeah! We hung out, did our own thing, did homework and reading on the patio in the beautiful day the Lord has made.
It was wonderfully grand today!
Love,
The Dynamic Duo
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Saturday, April 5, 2008 10:14 PM
Day 71
Evening Update:
Today has not been the best day. We had visions of enjoying the day, relaxing, scrapbooking, reading, sitting outside………..
NOPE
Enter the gusher from YOU KNOW WHERE.
After about ½ hour Matthew’s nose bleed seemed to have stopped. As I was putzing around the apartment, Matthew was laying in bed. About an hour later he mentions that the blood is still running down his throat. So, I told him to sit up so we could see what happens. Blood began to pour out of his nose. I called the on call BMT doc who then told me to get him to the ER. We grabbed our stuff, the box of tissues and yes the infamous Kroger’s bag and headed to the ER. When we got into the van, Matthew’s nose started gushing like a faucet…I kid you not. Blood was spurting everywhere in the van, on his shirt, his jacket and his hands. I was driving quite fast, as I glanced at each spurt, I drover faster. I had my “story” all ready for the policeman…actually I intended to throw the Kroger’s bag at him. No such luck…
We arrived to the ER around 1pm. They took us back to Triage immediately. But as we were starting the process of “do you have any allergies etc”. I noticed everyone around us was coughing. Then she says “have you been around anyone with something contagious”. I hollered “YES, RIGHT HERE, PLEASE MOVE US TO A ROOM AND AWAY FROM THESE SICK PEOPLE”. She said she needed to at least get him in the computer so she calls out to the dude doing the registration “are you about to come to cubicle 5?” He says “ya, after cubicle 3 and 9”. She says “you come here and you come here NOW”….and so he did. (bless that woman). So as soon as he typed Matthew’s name in, she rushed him and the Kroger’s bag back to a room while I finished the stupid registration. I just get so frustrated….it’s ALL THE SAME as FRIDAY…we were just here less than 24 hours ago…….aghhhhhhhh
Finally, after the 4th hour…the bleeding stopped. FOUR HOURS of hose gushing nose bleeding. Platelets count came back and it was 25,000 (surprisingly) and everyone was muttering things like “you came to the ER for lunch hahah”. I thinking “AIN’T NO WAY WE ARE LEAVING WITHOUT A BAG OF PLATELETS” (obviously 25,000 is not high enough to clot Matthew’s nosebleed). Luckily for all involved the BMT doc agreed and we proceeded to order platelets. Then Matthew’s heart rate went up pretty high and his temp went to 99.8 so everyone was all worried again. I’m thinking it’s probably because he’s dehydrated from not drinking anything all day and bleeding all fluid out his stinkin nose. Luckily the BMT doc agreed, so they plopped an entire bolus of fluids in him wide open. Aghhhh, that helped the heart rate and the temp went down to the low 99’s.
Ok, so it’s now 7pm, the fluids are in, the plates are in and we are ready to go already. NOPE…they BMT doc wants to wait an hour and redraw a CBC to see if he’s even holding on to platelets at all. I guess you can develop antibodies to platelets…isn’t that just ducky? So we wait….and while waiting I ask “we don’t have to wait for the results do we?” UH HUH…
So we wait. Labs come back, platelets are now 41,000 but now his hemoglobin is 7.7 (it’s the consensus that we diluted them and they are probably more like the 9 that we had when we arrived). So they said we could go with strict instructions about what to watch for with low plates and low hemoglobin…….duhhhhhhhhhhhhhhhhhhhhhhhh and after paperwork was done, and he was unhooked from the IV and heart monitor of course.
During one of the "and so we wait spells" I began to wish I was Kelly Ripa. She ALWAYS carries her Tide to Go thingie with her. One of those thingies sure would be nice about now...Matthew's shirt stain is setting....my new $7 great deal new shirt has a stain that is setting....and I have NO TIDE To Go thing-a-ma-bob. Note to self....buy one at Krogers next visit!
So we wait. It is now after 8pm and I’m supposed to have the cyclosporine and IV fluids pulled out of the refrigerator so we could start his meds by nine. So out I go, to whine about the latest set of events.
Finally, we were sprung and arrived home at 9pm…it’s just getting later every visit. I grabbed the meds from the refrig and grabbed our bloody clothes, ran to the Laundromat, got his lines all set up and I’m typing this entry in an attempt to decompress. Meds will be late, I’m getting tired but will have to stay up until midnight to switch to fluids. They didn’t do the cap change at the ER so I have to do that too….blech
Today’s Counts (post transfusion):
Hemoglobin: 7.7
Platelets: 41,000
WBC: 1,500
ANC: 1,200
Uh oh, the timer just went off…back to the Laundromat I go ………dryer time….
AGHHHHHHHHHHHHHHHHHHH
Love,
N & M
******************************************
12:14 PM
Day 71
Good Afternoon,
Nose is still bleeding. We are heading to the ER. YUCK
Love
N & M
***************************************
10:00am
Day 71
Good Morning:
We’ve started our day with a gusher…..ugh…..I was worried about 1 unit of platelets not being enough since they were so low to start with. We are going on 10 minutes…hopefully it will stop soon so we don’t have to go to the ER.
Top Ten signs that………..You know you’ve been here too long when:
1. You have to ask the front desks for light bulbs for the lamps.
2. You have to ask for batteries for the TV remote control thingie.
3. You are on a first name basis with the entire Arcadia Staff.
4. You can’t get on the elevator at Children’s without knowing someone.
5. You are starting to figure out how to work your way around traffic snarls by taking “the back way”.
6. You can find pickles at Kroger’s way too easily and you strike up a conversation with the owner of Arcadia in the pickle aisle.
7. You are a FAVORITE customer at Netflix!
8. Jess,The Home Health care delivery driver, gives you his cell phone number…just in case you need him!?!?!?!?
9. You need to start looking for a place to get your hair cut….can’t see thru the bangs anymore…
10. When you leave the hospital after a long day you say “boy it will be good to get HOME”.
Yup, we’ve been here too long….
Please say a prayer the gusher stops soon…the KROGER’s bag is starting to fill up…
Love,
The Dynamic Duo
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Day 70
Good Evening:
We arrived at the day hospital around 1:15 and just got home at around 8pm. It’s already time for me to start prepping Matthew’s night IV’s…yikes.
Matthew showed me his legs today and I had to gasp a little gasp. In addition to some GVHD all over his legs, his feet were covered with petechia (tiny little bruises that are actually hemorrhages of the blood vessels) and his legs had some deep blue large bruises on them. They were kind of scary. The BMT doc and NP both looked and we all said “he needs platelets”. Sure enough they were only 8,000. Which is very low when normal is 150,000-450,000. So in addition to labs, a checkup, IVIG (to boost his immune system), he received platelets. I hope these last us thru the weekend.
I had a mini discussion with the BMT doc today. She isn’t Matthew’s primary but I still wanted to pick her brain a bit about day 100. I have always known that day 100 has special meaning for transplant kids. Going 100 days without a relapse is a milestone for our kids. It also is a target date for “going home”. So, I was curious about the “target” part of “target date” since we are at day 70. Well, there was a list of “things” that they have to feel comfortable about before we can go home. The biggest one that affects us is that his marrow has to start growing more cells. In other words, he has to be a bit more stable with his transfusions, especially the platelets. And he can’t contract any serious viruses or get any infections prior to day 100. There were some other logistical issues but I think those will be worked out with no problem. Hmmmmmmm….. 30 days is still a long time for Matthew’s marrow to get busy…so we’re gonna do more cell chants and possibly some cell dancing…..anyone care to join us???!!!
Matthew’s exhausted from our long day and he’s resting. I need to get his IV’s set up so I’m going to sign off for now.
Tomorrow is supposed to be sunny and in the 70’s…I think we’ll be hanging out on the patio tomorrow! YIIPEEEE!
Today’s Counts:
Hemoglobin: 10.3 (not as high as I expected after 2 units of blood on Wednesday)
Platelets: 8,000 (scary low)
WBC: 2,400 (actually increased Hooray!)
ANC: 2,060 (not too shabby)
Keep praying….and those of you in Florida for spring break….drive safely….we love you!
Love,
The Dynamic Duo
Thursday, April 3, 2008 9:00 PM ET
Day 69
Good Evening:
Today was a great day. I was in on a big surprise for Matthew. His buddies Zach and Matt came for a visit. I had to be OHHHH so sneaky while the plans were in the works. It was so awesome when they walked in…Matthew was on the laptop, he glanced up and then looked back at the laptop and then he looked back at them and said “hey, what are you guys doing here?” We all started laughing because he was so totally surprised. The guys hung out, played some x-box and watched a movie. Matthew was looking pretty tired by the time they left but a very happy tired! He’s resting now, waiting for me to start his night IV’s.
I got some work done today and I also did a bunch of scrapbooking. I’m working on Matthew’s OT/Never Give Up party pictures. It’s coming together really nicely, plus it’s relaxing for me!
I also ran to Wal-mart today to get some “summery” type shoes and a few short sleeve shirts. It’s starting to warm up and I have only my wintery type shoes and long sleeve shirts. I found some great deals and some cute things.
Tomorrow we don’t have to go to the hospital until early afternoon, so I’ll give him his morning IV meds before we leave. I’m really curious to see what his platelets look like. Hopefully they are going up!! Matthew’s GVHD flared this morning so he slathered his steroid cream on. Hopefully, it will be calm tomorrow. Temp was low 99’s today. Whew!
Keep praying!
Love,
The Dynamic Duo
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Wednesday, April 2, 2008 7:00 PM
Day 68
Good Evening:
Holy cow we are tired. Last evening Matthew decided to run a fever. Our cut-off temp is 100.5. He ran 100.0 most of the evening and night. It was nerve wracking. Finally around midnight we went to sleep with the plan to check around 3am. Well around 1am, Matthew woke me with a gushing bloody nose. It lasted for about 20 minutes and his temp was down to 99-ish range. So, back to sleep (HA) we went. Then the alarm went off at 6am…time for his morning meds (oral and one IV push) and a quick shower before fighting the early morning traffic. We arrived to the hospital on time at 7:30.
Just to surprise us all, Matthew’s platelets popped up to 35,000. We were all confused based on his gusher last night. I hope it wasn’t a lab error. Anyhoo, his hemoglobin was only 7 (probably from the gushing bloody nose) so we needed a blood transfusion. Matthew was pretty pale so I was glad to see him getting some blood.
Fast forward to 5:30 pm….the blood was FINALLY transfused and we were sprung JUST IN TIME FOR RUSH HOUR TRAFFIC. Oh my gosh, it was bad bad bad. We finally arrived home around 6:30 (normally a 15 minute trip).
The home health care delivery driver called me on the cell to say he’d left our meds/supplies with the front office. So, we stumbled in to the office to pick up our box of meds. Luckily the nice man at the desk carried that box and another huge box to our apartment for us. (BLESS our wonderful staff here at Arcadia)
The other big box was from all my Aunts, Uncle and cousins in Ohio. It was a huge box of Cheryl & CO cookies. They are so good…yes we ripped into them the second the box was ripped open!
Matthew also received a post card from some BDHS kids that are in Costa Rica. How cool is that!?!?!?! We also had a “thinking of you” card from Debra and some friends from First Baptist Church in Fort Wayne.
I tell you what, when are days are long and exhausting the mail seems to always be there to cheer us up….you know what they say about timing???
We are looking forward to some sleep tonight. We are also hoping that Matthew’s temp stays in the 99’s instead of that scary 100. And we are also hoping that his platelet count was correct and we don’t have a late night bloody nose visit to the ER.
Today’s Counts:
Hemoglobin: 7
Plates: 35,000
WBC: 2,100
ANC: 1,470
Keep praying!
Love,
The Dynamic and tired Duo
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Day 67
Good Afternoon,
It’s been a busy day here in Cincy. Even though it’s not our clinic day, we always have lots to do. We got our morning IV meds and oral meds out of the way by 11am. Then it was shower and “dressing change” for Matthew. Then before we knew it …it was lunch time! Whew! During IV’s, I worked on some fun (ha-ha) auditing stuff for my work’s year end. Now doesn’t that sound fun and exciting….IV’s and work stuff. Wahoo. Then we went to the grocery. My kiddos completely emptied us out of all drinks and that is not good…especially when the DDP supply is ZERO. YIKES. No bottled water either…good grief it was a true tragedy.
Matthew helped me unload the van onto the little luggage carrier thingie (isn’t that a great idea?), pushed it down the hall to the apartment and helped me unload and put it all away. He is now completely exhausted and is resting.
I just finished my 1st report and reviewing the other reports prepped by another staff member. Now I need to start the 2nd. Ugh. Taking a break and journaling should help clear the brain….I think….
I finished a fun project last night whilst trying not to be so sad. I took all the wonderful pictures from all of YOU that were on our NETWORK WALL in our room on the BMT floor and put them into a lovely photo album that my dear Aunt Anita sent us. So, now all of you are in our permanent album! You sure are a great looking bunch! It took me a few hours but they sure were enjoyable hours. So many caring, smiling, supportive faces in this album!
Tomorrow we have a really early visit to the Day Hospital. We have to be there by 7:30. This will take some planning in order to get his night IV’s all done, his morning IV’s all done and enough time to fight the am traffic. Icky. We are anticipating a platelet and blood transfusion….but who knows! If we need both, it will be a very long day for sure.
Keep praying!
Love
The Dynamic Duo
PS after much deliberation we decided not to post bikini pictures of Mrs. Roos, she doesn’t have her agent lined up yet and she thinks I’m too busy to handle that as well….so we felt posting her pictures for all the world to see, without an agent signed up, might hurt her chances at being the next Sports Illustrated Cover Girl….sorry folks!
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Monday, March 31, 2008 7:35 PM
Day 66
Good Evening!
We had a tremendously wonderful weekend here in Cincy. We had a great time with Mrs. Roos! We swam, we played games, we ate and enjoyed each other. Greg and I went on a date on Saturday and had a really nice time. Matthew cooked dinner for Mrs. R and the little ones. He’s becoming quite the chef!
Today, we tried something different. Greg took Matthew to Day hospital. I had the day to spend with Brittany and Logan. It was so much fun. I’ve really missed my kiddos a whole bunch. We played some games this morning and then we went to Dave and Busters. It was pretty much empty so germs were minimal! Logan decided to play this huge wheel game that spins and you hit a button to get it to stop. You’ll never guess what it stopped on….1000 tickets!!!! He was so excited, I thought he was going to hyperventilate! He kept saying “oh my gosh, oh my gosh, Mom I’m shaking, Mom I’m shaking!” It was so darn cute. Then Brittany decided to play the “claw thingie game”. You know the one that you move the claw around, drop it and it picks up a toy, carries it and almost always drops it before you get to the chute….well, my little princess won a regulation size BASKETBALL. HAHAHA! I think I may take them to the Riverboats on their next visit!
Matthew needed platelets again and was borderline for a blood transfusion. They decided to hold until Wednesday for blood. Gee, that will make for a long day on Wednesday…sigh.
A special thank you to Melissa P for the 2 DVD’s! We watch a lot of movies here in our little world so THANK YOU!!
Greg and the kids just left for home and now I’m sad again. The goodbyes get harder with every visit. I feel like they take a hunk of my heart with them each time they leave. I have such a wonderful husband and such great kids. They are muddling thru this journey with such grace and bravery. I know how hard it is on me, I can only imagine how my sweet little ones must be feeling on their long drive home. Waaaaaaaa
Today’s Counts:
Hemoglobin: 8.3
Platelets: 17,000
WBC: 2,300
Please pray for a safe trip home for my family, continued remission for Matthew, 100 percent donor cells for life and complete healing. (and a box of tissues for this sad Mommy)
Love,
The Dynamic Duo
Saturday, March 29, 2008 9:39 pM ET
Day 64
Good Evening!
We had a great day! Mrs. Roos arrived around 11. And then we had a surprise visit from my dear friend Doreen. She was in town for her daughter, Sam’s, soccer game! We ate Skyline Chili for lunch (this one’s for you Peggy, per Debbie)! Greg and Matthew ran an errand (Matthew hung out in the truck while Greg ran in the store). Mrs. R and I took the little ones swimming! And then……….Greg and I went on a DATE. Can you believe it? A real live date! Woo wee! Thank you Debbie for hanging out with my clan!
Matthew’s temp has been in the 99.6 to 99.8 today. Hopefully, it’s nothing brewing. Otherwise he felt good. He even made his world famous Chicken Parmesan (see Never Give Up cookbook for not so secret recipe) for Mrs. R, Brittany and Logan.
Keep praying!
Love,
The spectacular six
ps Mrs. R is sporting some cool fingernails compliments of Ms. B. And Mrs. R, Ms. B and Mrs V are sporting some ultra cool tatoos on our ankles! We are way cool......
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Saturday, March 29, 2008 9:39 AM
Day 64
Good Morning!
Clinic was long yesterday but not quite as stressful as normal. I discussed our long stays in clinic vs. Day Hospital with our social worker….and ta daaaaaa until Matthew’s platelets stabilize we’ll be going to the Day Hospital. Yipppee. Day Hospital is much more comfortable than clinic. It is a regular hospital room as opposed to a cubicle size room with a bed as opposed to an exam table for Matthew, a bathroom as oppposed to pushing the IV pole down the hall and a chair/bed for Mom. The chair/bed which used to the most uncomfy thing suddenly became the most comfortable thing (compared to the hard chair with the little holes in it). It’s all a matter of perspective folks! I was pretty proud of myself for working out that solution! Hopefully, that will make our long days more tolerable.
Matthew’s platelets were actually quite good (for him anyways...again that's a matter of perspective as 29,000 is really super low) but they transfused anyway to get us thru the weekend. We are hopeful that means his body is producing a few more platelets.
Greg and the little ones arrived around 7:30 last night. It was soooooooo good to see them. Greg and the little ones hit the pool, I watched since I needed to get Matthew’s IV’s going for the night. We really enjoyed just being together!
Mrs. R is on her way for her visit! I hear something about a skimpy bikini coming along….oh my goodness! I’ll be sure to keep you posted!
Yesterday’s Counts:
Hemoglobin: 8.8 (probably looking at a blood transfusion next week)
Platelets: 29,000 (where did all those plates come from??)
WBC: 2,600
ANC: 2,110
Keep Praying!
Love,
The Fab Five
Thursday, March 27, 2008 7:18 PM ET
Day 62
Evening Update:
Today was a much better day than yesterday! It was a calm, yet productive day for us both. Matthew’s temp was normal all day, his GVHD was minimal and he felt pretty good. He’s currently plugging thru his homework.
Tomorrow we head to clinic around 8am. Hopefully, things will go smoother than the last few visits and we can arrive home in less catatonic state. Greg and the little ones are coming tomorrow for another visit! Yeah!! Mrs. R from the Roos Girls fame…is coming to visit this weekend too! We are looking forward to having friends and family with us this weekend!
Thanks for the continued support….we very much appreciate it!
Love,
The dynamic duo
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Wednesday, March 26, 2008 9:38 PM
Day 61
Evening Update:
Another way too long day at clinic. More platelets were needed. Stuck for over 6 hours in a dinky room with a hard exam table for poor Matthew to lie on. Finally they moved us to a room with a recliner. Traffic was heavy on the way home. We didn’t get home until around 7:45. The home health care delivery guy even beat us tonight. Luckily our wonderful staff at Arcadia took good care of our box of supplies and meds. Mom had a migraine, lights, nausea, the whole works. I can’t figure out why these clinic days are so rough on us. Matthew and I drag ourselves to our apartment, take our “late” oral meds and head to our respective rooms and crash. I slept thru dinner and woke just in time to start the night IV’s and watch American Idol.
Today’s Counts:
Hemoglobin: 9.5
Platelets: 17,000
WBC: 4,000
ANC: 3,480
Thankfully, tomorrow we have a “day off” from the evil clinic……..we both need it.
Keep praying……..
Love,
The worn out Dynamic Duo
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Tuesday, March 25, 2008 5:48 PM
Day 60
Good Evening:
I’m still laughing about Coach K’s Ask Dr. Nancy question. What a hoot. After much thought, here is my answer…….
Question of the day: Do other grocery store bags work for nose bleeds
besides Krogers?
Answer of the day: Absolutely not. There big difference in plastic bags. Bags are not just bags you see. Plastics are composed of polymers--large molecules consisting of repeating units called monomers. In the case of plastic bags, the repeating units are ethylene, or ethene. When ethylene molecules are polymerized to form polyethylene, they form long chains of carbon atoms in which each carbon also is bonded to two hydrogen atoms. Many kinds of polyethylene can be made from ethylene. Plastic bags typically are made from one of three basic types: high-density polyethylene (HDPE), low-density polyethylene (LDPE), or linear low-density polyethylene (LLDPE). Those thick, glossy shopping bags from the mall are LLDPE, while grocery bags are HDPE, and garment bags from the dry cleaner are LDPE. The major difference between these three materials is the degree of branching of the polymer chain. HDPE and LLDPE are composed of linear, unbranched chains, while LDPE chains are branched.
So based on all that I have decided in my effort to keep Matthew safe, our clothes clean and our van blood-free that we must use Krogers bags. Plus I’m hoping for a spiff from corporate……
PLUS, PLUS, there is a Kroger 1.9 miles from our apartment and the nearest Meijers is like 10 miles….do you have any idea how expensive GAS is these days?? LOL
Previous Question of the Day:
I have an "ask Dr. Nancy" question of the day: Are BMT's done on other people, not just for leukemia patients?
Answer of the day:
Yes, much to my surprise, there are many diseases that are being cured by BMT’s. I was so focused on our disease that I kind of expected everyone to be there on the unit getting transplants to cure Leukemia. I expected that there would be different types of Leukemia but that was not what I found to be the case. Not only are different types of Leukemia being cured, but there are many other types of cancer for example Neuroblastoma that can be cured with transplant. And to my surprise I would say approximately ½ of the kids on the unit were getting transplanted for genetic or autoimmune diseases. There are some really devastating and rare diseases out there folks. Cincinnati is becoming a leader in transplants for genetic diseases such as Fanconi's Anemia. I have learned a lot during my stint on the BMT unit. It has really opened my eyes.
Great questions!!
I had a tremendously productive day today. I even snuck in a nap. Matthew has been very tired today. I think his dropping hemoglobin might be contributing to that quite a bit. His GVHD rash flared this morning. It was up his lower leg at one point. He slathered the steroid cream and it looked a whole bunch better later in the day. His temp has been low grade today as well.
Tomorrow we have to leave for clinic late morning. I’m expecting platelets and possibly blood, hopefully not!
We sure are anxious for spring to hurry and get here. There is just something about the wonders of God’s world as spring renews the cycle of life. It helps the spirit tremendously!
Keep praying!
Yesterday’s Counts:
Hemoglobin: 9.2
Platelets: 14,000
WBC: 3,100
ANC: 2,640
Love,
The Dynamic Duo
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Monday, March 24, 2008 4:18 PM
Day 59
Good Afternoon:
TOP TEN SIGNS YOU ARE A BMT MOM:
1. The phone rings….you grab saline and heparin flushes.
2. The housekeeper plugs in the vacuum and you tackle her.
3. You carry the BMT Diet Restriction Guidelines…and you check it every aisle in Kroger’s.
4. Temperature goes to 99.0, you get neurotic and check temps hourly.
5. You know how to convert Celsius to Fahrenheit…but couldn’t do that in grade school.
6. Someone sneezes, coughs and even clears their throat and you grab & squirt hand sanitizer. (Not to mention the bath the shopping cart endures at Krogers)
7. You carry a Kroger’s bag with you at all times in case of 2.5 hour nose bleed.
8. You have every alarm available on your cell phone set for all the med dispensing times.
9. You stare at your child’s feet…..looking for GVHD
10. You ask your child hourly……..”are you feeling ok?”
Me? Guilty as charged.
We started off our morning with a 20 minute nose bleed, a sure sign he’d need platelets. We left the apartment at 7:30, Kroger bag and tissues in hand (or on nose as the case may be).
Someone forgot to order his Cyclosporin so we had to wait 2 hours for pharmacy to mix it. And yes we needed platelets again. So our day was incredibly long in clinic. We stumbled in to our apartment at 4pm, took the afternoon oral meds and Matthew is now sleeping peacefully in his room! These days really tire Matthew out.
We ran into Wally (AKA Dr. W) on the way to Pharmacy (to pick up the big bag of oral meds). I told him he needed to do a platelet dance since his cell dance worked so well. He said he was still fine tuning that dance but would definitely work on it! He’s a riot!
Dr. H said Matthew looked great. All the viral and bacterial tests done on Friday came back negative! Wahoo!! He is still running 99.6-ish temps. So, I’ll continue to be neurotically checking his temp. They kept all his meds the same but are thinking about tapering the roids some more on Friday…….stay tuned.
Keep praying!
Love,
The dynamic (although feeling pooped) duo
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Sunday, March 23, 2008 9:18 PM
Day 58
Good Evening:
What a wonderful Easter weekend we had here in Cincy! We really had a great time. We did a bunch of swimming (well most of us). We played lots of x-box (well most of us). We painted our toenails and watched figure skating (well most of us). We watched a lot of basketball (all of us).We ate so good homecooked food (definately all of us). And we just enjoyed being with each other!
Matthew has been running a 99.6 temp all day today, which is making me a bit neurotic with the thermometer. Hopefully, it’s nothing. We have clinic at 8:30 tomorrow morning, so we’ll see how he is in the morning. His GVHD rash has been looking good all weekend. Lowering his steroid dose again is going well!
Here are some pictures of our Easter weekend!
Playing some Xbox….
Doing some word-search puzzles….
Coloring Easter eggs……
Easter Egg Wars………..Matthew won!
The Easter Bunny found us…….Hooray!!!
Being Handsome………
Modeling a new outfit from the Easter Bunny……
Last but not least……..beautiful toes……
Saying goodbye was really hard again tonight. The good news is that as long as everyone stays healthy they will be back for a long weekend this coming weekend!
We hope everyone had a good Easter! The Lord has risen….
Love,
The Dynamic Duo
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Saturday, March 22, 2008 10:58 AM
Day 57
Good Morning!
Everyone is doing great! Logan had a bad migraine last night but woke pain free. Matthew is feeling better today also. IV meds are almost done for the morning and oral meds are down. Matthew made omelets for us!
Brittany and I are going to run to Kroger to buy our Easter meal….no clue what we are going to get…we are “winging” it this year! The little ones are really worried that the Easter Bunny won’t find them here in Cincy. I sure hope he does!
Brittany and I are going to have a “girlie” afternoon. We are going to buy some nail polish and do our finger and toe nails. Brittany also wants to “do” some makeup! I’ve missed my little girl!
Logan and I worked on some word search puzzles. He is such a smart little guy.
Greg and Matthew are playing some racing game on the Xbox…lots of laughter coming from that end of the room!
We are thanking God for each other on this Holy Easter weekend. Happy Easter everyone!
Love,
The Fab Five
PS Mom is still highly annoyed at Samson…He did such a disservice to the IU players…grumble growl
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Friday, March 21, 2008 6:58 PM
Day 56
Good Evening:
Matthew had a rough day today. He wasn’t feeling well around midnight and didn’t feel well most of the day. They ran some viral tests and cultures just to be sure it’s nothing serious. A virus for someone who is seriously immune compromised can be serious. Hopefully it is nothing. We arrived at 8:30 and got back to our apartment at 4pm. Greg and the little ones pulled in just a few minutes after we did!
Matthew had IVIG (to help rebuild his immune system), Pentamadine IV to help prevent pneumocystic pneumonia, cyclosporine and platelets (again). He tolerated everything really well.
Matthew is making us pancakes for dinner and its smelling good!
Today’s Counts:
Hemoglobin: 9.9
Platelets: 18,000
WBC: 3,800
ANC: 3,310
Love,
The Fab Five
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Thursday, March 20, 2008 6:38 PM
Day 55
Good Evening:
It’s been a good day here. I got a lot of “work” stuff done today. Matthew finished his week of homework. I made some phone calls and finished some insurance crappola. Matthew and I watched Casino Royale. (not a favorite) We both did some reading and I finished 3 scrapbook pages. And we did our laundry for the week! All and all a good day.
Greg and the little ones will be here tomorrow! Yippee! We have our long (haha) day at day hospital. I’m so excited to get “home” to see them!
Matthew and I wish you and yours a blessed, safe and happy Easter.
Love
The dynamic duo
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Wednesday, March 19, 2008 8:38 PM
Day 54
Good LATE Evening:
We had another long day in clinic. We arrived around 1:30 and finally shuffled back into our apartment at around 7:00pm. Yuck. Matthew ended up needing platelets again so that slowed down our day again. The BMT doc said his GVHD looks better even at the lowered steroid dose. So, they are all pondering whether to taper some more on Friday. We’ll see what they come up with. Believe it or not, Friday is our LONG day in Day Hospital….big sigh.
When we arrived home we had two more fun boxes waiting for us in the office. The first one was from my cousin Mary Ellen. She sent us something really FUN! Stuffed pizza pretzels that are homemade, hand-twisted yummy looking pretzels! Where do y’all come up with these fun ideas! We sure know some creative people.
The other box was filled with more really neat Tupperware. Since Matthew has to drink so much, I was thinking about getting some Kool-aid type drinks to help with variety but we didn’t have a pitcher so I nixed that idea. Well, guess what was in this box? An awesome summer blue Tupperware pitcher…so Kool-aid is back on my shopping list. I can’t believe what nice things are arriving from Tupperware!
Well, I wore my crocs today to clinic. They are roomy and I figured that would help my sore toe. When we left the apartment it was in the mid 50’s so I didn’t wear socks (shhhhhh don’t lecture me) to further help in the toe department. Normally we park in the parking garage, so we normally walk 50 ft from the apartment door to the van and then we are in the garage. Well, today the entire garage was full, I drove around that crazy circular underground garage for ½ hour and finally ended up parking outside. That was still ok when we arrived. The problem began on the way out at 6:30 at night. We walked out the door into a snow shower. It was freezing out, puddles everywhere and huge honkin snow chunks were flying into our face. My toe was now freezing in addition to throbbing. By the time we slopped to our van, the bottoms of my jeans were soaked and my feet were soaked and my toe was throbbing. Yes, I know I should check out the weather channel, yes I know I should assume we’ll need platelets and we’ll be there for hours, yes I know it is technically not spring yet…..but my toe HURT.
Whine, whine, whine…..I think I’m going to make one of those pizza pretzels and relax..whining is just not helping.
On a happy note….the BMT docs reiterated today that Matthew is looking great! Wonderful news to hear.
Happy note #2…..TWO more days until I see Greg and the little ones!! Yeah!!
Today’s Counts:
Hemoglobin: 11.3
Platelets: 17,000
WBC: 6,400
ANC: 5,890
Keep praying……
Love,
Nancy (and her throbbing toe) and Matthew (always the strong silent type)
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9:38 AM
Day 54
Good Morning:
It’s not going to be a “mom type of day” today. I woke up this morning and couldn’t move. My stupid back was in a snit again. It took me 10 minutes to roll, slide, and thunk my way out of bed. Then as I was shuffling around getting meds going, I caught my little toe on a chair…probably broke the dang thing. It is still raining…and I’m too incapacitated to build the ark. And this is all making me rather grumpy.
Meds are all running finally and then I need to do a dressing and cap change. By then it will be about time to leave for clinic for the rest of the day. SIGH.
The happy news is that we are TWO days away from Greg and the kids coming here! Unfortunately, Justin has to work on Easter so he won’t be coming to visit. I just hope that everyone stays healthy. I really NEED for them to be with us this weekend.
Please say a little prayer for Logan. He is having a rough week of migraines and hasn’t felt well enough to webcam this week. I miss the little guy.
Love
Nancy and Matthew
Tuesday, March 18, 2008 1:54 PM ET
Day 53
Good Day:
It is pouring down rain and cold today. I think it’s a good day to stay inside. Matthew feels good but not too interested in the homework thing today. History is a little dry I guess. I am answering some work emails, working on a report and wading thru the lovely envelope Greg sent me yesterday. Lots of insurance issues to deal with…ugh. It seems like everyone waits till the same time to send these bills…sigh.
Hopefully, Greg and the kids are coming for Easter weekend. I’m not sure yet if Justin can get off work for the weekend. I’m very anxious to have the family come be with us. I really miss them.
I think that’s all for today. We are plodding along with our IV, oral and topical meds. Matthew continues to recover and build back some strength. He is doing an amazing job and I’m so proud of him!
Keep praying……
Love,
Nancy and Matthew
PS Happy 39th birthday to my wonderful Mom ;)
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Monday, March 17, 2008 6:54 PM
Day 52
Good Evening:
Boy, what a long clinic day today. We arrived ON TIME at 10:30, and didn’t hit the road until after 4pm. I think the lab is the kink in this process. We were there for 2 hours before they told us Matthew needed platelets again. Then they have to order the platelets, process them and transfuse them. It just makes for a long day. Matthew did some homework and I read! I love to read so that was OK for me…not sure about the homework part
Today was a weird day for me. I ran into at least 4 parents from our “inpatient” days at odd places in the hospital. I ran into Ellis’s parents at clinic and then again later in the hallway. I ran into Anthony’s Mom on the way to the cafeteria to get a salad. I ran into Reece’s Mom at the elevator as they were being sprung from the BMT unit. The hospital is big and all but not so huge that it’s unusual to run into these parents. Ok, now it gets a bit weirder. As I was standing in line for my salad, I glanced at the lady in front of me. I thought, hmmmm she looks familiar. So as I was reaching for my lettuce and other yummy green stuff, I pondered about this lady in front of me. I thought about all the testing Matthew had done…nope. I thought about all the nurses/NP’s/Doc in clinic…nope. I thought about all the inpatient nurses/NP’s/Doc on the BMT unit…nope. I thought about the housekeeping staff…nope. Hmmmm…..boy I think I might know her from “HOME”…nahhh…can’t be. Then by the time I got to the onion and olive section of the salad bar, I was pretty sure I knew her from home. So I said “excuse me, but are you from Fort Wayne?” She said “why yes!” and I said “Did you go to Snider H.S.?” She said “why yes, I thought you looked familiar (uh huh)”. Believe it or not, I went to grade school on up with this lady. She has worked at Cincy Children’s for 15 years. What are the chances of knowing someone from my Kindergarten class in the salad bar line at a hospital 3 hours from my home? I just thought that was pretty strange. So, then after clinic I had to run thru Kroger’s for some milk for Matthew. And there behind me in line was a Mom from the BMT unit. Ok, there are several million people in this city and oodles of Kroger stores I’m sure, and right behind me is a Mom I commiserated with on the BMT unit. Isn’t that odd?
So, then we trudged home after our long day in the clinic, opened our door and found our kitchen table completely FULL of boxes and envelopes. The housekeeping staff laid all our mail out on our table. It was so much fun to come home to!
Matthew received some really fun and cool things today. He received a really cool gift from none other than SEAN D (the wanna-be gorgeous man club member, there’s a plug for ya Sean!!). Now before I tell you what was in the box, I have to tell you that Matthew is a Cleveland Indians fan. Yes, Greg brainwashed him on that team too. I was a huge Reds fan as I was growing up! Anyhoo, in his box were two official Cleveland Indians Spring Training 2008 t-shirts AND an autographed baseball in a case. The ball was autographed by Bob Feller. Bob was a Cleveland Indian’s Hall of Fame pitcher for 18 years. Bob was born in 1918 and played his entire career with the Cleveland Indians. According to Sean, he goes to almost every Indian’s Spring Training. So Sean (who also goes to almost every spring training even though he’s a Yankee’s fan), asked Bob to autograph a baseball for his pal Matthew! Coach Dan, did you recognize the name? How cool is that? Thank you Sean, and George, I think you really need to consider his Gorgeous Men Club application!
Matthew also received a photo album of BDHS pictures, professionally (sorta) taken by none other than Kourtney S. How fun! We really enjoyed looking at a day at Dwenger according to Kourtney! Thank you Margaret for loaning the camera to Kourtney and for mailing us some pretty great pictures!
Then we received a Tupperware surprise from Louise. She sent us some really cool Tupperware. I especially love the “Forget me Nots”. You guys would love them. If you are interested let me know and I’ll hook ya up!! Debra and her Mom (and her Red Hat Club) had a Tupperware party and it was wildly successful. Thanks to everyone who purchased Tupperware, proceeds going to help out with our living and medical expenses! I just love Tupperware! Thank you Debra for organizing the party and to Louise for giving the proceeds to our family.
Louise also sent us a picture of the twin babies of our friend Martha. They were just born a few weeks ago! Martha’s daughter Maria is one of Brittany’s best buddies and Martha’s Mother-in-law is the director of the school that Brittany attends school at. Those babies are so darn cute and I know Brittany will enjoy seeing their picture up on our refrigerator when she comes down this weekend!
We also had a slew of Easter and St. Patty Day cards today. Gosh, it really brightened up our evening after such a long day in clinic. Thank you everyone!!
Matthew is pretty pooped. We opened our mail, ate some dinner and he’s taking a nap now. All of his meds will be late tonight, since clinic threw us all of schedule. Ugh. That means a late night for dear ole Mom!
Counts were good except his platelets. Thus the transfusion. His BUN numbers were a bit high today also. They had cut his IV fluids in ½ last week so that means he needs to start drinking even more. They want him drinking 70 to 80 ounces of fluids a day. Gosh that’s a lot. He’s doing more like 50. The transplant, chemo and all the meds he is on was/is very hard on the kidneys so they watch his fluids very closely. If the BUN number continues to increase, they may have to increase his night fluids again. Drink Matthew Drink. Louise sent us a variety of Crystal Light packets today…very appropriate!! I picked up some bottled water this weekend, so we’re going to try to add some variety to our fluids….sigh.
The good news of the day is that Dr. D wanted to lower his steroid dose again. So we went back down to last week’s dose. We’ll see how his GVHD responds and go from there.
Today’s Counts:
Hemoglobin: 11.6
Platelets: 15,000
WBC: 6,100
ANC: 5,550 (obviously Matthew’s marrow is busy growing Neutrophils not platelets!)
All and all a good, long, kind of odd sort of day!
Keep praying!
Love,
O’Fackler and O’Vinson Duo
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9:14 AM
Day 52
Morning Update:
Happy St. Patricks Day!
Morning meds are done. They will do the Cyclosporin in the clinic since they need to draw a Cyclosporin level first. That made the morning routine easier but the clinic time longer…oh well! Matthew still has GVHD on his feet but the hands seem better today. Hopefully, he won’t need plates or blood transfusions.
Keep praying!
Love,
The Dyno Duo
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Sunday, March 16, 2008 10:14 AM
Day 51
Good Morning:
The sun is peeking out and it is supposed to be in the mid 50’s today! I am really missing the rest of my family this weekend. Greg and the little ones were going to try to come for a visit but Greg is busy cleaning and preparing our home for our return. So, since he has so much to do, they didn’t come. I’m really missing them a lot. The plan is for them to be here for Easter weekend. It is also their spring break so we hope to make it a longer visit. Please pray that everyone stays healthy.
Matthew’s meds are running and his morning orals are done. Mom is on a mission with the Easter Bunny today! Wish me luck!
Please say a prayer for the residents of Atlanta. My cousin Mary Ellen lives there, so I called her yesterday to be sure she was ok. She was in her bathroom trying to stay safe…they were in the middle of more tornados. She sounded so scared. Thankfully, she is fine. We also have many friends from the Lighthouse that live there, so we are worrying about all of them. If you are a Lighthouse friend and reader, please let us know you are ok. Scary……..
Well, I’m looking for some long floppy ears…….gotta head to Target to try to hook up with the Easter Bunny!
Love,
The Dynamic and long eared Duo
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Saturday, March 15, 2008 10:04 AM
Day 50
Good Morning:
Everyone stop, move your eyes UP, one more line…..do you see it??? DO…YOU…SEE…DAY NUMBER??
Yes, we are at the ½ way point in our post transplant journey towards our "real" home. I remember very clearly when the reality of the situation hit me….Matthew had relapsed….Matthew needed a transplant. Rewind the film back even further to November 2000, when the reality of cancer hit me in the face. I remember thinking we can do this…as long as we don’t need a transplant we can do this. Fast forward to December 2004….as the reality of relapse smacked us in the face. I remember the agonizing decision we were making. Should we do almost 3 more years of chemo or go to transplant. I remember thinking dear God anything but transplant for my son. Fast forward to October 2007….another relapse….we need to go to transplant. I remember being almost paralyzed with fear. I knew enough about transplant to be terrified. I knew way too many kids that didn’t survive transplant. I knew way too any kids left with horrifying long term life altering disabilities. I was scared. How was I going to be able to help my son survive the horrors of a transplant? I was beyond scared.
Fast forward to today…Day 50…we survived the actual transplant. Dancing and laughing those donor cells right out of the bag and into Matthew’s totally empty marrow. We thanked God for our donor. We prayed for our heroic donor as she was going thru her harvest procedure. We survived the mouth sores. We survived the bone pain. We survived the high blood pressure. We survived the C-diff. We survived the reactions to ATG. We survived the Hyper Acute Engraftment Syndrome. We survived nights of beeping pumps and monitors. We survived high sugar, testing, and insulin. We survived a CNS relapse scare. We survived an engraftment failure scare. We survived GROSS shower stalls and no food/drinks for Mom in the room! We survived!
Here we are at day 50, getting stronger, still fighting side effects, still getting transfusions, still on IV’s BUT we are here…we are winning…we are never giving up!
Now, although ultimately this battle and this war to win is Matthew’s war, I say we because there have been so many of us, walking beside, behind, and in front of Matthew every step he takes. From our Almighty God, to our many Angels, to friends (new and old), to family, to siblings, to poets, to our church community, to our school communities (STC, BDHS, Northrop), to our Lutheran Hospital staff, to our Riley Children’s Hospital staff, to our Cincinnati Children’s Hospital staff, to our Arcadia Suites staff, to our caringbridge readers, to ALL-kids parents, and to my husband Greg….each of you have been part of our Never Give Up journey. We thank you and we love you all.
Wahoooooooo…I feel like celebrating!!!
Speaking of celebrating…….two of Matthew’s buddies came down for an evening visit last night. Zach and Andrew drove almost 4 hours (stuck in Dayton traffic forever) to visit Matthew. What great friends! I ordered pizza (thank you Mary Z for the gift card), grabbed a piece (ok 2 or maybe 3…really pretty small…seriously. wee little pieces) of pizza and retreated to my room to read and let the guys have their “space”. I heard the joyous sound of 3 teenage boys laughing for hours. I heard Matthew laughing and having fun for hours. What a gift…the sound of your child’s laughter. For those of you with kids, be sure to listen today to the sound of your child’s laughter. Give thanks and enjoy!
Keep praying. For continued recovery, for Matthew’s marrow to get stronger, for Matthew’s donor cells to make his marrow their home forever, for controlled GVHD, and for continued remission forever.
Love,
The deliriously happy to have reached Day 50 Dynamic Duo
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Friday, March 14, 2008 3:14 PM ET
Day 49
Good Afternoon:
We are home from clinic. Matthew ended up getting platelets today. Dr. D decided to keep his steroid dose at the “bumped up” dose since he definitely has some GVHD. She said to keep slathering on the steroid cream as well.
When we arrived home we had a package from Grandma waiting for us! Sees candy ….yummy! Thanks Grandma for the Easter candy. We also had a package from the Easter Bunny (AKA Margaret) waiting for us too! Thank you for the adorable gifts Easter Bunny!
It sounds like (if you read the guestbook) that Sean D and Sean B might be meeting up to discuss Matthew in Disney World! Isn’t that hysterical!?!
Question of the Day:
I have a question for the day:)
What happens if the unfortunate happens:
You (mom) happen to get sick or get a cold??:(:(:(
Just wondering!!
Mom’s Answer:
I suppose it would depend on what the ailment was. If it was a cold/virus type thing since my germs are his germs and he has no immune system, he would probably get it from me. The minute I would start to feel sick, I would wear a mask. Since I wash my hands like every 10 minutes, I suppose I could shorten that to every 5! LOL. If it were something more serious, we’d have to figure something out for the little ones and Greg would have to come here. He would have to be trained on everything. BUT WE AREN’T GOING THERE!!
Today’s counts:
Hemoglobin: 12
Plates: 17,000
WBC: 4,300
ANC: 3,140
Keep praying!
Love,
The dynamic duo
Thursday, March 13, 2008 8:39 PM ET
Day 48
Good Evening:
It was a beautiful day here in Cincy. I think the high was 63 degrees. The snow is pretty much gone except for random piles from the plowing. Most of the grass is showing now and all the roads are clear! I love all the guestbook messages today, they all sound so “springy”. That just brings a smile to my face. I love springtime and can’t wait for it to officially begin!
Today, I was talking to the lady that takes care of our room for us. She told me that the staff prays every night for the kids and their families that stay here. I was so touched. This is yet another example of God’s plan at work. I am continually amazed by the goodness of God’s children. In our society we only tend to hear about the “bad guys”. It seems every day, I’m touched by another example of the good in our society…I’m very lucky I guess and I’m lucky that I have a forum to be able to share that with so many.
Today’s Question of the Day:
Here's my question: for the "doctor": What is the goal that Matthew has to achieve with his counts, etc. in order for him to be released to go home to his own bed?
Answer according to Nancy!
When we started the process of deciding on transplant facilities, we were told by Dr. D (our primary and also head of transplant) that we would be here until Day 100 (post transplant) at a minimum. Each child’s journey thru transplant is different but that is the minimum for all of us. Matthew is in the process of being weaned from steroids. It is a slow process because as we reduce the steroids GVHD can flare up. Matthew is also on Cyclosporin, another drug one of its uses is to help control GVHD. They want Matthew to be off of the steroids (or maybe pretty close!?!!?!) prior to our release so that we know how his body will react with the GVHD while not on steroids. Matthew’s marrow is still not producing normal levels of platelets and blood, so we’ll need that to stabilize somewhat. Along with all that, we are still working on side effect “control”. So, for now we are shooting for day 100 and our goal is to keep the GVHD under control and to hope for Matthew’s marrow to start producing cells on its own in a more stable manner.
Matthew made a taco casserole for our dinner tonight! He’s really a good cook! Night IV’s are going and I’m ready for bed…too bad I have 2 more hours until his med is done and I can start his fluids. We have an early morning clinic appointment tomorrow, hopefully it will go quickly.
Goodnight!
Keep praying!
Love,
N and M
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Thursday, March 13, 2008 9:39 AM
Day 48
Good Morning:
We got a late start on morning IV meds. I discovered a dosing issue with his morning steroids around 11pm last night. So, I had to wait until morning to get it resolved. All is resolved and meds are now running.
Since today is our “no clinic/day hospital day”, we both have lots of things to get done. Matthew has homework, I have some work and a conference call, I have lots of insurance paperwork to deal with etc.
Keep praying…no bloody noses, GVHD stays under control, and continued remission for ever…
Love,
The dynamic duo
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5:29 PM
Day 47
Good Evening:
We are home from the clinic. Things just seem to move in slow-mo in the clinic. We were there for 4 hours for basically labs and a checkup. Oh well. The good news is that the BMT doc says Matthew looks really good and his ANC went back up on its own! The medium news is that his plates were 23,000 (ugh) but Dr. D put his threshold at 20,000 so we didn’t get any platelets. So, the fingers and all 10 toes are crossed that we don’t end up in the ER. The bad news is that his GVHD has flared up a bit on his hands and feet, so they bumped his steroids back up again until Friday. They we’ll see how it looks and decide whether or not to taper back down again. Bummer.
Matthew is about finished with a book that I bought him prior to transplant. We are going to go to Amazon.com to see what suggestions they might have for the type of books he enjoys!
We were going to cook something for dinner but we are both tired and I’m still not feeling so hot……….so frozen pizza it will be! (thank you Elaine and Dave for the free pizza coupons)
Today’s Counts:
Hemoglobin: 12.0 (nice thanks to 2 units of blood on Monday)
Platelets: 23,000 (ugh)
WBC: 5,100 (excellent)
ANC: 4,490 (wow)
Keep praying!
Love,
The dynamic duo
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10:29 AM
Day 47
Good Morning
Morning IV’s are just about done and then we get ready to head to clinic. Mom went back to bed after starting the 2 hour IV. I’m feeling a tad bit under the weather. I hate to even think this but I feel like the ole kidney/bladder whatever that was thingie from last fall might be rearing its ugly head. SIGH.
Matthew says he didn’t sleep well last night but seems ok (other than tired) this morning.
Keep praying!
Love,
Nancy and Matthew
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Tuesday, March 11, 2008 6:49 PM ET
Day 46
Good Evening:
Today was much calmer than yesterday and more productive too. I got everything on my list done today. Matthew did some homework. He has added another class to his “homebound” schedule. He is doing well. The teacher at Cincy is wonderful and is really working around our schedule well. We are very lucky!
I received an email recently from a nice lady named Carol. She read that wee little article in the Woman’s Day magazine from last year. Ever since then she has followed Matthew’s journey on our site. Carol is from New Mexico. She and the youth group at her church pray for Matthew. Well, Carol also has a co-worker/friend named Tammy. Tammy also reads Matthew’s site and she recently shared his story with the people from HER church. Now her church is praying for Matthew too. Remember, we have never had the pleasure of meeting these two kind ladies in person. Anyhoo, Tammy also has a talent in the poetry writing department. So, these nice ladies decided to email us and to send us Tammy’s wonderful poem. We were so touched that we asked if it would be ok to share with all of our friends that follow Matthew’s journey…..
So without further ado……….
Here’s to Matthew ….....
Matthew’s just a youngin’
only 16 years of age
He’s been through more than most of us
Oh, how can he explain …
The trials that he’s conquered,
The efforts that have poured
through his veins and onward,
from the people on his ward.
We pray for you, oh Matthew.
We pray that you would be
the son that defies logic,
and defines humanity.
We pray your stable spirit
will prevail on through these fights,
We pray the Lord will guide you
and keep you through the nights.
We pray for something awesome,
something power, something free.
We pray these words to reach you
and touch upon your cheek.
Dear Matthew, you are held
in prayers around the earth.
Your story touches all of us,
and all of us have heard
the gentle voice of heaven
just a whisperin’ your name
for us to pray and honor
the call from God again.
To pray for all our neighbors,
To pray for peace and love,
and offer our thanksgivings
to the One who lives above.
Amen.
Thank you to our new friends Carol and Tammy!
Tomorrow is clinic day. Hopefully, it will be calm and uneventful!
Keep praying!
Love,
The Dynamic Duo
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8:47 AM
Day 46
Good Morning:
Everything went very smoothly last night. Fluids ran, Cyclosporin given on time and no nosebleeds or temps! I think I forgot to mention that yesterday we were skirting with a fever all day. We think it was from the blood products. Fevers are not good, they could signify some really scary things for a BMT patient and they automatically earn us an inpatient stay. So, we were really glad his temp stayed under 100.5!
Today’s Question:
Nancy: Why does a low platelet count trigger nose bleeds?
No "clotters" left?
Answer per Dr. Nancy:
I don’t think the low platelets actually cause the nose bleed, but rather once one starts there aren’t enough platelets to clot the blood and stop the bleed. In Matthew’s case, with critically low platelets one could potentially “bleed out”. If he had normal platelets, he might have had a wee little bit of blood come from his nose but it would have clotted immediately. That’s my understanding anyways!
Today is a busy day for us. I have some more paperwork to finish for our personal taxes, I have some work things to do, it’s dressing and cap change day, normal IV meds, oral meds, Matthew has homework to do and some other stuff. Hmmm, those jammies are sounding lovely again!
Keep praying…..
Love,
The dynamic duo
Monday, March 10, 2008 7:25 PM ET
Day 45
Good Evening:
No lounging in fuzzy warm jammies today….Our “short clinic visit turned into a nightmare 11 hour day. We were due to leave our apartment at 8:30 and they were to give his IV meds at clinic at 9am. At 8:10 I woke sleeping beauty. A few minutes later, the gusher started…so we grabbed the empty Kroger’s bag and the box of tissues and raced to the van. I don’t know if it was the post-blizzard excitement or the time change forgetters but the traffic was ghastly. As I was sitting in the traffic watching Old Faithful beside me, it occurred to me that we had a problem. Matthew has to wear his heavy duty filter mask whenever he’s not in our apartment. There’s no way to do that when your nose is gushing with blood. And the thought of him going anywhere but especially a hospital full of sick kids and then they gross elevator….GASP. So, I called our Transplant Coordinator Sarah (the most wonderful coordinator in the world) to explain our plight. She thought about it a few seconds, put me on hold and came back with a solution. Go to the ER. Ok, we are getting that drill down pretty good now. Back to the ER we go.
The ER does a great job of getting the BMT kids back to the room IMMEDIATELY, but they aren’t the speediest with anything else. Matthew’s nose is still gushing while they are all sitting there discussing what to do. Ahem….we need platelets. Ohhhhhh, yes, we need to order platelets…and Ahem, we need to do labs. Ohhhhhh, yes, we need to draw those too. And AHEM, we need to give his two IV meds. Ohhhhhhh, well..hmmm…we better call the BMT doc. Okey dokey then!
1 ½ hour later the platelets arrive and the nose bleed finally stops. Yikes. Well, platelets were definitely low at 13,000 (good thing we ordered the platelets ahem). The BMT doc came down to the ER to check on us and to get things moving along. We love our BMT docs…a LOT! Then they discovered his hemoglobin was only 7.8. Ugh, need red blood cells too. Still no clue about how to give the Cyclosporin and they thought they would give us platelets and let us go home so I could give the Cyclosporin. (hmmmm). But once they discovered he needed blood too, they decided to transfer us to the Day Hospital for the rest of our adventure. So, after platelets were transfused, we moseyed up to the 4th floor and our room was all clean and ready for us.
Finally around 6:00pm we were all tanked up and ready to go home. We had to work our way back to the ER parking garage where we left the van 10 hours before. Matthew and I were surprised at how light (haha) the traffic was at 5:30! It took us about 10 minutes to realize we hadn’t changed the stupid clock in the van (don’t get me going on that topic again).
We got home before 7pm, split a frozen Calzone (thank you Sally) AND HERE WE ARE.
NOW THE REAL BUMMER IS THAT WE ARE MESSED UP ON OUR CYCLOSPORIN SCHEDULE. SO, TONIGHT I HAVE TO GIVE HIS IV AT 11PM TO 1AM. LOVELY!
I HAVE NO CLUE WHY MY CAPS BUTTON APPEARS TO BE STUCK. GROWL.
TODAY’S COUNTS:
HEMOGLOBIN: 7.8
PLATELETS: 13,000
WBC: 2,500
ANC: 1,900 (WE DISCUSSED THINKING ABOUT STARTING GCSF IF THIS CONTINUES TO DROP)
WELL, THAT’S ALL FOR OUR DAY………… SO FAR……..
KEEP PRAYING…….
LOVE,
THE DYNAMIC DUO
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8:15 Am
Day 45
We're late, we're late for a very important date, no time to waste, we're late, we're late, we're late.
Off to clinic we goooooooooooooooo
Gushing bloody nose and all...UGH
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Sunday, March 9, 2008 10:25 AM ET
Day 44
Good Morning!
We remembered to change all of our clocks except the radio in our kitchen…we didn’t actually forget, we just haven’t figured it out yet. As a gal growing up in Indiana where we never did this crazy clock changing crap, I find it a bit annoying running around changing all our clocks. Finding it 2nd in the “big news of the day” (behind the blizzard of course), is a bit humorous to me. I like the “old Indiana way” much better. Some dork in our Indiana government finally “made us” join the ranks of the crazy clock changers….and I’m not happy about it. It was always the same time, no losing an hour, gaining an hour, no whining about each, no “this is going to help our economy” argument…..whatever…….
The highways seem to be clear (according to the news which still thinks the blizzard is news event #1 for today). We aren’t planning on going anywhere until tomorrow (the operative word is PLANNING). We have a clinic appointment at 9am, so we should be good to go by then…….I hope!
Question of the Day:
Ok, I have a question for you! This is not related to Matthew's physical health, but spiritual health. Since it's obvious that he can't attend Mass, what are you guys doing to keep up with things, especially now that you are out of the hospital and I assume no one is bringing Communion by the apartment you are living in. Just curious!
Answer According to Mom Nancy:
This has been a challenging part of our journey, actually for our whole family. Our balance between physical and spiritual health has been a challenge for over seven years. We have found ways to grow and feed our spiritual health in many ways over the years. We have had communion brought to our home when Matthew couldn’t go to Mass, communion at Cincy Children’s Hospital by a jovial Father Mike, TV Mass (yes, I think that is the most wonderful mission ever invented) has been a standby for our family when Matthew couldn’t attend and the rest of us were too scared to attend during high flu season coupled with low ANC. Matthew and I are both praying from a Lenten prayer book that Sister G sent us at the beginning of Lent. We both have our own very personal ways of being with, talking to, sharing our fears and joys with God and honoring God. That will remain personal……All and all, we have found our way….
Today, I think I’m going to try to convince Matthew to help me with my scrapbook project. I decided before we left for transplant to “scrap” the big OT/Never Give Up party we had back in September. Thanks to a very kind couple that graciously took pictures for us (thank you Mark and Mary); we have over 250 pictures to put into a scrapbook. I think now might be a good time to start!
Keep praying and thanks for your continued love and support. Your emails and guestbook entries are an important part of our day!
Love,
The time confused, feeling calmer about the snow Dynamic Duo
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Satuday, March 8, 2008 7:59 PM
Day 43
Good Evening from Snowy Cincy,
The snow has finally stopped, now we commence to build the ARK. I’m so glad we didn’t have to drive anywhere today!
Matthew and I had a pretty laid back kind of day. I took a nap, read and did some paperwork. Matthew played some Xbox and on the computer quite a bit. He is really tired today. I think his low hemoglobin might be part of the issue. So far so good with the NO temps or nosebleeds.
Today we somehow lost the battery cover thingie for the IV pump. We frantically started looking for the stupid thing for fear that the pump GESTAPO would hang us by our toenails. We looked and looked. I dug thru the trash (eewwwwww) and peered deep into the “sharpie” container. We looked everywhere. Finally when we were ready to accept our fate the pump Gestapo, I picked up Matthew’s backpack and THERE it was! We have no clue how it ended up there but it did. Whew, we narrowly escaped the P.G. Rumor has it she’s one tough cookie!
Other than that, that was our excitement for the day! Oh, I also went out to dig out our van, on the advice from my loving hubby. Just in case we need to “go” somewhere tonight (knocking on wood), we are all dug out. It’s cold and icy but beautiful!
This is the day that the Lord has made, let us rejoice and be glad…….we are glad!
Keep praying……..continued remission, some energy for Matthew, no nose bleeds or temperatures. Thank you!
Love,
The laid back Dynamic Duo
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Day 43
Good SNOWY Morning:
Holy cow, we are in a Blizzard….literally. Depending on what part of Cincy you are in we are between 8-12 inches of snow and 2-5 more expected before this stops at 4pm. We have bitter cold temps (wind chills below zero) and winds which are causing drifting. It’s beautiful out, but that being said from INSIDE our warm abode.
Last night as they announced that we are under a level 3 snow emergency which means stay off the roads unless it’s an emergency, Matthew got a bloody nose. STRESS…STRESS….STRESS. I’m trying to figure out what we will do if it won’t stop….drive ourselves?? Call 911??? Can Santa??? So, I ate more cheesecake and stared at Matthew’s nose. Thankfully, the stinker stopped….and so I celebrated with more cheesecake! What a lifesaver that cheesecake was…oh and the tissues too.
Matthew was pretty worn out yesterday. He took several long naps and was in bed pretty early. I kept waiting for the “MOM, MY NOSE IS BLEEDING” statement but thankfully we dodged that bullet.
He is still sound asleep but I have to wake him soon to start his morning IV meds….sigh.
Keep praying for no nose bleeds, for Matthew to feel good today, for no temps and for us to stay bundled up WITH our cheesecake inside where it’s warm all day long.
Love
The Cheesecake lovin, tryin to stay warm while enjoying the beauty of the snow Dynamic Duo
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Friday, March 7, 2008 2:59 PM
Day 42
Good Afternoon,
I have lots to share this snowy afternoon. First, we made it home safe and sound. The roads are more of a slushy consistency at the moment. It was slick on the overpasses but all in all ok! WHEW!
Second, our checkup was with Dr. Davies, Matthew’s primary BMT doctor. She is so pleased with Matthew’s progress. She said he is doing fabulously!! Since his rash seems to have gone away (for now), she is going to start tapering his steroids starting with tomorrow’s dose. He will be down to 85 mgs daily. If the rash stays away, she’ll taper 10 percent every week. And then he can switch to oral methylprednisolone. Yeah.
Third, Matthew didn’t need any transfusions today. That must mean his body is producing a few red blood cells on its own since his hemoglobin went from 8.4 to 9.0.
Fourth, if Matthew continues to do this well next week, then we can start going to clinic or day hospital on Tues/Fridays instead of MWF! Hooray!!
They made some adjustment to his IV fluids, since he was low on potassium and phosphorus.
Matthew is doing very well and we couldn’t be happier.
When we arrived “home” from the hospital the office ladies ran to meet us! They had a huge box from THE CHEESECAKE FACTORY! Everyone was oohing and aahing!! Including Matthew and I! Thank you to Sarah S a BD alum and a XU student for the yummy Oreo cheesecake!
Well, I changed into my fuzzy socks and my fuzzy blue jammies that my Mom got me for Christmas….perfect enjoy the snow from INSIDE attire! I’m so glad to be home and I’m praying that we don’t have any nose bleeds so that we don’t have to venture out in this snow until Monday. The news is saying that we could get up to 15 inches of snow and 1 to 2 foot snowdrifts! That’s a lot of snow in those drifts!
Today’s Counts:
Hemoglobin: 9.0
Platelets: 28,000
WBC: 3,800
ANC: 3,460 (how exciting since we haven’t had GCSF for awhile now)
Keep praying!
Love,
The Dynamic Snow Bunny Duo
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9:59 AM
Day 42
Good Morning from Cincy Childrens!
I'm typing this from the Family Resource Center. Matthew is in the Day Hospital today for IVIG (to build his immune system), morning Cyclosporin, labs, and possibly a blood transfusion if needed.
We are hoping to get out of here soon because Cincy is in a middle of a huge snow storm. Depending on what channel you watch they are predicting anywhere from 4 to 15 inches. YIKES. This town pretty much shuts down with 4 inches so I can't imagine what 15 inches will do.
I suggested getting our IV meds while we were here to avoid any delivery issues. I only have enough IV meds to last thru tomorrow morning. It's kind of scary to be depending on a delivery person to drive thru 15 inches of snow in a town that shuts down. They all thought that was a lovely idea so they are scurrying around trying to make that happen! Yeah!
Matthew had a bad headache this morning and his hemoglobin was 8.4 the night we were in the ER. So we are suspecting he might need a blood transfusion. But then again, Matthew tends to surprise us now and again. His rashes are gone for the past few days. GVHD can come and go (flare), but we'll take any non-flare days that comes along.
Please pray that we get back to our apartment safely and pray for continued remission forever.
Love,
The Dynamic snow-bound Duo
Thursday, March 6, 2008 5:28 PM ET
Day 41
Later in the Evening Update:
The mail came today and we had some very special mail today. We had a package of handmade cards and pictures from Miss Witte’s 4th grade class at St. Charles. I have to tell you I got a bit choked up reading about all these precious children praying for Matthew. What a great group of kids with an obviously great teacher! Our second envelope was from our Youth Group. They had a teen retreat this past weekend, and they were thinking of and praying for Matthew. They all wrote such wonderful letters to Matthew. It sure brightened both of our days to know that Matthew is in the minds, hearts and prayers of so many. We belong to such a wonderful Parish. This Parish happens to be the same church I’ve gone to since I was 3 years old (yes they had churches way back then). I think God lead my parents to join St. Charles for very special reasons. Another blessing from God.
Ok, off to make dinner. I think we are “doing” hamburger helper tonight. I bought these yummy mandarin oranges that look like tangerines at Kroger’s. They are so delicious, so I’m going to peel up a few of those too!
Keep praying and Never Give Up!
Love,
The dynamic duo
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4:48 PM
Day 42
Evening Update:
We had a nice relaxing day today. We watched another good movie called Waking Ned Devine. This came as a recommendation from my friend Charlie. We both really enjoyed the movie. It is funny, set in Ireland so the scenery is beautiful as was the music. A good rental!
Matthew did two more homework assignments today. The teacher will be meeting us in Day Hospital tomorrow. He’s really plowing thru his history and he may tackle Health as well. That should be rather easy for him don’t ya think??
I did another load of laundry this afternoon since Matthew’s bloody nose event caused quite a mess on his shirt.
Question of the Afternoon:
When they do a BMA, how do they tell what percentage is donor cells?
Answer according to Dr. Nancy:
They do a test called a FISH test. It looks at the genetic makeup of the cells found in the sample taken from the bone marrow. It’s relatively easy to tell in Matthew’s situation because his donor was female. Females have XX chromosomes and males have XY chromosomes. So, if they see a “Y” chromosome that has to be Matthew’s cells. They have to go more into depth for same sex donor to recipients because they would both be XX if the donor female and the recipient were female for example. That’s my bare boned pretty simple explanation folks!
Just to clarify something I said this morning. Matthew’s cells were 99.6 percent donor when we did the last Bone Marrow Aspiration. The bone marrow biopsy showed us that 15 percent of his marrow was full of cells. The biopsy is sort of like taking a sample of the earth thru the core. You can see different layers and in those layers they can “count” the cells they see in those layers. Ok, enough of all that!
Keep praying!
Love,
The Dynamic Duo
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10:08 AM
Day 42
Good Morning:
We both slept great last night. I think we both really needed it! Matthew looks great this morning. No rashes today!
I need to run to the grocery store later and that’s about the extent of the tasks for the day except of course the medications and IV’s.
Tomorrow will be a long day in the day hospital…but that’s tomorrow!
Question of the day:
Medical question for Dr. Nancy: Why does matt need platlets? Shouldn't the new marrow also produce the platlets Matt needs to clot? Just wondering.
Answer by Dr Nancy:
Matthew’s marrow was completely emptied out by the chemo and the radiation. It was an empty vessel waiting for those healthy donor cells to come set up shop. It takes a long time for the marrow to grow enough cells to fill the marrow. The white cells come back first because the body needs them to fight infection. Then the red and platelets begin to come back. It’s a slow process. That is why the body needs blood and platelet transfusions for quite awhile. We are infusing the cells that his body isn’t able to produce on its own yet. If you remember our scare a few weeks back when we were worrying about engraftment failure, the sample (biopsy) taken showed approximately 15 percent cells in the marrow. A long way to go until the marrow is completely full of 100 percent donor cells and able to regularily produce and keep up with the body’s daily requirements.
Keep praying..
Love,
The Dynamic Duo
Wednesday, March 5, 2008 6:47 PM ET
Day 41
Good Evening:
The rest of the day was much calmer than last night. After hooking Matthew up to his morning IV meds, we both went to sleep. Two hours later, we were up to unhook. We watched a movie together, rested and read. For some reason we couldn’t seem to sleep. We ended up getting a “free pass” from clinic today, so that was nice.
We are on standby for headaches though. If he gets a headache, we may go in tomorrow for a blood transfusion. If not, we have an all day visit to the day hospital on Friday.
I’m baking some chicken, making some veggies and cutting up some fruit for our dinner. You have to think through every item on the menu…can he have it or not? It’s starting to smell good in our humble abode; I guess that means its dinner time!
Keep praying…
Love,
The Dynamic Duo
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8:37 AM
Day 41
Morning (I think???)
At 1:30 this morning, Matthew woke me up with a gushing nose bleed. We waited 15 minutes and then I called the BMT doc on call. We tried pinching and icing to no avail. I called Dr. Ben back and he instructed us to head to the Cincy Children’s ER. So, off we went dragging our box of tissues, a Kroger’s bag for the used tissues, the bag of IV fluids and the pump. I had to scrape the ice off the windows at 2:30 am. I was thanking God that Greg found us a safe neighborhood to live in. We arrived to the ER in 15 minutes, the bag was getting fuller as the minute ticked by, and God left a wheelchair in the parking garage (again a prayer of thanks). Since Matthew is a BMT patient, we were immediately wheeled back to a room. (Another moment of thanks to God, since there were 50 or so people hacking up their lungs in the waiting room.)
Finally by 4am, the platelets were running and the nose bleed stopped. His nose bled for 2.5 hours. His hemoglobin was 8.4 after all that gushing. We were finally released from the ER at 7:45. And we arrived home by 8:15, morning traffic stinks around here.
We are both tired and now I have to get his morning IV’s going before I can get some sleep. Our BMT coordinator is calling Dr. D to see if we need to come in today for our 2pm clinic appointment. I’m hoping the answer is no, so we can both get some sleep.
Thanking God for keeping us safe during our nose gushing adventure.
Later……..
Love,
The exhausted but still Dynamic Duo
Tuesday, March 4, 2008 6:02 PM eT
Day 40
Good Evening:
Did you notice what day it is?? Day 40 since transplant. WOW. I can’t believe that 40 days ago, we were doing the cell dance while celebrating the gift of life from our heroic donor dripping into Matthew!
It’s been a dreary and cold day here in Cincy, which is quite different from yesterday. I think our high was 40 and it’s rained all day long. Today was dressing and cap change day and it went just fine. Matthew and I also did our laundry today. It was his daily PT. Our laundry room is down the hall from our room and is extremely clean and always seems to be empty! Matthew always wears his heavy filter mask when he leaves our apartment. I had a work conference call and then I hit the couch for a 2 hour nap. I can’t figure out why I’m so exhausted. I think the last 53 days might be catching up to me.
Matthew has bruises all over his body today. I hope they are from yesterday’s low of 8,000 and that his transfusion from yesterday bumped up his plates enough. His rash seemed to be under control today. I noticed a bit on his feet but the cream he applies is keeping it under control.
We head to clinic at 2pm tomorrow. I hope the roads are ok. We had a good amount of rain today and it will most likely freeze tonight. People in this town don’t seem to maneuver very well in ice or snow. SIGH.
Keep praying!
Love,
The tired Dynamic Duo
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8:52 AM
Day 40
Good Morning,
Iv meds are going right on schedule. Oral meds are all out and ready for 9am. Matthew and I ate a good breakfast. We were both really tired last night. I think the excitement from the weekend, the emotional goodbyes and our day in clinic wore us both out. But today is another day and we intend to make it a good day!
Keep praying….
Love,
The Dynamic Duo
**********************************************************
5:02 pM
Day 39
Good Afternoon:
Another long visit to the clinic. We arrived on time at 11am and left at 4pm. Yuck. As I suspected, Matthew needed platelets today. They were super low at 8,000. His other counts looked good. His Cyclosporin level was high, so we are “holding” it tonight and lowering the dose for the next few days (until Friday when we get rechecked). He also spiked a temp that was just below the cutoff thank goodness, it went down. We DON’T want to go back inpatient!
The temp in Cincy was 73 on the way home. Unfortunately, it started raining on the way home. We were thinking of sitting out on the patio after we arrived home. Maybe tomorrow!
Today’s Counts:
Hemoglobin: 10.4 (holding steady)
Platelets: 8,000 (yikes)
WBC: 6,900 (nice)
ANC: 6,140
Keep praying!
Love,
The Dynamic Duo
**************************************************
9:02 AM
Day 39
Morning Update:
We had a wonderful weekend! So, wonderful that I was too tired to post last night!
Yesterday, after our yummy breakfast, Brittany, Logan, Lauren and Greg headed to the pool and Deb, Kim, Matthew and I found a table so we could watch the swimmers and play some Catch Phrase at the same time! We were thrilled to have the pool to ourselves (less germs ya know).
Lauren & Brittany………
Love you Mama……..
Gotcha Matthew……..
And we got some more Guitar Hero time in….
We are the bestest buds!!!
Did someone say camera?
And then the big surprise of the weekend……….. my phone rang and it was Matthew’s pal Sean on the phone to speak with Matthew. They chatted for a few minutes and very quietly the front door opened…and there was Sean standing in the doorway. Everyone in the room EXCEPT Matthew knew that Sean was coming to surprise Matthew. They chatted a few more seconds on the phone with Sean grinning in our doorway and then Matthew turned his head and saw SEAN standing in our apartment! Everyone cheered and burst into laughter. Matthew was incredibly surprised!!
A look of surprise…..
A hug for my friend…….
The Roos Girls left shortly after Sean’s arrival. And then Sean and his Dad Mitch left around 5pm. Greg and the little ones had to leave a bit later. As they were scurrying around packing, Matthew noticed Logan had gone into my room. I went to check on him and found him sitting in the bathroom crying. It just broke my heart. He cried all the way to the truck. And he cried when I hugged him good bye. He whispered to me… “tell Matthew I said goodbye”. Waaaaaaaaaaaaaaaaa…then I looked over at Brittany who was struggling to smile thru her tears. It was agonizing to say the least. They called me when they got home so I could “tuck them in over the phone”. Greg told me that Brittany had cried herself to sleep in the truck and Logan was visibly upset for about an hour. And then he spotted a Burger King and all was good in his world again! This separation “stuff” is getting tough. Anyone from STC school that might be reading this…please give Logan and Brittany an extra smile or hug today, I think they might need it!
Home health care just left. They came to draw labs. Matthew’s cyclosporin IV is running and he’s eating some breakfast right now. We have to leave for clinic at 10:30. It sure would be nice if he didn’t need any transfusions!
Keep praying…
Love,
The Mommy with the aching heart and superman Matthew
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Sunday, March 2, 2008 10:20 AM
Day 38
Good Morning!
Our friends the Roos Girls came to town yesterday afternoon. We had a night full of good food, fun games and good company. Deb and I went across the street to a BBQ joint. We stressed over what to order, especially for Matthew. I’m still getting used to the Low Bacteria BMT diet rules. While we were waiting for our carry out order, Mrs. R and Mrs. V enjoyed a Margarita in the bar. The food was ready about the same time as we finished our drink. We came back to the suite and started handing out food and to our dismay I realized we FORGOT to order Matthew’s food. I think mentally I was so stressed about what he could and couldn’t eat I just plain forgot. So we called the restaurant and ran back to pick up his food. Geez….
While Mrs. R and Mrs. V were on our food adventure or should I say fiasco (?), Greg, Lauren, Brittany and Logan headed to the pool for a swim and Matthew and Kim played a game of Sorry.
After we ate, we played two games (True Colors and Scattergories). Mom kept up the meds and the IV’s the whole time. So all was good.
This morning, Matthew decided to make all of US breakfast. So, Deb and I headed to the Kroger to get some Bisquick and bacon. While Matthew was SLAVING away, we all played Guitar Hero. Ahhhhhh the life……..
Matthew cooking our breakfast, WHILE hooked to his morning IV….
Hard at work…………
While we playyyyyyyyyyyy
And Mrs. R dances……….
Gotta go……..IV is beeping and Breakfast is almost ready…it’s all about timing!
Love,
The Fab Five and the Rockin Roos Girls
Saturday, March 1, 2008 9:20 AM ET
Day +37
Good Morning!
Big news from yesterday …..Greg and the little ones arrived around 6pm. Matthew and I were like two little kids peering out the window, looking for Santa. Our window faces the parking lot so we saw them the moment our blue truck pulled in!
Here they are getting out of the truck……
Matthew peeping out the peephole to see if they are here yet…….
Here they are coming in the door of our suite…..
There were so many smiles and hugs! It was great! Matthew had bought some little surprises for Brittany and Logan at the hospital gift shop and they had brought him a birthday present. Greg brought me a big Valentines Day bear! We spent some time opening our surprises and jabbering about everything.
Later we went to the indoor pool at our hotel. Matthew rolled his IV pole down but got too hot since he had to wear a mask. 
After swimming everyone started to wind down with some TV and then bedtime for all. We all had a wonderful evening together. I sure have missed my family! Now, I just need to get Justin down here for a visit!
Clinic went well yesterday. They decided not to transfuse any platelets yesterday, so hopefully we won’t need an ER visit this weekend. So far so good! We ended up being there for almost 4 hours waiting for labs. Not the most expedient clinic visit we’ve ever had. Dr. D said his rash definitely looked like GVHD, but so far it’s mild. Mild is ok. Everything else looked good!
We received a wonderful “welcome to your new abode” gift from my cousin Mary Ellen! Isn’t it colorful and YUMMY looking?!?!?! Thank you Mary Ellen! Greg also brought down a care package from Tina. We can’t wait to try the homegrown peppers! Thanks Tina!
Matthew is feeling good today. I have his morning IV’s going and he just took his morning oral meds. Hooray!
Well, my kiddos are calling……..so I better close for now.
Keep praying…
Love,
The Fab Five
Friday, February 29, 2008 8:07 AM ET
Day 36
Good Morning:
I’m sure glad today is clinic day. I’m really concerned about Matthew’s platelet count. Matthew’s toes were completely black and blue on his one foot and the tops of his feet have bunches of wee little bruises called petichea. The rash on his feet has calmed down. That cream worked pretty good I guess!
Morning IV meds are running and we are perfectly on schedule. We’ll do orals at 9am, finish his IV meds at 10am, do the disconnect routine and then be out the door by 10:30. Our clinic appointment is at 11am. I also need to head to outpatient Pharmacy for some stuff. Lots to do today!
Then by the time we are home, hopefully Greg and the little ones will either be here or on their way! I’m about ready to burst with excitement!!!
Keep praying!
Love,
Nancy and Matthew
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Thursday, February 28, 2009 5:51Pm
Day 35
Evening Update:
This afternoon brought some excitement not of the pleasant variety. Matthew had two bloody noses within a 3 hour time span. The first was a real gusher that lasted 20 minutes and the 2nd lasted about 10. I was getting ready to dial the clinic number when it stopped. If he gets another one, I’ll give the night folks a call. I’m sure he’ll need platelets tomorrow to get us thru the weekend. He has quite a few bruises today too. Then a bit later he mentioned that his feet hurt. They were pretty swollen and he has a nasty rash. UGH.
We did a lot of walking today, so I hope the swelling is from that. He put some of the steroid cream the pharmacy gave us on his rash and rested on the couch to help the swelling. We’ll see what Dr. D says tomorrow at clinic. I’m pretty sure it is a mild GVHD flare. Which for his underlying disease a little bit of GVHD is ok, in fact maybe helpful in the role of killing any Leukemia cells that might have survived all that chemo and radiation. We just don’t want it to flare too much and get out of control. That could be life threatening.
Overall, Matthew feels good. He didn’t even take a nap today…wow!
He is sitting at the kitchen table working on his first History assignment. Yeah! And I’m waiting for the barbeque chicken and broccoli with cheese sauce that I’m making to finish baking and cooking. It is starting to smell mighty good here in our little cozy suite!
One more day until Greg and the little ones arrive. I am soooooooo darn excited and so is Matthew! Tomorrow will be 47 days since I’ve hugged my sweet little ones. GULP.
Well, dinner is almost ready and then it’s the crazy IV and oral meds crazy routine.
Keep praying……..
Love,
The Dynamic Duo
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1:51 PM
Day 35
Our Humble Abode:
Our nice work and homework area:
Nice size closet and our basketball court:
Kitchen table and living room area:
Matthew playing xbox in “his room”:
Our kitchen:
Living Room with fold out sofa:
My room:
My very own, five steps away potty:
Later!
************************************************
12:11 PM
Day 35
Good Afternoon!
The morning went smoothly. IV meds went in without a hitch and oral meds are on schedule. Matthew (fully masked) and I walked to the front office this morning to discuss trash, linen change schedule and weekly cleaning schedules. They are most accommodating and helpful! We discovered a REALLY cool coffee machine in the lobby. You can make freshly ground coffee in any of probably 8 different flavors. FUN! After our office visit, we checked out the Laundry facilities. There are 4 washers and 4 dryers. Each is a dollar, so those of you that sent quarters…….THANK YOU!! After that we checked out the exercise room. Matthew and I (disinfectant wipes in tow) might head there later. He expressed interest in pedaling the stationary bike while I sweat and probably have a heart attack on the treadmill and elliptical machine. Please pray for me!! Then our final jaunt was to look at the indoor pool. It is great and it is EMPTY. I’m so excited to take the little ones swimming this weekend.
Matthew is making our lunch now! So, I’m off for now.
This afternoon Matthew will be going to school. Yes, it’s time to start World History lessons!
Love,
The Dynamic Duo
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10:11 AM
Day 35
Good Morning,
My day started early at 7am. I woke with the aid of two alarms. Not that I was paranoid I might oversleep and totally screw up morning meds…..ok yes I was very paranoid.
Everything went very smoothly. We have our Methyl prednisone in and the Cyclosporin has another ½ hour to go. Oral meds are done until 3pm. I spent some time organizing supplies so hopefully that will make the process even easier. I have one tweak to make to my morning routine and I think all will be good. My concern is on Clinic days. Our appointments are at 11am. So I have a lot of meds to give prior to us leaving for clinic.
Matthew ate a good breakfast and is happily playing his Guitar Hero and is sounding pretty good I might add.
I have finished putting all of our boxes and tubs away and the kitchen is pretty organized. I think my next big task is to go discuss cleaning schedules, linen changes for Matthew who needs his bedding changed daily and trash pick up. With all of his meds and supplies, I’m filling up the trash quite rapidly. After that I need to run a load of laundry and answer some work and personal emails and then maybe take a nap or do some reading. Oh my, by then it will be time for 3pm meds……..yikes………
I’ll take some pictures later of our new digs! We really like our “pad” and it’s like living in a palatial estate after being in that one room for 5 weeks or so! It’s all relative isn’t it? Oh and the big news…….my POTTY is exactly 5 steps from my BED. So much better than 5 miles to the communal potty from my rock hard chair bed! Ahhhhhhhhh, pure luxury!!
Keep praying………
Love,
The getting settled Dynamic Duo
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Wednesday, February 27, 2008 9:01 PM
Day 34
Night Update:
We are moved in, Matthew is zonked and I’m overwhelmed and exhausted. Greg came and disinfected the apartment. Sally headed right to the hospital to help us started packing up. To make a point here…when Sally helped move us in to Room 507, we managed to get everything up to the room in one trip. I think it took Sally and Greg 3 trips to move us out, plus we were carrying more stuff our final trip out to the van.
Matthew’s blood transfusion was over around 5pm and as soon as that last drop dripped in Matthew was pushing the nurse button! He was SOOOOOOO ready to bust out of that joint.
Patiently watching those red blood cells drip……
Brandi from Child Life giving Matthew a farewell gift from the hospital…
Gotta finish this book I borrowed…hurry hurry…
Greg with Load #2…..
Matthew helping to pack…….
Mom packing up food from our food shelf……..
Loading up the van……..
Matthew and Team Move Out………
Mom and Sally……we did it!!!!!!!!!!!!!!!
Our super hero walked himself all the way to the van and all the way into the apartment. He was pretty tired after all that so he went to lie down and rest.
Meanwhile, Sally had gone to the store to completely stock our refrig, freezer and cabinets. You wouldn’t believe how much food she bought us!
When we arrived at the apartment, Sally was busy unloading our groceries for us. We spent some time putting a few things away and then before we knew it 7:00pm had arrived and the home health care nurse arrived. You absolutely would not believe the amount of supplies and meds I have to deal with. It is a bit overwhelming. She watched as I prepared the lines, the pumps, the meds and the fluids. Then I had to prepare his oral meds. I hooked him up to him Cyclosporin and have the fluids all ready to go. At 8:20 I started his Cyclosporin. Now I have to stay awake until the meds are done and then I can start his fluids.
Tomorrow, I have to get up at 7 to pull his meds out of the refrigerator, mix his meds, prepare his lines and be ready to push his steroids and hook up his morning dose of Cyclosporin. Then I need to lay out all this oral meds (6 in the morning I think) so they are ready for him to take at 9am. My head hurts.
We have a “free” day from clinic tomorrow. We don’t need to go back until Friday! Yeah!
Greg and Sally were both on the road by 7-ish, One heading to Fort Wayne and one heading to Indy. My goodness they were both amazing today. We couldn’t have done it without their help!
Well, I’m waiting for Matthew’s pump to beep so I can start his fluids. I better sign off for tonight!
Keep praying!
Love,
The Dynamic and FREE Duo
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9:01 AM
Day 34
Morning #2:
It’s me again…we are still excited…Mom is still bustling…Matthew is waiting for blood….and I have counts!
Today’s Counts:
Hemoglobin: 7.8 (need blood)
Platelets: 42,000 (wonderful, thanks to our platelet transfusion)
WBC: 5,700
ANC: 4,790
Later!! (more exclamation points!!)
LOVE!!!
Nancy!! And Matthew!!
**************************************************
8:38 AM
Day 34
Good Morning,
Oh my gosh, we are so excited! I’ve been up since 7am. I went to the parents lounge to read and pace so Matthew could sleep in a bit more. Then I began “bustling around” as Matthew noted. Matthew does need a blood transfusion today but his platelets look good after yesterday’s platelet transfusion.
Greg and Sally should be on their way!! We are so excited to see them both! Gosh what a great day this is starting out to be! Lots of exclamation points in this post, have you noticed?
I’ll try to post more later but with all the hustle and bustle that will have to happen today, I’m not sure what time. There seems to be a home health care nurse shortage this week, so I’m not sure what time we will get released. It may not be until late tonight. But who cares!
I put our “new” address up above!
Later…
Love,
The soon to be sprung dynamic duo
Tuesday, February 26, 2008 6:27 PM ET
Day 33
Good Evening,
Hello from mush brain Mom. Holy cow, I learned a lot today. My head is beyond spinning and into orbit mode. Not only did we review what I learned yesterday, we added a cap change and a dressing change which is completely different than the way I was taught. Then I had training on nutrition and diet rules for a low bacteria BMT diet. Goodness there’s a lot to remember there too. Then we discussed the clinic process, the emergency process and the visitor rules. ZOING, the head about spun completely off by the end of that session. Tomorrow, I have to do IV fluid training, pharmacy training and God knows what else.
I got nothing done in the room today and quite honestly I am too tired to worry about it. I said good bye to another friend today. They had their transplant the same night Matthew did so we are pretty close behind them!
Matthew is tired, as he did a lot of walking today. He went all the way to PT and back while pushing a wheel chair. Then he did an hour of PT and OT. Then he has been playing Guitar Hero in the room too! AND the Music Therapist finally connected with us and Matthew took a quick guitar lesson! How fun!
We are winding down our stay in 507 very quickly now and we’re about to start the next leg of our journey home!
Please say a prayer that Greg and Sally make it safely to Cincy!
Love,
The mind numb Mom and her superman son
***************************************************
9:27 AM
Day 33
Good Morning,
We had a fun night last night playing online games with Brittany for awhile and then Greg, Matthew, me and the Roos Girls! We stayed up really late (even Matthew)! We were awoken early because Matthew needed platelets first thing this morning. I kept saying all day yesterday that I thought his platelet count was incorrect yesterday because of the big unusual increase and the 20 minute bloody nose gusher. Oh well, he’s getting them now so all is good. Matthew’s hemoglobin is low today, he’ll get a blood transfusion if he gets the bad headaches otherwise it will probably be tomorrow.
I guess we got 4 inches of snow at home with more on the way. I hope Greg is able to get here tomorrow to help us escape. I’m not sure what we’d do if he can’t get here. There is no way I can move all the “stuff” we’ve accumulated over the past 33 days by myself with this stupid back of mine. Plus, I’d need to get the suite ready….aghhhhhh.
They tested Matthew for the C-diff he had when we got here and he’s cleared that infection! Hooray.
Matthew should have OT and PT today and I’ll have the rest of my training. I think I’m going to start taking down all of our posters and pictures this afternoon. I guess I’m sort of afraid of jinxing things, so part of me wants to wait until tomorrow morning. Sigh….crazy roller coaster we are on….we just don’t know what to expect.
Two of my new friends and their sons were released yesterday and we are going tomorrow. I have two other parents that are still here to commiserate with. Ed will be here for a while with Ellis since they had their transplant last week. Albert’s Mom and Dad don’t know when they’ll be able to go. He’s having some serious GVHD issues. When one of us leaves, there are definitely mixed feelings. On one hand you are thrilled that they are well enough to be sprung. On the other hand, you miss them. The bond that a BMT parent has with another BMT parent is unique. You see each other in your pajamas, hair matted and nasty looking, no makeup, stressed, laughing hysterically, sobbing desperately, eating or not eating depending on the stress makeup of the person, but even at our worst…we just don’t “see it” or even care. It’s the soul that we see. The undeniable love a parent has for their child. The fear of losing that child permeates the unit. We rejoice the small and big steps. We mourn the setbacks and the losses. It is a relationship that I will never forget.
Today’s Counts:
Hemoglobin: 8.3
Platelets: 5,000
WBC: 7,400 (dropping since we didn’t get GCSF yesterday)
ANC: 6,360 (still wonderfully good)
Keep praying…….
Love,
The dynamic and getting really excited duo
**************************************************
Monday, February 25, 2008 7:27 PM
Day 32
Good Evening:
My head is beginning to spin. There are so many details involved with being sprung. I had 2 training sessions today. One was to learn all about “home health care” and sign all the paperwork. The second was to learn how to use the pump, change the IV lines, give the steroids and the Cyclosporin via the IV. Tomorrow I learn how to run the IV fluids on the 2nd pump and they have to “watch” me do a dressing and cap change. I feel like I have to prepare for a college exam or something. Lots to remember and lots to be responsible for….infection control is critical….just a wee bit more stress to this stressed out Mom.
Greg has our living arrangements all figured out. We are staying at a place called Arcadia Suites in the north part of Cincy. A very safe place, very clean, very quiet, they are used to BMT patients, they give a hospital discount, indoor pool for when the little ones come to visit (Matthew can’t swim but the kids can), laundry facilities onsite. It has 2 bedrooms (a requirement) and Matthew will have his own bathroom. There is also a fold out sofa for when the little ones come to visit! It has a fully equipped kitchen too. So, I think we are all set! As soon as I know our new address, I’ll be sure to post it on the site!
Greg is driving down on Wednesday and so far I know that Sally is driving over from Indy too. They will go to the suite to completely disinfect every square inch and then head back to 507 to help us pack up. I know we’ll need to head to get some food as we are pretty much cleaned out here. The diet requirements are another thing I have to get trained on. There are so many do’s and don’ts for that issue too.
I still have to figure out all that needs to happen. I’m not sure how we get his oral meds for instance. IV meds will be delivered by home health care along with IV supplies, dressing change kits etc. Then I have to figure out this whole “clinic” visit thing. How often, the times, how do you juggle those with the IV meds I need to give him at “home”? Aghhhhh, my head is spinning more.
Even with all this “stuff” to figure out, I’m thoroughly excited about our upcoming release. It’s a step that seemed soooooooo far away 32 days ago. Another step towards Matthew’s recovery and eventually our return home.
I’m starting to get so darn excited about seeing my little ones. I have had to bury those “I miss you feeling” in order to not totally melt down. But since I know that hopefully if they stay healthy, I’ll be seeing them this weekend, hugging them, tucking them in, kissing them and doing Brittany’s hair….I’m getting so incredibly excited!
Matthew had another good day. He did some PT in the PT room, played a computer game for several hours, finished a book he was reading and is watching some TV now. His appetite seems to have slowed down for some reason, so I have to nudge him a bit more. He has lost some weight since the amount of IV’s fluids and meds have been decreased. I think he’s lost about 8 or 9 lbs.(why they don't do weights and temps in ENGLISH is beyond me) So we need to work on our healthy albeit very restricted eating!
Keep praying!!
Love,
The getting very excited Dynamic Duo
**************************************************
9:47 am
Day 32
Good Morning,
Last night neither of us slept very well. I think Kevin and his family was weighing heavily on our minds and hearts. I found myself praying for Kevin and his family. I would dose off and wake a bit later continuing right where I left off. I have said good bye to way too many children during this journey. More than I can even count. This particular farewell has hit me the hardest. I didn’t even have the pleasure of meeting Kevin, but through his Mother I was able to “know” him.
Matthew ate a good breakfast today and is all fired up to do some PT/OT in the therapy room downstairs! He will get an IVIG infusion this morning, his Cyclosporin and steroids and then this afternoon, we’ll head to therapy.
I should be getting my training today. Lots to learn to take care of this kid on my own!
Matthew had a pretty bad nose bleed that started a bit ago. It has been over 10 minutes now and is still going strong. We’ll see if the docs want to give him platelets today or not.
His counts look tremendously good today thanks to the GCSF. My guess is we’ll stop the GCSF for today but we’ll see what the BMT docs have to say at rounds.
Today’s Counts:
Hemoglobin: 9.2
Platelets: 20,000
WBC: 12,100
ANC: 10,290 (Holy Cow!)
Keep praying……
Love,
Nancy and Matthew
***********************************************************
Sunday, February 24, 2008 8:57 PM
Day 31
Evening Update:
I’m asking you to say a prayer for the Lee family tonight. Kevin Lee, 14, went home to be with God tonight. His Mom, Tammy, was the first Mom I met on the BMT unit many weeks ago. This woman has walked the final weeks with her son with grace and courage. We have prayed together, cried together and laughed together. My heart is heavy as I think of the difficult days, weeks, months, actually forever, that this Mother will have to face without her son physically at her side. She was very accepting of their reality and was at the point that she was ready for Kevin to go heaven. A true woman of grace and courage has crossed my path and I will never forget her.
Love,
Nancy
**********************************************
3:57 PM
Day 31
Good Afternoon!
It is been a really calm day around 507. I did our laundry with absolutely no delays or long lines. I missed the clean shower and had a déjà vu from my early showering days…yucko. I went to the cafeteria during downtime (me and 3 other weary parents) to get a salad but the salad bar was closed. That stinks. So, I made a few phone calls which were nice.
Matthew and I watched Enemy of the State. That is a really good movie, actually kind of scary though to think of who might actually be listening and/or watching you at this very moment….gasp!
Matthew is cleaning up for the day and then I think we’ll take another walk around the unit. We are starting to get excited for our hopefully eminent release from 507! Matthew took a nice long nap after lunch but is still pretty darn tired. He has a long way to go still but he’s doing amazingly well!
It’s snowing here in Cincy. It’s really beautiful. Our room overlooks a distant rolling hill and it’s kind of misty as well as snowy.
Keep praying!
Love,
The Dynamic Duo
*******************************************
9:27 AM
Day 31
Good Morning:
We had a nice calm night. Matthew ate a good breakfast and is sitting up gagging down his 6 different oral meds. He is hooked back up to the IV for his 2 hour Cyclosporin infusion. After that I think he’s free until tonight’s dose of Cyclosporin, steroids and GCSF (if needed). So, most of the day he will be free!!
Well, no one can say that Matthew’s marrow isn’t producing cells. We have lots of cells this morning. I can’t help but wonder though, what his marrow will do when we stop the GCSF again. The plan from yesterday was to gradually slow down on the GCSF so we don’t have another stall. Hopefully, that will work better this way.
We haven’t had rounds yet but I’m not anticipating anything earth shattering. I need to do some laundry today (yuck) and finish up some paperwork stuff (double yuck) and attempt the shower from you know where (triple yuck). Other than that, I hope we can take some short BMT walks, watch a movie and play a game or two. That sounds just delightful to me!
Thank you to everyone who went to Mass at St. Peters and thank you to Julie for organizing it! Keep praying!
Today’s Counts:
Hemoglobin: 9.4
Platelets: 13,000 (may need transfused0
WBC: 10,100 (Holy Ka-Moly)
ANC: 8,690 (Infection Fighters Rule)
Love,
The Dynamic Duo
Saturday, February 23, 2008 3:35 PM ET
Day 30
Afternoon Update:
Guess who is sitting in a chair totally free of any IV tubes??? Hint….it’s NOT me!! He won’t need to be hooked up until 9pm tonight for fluids and his night IV meds! It seems so weird to see him out of bed and free of the IV pump!! Yeah!!
We watched a movie today and Matthew is working some puzzle books and I’m working on insurance crap.
Our friends Nancy and Scott from Indianapolis drove over for a surprise visit today! It was so wonderful to see them both. They brought a beautiful Rosary and St. Anthony’s medal. St. Anthony, the Saint of Miracles………Matthew is our miracle.
We might try to take another walk around the BMT unit today. It will be much safer for all those living here since Mom will not have to drive the pump!
Matthew had a great lunch and his sugar levels are doing great. Oh, and that is totally insulin free now for over 24 hours! Yeah!
Keep praying!
Love,
The dynamic duo
***********************************************
10:35 AM
Day 30
Good Morning!
I have some really good news!!! Matthew’s biopsy results and engraftment study results are back. On the day he had his bone marrow biopsy, his marrow was 15 percent full of healthy cells. This was ok and the BMT doc said by now it should even higher since he is spilling all the cells from his marrow into his peripheral blood. And the marrow is 99.6 percent donor cells!! That is good too! Many smiles on the faces of our team!!
Matthew is pretty much on oral drugs now (lots and lots of oral drugs). The only IV drugs he is still getting is the steroids, Cyclosporin and GCSF. They have totally stopped the insulin (hooray) too. I asked again if we are on target for being released mid week and the answer was YES!
More good news is in the counts department. Matthew has lots of good cell growth going thanks to the GCSF. They will be keeping him on that for a few more days and then maybe going to every other day. They don’t want the “hiccup” we had this past week where the marrow seemed to stall. No transfusions needed today either! Yeah! Today is lookin good!
Today’s Counts:
Hemoglobin: 9.7
Platelets: 25,000
WBC: 6,100 (Yahoo)
ANC: 4,580 (woo hoo)
Matthew ate a great breakfast and is sitting up reading the guestbook messages and checking his email! We’ll be heading out of the room later for another walk in the BMT unit halls! Freedom is starting to sound like a reality!
Speaking of freedom, Greg has found us a place but is still looking at 1 other option, but at least we have something lined up for sure. I can’t thank everyone enough for all the help with this task. You have no idea how much it means to us to have everyone trying to help. We have even had 2 families offer their home to us. Unfortunately, they were both a good drive from the hospital. We need to be close, just in case. Plus we’ve been told we’ll be practically “living” in the outpatient clinic initially. So we need to be close to the hospital. Anyways, things are coming together. Greg and team will be heading to “wherever” to deep clean and disinfect the entire place (refrig, freezer, stove, bathrooms, counters, Matthew’s room especially). We purchased some Hepa Filter machines and he wants to get those running way prior to our arrival. They will get us stocked with some groceries and then come back to help us pack up and get us moved! We have a plan! I think!
Keep praying!
Love,
The Dynamic Duo
Friday, February 22, 2008 8:58 PM ET
Day 29
Night Update:
Greg left for home around 5:30, we’ll miss him a whole bunch but know that hopefully the next time we see him, he’ll be moving us outta here!! He called us a bit ago and I guess he hit some really bad weather in Dayton. He encountered some snow, sleet and freezing rain. I’m glad he didn’t call me to tell me that WHILE he was driving in it..not that I would worry or anything…nope not me…I never really worry much about anything……..HA!
Matthew was pretty pooped this afternoon after being up all morning. He read, sat up in the chair, we played some serious Scattergories and he was on the laptop. Later he took a nice nap. After dinner we strolled down the halls of the BMT unit. He pushed a wheelchair for stability, I pushed the IV pole and managed to crash into the wall only once! We were able to wave to some friends that I’ve made while on my tour of duty in the parents lounge. The grins are amazing! Everyone rejoices when one of our “kids” is able to walk the BMT halls! Our fighters are brave and strong kids!
Hopefully, tomorrow will be a calm day filled with good counts, maybe some final reports on the bone marrow biopsy and some rest.
Keep praying…….
Love,
The Dynamic Duo
**********************************************
10:08 AM
Day 29
Late Morning:
Welcome to our roller coaster ride. We have now entered the calmer part of the ride, please remain seated and keep your arms in the car.
Matthew’s counts are back and everyone is happy happy happy! AND they are now talking about training Mom on how to give Matthew IV meds at “home”, run the pump, give shots etc. AND they are now talking about a possible release from the hospital on Wednesday or Thursday. Geez, we go from absolute doom and gloom and totally crazy fear stricken gut wrenching chaos to we might be able to be released on Wednesday or Thursday. How crazy is this roller coaster ride we live on???
Greg is narrowing down the living arrangements. He was going hot and heavy until the latest crisis of the week. Now he’s going into high gear again!
Today’s Counts:
Hemoglobin: 10.8
Platelets: 19,000
WBC: 2,200 (Hooray!!)
ANC: 1,080 (BIG SIGH OF RELIEF)
We still don’t have the biopsy results or the engraftment study back yet. But everyone’s tone, facial expressions and overall demeanor was so much lighter and happier today than the previous few days!
Here’s my two handsome men….. (Allyson, he is reading the book you sent him)
More pictures on our Network Wall…….
A special poster made with love by our very own Nurse Shirley from Lutheran Hospital. I wish you could see all the detail that she put on this poster. Every piece of the poster board was covered with pictures our beautiful nurses from Lutheran and words of hope, fight, humor, Mom stuff, Cincy, Lutheran, and inspiration. It was made after much thought and much love. Thank you Shirley.
Please join me once again in a prayer of thanks. God is good, God listens and God loves us all. Thank you Lord, for once again answering the prayers of so many of your children. Amen
Love,
The Terrific Trio
****************************************************************
***REMINDER***Announcement From our friend Julie Workman:
I just wanted to let you know that I'm having a Mass said for Matthew at 4:00 on February 23rd at St. Peters. It will be followed by a mini holy hour, so if people want to stay and pray for Matthew they are more than welcome. If you'd like to post this on his caringbridge site you can let people know that EVERYONE is welcome. The address of St. Pete's is 518 E. DeWald St. In case people are intimidated by the location, we have never had a safety issue there. Also, there is plenty of parking in the parking lot across the street from the front doors of the church. They might want to get there a little early because that Mass is normally pretty full. Hope we get a real crowd. Matthew is definitely on the mend, and we need to pray that the next year is a good one for him and your family.
***************************************
9:48 AM
Day 29
Good Morning,
Well, in some ways it is hard to believe we are at day 29 post transplant and day 35 inpatient and day 40 since we left home. In other ways I feel like we’ve been in Cincy forever. Greg is still here with us, which has been very much like a mini vacation for me! We are so much enjoying our time together. Even the chair bed feels comfy with Greg here with me! Greg and I had a dinner date a fine dining establishment called Café Cincy Children’s. Honestly, I didn’t care where we were at, the company was fantastic!
I have no idea what Matthew’s counts are yet. It seems the lab has lost his sample….UGH. Not that any of us are waiting at the edge or our seats or anything. Nurse Susan is re-drawing them now and they have been ordered as STAT.
We haven’t heard anymore news on the bone marrow biopsy results. Hopefully, we’ll have some more good news later today.
Matthew had a great breakfast this morning, his BP is on the high side this morning and they won’t test his sugar for another 2 hours. Yesterday was a good “sugar” day for him as he only needed the one shot of long lasting insulin. His sugar levels have really calmed down even with the stopping of the TPN. Yeah! I’m hoping his pancreas is starting to do its thing again and we can stop all the testing and the long lasting shot too!
Well, I’ll update after we get counts back and rounds are done and hopefully after we have some biopsy results?
Love,
The terrific trio
Thursday, February 21, 2008 3:03 PM ET
Day 28
Mid Afternoon Update:
More good news….Dr J came in to say that the flow cytometry results are back in. No leukemia cells and a wide variety of healthy white blood cells are present. This is a good thing. They still don’t know what percentage of donor cells are in the marrow and how full the marrow is but on the Leukemia front things couldn’t be better.
I’m starting to feel oxygen filling bigger chunks of my lungs…..I feel the urge to eat again and I really want to take a nap. All good signs I think!
Keep praying………
Love,
N, M and G
**************************************************
1:15 pm
Day 28
Early Afternoon Update:
Preliminary results are in. They BMT docs looked at the slide and saw NO Leukemia cells and they did see healthy cells. We won’t know if these are donor or Matthew cells until tonight. The biopsy results won’t be back until tomorrow. This test is a “core” sample that will look at the cellularity of the cells. It will help them determine just how full the marrow is. Our hope is that it’s full of donor cells (not Matthew cells). If that is the case, they have to then figure out why the marrow has cells but just isn’t spilling them out into the peripheral blood like it should be.
It is the first step towards MOM breathing again. No cancer is huge news. Still lots to figure out but no cancer is HUGE!
Keep praying….
Love,
The Terrific Trio
************************************************************
11:15 AM
Day 28
Morning Update:
We are back from the procedure and they are rushing in some platelets. His platelets dropped to 4,000 even after his platelets yesterday. He is having a lot of pain from the bone marrow aspiration and biopsy. He and Greg are discussing games at the moment and it’s a lively discussion!
The good news of the day is that we had a wee bit of movement in the Neutrophil department. At least I think that’s good. Whatever is going on his marrow is really struggling at the moment. Last night I was told we should have preliminary results after lunch. (I hope)
Greg arrived last night around midnight. I was so good to have him here with us. He is such a calming influence on this frazzled Mom. I’m so tired and my eyes are huge puffballs.
We just got back from rounds and the big topic was “what will the marrow tests tell us?” We will definitely have prelims today from the aspiration but the biopsy results won’t be back until tomorrow. They are not going to taper steroids until we get they figure out what is going on with the marrow.
Someone in the guestbook asked what a Neutrophil was…..A Neutrophil is a type of white blood cell. There are several types of white blood cells and they all have different jobs to do. The Neutrophils fight bacteria. Normal range is 40-62 percent of the white blood cells should be Neutrophils, he has had zero for a few days and thus the concern.
Today’s counts:
Hemoglobin: 14.7
Platelets: 4,000 (scary low)
WBC: 700
ANC: 80 (yeah we have some movement)
Neutrophils: 11
The waiting is agony, but thankfully Greg is here to keep me somewhat calm.
Keep praying!
Love,
The Terrific Trio
Wednesday, February 20, 2008 10:21 PM ET
Day 27
Evening Update:
Greg is on his way and due to arrive around midnight. Thank you to Grandma for dropping everything to come care for the little ones.
I have talked to most of the BMT docs tonight. Worst worst case scenario is a relapse or engraftment failure. BUT each of them has said there are other scenarios too. They are very proactive around here and rule out the worst pretty early on. (no kidding, didn't we just do this LAST week??) So, the only way to rule out the worst is to do the bone marrow aspiration. So, that is what we will do tomorrow at 9:30.
Please pray that this is something other than the worst case scenarios.
Love,
The dynamic duo soon to be the terrific trio
********************************************
4:11PM
Day 27
Afternoon Update:
Stress level just went up 2000 percent. The BMT doc just came in and said they have scheduled Matthew for a bone marrow aspiration tomorrow at 9:30 am. They need to look at his marrow to see if they can figure out why he has no neutrophils after 2 days of GCSF infusions. It could be several things other than a relapse that may be causing cell growth suppression. GVHD can cause suppression for example. He definitely had a flare of the rash today that looks like GVHD.
This roller coaster ride is so @#$* painful. Greg is going to come back down either tonight or tomorrow morning. I just can’t deal with this on my own.
Please pray.
Love,
Nancy and Matthew
****************************************
11:25 AM
Day 27
Late Morning After Rounds Update:
Lots of stuff to work thru. They now have him on 2 BP meds continuously and another as needed. They are adjusting fluids to help the chemistries. He ate 1700 calories yesterday which is a big improvement. Sugar issues seem stable. The BMT docs are going to the lab to actually look at the slides from this morning. He has no Neutrophils at all (that is why is ANC is zero). They find that hard to believe since he’s been on GCSF for 2 days now. I asked “is that all you are looking for” and they mumbled “uh huh” or something to that effect. The clenched stomach feeling stinks I tell you. I find myself analyzing and in some cases overanalyzing everything they say. I have another headache.
Matthew is getting his platelets now and is trying desperately to sleep. His face is very flushed again today and he has a bit of a rash on his arms and palms. So there was some discussion of increasing (not tapering) his steroids so that GVHD doesn’t flare.
Lots going on….I’m going to go drink a DDP and wish it were that Margarita Debbie R owes me……
Later……..
Nancy and Matthew
PS Special Request, please do not call the room phone. It sounds like an air raid siren and poor Matthew is trying to sleep. Please use my cell phone! Thanks from the sleep fairy!
************************************************
10:45 AM
Day 27
Late Morning Update:
Matthew is sleeping now. I think all this BP, chemistry stuff is making him feel even more tired if that is even possible.
Today’s YUCKO counts:
Hemoglobin: 10.4
Platelets: 5,000 (yikes)
WBC: 800 (bummer)
ANC: still ZERO (we need some infection fighters)
Please pray for Matthew’s marrow to get busy producing some cells, for his BP to get back under control and for his chemistries to straighten out.
Love,
One IU fan and One OSU fan (Hoosiers ROCK)
*****************************************************
Day 27
Mid Morning Update
Funky renal results means…….too high Potassium and too low magnesium and BP too high. So they are stopping all fluids, giving him Lasix to get some fluids off, just ran an EKG to be sure his heart is ok, changed his BP medicine and will be discussing his hypertension at rounds and they put him back on the heart monitor.
A lot of drama for this early in the day. I still haven’t seen the labs myself so I’m not sure what his ANC is…….I’m off to find labs…..
Love,
The dramatic yet still dynamic duo
**************************************************
8:59 AM
Day 27
Morning Update:
BP remains a pesky issue thru the night and so far this morning. We woke to a 173/101. I’m anxious to see what today’s plan might be. Matthew is completely off TPN and the insulin IV drip. He had his 1st long lasting shot of insulin last night and his sugar was perfect this morning. They will check his sugar in 3 hours to see if he needs a fast acting shot. But so far, they are pleased with his tapering off of the TPN and how his sugar levels are reacting.
Matthew feels very tired this morning, I’m not sure if the high BP issues are contributing to that or it’s just recovery tired.
My back is not behaving and I couldn’t sleep at all last night because of it. I just do not have time for this back stuff.
Labs had to be re-drawn due to some “funky” renal results. Hopefully, they look better after the re-draw. I don’t know what all his labs look like yet since they are re-running them all. I’m anxious to see what his ANC looks like today, as well as his funky renal results. Our nurse just popped in and said the results are still looking funky…plan is being developed. SIGH. Oh and his platelets are only 5,000 so he needs a transfusion PDQ.
On a happy note, IU beat PU last night and I am the proud winner of aMargarita. Thank you Deb! Oh and for all my Purdue fan friends….. “good game”
Keep praying………..
More later……
Love,
Nancy (the Mom with the uncooperative back) and Matthew (the high BP kid)
Tuesday, February 19, 2008 3:56 PM ET
Day 26
Afternoon Update:
All is going smoothly today for Matthew. He is eating pretty well and they are dropping the drugs off as planned. He is pretty tired this afternoon, so he’s taking a nice nap.
I had to file an incident report today though. I picked up something that looked like a cap and it was a needle unfortunately. Not good. So, I reported it to the nurse, who had to file the incident report. I slapped some antibiotic cream on it after washing and we are good to go.
We got some cool things in the mail today! Cousin Reagan sent a cute handmade snowman! The Feans sent a Rosary making kit! Chris from BC sent some Star Wars things! Aunt Jodie and Uncle Tony sent some great goodies for us both! And Cecelia and Dustin sent a great care package. The award for the most hysterical gift of the day goes to Cecelia, she sent an Indiana’s Driver’s Manual!! Thanks everyone!
Love,
The dynamic duo
*************************************************
11:54 AM
Day 26
Late Morning Update:
Well, phooey…the original labs were correct, in fact they are even worse than the 3:30 am draw DOUBLE UGH.
Here they are …the good…bad and the ugly…….
Today’s Counts:
Hemoglobin: 11.5
Platelets: 20,000
WBC: 900 (YUCK YUCK YUCK)
ANC: ZERO (gasp gasp gasp)
I sure hope the GCSF stuff stimulates the marrow into producing some white blood cells soon. We need those infection fighters!
Keep praying……..
Love,
Nancy and Matthew
***********************************************
10:46 AM
Day 26
Morning Update:
Matthew is feeling good this morning. He ate a good breakfast and is up on the laptop already!
Rounds went well today too. More adjustments were made. The biggest change is that after Matthew finishes the bag of TPN that he is on right now, they will stop the TPN. Matthew ate 1600 calories on his own yesterday! Hooray. Now the challenge will be adjusting the insulin. He may have to do insulin shots since he is on such high doses of steroids. They decided to start the official tapering on day 28, and then the tapering will be at a rate of 10 percent per week. That is all subject to change of course if any GVHD flares up.
The big issue for today was his lab results. His ANC dropped to 70 while on GCSF, so they ordered a re-draw to rule out a lab error. UGH…so, I don’t have counts to report since they suspect a lab error.
The big news for the day is…..with a long list of qualifiers……..Matthew may get to be SPRUNG from the big house by the end of next week. Of course, the list of qualifiers is some issues that we are dealing with now and hopefully nothing new pops up. But the “signs” I was seeing yesterday have now been put into verbal words by a DOCTOR….so that’s a good thing!
Keep praying….
Love
The dynamic duo
Monday, February 18, 2008 4:57 PM ET
Day 25
Afternoon Update:
Matthew is doing pretty well today. He’s been up most of the day in fact! We watched a funny movie, he hung out on the computer and read. Dr G decided not to taper the steroids today, she still thinks he looks flushed. Other than that the plan of the day went into effect and so far so good! His BP was nice and normal today so far!
Matthew received more birthday gifts! Thank you Amy, Tanner and Tyler for the Steelers Super Bowl games DVD’s. I have a feeling I know what we’ll be watching soon! Thank you to Lara for all the pictures of Matt’s friends, it sure was nice to “see” everyone! Thanks to Matt H for loaning Matt the movies! More fun stuff to keep us busy! Thank you to the Elsasser Family for all the surprises! Matthew and I love them all, the Tupperware is great, the homemade caramel corn is our FAV, the munchies will be munched and most importantly the Special Healing Gift thru Healing Mass enrollment. Thank you also for all the handmade cards from STC 1st and 6th grade! Matthew says a big thank you to you all!
A few clarifications…
1. We haven’t been sprung and we haven’t had any word to that effect. I’m just seeing signs that we are progressing in the right direction. I think I caused premature jubilation. So sorry!
2. I didn’t intend to sound like I was bashing RMH. I just don’t think for BMT kids, it is the safest (germ-wise) place to be. RMH is a truly wonderful facility and serves the children very well. In fact if Matthew weren’t a BMT kid, I would not be giving it a second thought. I think I left the wrong impression and I did not mean to do that at all. I still plan to collect hundreds of pop tabs every year and deliver them to RMH! It is a great place and a much needed place.
3. Our #1 goal is to keep Matthew safe. His immune system is seriously compromised and we have to take every precaution humanly possible. We will have guidelines that will help keep him safe including, what he can eat, where he can go, and visitor guidelines. I don’t have all that training yet so I don’t exactly know what the guidelines will be yet. So, if something seems extreme (especially in the visitor category) please remember our #1 goal is to keep Matthew safe. This is life or death here and we choose life!
4. Matthew will have a long recovery period. It can be up to a year for him to get all his strength back, for his immune system to recover and for all the other issues he has to settle down. We have a long road to recovery, but we are doing it one step at a time!
Keep praying……..
Love,
The Dynamic Duo
****************************************
11:48am
Day 25
Late Morning Update:
Rounds went well. A lot of changes were made, hopefully I remembered them all. As for the ANC drop, they are indeed going to give him IV GCSF to stimulate the marrow to start growing some more white blood cells, in particular Neutrophils white blood cells. As for the TPN, since he ate 1000 calories on his own yesterday (way to go Matthew), they will be cutting his TPN amount in half. It will run continuous due to having to keep his sugar levels stable. But that is a good sign too! They stopped the second antibiotic since his blood cultures are all negative (thank goodness). Matthew played tennis on the Wii and brutally beat Jill the OT lady and it made his face beet red. So the BMT doc said not to lower the steroids because it may be engraftment syndrome again. I tried to explain that playing the Wii can actually give you a red face. But alas, she wants to wait to see it for herself before ordering another steroid taper. I think I need to have Matthew play HER in the Wii so we can see what happens to her face! With the switch from the PCA to oral pain meds, I can definitely see signs of preparing us for our great escape to “wherever”.
I say wherever because we aren’t sure where we will be released to. Since my stay here in the hospital, I have heard not good reports about BMT kids going to the Ronald McDonald House. I’ve heard that there are lots of kids (some sick) running around hacking and slobbering. I’ve heard there is a long list for the suites that BMT families need for germ control. And I’ve heard there are some safety issues. In particular, one Mom had her wallet stolen and the other side of the RMH has some suspicious drug dealing going on. So, Greg is working on finding us a place to “live” for awhile. The hospital has some good discounts available with apartment complexes in town, so he is going to be researching that option as well as extended stay hotel type places. Please say a prayer that Greg can find us a safe, clean, germ free yet affordable place to stay. Our #1 priority is to keep Matthew free of germs and bacteria. We have come so far but we have to remember that his immune system is still very much compromised and is very much like a newborn baby. Wherever we end up, Greg will have to go to the place and do a SUPER intense cleaning session before we can bring Matthew “home”. If there is anyone in Cincy that has any skills in that area that would like to help, that would be great! Just let me know!
As, I’m typing this, Matthew is getting a massage. It brings such joy to my heart to sit here and watch him getting this wonderful therapy. He always feels so good after she leaves. His poor body has been thru a war and it makes him feel so good when she massages him! Yeah!!
Well, I think that’s it for now. I think the rumblings of release “signs” is helping morale. We are seeing a wee little pin light of hope at the end of this long hospital stay tunnel. We still have miles to go but this is a huge step!
Keep praying…
Love,
The Dynamic Duo
PS We've added some more locations to our prayer chain list. If I've missed any place, leave us a guestbook message and we'll add you to our list!
*****************************************************
9:58 am
Day 25
Morning Update:
We are eeking our way towards freedom folks. Today they stopped the IV pain meds and the PCA. He has been switched to oral pain medications. One of the two is used to aid in withdrawal from the Dilaudid and pain. The second is purely a pain medication. Rumor has it from Moms in the know, this is a huge step towards being released from the hospital.
With his appetite and sense of taste coming back (somewhat), I’m going to ask about tapering him off of the TPN. We’ll see what they say in rounds. Yesterday they stopped one of the antibiotics and hopefully today they’ll stop the 2nd. They also should be doing another taper of the large dose of steroids. All good things!
On a frustrating note, his ANC dropped way down today. I’m not sure if they will be doing some more GCSF or not. I have lots of questions today for rounds.
He is doing some PT in the room today since his ANC is so low. They are bowling on the Wii. I’m seeing lots of smiles and my heart is singing!!
Matthew received a gift today from a lovely young lady in Australia! Thank you Karen Melissa! He loves the game!
Today’s Counts:
Hemoglobin: 12.7 (beautiful)
Platelets: 22,000 (these went up on their own!)
WBC: 2,100
ANC: 380 (UGH)
I’ll update more later after rounds…….
Keep praying…
Love,
The Dynamic Duo
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Sunday, February 17, 2008 9:02 pm
Day 24
Night Update:
The BP is going up again 151/92 and so is his sugar count. UGH. There is something about the night time and “issues”. They’ll be back in a ½ hour to recheck his BP…and so it begins….
Matthew finished his dinner, played a game on the laptop and is now zonkered again. He just gets completely worn out so easily. When I see him sleeping all day and night, wake for an hour or two and then look so exhausted again, it really points out just how much his poor body has been through.
Keep praying!
Love,
Nancy and Matthew AKA Rip Van Winkle
**************************************************
7:22 pm
Day 24
Evening Update:
Matthew slept most of the day today and I took a nap. It’s a dreary, drizzly, good for a nap, type of day. We played some Wii for awhile and watched a movie. I read and Matthew slept some more.
He ate a pretty decent lunch and a bit for dinner too. His BP’s have been a lot lower today, hopefully that will continue thru the night.
Not much else to report. It’s been a calm and sleepy kind of day!
Love,
The Dynamic Duo
***********************************************************
10:25 am
Day 24
Morning Update:
Another crazy night with Matthew’s BP and heart rate, so sleep wasn’t much of an option. His BP went up to 171/100 and finally the “under the tongue” med brought it down to a more acceptable level. This morning it is 159/86. According to the BMT docs the massive doses of steroids are probably the culprit. Even though we are weaning them somewhat there is a delayed BP effect.
His chemistries are a bit messed up today also. His Potassium is too high and his sodium is too low etc. They are going to stop the TPN until tonight to lower the Potassium and give him sodium via fluids………….Unfortunately giving him sodium may further increase the BP. It’s a crazy, vicious cycle we are in.
Matthew’s been asleep all morning and seems to have missed breakfast. Since they are stopping the TPN, we’ll really need to work on eating today.
Matthew’s platelets are low and they didn’t mention a transfusion nor did I remember to ask (fog brain won). So, I’ll have to go find out. His hemoglobin was great thanks to the two units of blood he received yesterday. Please remember to donate blood and platelets, there are a lot of people like Matthew that need your help. His ANC dropped again below 1000…bummer. I like that number in the 1000’s or 2000’s.
Today’s Counts:
Hemoglobin: 11.1
Plates: 18,000
WBC: 1,400
ANC: 800
I’m feeling pretty beat up. I’m exhausted after my 2nd night in a row with no sleep and my stupid back is really bothering me. But all in all, we are holding up ok.
The world of BMT is definitely a crazy roller coaster ride. Some days you feel like you are making progress taking 2 steps forward. The next day you feel like you just slid back a step. But as long as it’s 2 forward and 1 backwards then you are still creeping forward. It’s just hard to see sometimes. Focus on the prize, which is a cure. We have to deal with the issues along the way, but we have to keep our big picture focus……..the prize………the cure.
Keep praying. Today, for BP control, no headaches, wisdom for the doctors, increased strength for Matthew and good health for our bone marrow donor!
Love,
The Dynamic Duo
**********************************************
Saturday, February 16, 2008 4;45 pm
Day 23
Afternoon Update:
The docs decided to really fill Matthew’s tank today. They decided to transfuse 2 units of blood. His headache is gone now. I really think there’s a connection there.
Matthew’s BP shot up to 160/101. Yikes.
Matthew announced that his sense of taste seems to be eeking back some. He could taste his oral meds today…yippee …gotta love those tasty meds! I also think his appetite is increasing a bit. He ate most of his breakfast today which is a first. Plus he ate most of his lunch as well. We are on a roll!
We watched another inspirational movie today. It is called Freedom Writers with Hillary Swank. It’s a really good movie that we both recommend.
Well, I think that’s all the excitement for today. Keep praying. Each day I am seeing improvements. We have a long way to go still but at least we are heading in the right direction!
Love,
The Dynamic Duo
******************************************************
10:05 AM
Day 23
Announcement:
We have MORE cookbooks!!! Our 2nd order of cookbooks has arrived!
If you would like one you can get one by doing one of the following:
• Greg has a box of cookbooks available at our house
• Contact Sandy by email at teamnevergiveup@comcast.net.
* Deb Roos has 2 boxes at her house.
• Pick up at the St. Charles Parish Office.
• Pick up at any SCRIP sale at St. Charles
Thanks to the kindness of our friend Dave Tester from Georgia, 100 percent of your donation will go to help with Matthew’s medical expenses, anti-rejection medicines, other medicines and living expenses while we are here in Cincinnati.
Thank you from our entire family……..
********************************************************
Day 23
Morning Update:
We left home: 35 days ago
We checked into the BMT unit: 30 days ago
Matthew’s had his new cells for: 23 days
Wow, when you look at it that way it seems like a long time ago.
We had a bit of excitement last night around 3am. Matthew’s heart rate dropped below the “allowable low” which means the monitors go crazy, the nurse was checking BP more often, and Mom’s eyeballs were glued to the monitor the rest of the night. Then around 3:30 his BP flew up and they had to bring the Doc in to check things out. He ordered another dose of that wonder drug that goes under the tongue. So far this morning, his BP is normal and his heart rate is low but above the cutoff. No clue what that was all about. They will be doing an EKG just to check things out in the heart department.
He is really exhausted and his hemoglobin was low this morning so that isn’t helping the fatigue factor. His platelets held steady from yesterday, but his hemoglobin really dropped. He is also starting to get another headache, so they will be doing another blood transfusion today. Hopefully that will stop the headaches.
Matthew ordered a nice big breakfast today, I will be amazed if he eats it all! Maybe that is a sign that his appetite might be perking up. With all the steroids he is on, it is amazing that he’s not eating constantly. The chemo/radiation sure did a number on his taste buds. He cannot taste anything. He says it all tastes like cardboard. Yuck.
Matthew slept most of the day yesterday and so far is following suit. He woke up just long enough to order breakfast and then back to sleep.
Today’s Counts:
Hemoglobin: 8.4 (getting a transfusion)
Platelets: 21,000 (holding steady)
WBC: 1,600
ANC: 1,180
Keep praying!
Love,
The Dynamic Duo
Friday, February 15, 2008 6:28 PM ET
Day 22
Evening Update:
Matthew finally woke up so we could open his mail! He received some great cards and some cool packages today too!
From Poops, Scoots and Cream: a great box of goodies, some card games and a computer game with 30,000 games (no Sally that is not an exaggeration). Thanks guys we loved the singing CAR card
From Logan’s Class: a huge handmade card signed by Logan and all his friends! Thank you Mrs. Brickley’s Class!
From Mary B: MORE gushers……thanks!
Award for best Anonymous gift of the day: An autographed picture of Coach Tressel, the Ohio State Football Coach. He even had a wonderful message too….thank you to whoever clued Coach T in on Matthew’s journey!
Matthew’s BP went up again and he needed more Lasix today. All in all a good day here in Cincinnati! He also ate a bit more today than yesterday! Go Matthew go!
Love,
Nancy and Matthew
****************************************
2:28 PM
Day 22
Afternoon Update:
After our intense game of Scattergories that Matthew won, he went to sleep and hasn’t work up since. I think he is absolutely 100 percent worn out from yesterday’s PT/OT/Partying! That’s ok, sleep is good.
The sleep is allowing me to get a lot done today! So far, I’ve organized a stack of EOBs, called and argued my way out of 3 incorrect medical bills! Yes!! I’ve balanced 2 months of my personal check book, which by the way balanced to the penny! Hooray. And now I’m working on paying our household and medical bills. That should keep me busy a few more hours…sigh!
Keep praying!
Love,
Nancy and Sleeping Beauty
**************************************************
11:58 AM
Day 22
Late morning update:
Rounds went very well this morning. They are reducing his baseline Dilaudid drip but he will still have his PCA button to use as needed for pain. That is a good sign when they start to wean off the pain meds. They said they may consider doing the GCSF again if his white blood cell count continues to drop, however one BMT doc said the cells in his marrow looked very good and strong and his marrow is definitely producing cells. That is good news too! They are still watching his splotches to see how his body reacts with the decreased steroids. They are happy with his sugar levels on insulin. They will be watching how his O2 levels are to be sure we don’t need another chest x-ray. If he spikes another temp they will be doing imaging to be sure there’s nothing going on. All and all they are pleased with how Matthew is doing! Yeah!
Matthew’s napping again after a competitive game of Scattergories. He is pretty worn out from all the excitement yesterday.
Keep praying…..
Love,
The dynamic duo
***********************************************
9:12 AM
Day 22
Morning Update:
When I was in high school choir, every year Mr. Nicholas would prepare us for our big Christmas concert by working very hard with us on the Hallelujah Chorus. We would work section by section while the orchestra was working diligently on their part. Finally, the big night would arrive and the glorious strains of that beautiful song would fill the room. Of course my entire family would be sitting in row 2 making faces at me but I digress.
Anyhoo, today as I was in the parent lounge enjoying my morning DDP, Dr. F walked in (the heart always pauses when the doc approaches you). As she began to talk the strains of that beautiful song began to fill my brain. Hallelujah Chorus began to fill the room, well at least in my brain…….
Dr. F said “Matthew’s pathology report is finally back. His spinal fluid is perfectly normal and his marrow is perfectly healthy! No cancer cells in either!”
Yesterday, I hummed Kool and the Gang’s “Celebrate” all day, I think today I’ll be humming the “Hallelujah Chorus” all day!
Join me in a prayer of thanks! God listens, God gave us strength to survive yet another scare, God kept Greg safe as he travelled thru an ice storm to be with us, God sent Grandma, all Matthew’s Aunts and Nemo to care for the little ones, God sent us Angels to help, and God has brought hundreds of loving people into our lives to rally in prayer when times got tough. Thank you God for always being with us. Amen.
Matthew is still asleep, I think he is completely worn out from yesterday. His BP came back down to a normal range after that new med last night. His temp was normal this morning and so was his sugar. Unless he has a bleed, we can eek by on needing a transfusion today. I have a feeling Matthew will be resting a lot today!
Today’s Counts:
Hemoglobin: 13.3 (that appears to be a misreading)
Platelets: 21,000
WBC: 1,200
ANC: 950 (I wish that would stop sliding already)
Later,
The very happy and relieved Dynamic Duo
********************************************************
Thursday, February 14, 2008 9:46 PM
Day 21
Night Update:
Oh ya, there’s a health report for the day….we were having so much fun partying I forgot about the whole BMT thang…well not really but it was nice to say that!
Matthew really felt pretty ok today. He is weak and very tired but the head pain seemed better today. He ate a bit more today than the previous 4 days. Hooray. His high temp for the day was 100. His BP was running on the high side again today and his feet are very swollen. They added a new BP med tonight, hopefully that will help. New issues….sigh. They lowered his extra dose of steroids down another notch. We’ll be watching the splotches on his palms and soles of his feet to be sure it doesn’t flare.
All and all Matthew did well today. I’m pretty sure he’ll need at least one transfusion tomorrow, possibly both platelets and blood. We shall see what tomorrow will bring.
Final picture from today……
The birthday boy and his mama…….
Keep praying!
Love,
The on cloud 9 dynamic duo
****************************************************
4:47PM
Day 21
Afternoon Update:
Live from PARTY CENTRAL:
Holy Cow…There’s a party goin on right here, a celebration to last throughout the year….anyone know that song??
I tell you what, it has been a party since we woke up today!
Here’s mail delivery #1 for the day…….it took two to get it all delivered……..
The cafeteria sent a birthday cake….how cool is that…..
The award for the most hysterically appropriate gift goes to Kristen Schleter…….it’s a USED CAR BLUE BOOK!! And she made posters for our neighbors to sign, Ryan & Eric’s schoolmates, Northrop High School and the funniest is the staff from Buffalo Wild Wings all signed a poster LOL
Here’s the Neighbors poster…….
The Blades family sent us BOTH some DVD’s (gotta love those chick flicks). Matthew’s 1st Corvette arrived today …… from the Stants! Of course it’s a model car! LOL Aunt Jen and crew sent some DVD’s and yummy delights…..
Amy G sent a totally cool Big Ben t-shirt and hat and lots of munchies and an NFL Trivia Game….
Betsy and Jack from the heart of Steeler’s country couldn’t find Steelers lounging pants so she stocked him up with Steelers shirts and some comfy black lounging pants and cool Steelers watch an some hand cream lovelies for dear ole Mom…….Just to be sure we have all colors of Steeler’s hats in our wardrobe……..
And then the second mail delivery of the day brought a huge and I mean HUGE stack of birthday and Valentines Day cards for both of us. The staff is just amazed at the love that is flowing into this room for Matthew! He is such a deserving and special young man!
And then after all THAT partying, we headed downstairs for PT and OT….Matthew played some P-I-G and Beachball Volleyball. A new Cincy Children’s record was set today at 11:55 am…103 hits without dropping the ball…woo hoo
And then we played an intense game of bean bag toss and ring toss…Matthew beat us BADLY……..
After all that therapy, we headed back to the room and my exhausted Matthew slept for 2 hours.
Party time continued upon awaking from his nap……..with a Valentines surprise from Child Life….
And some balloons from our favorite Housekeeper…….
And some homemade cupcakes from Sally….
And some Ohio State gear from Mom, Greg, Brittany and Logan…
And some RELENTLESS lounging pants from Sally…..and someone getting a bit frustrated with my RELENTLESS picture taking….
And then our crazy staff came to visit, to wish Matthew a happy 16th and to SING Happy Birthday…how fun!!
And on Ohio State hat from our wonderful Cincy Staff…….
Whew, I think that’s it…but then again it’s only 4:57 PM!!
Thank you everyone for making Matthew’s 16th birthday absolutely the best!
Love,
Nancy and her birthday boy Matthew
********************************************************
Day 21
Morning Update:
Matthew is like a different person this morning. He is sitting up and he ate ¼ of a Belgian waffle! YEAH!! He is getting some Tylenol with Codeine for his headache but he has some color in his cheeks and he wants to do PT today! Hooray! The 2 units of blood yesterday really worked wonders for him.
Today is Matthew’s 16th birthday (in case you didn’t know that)! We also spent his 13th birthday inpatient at Riley Children’s after his 1st relapse. We have some plans to celebrate so we will make his day special no matter where we are! I can’t believe my Valentines baby is 16, where did the time go?
I still don’t have the official Pathology report. I hope we get it today! I am pretty sure it’s just a formality but what a birthday gift THAT would be!!
Happy Valentines Day everyone! Be sure to hug your sweetheart today!
Today’s Counts:
Hemoglobin: 10.9 (Thank you blood transfusion)
Plates: 24,000
WBC: 2,200
ANC: 1,360
Love,
Nancy and Matthew
Wednesday, February 13, 2008 4:00 PM ET
4 pm
Day 20
Afternoon Update:
We are ruling out issues. In addition to checking for cancer they are checking for a multitude of viruses, funguses and bacteria. So far the early results are looking good. We are still waiting on the Pathologist’s report which will be the ultimate YAHOO!
Today, the mail delivery folks have been to the room FOUR times today! It has been like Christmas here!
He has received some AWESOME gifts!!
Thank you Janice….can you see the #1 draft pic?? This is so great!
Can you tell he’s a Steelers fan?? Thank you Mary Ellen!
And then there’s the most adorable fuzzy panda bear from Andrea and Gil! Thank you both!
And how about this cool poster made with love by Sam & Rose (Logan and Brittany’s best buddies)………..and a wonderful St. Matthew pendant…. 
And then there are the adorable hand made cards from the kids from Precious Blood School!
Matthew is pretty much exhausted from opening all the mail and he’s been asleep for hours. He is getting 2 units of blood and we are trying some different approaches to pain management. He spiked another fever so they added a second antibiotic and did more blood cultures. I sure wish I knew what the culprit is.
Greg is still here and I’m sooooooooo very much enjoying our early Valentine’s Day! He will be heading home soon, unfortunately.
Love,
The Terrific Trio
********************************************
10:00 AM
Day 20
Morning Update:
Not in OUR house…NOT in OUR house….ain’t no cancer allowed in OUR house!!
The cytology report is not back (which is the officially reviewed by a Pathologist report) but they found 1 red and 1 white blood cell. The white blood cell appeared normal and one white cell could be from an infection of some sort. Three doctors said in their professional opinion this is NOT a relapse. We still have to wait for the Cyto report later today, but we are breathing easier! Praise the Lord!!
So, what is it? Well, there are many things they are looking at now that they know it’s not a relapse. Some of the possibilities mentioned were mucositis (like the mouth sores in his mouth and throat) in his sinus, a sinus infection or delayed side effects from the radiation. Those effects can appear 3 to 4 weeks after radiation. More to follow but we are all hugely relieved it is not a relapse. We’ll see what the plan is during rounds.
His pain level is still high and his back is sore from the tap and bone marrow aspirate. His appetite is zip and he is sleeping a lot.
Greg and I cuddled up on the chair bed last night. I slept like a rock for the first time in a long time. It felt good having my “rock” keeping us safe last night, I felt like for a night I could lay off all the troubles and responsibilities.
Today’s Counts:
Hemoglobin: 7.7 (may need another blood transfusion)
Plates: 44,000
WBC: 2,400
ANC: 2,280
Thank you all SO much for all the prayers. The number of prayer chains that started within minutes of me putting out our fear was overwhelming.
Keep praying that we can figure out what is causing the head pain, that cancer stays way far away from OUR house and that Matthew begins to regain some of his strength.
Also, a big thank you to all the parents from ALL-kids who rallied behind us last night. I can’t seem to post online from here so if someone could let the list know that things are looking up I’d sure appreciate it!
Love,
The terrific trio
PS Don't forget.....tomorrow is Matthew's 16th birthday!! What a celebration we will have!
**************************************************************
Tuesday, February 12, 2008 8:30 PM
Day 19
Night Update:
We jut got back from the OR. Matthew’s procedures went smoothly. Dr. H said “visually the fluid looked clear” but we won’t know until probably tomorrow since it is so late. We would have a “cell count” tonight but if there are white blood cells there we wouldn’t know if they were Leukemia until the Cytology report was done by the Pathologist. So, unless the cell count was absolutely clear (which would be the best possible news) we won’t know until tomorrow. Another long sleepless night for us.
Matthew is still in quite a bit of pain but seems more alert than early today. I’m so glad Greg is here with us. I’m a nervous wreck. I did however find a cappuccino machine in the surgery waiting room. I gulped down 2 cappuccinos. Of course that was all I had all day so I’m buzzing a bit now!
Grandma is with the little ones and carpools are all in line. (Thank you Grandma, Sandy and Sarah)
Thank you all for the prayers….we can feel them coming from all over the world.
Please pray for cancer free spinal fluid and bone marrow……and for pain relief for Matthew.
Love,
The Terrific Trio (thank you Sally)
*************************************************
5:30 PM
Day 19
Evening Update:
Blood and Platelets are now transfused and we are just waiting for a spot to open up in the OR. Temp is still high and he’s pretty out of it.
Greg arrived safe and sound! I’m so glad he’s here.
Keep praying..
Love,
Nancy
******************************************
Day 19
Early Afternoon:
Platelets are in and now in a “safer” range. They will transfuse blood next. His temp is still high and he’s pretty much been asleep for the last few hours. I keep changing the wet clothe on this forehead every 10 minutes or so. He is drying them out pretty fast.
Greg is on his way and if the roads are ok, he should be here in a 1 ½ hours. I sure will be glad to have him here.
I’m not sure when we will take him for the spinal tap and bone marrow aspiration. I guess we’ll know more about our “slot” after the blood transfusion is done.
Keep praying….
Love,
Nancy
*************************************************
11:10 AM
Day 19
Late Morning Update:
Matthew feels really bad right now. He is running a fever now, of course we had just peeled off all the antibiotics. So, now I’m sure we’ll be doing cultures and restarting the antibiotics. He is having diarrhea and is extremely weak. He can barely walk to the bathroom. He is scared as am I.
His hemoglobin is too low for anesthesia’s liking and his platelets are too low for the BMT doc’s liking. So before the procedures will be done, they have to give him platelets and red blood cell transfusions. The BMT doc was mumbling something about not wanted to overload his kidneys since we were having issues yesterday and his numbers are starting to climb.
He looks about the worst he’s looked in a few weeks. Please pray that they figure out what is going on and that the cancer is not back.
Greg is working on arrangements for the little ones so he can drive over here to be with us. Please pray he arrives safely as we are in the middle of a freakin ice storm.
Please pray that my little ones aren’t too scared. If you see them today, be sure to give them a smile and/or a hug.
Please pray that I can remain calm today…my heart is racing, my head is pounding and I’m totally screwing up another pair of contacts.
Deep breathes………
Today’s Counts:
Hemoglobin: 7
Plates: 19,000
WBC: 2,000
ANC: 1,680
Love,
Nervous Nancy
*****************************************
9:10 AM
Day 19
Morning Update:
Matthew is having severe headaches. We were up most of the night. The BMT doctors have ordered a spinal tap and bone marrow aspirate to rule out……..well…….just to be sure he’s ok. I don't know what time yet or when we'll have results.
Please pray with all your might.
Love,
Nancy
Monday, February 11, 2008 3:03 PM ET
Day 18
Early Afternoon Update:
Rounds went well. They removed another antibiotic today! And they lowered his “extra-dose” of steroids from 3 to 2. We’ll see what happens with the splotches on his palms and now soles of his feet. They still haven’t confirmed it is GVHD so that is why they are slowly weaning him from the steroids. GVHD is Graft Vs. Host Disease. To make this easy, let’s just say that it is the the donor cells and Matthew's cells in a battle. GVHD disease can present in varying degrees of nastiness from rashes on skin, to rashes in the gut, severe diarrhea etc. and it can vary from being a nuisance to being fatal. In our case, a little GVHD would be ok because God forbid if there were any straggling Leukemia cells left behind they would be seen as foreign also and would be attacked and hopefully killed. So, a small controlled amount of GVHD is ok. We just have to pray that it doesn’t get out of control.
Matthew did some PT and OT both in the Teen Therapy Gym. He did such a great job. He even “wheeled” himself to and from therapy! He is super human I tell you! He was thoroughly beat afterwards. He ate ½ a fish sandwich (YEAH) and then zonked out.
Here’s superman wheeling himself down the hall (IV in tow)………
OT Jill, finally beat Matthew in something………..pure joy!!!
If Matthew sits….we all sit….
PT…working on the leg muscles…….
And the arm muscles…………. 64 consecutive hits!! PT Cynthia says we are very goal driven…I don’t know what she is talking about…..do you??
And the award for the best decorated envelope………..goes to Stacey from Las Vegas…..must be all the glittering lights out there!
Matthew is still zonkered. I bet he’ll sleep for hours after all the morning excitement. They are starting another IVIG infusion to help boost his immune system, hopefully we’ll have no reactions like we have had in the past.
Well, I think that’s it…I’m off to work on a month end diddy whilst sleeping beauty is slumbering.
Love
Nancy the mere mortal mom and Matthew the superhuman super hero
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11:03 AM
Day 18
Morning Update:
We had a pretty good night last night. The calmest one we’ve had in weeks actually! Today they restarted the Lasix since his urine output has dropped quite a bit. He continues to have a daily severe headache, Nurse Deanna and I are starting to think it’s from the Cyclosporin IV. Dr. F said they might look into sinus CT if they continue. The brain CT from the other day wouldn’t not have shown if it were sinus. His BP was a bit on the high side this morning, but the Lasix will hopefully resolve that issue. The flushing continues but it’s definitely better and more intermittent. The splotches on the palms are still there but no worse. Matthew’s lips are peeling quite badly over the past few days, also a normal process. The cells of the skin slough off as they are fast growing cells and the radiation/chemo killed them. Today, his lips are looking soft and healthy. The body and its ability to heal and regenerate is an amazing thing to watch and experience first hand. I have seen his body beaten down to almost nothing and I am seeing his daily healing.
Matthew didn’t make his walk yesterday, he was just too weak. Today, he asked to go back to the Teen therapy room though and he asked to be put on the Wii list! Those are all good signs.
This morning the mail guy brought a huge number of really big boxes to Matthew’s room. You can sure tell it’s his birthday week! The mail guy said “this is only the weekend mail, I’m sure I’ll be back!”
Matthew received an official University of St. Francis hat and pictures of the Nursing students that have adopted Matthew! It was great to see them!
Here’s the mail…….
Today’s award for the “Coolest and most unique gift” goes to the Solaro-Geraghty family! Can you guess what these are????
Matthew also received a totally cool box stuffed full of lots of delicious and fun goodies from our EBM family. I have never seen Lego Blocks Fruit Snacks before! Matthew’s eyes lit up when he saw the paint by numbers! And we are both excited to play Scene It and Deal or No deal! Thanks everyone!
He still has one more big box to open but opening the first few really wore him out. So, he’s taking a little nap before continuing. He really gets worn out fast.
We haven’t had rounds yet so I’ll update more later.
Today’s Counts:
Hemoglobin: 12.5 (where in the world did those come from)
Platelets: 22,000 (thanks to the plate transfusion yesterday)
WBC: 1,800 (still dropping since stopping the GCSF)
ANC: 1,660
Thanks everyone for thinking of Matthew and for all the prayers.
Love
The Dynamic Duo
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Sunday, February 10, 2008 1:43 PM
Day 17
Afternoon Update:
The afternoon seems to be going better than this morning. Matthew made a list of things he wanted to accomplish today. (He sounds a bit like me). He’s clicking them off and has 2 more to do. His big task of the day is to take a walk down the hallway. We’ll see if he can do it!
We decided today was the day we’d wear our Purdue shirts that Ms. Roos brought us back from Purdue. It was tough but we did it. Of course we chose today because today we watched the IU vs OSU game (IU won!! Yes!!)
Here’s the game……..
Here’s an IU fan and an OSU fan forced to wear a PU shirt……..
Love,
Nancy (Go IU) and Matthew (So sorry OSU)
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11:43 AM
Day 17
Late Morning Update:
Rounds went well. They are stopping 2 more drugs today (Hooray) and he needs another platelet transfusion. We just need for the bone pain to stop, the throat to heal and for him to start to gain some strength. His BP is good, he is running low grade temps or normal temps. He still red splotches on his palms and the flushing of the face comes and goes. Overall, he is doing well. It is always a relief to hear the experts say that. Matthew is sleeping a lot and hopefully healing at the same time.
Keep praying!!
Love,
Nancy and Matthew
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Day 17
Morning Update:
Everyone join me….sing or hum along……..I swear you’ll hear this song in your brain the rest of the day!
I was blue, just as blue as I could be
Evry day was a cloudy day for me
Then good luck came a-knocking at my door
Skies were gray but theyre not gray anymore
Blue skies
Smiling at me
Nothing but blue skies
Do I see
Bluebirds
Singing a song
Nothing but bluebirds
All day long
Never saw the sun shining so bright
Never saw things going so right
Noticing the days hurrying by
When youre in love, my how they fly
Blue days
All of them gone
Nothing but blue skies
From now on
I should care if the wind blows east or west
I should fret if the worst looks like the best
I should mind if they say it cant be true
I should smile, thats exactly what I do
Last night was pretty much the same, low O2, sugars went up but came back down nicely with an insulin adjustment, PCA button for pain was used regularily.
Matthew is trying to eat some jelly bread but his eggs got cold and they have to be reordered. I have a lot to learn about this BMT low bacteria diet. He has to eat his food within 30 minutes to avoid the growth of bacteria. That’s just ONE of the many rules we need to learn and follow. SIGH.
Today’s Counts:
Hemoglobin: 10
Plates: 17,000
WBC: 3,600
ANC: 3,190
He will probably need a platelet transfusion today and his hemoglobin is still hanging in there. The WBC/ANC dropped a bit more but not as drastic as yesterday. The BMT doc says they may continue to drop since we’ve stopped the GCSF but should stabilize in a new range. That’s the plan anyways!
We haven’t had rounds yet but I don’t *think* there’s anything drastic going on.
I really miss my kiddos and Greg, but they seem to be doing just fine on the home front. Brittany and Logan had their friends Sam and Rose over for a sleepover last night. Fun was had by all.
Later…….
Nancy and Matthew
Saturday February 9, 2008 4:49 PM ET
DAY 16
Late Afternoon Update:
Matthew has been asleep most of the day. When he is awake he is in pain. So, I vote for sleeping. His sugar levels have been under 190 all day so that is much improved. He is still having some dizzy spells (when awake that is), and that symptom has everyone a bit puzzled.
Coach Dan, believe it or not every thing has its own tone or type of beep. We know now which is which! The other day though the room telephone rang (normally my cell is the phone of choice) and we both were completely stumped!
Keep praying for all these side effects to ease up, for the pain to start to go away, for his donor cells to firmly engraft and STAY that way.
Love,
The somewhat weary but ever strong Never Give Up team
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2:49 PM
Day 16
Our Network Wall continues to grow!
Our St. Charles friends……….
Our Bishop Dwenger H.S. friends…….
All our other friends………
Thanks guys!!!
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12:49 PM
Day 16
Announcement From our friend Julie Workman:
I just wanted to let you know that I'm having a Mass said for Matthew at 4:00 on February 23rd at St. Peters. It will be followed by a mini holy hour, so if people want to stay and pray for Matthew they are more than welcome. If you'd like to post this on his caringbridge site you can let people know that EVERYONE is welcome. The address of St. Pete's is 518 E. DeWald St. In case people are intimidated by the location, we have never had a safety issue there. Also, there is plenty of parking in the parking lot across the street from the front doors of the church. They might want to get there a little early because that Mass is normally pretty full.
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10:49 AM
Day 16
Morning Update:
I don’t think Matthew is having a whole lot of fun right now. They finally regulated his sugar level enough to stop the hourly finger pricks. We are now checking every 3 hours. Between that and all the meds he has pumping in which of course cause the pump to beep constantly and his monitors beeping every time his oxygen levels drop below 90 and the beep from the PCA that Matthew pushes when in pain, it is a virtual plethora of BEEPS.
Matthew and I finally figured out a pretty slick “I need help system”. With the oxygen running it gets noisy plus he can’t talk very loud since his throat is so sore. Add to that the fact that my chair bed is directly under this Hepa air control vent thingie. It constantly blows clean air noisily over my head all night. Add to those things the fact that I’m not sleeping well and when I finally do drift off I crash, I just can’t hear him. So, we devised a plan. If Matthew calls my name and I can’t hear him, he calls me on the cell phone!! Now the funniest thing about this is that our heads are maybe 10 ft apart….hey it works.
Matthew did implement “code cell phone” last night and our well devised plan worked like a charm. I work up and I was able to help him to the bathroom successfully. After I safely returned him to his bed, I decided to run to the bathroom (miles away). Upon my return, I walked into a room full of people. I guess Matthew’s heart rate was looking like a flat line and I almost missed them calling a Code Blue according to Matthew. The humorous thing about that was that everyone was asking if he was ok and he was sitting up saying “I’m here!” Never ever a dull moment in room 507.
Matthew’s leg pain is really bad this morning. It is an 8 out of 10 on the pain scale. I rubbed and rubbed for 45 minutes and then we applied some heat packs. We are hitting the PCA button quite frequently to try to get him some pain relief. He is sleeping now.
Counts are sliding a bit since we stopped the GCSF, so we’ll be watching to see where the settle in at since we stopped the “artificial cell stimulator infusion”.
Today’s Counts:
Hemoglobin: 10.5
Plates: 36,000 (thanks to the platelet transfusion)
WBC: 3,900
ANC: 3,390
Keep praying….
Later,
Nancy and Matthew
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Friday, February 8, 2008 6:14 PM
Day 15
Evening Update:
Matthew went to the PT room!! Yeah!! He did so great. It’s a nice room with lots of PT equipment. Since he’s not quite ready to bench press 200 lbs yet, we decided to start slowly by playing a nice competitive game of RING TOSS. Matthew beat our butts. I kid you not, he completely annihilated us!
Here he comes………everybody ready??
Lookin good………..
All comfy, just me and my pole and my 18 or so medicines……
Mom and Matthew…I think Matthew looks tired….
Are those some BIG balls or what?? Matthew’s resting…..
Look, he’s even standing to play…….amazing huh??
Crap, I missed……Matthew doesn’t look very surprised at that…
Matthew’s had a big day today, hopefully he’ll sleep well after all the excitement of the day.
Keep praying…….
Love,
Nancy and Matthew
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12:35 pm
Day 15
Afternoon Update:
CT scan was normal, praise the Lord. They think today’s issues (double vision and dizziness) are from high sugar levels. His are over 400 and so now we are starting an insulin drip. He’ll need to have his sugar checked around the clock now too. They are feeling pretty confidant that is the culprit. They also decided to continue the extra dose of steroids but a lesser dose. The splotches on his palms are looking suspiciously like GVHD so they decided to taper down and see what happens. Of course, steroids can cause high sugar levels. It’s a crazy circle we are living in.
This Mom is hugely relieved. My mind immediately went where it really shouldn’t go….can’t help it…..I’m just very happy and relieved.
Later….
Nancy, the slightly neurotic feeling Mama and Matthew, my superhero
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Day 15
Early Afternoon Update:
We just got back from a CT scan of Matthew’s brain, just to be cautious since he is having neurological symptoms. The BMT doc has also mentioned downward trending sodium levels and the possibility of seizures. So I hope and pray this was just to “rule” out stuff and just being careful.
The wheelchair ride was very impressive. They cleared the hallways, made people get off of the elevator and practically ran to Radiology. They are certainly taking every precaution. Matthew was completely worn out after that adventure and immediately fell asleep upon his return to his bed. He has absolutely no energy or stamina at all.
I have a headache again.
Later…..
Nancy and Matthew
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11:00 AM
Day 15
Morning Update:
Last night was on the “long” side. Matthew needed blow by oxygen since his o2 sats kept dropping into the low 90’s and high 80’s. Then around 4am Matthew’s throat pain sky rocketed and the PCA wasn’t cutting it. Pain management team was called and he was given a bolus of Dilaudid.
This morning so far Matthew’s been very dizzy and had some double vision (gulp). His legs are very achy and weak. We may have to postpone teen room if he’s dizzy still. We’ll see.
Today’s Counts:
Hemoglobin: 10.5
Plates: 25,000
WBC: 4,400
ANC: 4,180
Later…..
N & M
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Thursday Feb 7, 2008 11:OO PM
Day 14
Evening Update,
Well, let’s see….Matthew’s red face issue seems better and his temps have been in the 99 range all day. He has some red rash type things on the palms of his hands which we are “watching”. The extra steroids for the acute hyper engraftment syndrome are done today, so we’ll have to see what happens with the palms and red face tomorrow.
Matthew did some OT today, which included sitting up in bed and playing a game of Scattergories with Jill the OT therapist and dear ole Mom. Matthew stomped our butts big time. After the game, he was completely exhausted and he took an hour nap. He also got online today to read all the joyful guestbook messages!! So, today has been a big day in the vertical position! That was so great to see.
Exciting news: As soon as Matthew feels up to it, the OT lady and I will be able to wheel Matthew to the “teen room”. It is a completely sterilized private room with a pool table and a juke box and some other stuff. Hooray, to be able to get Matthew out of his room for an hour sounds like a vacation to me! Hopefully, he’ll feel up to it tomorrow. He will be in a super heavy duty mask to protect him. His immune system is literally like a newborn baby’s immune system, so we have to protect him from any and all germs. A virus could be a real setback for him at this point.
Matthew is very weak right now but at the same time, the strongest person I know. He is truly amazing!
Sally came for her weekly visit today. She brought me all the salad fixings for a great salad. I have been really craving a salad so she fixed me up really good!!
We received a few more pictures in the mail today! Keep em coming!!
I think that’s it for now……
Keep praying……
Love,
The newly energized dynamic duo
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11:31 AM
Day 14
Morning Update:
We are still basking in the glow of last night’s great news!
Matthew still feels pretty crummy but I think I can safely say he feels a wee bit better than yesterday. He is still running fevers, cultures are done daily and so far so good…no bacteria!
Rounds went well. The plan is to see how his ANC looks tomorrow and most likely stop the GCSF. Then we’ll see what his counts do without the artificial stimulation of the GCSF. He will need another platelet transfusion today since his plates were low. The flaming red in his face and upper body seems slightly better today and the rash on his palms is gone for now. He continues to get the additional steroid for today, and then we drop that one and see what happens.
There are still a lot of issues to resolve and things to watch for. Our big challenge now is to watch for and control anti-rejection. Just like in a kidney transplant, the body recognized the donor cells as a foreign entity and may try to reject them. So, the BMT docs are watching and trying to control this as engraftment is completed. Our next big step towards our cure.
Matthew mouth sores under his tongue are feeling better but the ones in his throat still bother him and today he has pain in his legs which is probably due to engraftment. He did well with the lower baseline of Dilaudid in the daytime and used his PCA button as needed.
Oh, and the other good news….I am now the proud owner of an egg crate mattress thingie. It was amazing how comfy it made this dumb chair bed. I actually awoke without that horrible back pain! Dang I wish I would have known about that option a few weeks ago!
Things are lookin up folks!
Today's Counts:
Hemoglobin: 11.3
Plates: 14,000
WBC: 3,200
ANC: 2,720 (YAHOO)
Keep praying…….
Love,
The dynamic and still celebrating Duo
PS ONE MORE WEEK UNTIL MATTHEW'S 16th BIRTHDAY!!!
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Wednesday, February 6, 2008 7:51 PM
Day 13
Night Update #2:
(see below for our GREAT news!!)
100 Percent Donor cell means …..that the donor cells are growing not Matthew’s unhealthy cancer producing cells! This is everything we hope for when you go to transplant. We want to NEVER EVER see Matthew’s cells again. In 50 years if they were to look at Matthew’s blood we would want to see DONOR cells!
Hooray!!!!!!
********************************************************
7:21PM
Day 13
Night Update:
Boy, do I have great news! I’m sure there will be a collective cheer from all over the world in just a few seconds……
Matthew’s Fish test results are back.
Matthew is 100 percent DONOR cells!!!!
I just couldn’t believe my ears..I promptly burst into tears when the doctor told me…I grabbed her and hugged her! We both went back to Matthew’s room and our dear nurse Susan saw me crying and said “is everything ok?” and we both shouted “he’s 100 percent donor”. She jumped up and we hugged. It was really emotional. We told Matthew the good news and he said “Is that why I feel so bad?” Poor kid….both the doctor and I tried to explain the process and how his donor cells coming in so strong and so fast is freaking his body out a bit.
This is such great news! We have a long hard road to go but this is monumental! This is another huge step towards a cure!
Please join me in a prayer of thanks!
Love,
Nancy the just about to burst Mom and her wonderfully strong son Matthew
**************************************************
5:21PM
Day 13
Evening Update:
A day of rest and a day of catch up.
Matthew has been asleep most of the day. I think his body and brain both said “enough”. I finally got him up a bit ago to get changed, cleaned up and back into a clean bed. That was exhausting in and of itself. He hasn’t really eaten very much today but that’s ok. He’s on TPN so he’s getting all he needs. The rash continues to be an issue. Today the BMT doc said she still thinks the face and trunk are the Acute Hyper Engraftment Syndrome but the parts on his hands might be the start of Graft vs. Host Disease. I’ll go into that more later if and when it is confirmed.
Since, Matthew was sleeping most of the day…I was able to jump into a bit a work things that have been in need of my attention. And I was able to start our personal taxes. Holy cow, having a sick child and tax season is a definite bummer.
We received some great cards and a picture to add to our wall today! We also received a great care package from the Young Family. Deanna, I’m so anxious to start reading the Rosary/Mysteries book you sent me…thank you very much.
Sister Genevieve, I remembered to pray the prayer (Ash Wednesday) from the book you sent me. It will be perfect for me during Lent. Thank you!
Keep praying….for Matthew to get over this hump, for the fish report to show donor cells are what are spewing forth, for no infections and for strength for us both. There are so many sick children on this floor and opening up to some of the parents is bringing me close to a new level of pain. Knowing I’ll need to be strong and comforting for one Mom in particular is a challenge I’ll need help with. Please pray.
Thank you all for being here with us….
With love and hope,
Nancy and Matthew
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11:51 AM
Day 13
Late Morning Update:
Big picture……everything is going well. They should get the fish test results back. Hopefully that will show strong healthy donor cells!
Matthew’s temp spiked again so they are running more blood cultures to rule out bacterial infection. They also changed that to daily cultures to be on the safe side.
The red stuff continues to spread to his arms, back, tummy and even the palms of his hands. They still say it’s just his rapid engraftment. Today I asked why it took so long for his counts to come back in December after HD-ARAC and now after all this hard chemo and radiation how his counts could start coming back so much sooner. An amazing answer was given that very much relieved my mind. Back in December when we wiped him out, his own body had to start producing again. This time we introduced the donor cells who have never been touched by chemo or radiation. These (hopefully all signs are pointing this way) cells that are growing by leaps and bounds are the donor’s cells!
His o2 sats continue to be an issue. They are running in the high 80s and low 90s. They are supposed to be at 100. So, they just did a chest x-ray to be cautious and if that is ok, they will start him on some Lasix again. During engraftment fluid retention can be an issue, fluid can cause breathing problems too.
The good news is that we are all over his “issues” which seem to be popping up just to keep us on our toes.
Other good news, the pain level from the mouth/throat sores seems somewhat better today. I’ve asked for the Dilaudid base line dose to be lowered today, so we’ll see how he does with that. He’ll still have his PCA button to use as needed; just the amount being administered continuously will be lowered a bit.
More good news…… the MT (remember that acronym?) arrived today. MT=Massage Therapist in this case. Matthew had his first massage and he absolutely loved it. His headache went away and he was completely relaxed!
Keep praying!
Love,
The dynamic duo
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Day 13
Morning Update:
Well, the BP is good, the heart rate is more acceptable but the O2 sats are now low. It a case of travelling symptoms, designed to drive Mom nutso. The extremely red face issue has travelled to his back and stomach now. They are hoping the extra dose of steroids will calm things down in that department. Temp was 100 this morning. I can’t even tell you how the pain situation is today. When I ask, I get the “so-so hand motion”.
The good news is in the counts department! His WBC is 1,600 and is ANC is 1,500! Yipppeeee! Today at rounds I’ll find out when they plan to stop the GCSF.
Later…..
Love,
Nancy and Matthew
Tuesday, February 5, 2008 10:19 PM eT
Day 12
Night Update:
There is a certain beauty that can be found in sitting beside your child and watching him sleep. I was able to partake in the gift of that beauty several times today as Matthew slept. For hour increments at a time, he was able to get some rest. He is so tired. The Dilaudid seems to be giving him some relief thankfully. However, he is itching and the redness that was located on his face has now spread to his back. His temp is around 100 on Tylenol.
I am praying for a sleep filled night for my son and for a better tomorrow as well.
Love,
Nancy and Matthew
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4:49 PM
Day 12
Afternoon Update:
The BMT doctor was called in to check Matthew around 2pm. His face was bright fire engine red and his fever is still 101-102 range. She said it is Hyper Acute Engraftment Syndrome. Basically, his cells are coming in fast and furious and his body is saying “hey, what are all these foreign things doing in my marrow?” It is not related to Graft vs Host Disease which is more of a rejection issue than an engraftment issue. Confused yet?? Anyhoo, to hopefully help calm things down a bit, they are giving him another steroid dose for the next three days.
The Dilaudid seems to be working a bit better. He actually took some nice long naps today. I think he slept more during that nap than all night long last night. He is still feeling really crummy.
Today’s mail brought some far away places mail. Matthew received a card all the way from County Durham, England! Way cool. The stamp says “Royal Mail” on it! He always received a card from New Mexico, Buxton N. Carolina, a singing card from Georgia and a letter & picture from Texas. Quite a fun variety of mail! Thanks everyone! You make our day a whole lot brighter!
Today my dear friend Doreen came to town for a visit. She brought some food and DVD’s for us and also took care of our laundry. I just can’t say enough about my friends. Every day they astound me with their love….I’m a very lucky lady.
Well, Matthew is awake and wants to watch a movie……so it’s cuddle time for us!
Love,
Nancy & Matthew
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11:45 AM
Day 12
Late Morning Update:
Rounds…..hmmmm……lots of stuff being discussed today. The summary is that all organs are doing great. Pain management team is attempting to ease the pain and no sleep situation. It appears Matthew may be engrafting. Apparently there is something called Engraftment Syndrome and the BMT doctor suspects this may be the case. It includes fever and rash. Matthew’s face is really inflamed looking and he’s definitely running a fever. If this continues then they will (guess what?) have to add an additional drug (another steroid). As normal I started to read up on this syndrome and wasn’t very excited about what I read. So, I’m going to hope this is not what he has.
The other outcome of today’s discussion is that they will be drawing blood today to send to the lab to run a test called a “fish” test (Fluorescence In Situ Hybridization). This is a test that I haven’t fully researched yet so my technical understanding isn’t good yet, but my big picture understanding is that this test will look at the chromosomes of the cells that Matthew’s marrow is producing. Hopefully they are donor and healthy cells. The test takes at least a day so we may not know anything until Thursday.
Now would be a good time to step up the prayers….I so badly want for Matthew to start feeling better. He’s had such a long road on this journey he’s on. This particular stretch of the road has been bumpier than most. He is strong and determined to beat this. I am with him every step, as is God and all of his Angels.
Matthew’s fever just broke so I’m off to help him get cleaned up.
Keep praying……
Love,
N & M
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10:15 AM
Day 12
Morning Update:
A long hard night in 507…… I think this has to be the making of a county song….
Matthew feels really pretty awful. He cannot sleep even with the new sleeping medicine they gave him. The pain team thinks that is because of the pain. He feels very sore and achy all over, we think that is from the GCSF and engraftment. In the past Matthew has always had bone and back pain from GCSF and when new cells begin to spew from his marrow. And to top it all off, he spiked a fever at 2am, so they had to draw blood cultures and start another antibiotic. I think that’s med #20 but I’m afraid I’ve lost count. His temp is 102 right now and he just took Tylenol. I hope that will bring his temp down so he’s more comfortable. Please pray that this is NOT a bacterial infection. Matthew’s heart rate which is normally in the low 60’s has been running in the 140-160’s all night. They tell me its pain and fever. All I know is every time that stupid monitor beeps I have to take a deep breath and try not to over-analyze the whole situation. He is exhausted, I’m pretty darn close and my back decided to enter the “snit-zone” again last night.
Ok, that was the bad news of the day. Now let’s focus on the good news!
They are switching his pain meds from Morphine to Dilaudid in an attempt to better control his pain. That’s good news #1.
Now for the really good news…….drum roll please……..are you ready?????
His ANC is……..630 today! And his WBC is 700! This is really good news. Hopefully, these white blood cells are putting on their armor and ready to start healing the mouth and throat sores……and hopefully they are going to attack whatever might be causing his high temps.
We haven’t had rounds yet, but I think that I’m really excited even without the official nod from the team……looks like Matthew is growing some cells.
Today’s Counts:
Hemoglobin: 12.4
Platelets: 30,000 (thanks to yesterday’s transfusion)
WBC: 700 (grow cells grow)
ANC: 630 (boy do we need this)
Keep praying for Matthew to feel better, for no bacteria growth in his cultures and for new strong healthy 100 percent donor cells to be growing in Matthew’s marrow.
I’ll update after rounds………
Love,
The exhausted, fever filled, pain engulfed, back in a snit, still somewhat dynamic duo
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Monday, February 4, 2008 5:55 PM
Day 11
Evening Update:
Matthew has a red globber thingie on his eyeball. There is a technical term but I can’t remember. It’s from low platelets and probably from all the vomiting he's done the past few weeks. So, they are going to give him some platelets tonight. We are premedicating right now. He’s also sleeping for a bit thankfully.
He did sit up for awhile and read the guestbook and all the crazy things I’ve said about him on the site. He’s enjoying the messages and jokes. That pretty much exhausted him so that was the big event for the afternoon AFTER mail call of course.
He received a great care package from his pal Danny and family and I received a box of bills and insurance EOB’s from Greg. Hummpppfffffffff. Danny’s younger brother, Nate, and his class all made handmade smiley cards. They are great!! We also received more pictures for our Network Wall.
Here some more of your smiling faces………
Today I had a surprise visit from my Cousin Ryan from Cleveland. We spent about an hour together in the parents lounge and he waved at Matthew from the window! Thanks Cuz for the great visit.
Love ya Cuz…….
Keep praying!
Love,
Nancy and sleeping beauty
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11:55 AM
Day 11
Late Morning Update:
The pain management team came by a bit ago. We are going to stay with the morphine for now, with Benadryl for itching and we are adding a new medicine that will hopefully help him get more sleep at night. It has both sleep inducing and pain control properties but is not so strong that is will make him sleepy during the day. I think that makes it his 19th medicine….sigh.
Grand Rounds went well. They say it sure looks like the start of engraftment. I don’t care what anyone says I’m getting excited!! His major organs all look great. His kidney function is back to normal. The mucositis pain is the issue of the day but we are working on pain control and hopefully those wee little bit of white cells can go help heal too.
Matthew received a totally fun, extremely awesome, way cool gift today. He was so excited and I was too! They are even playing the BENGALS, how appropriate is that? We don’t however have any idea who this great gift is from and the suspense is killing us. We have our suspicions but we aren’t sure. Will the real gift sender please step forward???? Thank you!!
Here it is….
Keep praying!
Love,
Nancy and Matthew
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9:15 AM
Morning Update:
Day 11
After the thrill and excitement of the game wore off, Matthew drifted off while I watched House. Matthew hit his pain button quite a few times and around 2am, Nurse Susan called the pain team. They gave him a bolus of Morphine in addition to what he already had on board. Luckily, that allowed him to sleep for about 4 hours. I do believe that was the longest stretch of sleep that he’s had in weeks. He is not talking very much or very loudly since his throat is so raw with the sores. He is also starting to itch which is a side effect of Morphine. The pain team will visit today to figure out what needs to be changed.
But the good news of the day (now this is not official since I haven’t attended rounds yet this morning) is that Matthew’s WBC is 400 and his ANC is 180. I think in my “I’ve never been a BMT Mom before” opinion that Matthew’s new healthy donor cells may be engrafting!! Gosh, what a miracle in the making!
Today’s Counts:
Hemoglobin: 13.0
Platelets: 17,000
WBC: 400 (Yipppeeeeeeee)
ANC: 180 (Grow babies Grow)
I’ll update more after rounds!
Please pray for pain relief, healing of his poor mouth and throat, donor cells “ONLY” growth.
This is the day that Lord has made, let us rejoice and be glad……….
Love,
The Dynamic Duo
***************************************************
Sunday, February 3, 2008 10:15 PM
Day 10
Night Update:
GIANTS win!! Manning Brothers RULE!
Matthew and I really enjoyed the game…morphine and all!
Love
The excited Dynamic Duo
PS sorry Mr. Digan (giggle giggle)
***********************************************
3:35 PM
Day 10
Afternoon Update,
Matthew thinks I’m weird. He finds it odd that I’m taking pictures of our pictures. I told him it was because people email me wanting to be sure I got their pictures, so I figure it must be because they want to see their smiling supportive faces on the famous Network Wall, which has spread to 2…count em ….2 doors! So, weird or not…….here you all are…….
Some St. Charles friends……
Some Bishop Dwenger friends…….
More friends and family………
Aren’t you all divine???
Matthew feels pretty darn crummy. We are scraping bottom of the “teen” DVD’s in the Child Life room. Rumor has it there’s a place downstairs that will rent movies…I may have to brave the germs and go check it out tomorrow. They are closed on the weekends, because as we all know there are NO SICK CHILDREN at the Children’s Hospital on the WEEKENDS. That is such a pet peeve of mine….growl. I did find Patch Adams today and we both really enjoyed it. That man was a man after my own heart. I firmly believe laughter is the best medicine. Great movie!
BP was up again today. No rash and no temp! Pain is pretty bad still but he is sleeping at the moment. I’m typing as quietly as humanly possible.
Keep praying!
Love,
N & M
PS GO GIANTS
****************************************************
10:35 AM
Late Morning Update:
Day 10
Rounds went really well. We have a new plan for pain control. Hopefully that will help him sleep. The poor kid is completely exhausted. Overall, Dr. D said “he is doing very very well and he’s a strong kid”. I think I whole heartedly agree, how about you?
And for the really good news………now, I must caution that we should not get TOO excited because counts can fluctuate….but we might be eeeking towards engraftment! Matthew has an ANC of 160 today and WBC of 200!! Yipppee. Platelets were at an all time low for Matthew at 6,000. He had a nasty bloody nose a while ago, but got his platelet transfusion so hopefully all is stable there for the rest of today.
Today’s Counts:
Hemoglobin: 13.5
Platelets: 6,000
WBC: 200 (hooray)
ANC: 160 (Yippee)
So keep praying for cell growth and pain control!
Love,
The Dynamic Duo
*************************************************
10:35 AM Day 10
Morning Update:
It was a long hard night last night. Matthew just couldn’t sleep due to the pain. He would doze off and then ½ hour later the pain would wake him up. I couldn’t sleep because the heart monitor kept going off when his heart rate would drop. I finally drifted off around 3am and a horrible migraine woke me up. I don’t honestly know how Logan functions with his chronic migraines. So, I laid on this uncomfy chair bed feeling pretty sorry for our situation. I finally decided laying here feeling this way wasn’t helpful at all. So, I got up grabbed some Advil and headed to the parents lounge with my latest book. Well, I staggered around the corner and saw another Mom. She took one look at me and said “Migraine”??? I nodded and she said “sit here I’m a massage therapist”. A small gift from God that a massage therapist happened to be sitting in the parent’s lounge at the exact moment I staggered in! She did wonders with my headache. She said she could tell what side of my head it was on by feeling the knot in the left side of my back. She massaged, kneaded and rubbed for 15 minutes or so and I was bowing to her feet by the end! Greg, I think we need to look into this for poor Logan!!
Matthew’s mouth and throat is pretty raw and he is suffering. He did eat ½ of a tangerine (now that seems confusing to me but hey it worked for him). I’m going to discuss pain management at rounds and with the pain management team today. I’m hoping we can adjust something to help give him some relief. He is also not sleeping and he is completely exhausted. I think if we could get the pain under control that might help.
We are sorta kinda excited about the Super Bowl tonight. We are rooting for the Giants (sorry Mr. Digan). I want the Giants to win because it’s a “Mom thing”. I think it would be cool for Mrs. Manning to have her sons win consecutive Super Bowls. Matthew is rooting for the Giants, because he HATES (sorry Mr. Digan again) the Patriots! We are also looking forward to the commercials and ½ time. We are both going to miss Matthew’s famous dip today. Next year we’ll make a double batch!!!
I’ll update later after rounds!
Love,
The Dynamic Duo
Saturday, February 2, 2008 3:28 PM ET
Afternoon Update:
Day 9
Education Request of the Day – How it works by Mom
Today’s Question:
Maybe mom has mentioned this, but how long does this mucositis last?
Mom’s Answer:
The mouth sores can’t heal with the help of white blood cells. That is part of the white blood cells job. So, unfortunately, we’re pretty much stuck with pain control at this point until he engrafts and his body begins to produce those new healthy cells! Just another reason why we are doing the “grow cells grow” chant.
The PCA pump finally arrived and Matthew is all hooked up. We played Scattergories for awhile until the Morphine kicked in and he claimed he could no longer think…hmmmm the score was 18 to 22 he won. I think I need Morphine!
Later we watched a movie together all cuddled up under the EEEWWWWWW Steelers blanket. We both enjoyed our cuddle time and the movie wasn’t bad either.
Matthew’s pretty tired and has some major dark circles today to prove it. The mouth and throat pain is not a whole lot of fun but he never complains. BP seems to have calmed down with the change in meds. I counted this morning in rounds and Matthew is on 18 different meds. Most are more than once a day. There seems to be a drug or two running at all times. It can be rather overwhelming at times. I am pretty caught up gluing pictures onto poster boards. I have a few that need more pics so I haven’t hung them all yet.
Keep praying. We need white blood cells…grow cells grow. Also we need pain control to kick in.
Later……
Love,
Nancy and Matthew
*************************************************************
Day 9
10:48 AM
Morning Update:
The mucositis is much worse today. He has sores under his tongue that look very painful and his throat has them too. He asked for morphine every 2hrs last night and when we both woke I asked if he was ready for the button and he nodded yes. It breaks my heart knowing he is suffering. I just wish I could take it for him, although I’m such a wimp I’d never make it through what he is going thru. His counts are pretty much the same, we need white blood cells, platelets dropped from yesterday but not as dramatically as we all predicted. His hemoglobin is hanging tough, Dr. D said his donor had some mighty strong red blood cells.
I’m feeling better today. I pretty much slept off and on most of the day. Matthew said I was making him tired.
Grand rounds should be any minute for us and hopefully the PCA pump will arrive soon so he can get some better pain control.
Today's Counts:
Hemoglobin: 13.5
Platelets: 14,000
WBC: 100
ANC: 70
We received some great care packages yesterday! Thank you to the Stants and the Allens! We also received more pictures for our ever growing Network Wall! We are also enjoying the funny jokes in the guestbook! Thank you keeping up and for letting us know you are all out there supporting our family!
Later………
Nancy and Matthew
***********************************************
Friday, February 1, 2008 4:48 pM
Afternoon Update:
Day 8
The pesky mouth sores are causing a good bit of pain for Matthew. He has quite a few under his tongue and now in his throat. He is on morphine but not the PCA button pump yet. When you get the button pump, you have to stay hooked up to the monitors and they bug him. So, he’s just asking for it as needed for now. He’s so brave and he never complains. I just discussed with Dr. J using Magic Mouthwash, which is Maalox, Benadryl and licocaine. They are writing orders for that right now.
Rounds went well again. They discussed pain management and they also changed the dose on his diuretic meds to see if that helps the BP issues. Overall, they say Matthew is doing very well! It is always a huge relief to hear those words.
Dr. D thinks we have another week until we see any signs of engraftment. So, we need to keep praying for the donors healthy cells to start to grow.
Today’s Counts:
Hemoglobin: 13.4
Platelets: 17,000 (after transfusion)
WBC: 100
ANC: 80
In addition to cell growth, please pray for pain management to work for Matthew. We can’t heal them, only his new White Blood Cells that we are waiting for can do that.
Keep praying….
Love,
Nancy and Matthew
************************************************
10:58 am
Morning Update:
Day 8
Matthew’s mouth is still painful and now his throat is hurting too. I think maybe he is getting sores in his throat as well. He is more comfortable on the Morphine. He was able to drink some chocolate milk and a few bites of a biscuit but the rest was too painful.
We had some issues of pretty high BP last night as well. I’ll be anxious to hear what they say at rounds this morning.
Mom is feeling a tad under the weather today as well. I am hoping it’s not anything because I don’t want to pass anything on to Matthew.
I’ll post after Grand Rounds.
Education Request of the Day – How it works by Mom
Today’s Question:
Nancy you used the terms PT and OT. I think PT means
physical therapy. I have no idea what OT means and I keep seeing it. You can imagine how distressed I feel.
Mom’s Answer:
PT stands for Physical Therapy. Their focus is to keep the muscles in the lower half of the body working well, to not lose too much muscle strength and to maintain some sense of over-all lower body strength. The BMT kids are usually pretty sick and tend to sleep and lay in bed a lot.
OT stands for Occupational Therapy. Their focus is pretty much the same as PT only they focus on the upper body. They try to play games (i.e. shooting hoops, or board games) that get the upper body moving.
Today’s Question #2:
This guy George and the three gorgeous men....
Who gave them the title and how do I apply? I think I can win
Mom’s Answer:
I will step aside and relinquish my role as Chief Question Answerer for this question! Stay tuned to the guestbook, to see if George decides to answer!!
Later………..
Love,
Nancy and Matthew
Thursday, January 31, 2008 10:59 PM ET
Day 7
Editor’s late night comment…
Ok, here’s the deal with the remote. The remote turns on the DVD player (step one), the remote opens the drawer thingie I think (step two), and it also allows you to hit play, pause and stop (step four, five and six). Step three which is actually inserting the DVD into the drawer thingie can be done via Frisbee style, slam dunking or using tape, a stick and a string….none of which require a chair. Now if only Sally would have found the remote that handled step three, I wouldn’t look like such a ding dong at this moment!
Love y’all,
The ding dong Mom
*********************************************************
5:59 PM
Evening Update:
Day 7
The afternoon went pretty well today. Matthew did PT and OT both! He was up out of bed using the laptop to play a computer game, he watched a movie and rested. The pain management team came in for a visit and we jointly decided that for now Matthew would use Morphine as needed. If it becomes unmanageable with the morphine, we switch to a PCA (a button that Matthew can push and pain medication would be administered as he needs it). He only needed the morphine this morning and so far that’s it. I do believe Matthew is handling this whole thing very well so far.
BP went up again today for some reason, but rest assured the team is watching him closely. No Benadryl this afternoon and no rash! Yeah!
My dear friend Sally came to town today bearing a Universal Remote, which will save me from climbing on the chair that has 4 wheels on it to put a DVD in. Dang it’s tough being short! And having a mute button….aghhhhhh luxury! She also replenished Mom’s food and found a Laundromat not too terribly far away to do our laundry. Such a gift to us! She also was able to wave hi to Matthew thru the window! Thank you Sally for taking such good care of us! We love you!
Well, Indiana and Ohio are both under a winter storm warning. I’m hearing anywhere from 4-10 inches at home and lots of ice and snow for Cincy. Lucky us, we get to stay warm and cozy together and watch the snow from our windows. Aren’t we lucky!?!!? I hope we get a huge blanket of the white stuff!!!
Mail call continued to bring more pictures for our Network wall (which is actually walls and doors now)! Every time a new staff member comes in they spend at least 10 minutes looking at all our pictures and asking a bunch of “who is this? And is that your dog?” type questions! Of course Matthew takes a LOT and I mean a lot of crap about being a proud Steelers fan! And let me tell you, no mouth sores can stop him from defending his team. These Bengal fans can be pretty vicious! In fact, Sally took Matthew’s warm and cozy Steelers blanket from Hayley to the Laundromat today and it was folded with most of the Steelers logos on the inside…I’m not sure if that was because she is a Colts (go COLTS) fan or because she was afraid for her life! Well, I met her at the garage elevator with a wagon to lug our tub of clothes up and when the door opened the entire elevator was laughing hysterically. Sally said “they were giving me all sorts of crap about the STEELERS BLANKET”! Too funny!
Well, I’m off to work on the new pictures we received. Mrs. Digan is sending us a bunch from Bishop Dwenger and St. Charles, so I’ve decided to start a poster just dedicated to each school! So, that will be a work in process I’m sure! I’ll take some pictures later! Thanks everyone for the cards, cookies, breads, letters, pictures, care packages and most of all the prayers. God is listening!
Later…….
Love,
The lone Colts and Steelers Fans
*********************************************************
8:59 AM
Morning Update:
Day 7
Matthew woke to quite a bit of mouth pain this morning. He agreed to start some IV morphine while we wait for the pain management team to come visit. He is doing his mouth care regularly, so hopefully that will help a bit too. I hate to see him in any pain whatsoever. YUCK.
I woke with every sound last night, I’m not sure if I was on pain alert or what. Then early this morning the nurse woke me to tell me Matthew needed platelets since his were only 7,000. I’m tired this morning. Good news is that I raced to the shower early and managed to only wait 5 minutes or so and to find a nice, neat, only slightly damp shower area!
BP is ok, no temps and no rash. He is officially at zero with the white blood cells and ANC and his platelets are very very low. His hemoglobin (or should I say his donor’s red blood cells) are ever so slowly dropping. The longer they hang around the better in my book, since that would mean one less transfusion for Matthew.
Today's Counts:
Hemoglobin: 13.8
Platelets: 7,000 (eek)
WBC: 0 (and a big fat one at that)
ANC: 0 (scary, scary hard to fight infections scary)
Please pray for pain relief for Matthew, for the sores not to get worse, for no infections and for the good cells to grow!
Later………
Love,
The Dyno Duo
*****************************************************
Wednesday, January 30, 2008 8:50 PM
Night Update:
Day 6
Ugh, the dreaded mouth sores are getting worse. Tonight Dr. J stopped in for a nice visit and while he was here he checked Matthew’s mouth. Then he pointed the flashlight and showed me what he was seeing. Double ugh. He has several mouth sores under his tongue. Holy cow they look sore to me. So far he has not asked for any pain meds. Dr. J said tomorrow, we will meet with the pain management team. This team will begin to prepare for Matthew’s pain control needs. GULP.
Matthew is also feeling achy tonight. Dr. J said it’s not unusual to feel this way. The new cells are in a new environment so they are freaking out a bit in their new home.
I guess it’s comforting to know that even though he’s not feeling so hot, that this is all normal.
Keep praying….for new healthy donor cells to grow, for pain control and for no infections.
Love,
The dynamic duo
*********************************************************
5:50 PM
Afternoon Update:
Day 6
Today has been an “ok” day for Matthew. Fatigue was the biggest issue today. He was completely exhausted and his dark circles look pretty dark today. Even so, he did some OT today, watched a movie, played on the laptop and started a craft project.
BP has behaved today and the rash is not flaring even with stopping the Benadryl! Yeah! The mouth sores aren’t worse…so that is good. He is eating a wee little bit and that is also good.
The mail delivery person told Matthew that he consistently gets more mail than anyone else on the BMT unit! Thanks to you ALL!!
I spoke to a lady today (thru a lady I’ve met here on the unit) whose daughter had an ALL relapse and BMT when she was 13. She is now 28. Boy, did that get a rise on the hope-o-meter! I just love to hear the long term success stories. I know they are out there but around here you tend to only hear the short term problems and the not so successful stories.
Grand Rounds went well. All organ function results are good. They are extremely pleased with Matthew’s progress. They made some slight adjustments to meds but the plan was basically to keep up the good work, rest and to take pain meds if needed. What great news!
I talked to the Inpatient teacher today several times. Believe it or not, we are getting Matthew prepared for his next course. I think he is going to tackle World History next. We’re taking it extremely slowly and are getting it all set and in place so that when he has good days, he can get some schoolwork done. Isn’t that the most amazing, super-human thing you’ve ever heard? I just can’t express how much admiration I have for my son. He is amazing to me. Actually amazing just doesn’t express it well enough? Does anyone have any better adjectives to use?? Mr. Rusk, perhaps you can help!?!?!
It’s almost dinner time…believe it or not the days just fly by here on the BMT unit. There is always something going on with Matthew and many things to keep an eye on. Emails keep me pretty busy, insurance crap never ends of course and then keeping in touch with my dear family at home. Gosh, I miss them a whole bunch.
Ok, off to order some dinner for Matthew!
Keep praying!
Love,
The Dynamic Duo
************************************************
Wednesday, January 30, 2008 10:30 AM
Good Morning:
Day 6
Question of the Day– How it works by Mom
Why was the transplant started at 3:00 am and not maybe a more
reasonable time like 6 or 7 am?
Mom’s Answer:
In Matthew situation there was actually 2 reasons.
First, Matthew’s donor cells came from overseas (not sure where but somewhere outside of the USA), so we had to work around the flight plans. After the cells arrived they went to the Hoxforth Center for processing and then they were couriered over in the blue cooler (just like you see on TV). So, we had to work around their schedules too. The cells are fresh not frozen so you want to infuse them as soon as possible.
Second, there was another transplant happening that night too. The other recipient’s cells were slotted to arrive from processing at 10pm. They wanted to be sure there was enough time between his transplant and Matthew’s. They wanted to eliminate ANY possible chance of stem cell mix-up, as well as making sure that Wally (the great dancing doctor) was available for Matthew during his transplant. The first couple of hours after transplant are where most of the reactions or problems might happen.
So, 3am it was!!
Question of the Day #2– How it works by Mom
Why can't you use the bathroom in Matthew's room? You are his mother. I don't get it. Isn't it more dangerous (germ wise) to travel to a community shower than use his?
Mom’s Answer:
Those are the rules. No one but Matthew can use his shower or toilet. I completely understand the toilet part, because not only the germ issue but also everything that goes out (everything) must be measured. I suppose using the shower must have some increased chance of something fungal growing? I also cannot eat or drink anything in the room, also to reduce germs. As difficult as the shower adventure can be, I’d do anything to eliminate germs from finding Matthew. So, if the big cheeses have determined this to help….than this I shall do. Besides, it gives me something to chuckle about. Over the past 7 years of chemo/cancer I have determined that laughing is MUCH better than sobbing hysterically!
Hey, y’all ask some great questions!! Keep em coming!
Now on to the star of the show…….
Matthew had a good night sleep but awoke with some mouth sores under his tongue. Bummer. They have Morphine ordered if needed. So far so good though. He says it’s hard to eat not only because of the sores but because the food has absolutely no taste. He says food sounds good but when it arrives and he can’t taste it, it’s hard to eat it. The good news is that since he is able to eat a wee little bit they are going to taper him off of the TPN for while to see how he does. He’ll have a 4 hour window without TPN. Hopefully, his appetite will kick in during that time. They will start the TPN back up if the mouth sores get worse and he’s unable to eat due to that.
BP is reacting well to the BP meds! Rash has not flared up with the lowered dose of Benadryl! Maybe just maybe we can taper it some more soon and then it might not be needed for other than a pre-med for transfusions!
All in all things are going well. We haven’t had Grand Rounds yet but I think all is looking good and hope to hear that confirmed during rounds.
Today’s Counts:
Hemoglobin: 14.0
Platelets: 13,000 (probably transfusing tomorrow)
WBC: 100
ANC: 0
Today’s prayers would be for no infections, continued healing, donor cell growth, and for the mouth sores NOT to get too terribly bad.
Keep praying!
Love,
The Dynamic Duo
************************************************
Tuesday, January 29, 2008 9:49 PM
Night update:
Day 5
The rest of the day zoomed by. Matthew felt good all day until around 8-ish. Then he started feeling sick again. He’s having some stomach pain and the diarrhea continues. BP is good and they lowered his Benadryl dose today. We hope the rash doesn’t flare up again since they lowered the dosage.
Today, Matthew had OT (occupational therapy) and they played HORSE. Matthew won! He’s the man!
Here is one of his more difficult moves:
Mail call!
An official Ohio State vs. LSU t-shirt from our friend David from the Lighthouse! How awesome is that??
Keep praying……
Love,
The Dynamic duo
***********************************************
12:49 PM
Day 5
Education Request of the Day – How it works by Mom
Today’s Question:
Today’s Counts:
Hemoglobin: 14.1 (thank you to our stem cell donor)
Plates: 17,000 (thanks to an unknown platelet donor)
WBC: 100
ANC: 10 (very scary zone)
Normal Counts:
Hemoglobin 13.0-16.0
Platelets (Plates) 150,000-450,000
White Blood Cell(WBC) 4,500-13,500
AGC (ANC) 1000 or greater
Is it at the point where all of these numbers need to/are ok to increase or is there still a need for any to decrease?Are the numbers on target?
Mom’s Answer:
All of his counts are pretty much tanked (zero for all safety purposes) except for his hemoglobin. I asked about why that is still so high yesterday and they said that it was due to the fact that the donor’s stem cells was close to a liter of blood product. They filtered out a lot of plasma etc so he just had pure stem cells. So a lot of the hemoglobin count you see now is still the donor’s red blood cells. After a while it will drop because at this point his marrow is producing NO cells. And as his own red cells continue to die off and he uses up the donor’s that count will drop also. Then he will be continually supported by transfusions of packed red blood cells and platelets until the donor stem cell engraft and THEY begin producing new cells. The hope is that the donor cells grow and NOT Matthew’s……all in all, the counts are doing what is expected.
Mom’s Shower Adventure
As you probably are all aware by now, we have Grand Rounds every morning. Since we are at the end of the 2nd wing of the BMT unit and they start on the 1st wing, I decided to try to get in my shower early to de-grunge and not miss rounds. So, I got my stuff ready in my handy dandy pink shower tote from Debra, and my outfit of the day and I trudged down the hall, out of the protected bubble of the BMT unit, passed countless people who undoubtedly were carrying countless germs, passed the elevator while still holding my breath, and finally arrived at the ONE shower on the floor. To my dismay, there was a line. So, I took a breath and headed back past the germ infested humans to our room. I waited about an hour and ditto’d the same trek. And to my delight, it was free! So, I happily skipped into the shower room and realized I had forgotten my towels. AGHHHHHHH. So back I ran (the heck with strolling) to the room to wash my hands before entering, grab the towels, holler hi to Matthew, wash my hands to exit the room and race back to the shower room. And I suppose you can guess where this story goes next……yes, it was full. UGH. So I waited and waited and waited, holding my breath every time a germ walked by and finally entered the shower. Now, once you get into the room, splash thru the puddles left by the previous tenants, you have to figure out what to do with your dry towels and clean dry clothes. There is one dinky chair and the container you put your used towels in. After securing the dry stuff, you wade again thru the puddles and into the shower stall that has a shower head that is mounted like 5’8” high (I honestly don’t think Greg being 6’4” would be able to take a shower here). And then they put a seat in this dinky shower stall, like anyone would really sit down in a community shower to lounge the day away. So, because the shower head is so short and the seat takes up 3/4 of the shower stall, you end up standing sort of like a pretzel, which of course Mom and her back spasms just love. Ok, I won’t even go into the whole leg shaving theory. So, then you step gingerly out of the stall into the bigger puddle (the lip of the stall is only ¼ inch high so water gushes over the stall and onto the floor) and hurtle across to the mostly dry corner by that chair that now holds the dry towels and clean dry clothes. Of course you are dripping and splashing as you and that area is not so dry anymore. You reach carefully for the towel and off fly the clean underwear……..right smack dab into the lake-like puddle. CRAP. Anyways, you manage to get dried off, teeth brushed, creams and lotions slathered onto your Sahara desert like skin, hair de-knotted from days of no brushing or washing and a dab of eye shadow to look somewhat female again. Your shirt is wet, your panties are soaking your pants but you are clean…of course there is no time for a hair dryer this could cause serious evil looks from other parents as you exit…so the hair takes a lovely flat hospital look very quickly…but at least it is clean. So, as you muddle your way back past the germ infested humanoids to the BMT unit and you open the main door, slather on more alcohol gunk onto your hands…you head right smack dab into the Grand Round crowd…….ugh……I’m sure they laugh at how horrible we BMT parents look and scratch their heads wondering why we look like wet morons ½ the time…. And that is the scoop on a BMT parent’s adventure in showering….
Now tomorrow I’ll have to share how MATTHEW takes a shower…it is quite an adventure too.
Later….
Love,
The fresh and lovely and slightly damp Mom and Matthew
****************************************************
9:49 AM
Good Morning,
Day 5
So far so good this morning! BP was perfectly normal at 4am! Matthew ate a doughnut and a glass of OJ for breakfast. Hooray! The tummy is calm and his spirits are good.
I haven’t attended grand rounds yet. I did have one question from his morning labs regarding a “liver count” that seems high to me. So, that will be my question of the day for the 42,000 staff members that attend rounds. There are mobs of doctors and staff at these rounds. If one doesn’t have an answer someone does. It is a really cool process.
We’ll be working on another Network Wall poster today! Mrs. Digan is sending several pictures of students and staff from Bishop Dwenger and St. Charles. We get an envelope filled with pictures every day! Yee Haw!! Thanks Mrs. D!
Today’s Counts:
Hemoglobin: 14.1 (thank you to our stem cell donor)
Plates: 17,000 (thanks to an unknown platelet donor)
WBC: 100
ANC: 10 (very scary zone)
Please pray for Matthew to continue to heal, for our donor’s cells to begin to grow (engraft) and for Matthew to stay infection free. Please also pray that our donor has healed from her procedure and is back to life as normal.
Later………
Love
Nancy and Matthew
Monday, January 28, 2008 10:05 PM ET
Evening Update:
Day 4
Overall today was good. BP continues to be high and they started the new BP meds tonight, but I’ve been told they take awhile to take effect. Matthew ended up getting sick tonight for the 1st time in a few days and has had a lot of diarrhea still from the C-diff infection. The rash has stayed away today thanks to the continuous Benadryl I think. The platelets and IVIG went in with no reactions!
We chatted on the Webcam with the Roos Girls and the Little Ones. Greg unfortunately has laryngitis, so he was on the quiet side. That webcam concept is really amazing. It is so nice to actually “see” my kiddos and to blow them kisses. Yes, it’s nice blowing kisses to the Roos Girls too!
Oh, I wanted to share something really COOL that we got today…it’s an awesome picture of Big Ben and Peyton shaking hands dressed in their Steelers and Colts uniforms of course. I’ll try to remember to take a picture tomorrow! Thank you G. Sally!!!
Well, I think that’s it for today….Day 4 went pretty well. Let’s pray that Day 5 is just as good!
Keep praying!
Love,
The Dynamic Duo
PS Sister Genevieve, we are collecting lots of stamps from all our mail for your mission!!
**********************************************
4:35PM
Afternoon Update:
Day 4
Holy cow….Matthew is feeling good again today! Hooray! We’ll take every good day we can get.
Grand rounds went well this morning. They started him on another med this morning for his continually high BP. I have lost count of how many meds he is currently on. The platelet transfusion went smoothly. He’ll be starting IVIG soon. Those pumps are sure getting a work out.
The mail arrived…Jeepers it’s a lot! We have some more poster boards filled with our Network pictures and have a whole bunch more to do!
Today’s mail:
Matthew being goofy and lookin good
Here’s yesterday’s additions (Nurse Shelly, on the top of the green poster board is the Lutheran Hospital Gang, you must have been camera shy that day...SHY??? HAHA) to our Network Wall.
And my dear EBM family sent me a wonderful surprise care package! They are absolutely the best people in the whole world to work with! They thought of everything to keep my comfy, smelling good, munchie attacks handled, brain challenged by Sudoku and even a great book! I’m so spoiled! Thanks guys!
Brittany and Logan after the circus…….
Matthew did great with PT. And I hear a rumor that MT might be dropping by too….I’ll fill you in on that later! He is getting an IGG infusion right now, so we are hoping for NO reaction.
Keep praying!
Later….
Love,
Nancy and Matthew
******************************************************
9:35 am
Good Morning,
Day 4
Matthew feels pretty good this morning. BP was fine, rash not as inflamed, spirits are good AND breakfast is being delivered. Hopefully, he’ll be able to eat once it arrives.
Matthew’s platelets are low so he’ll be getting a plate transfusion this morning and an IVIG infusion. We discussed the reaction that he previously had with IVIG. They will pre-medicate him and ramp it up very slowly.
Today’s Counts:
Hemoglobin: 14.2
Platelets: 11,000
WBC: 100
ANC: 50
I asked about why his hemoglobin is still so high? And DUH….he just received a boatload of blood products on transplant day. Plus red blood cells are the last to go. Ok, that cleared that nagging question up for me.
Today, is PT day, maybe I’ll join in….Greg, stop laughing………
Brittany and Logan had a great time on their adventure with Michele. They got home around 9pm last night, called me and bubbled on and on about the CIRCUS! They had a really great time…thank you Michele!
Keep praying!!
Love,
Nancy and Matthew
*******************************************
Sunday, January 27, 2008 8:15 PM
Evening Update:
Day 3
I have had the best birthday of my entire life. Matthew has felt pretty darn good all things considered. The rash thingie has really calmed down except for a few spots. (He’s on high dose Benadryl round the clock) His BP behaved (higher than his norm but very close to normal). No nausea (although he’s on round the clock anti-emetics) His mouth is still ok andddddddddd he asked for some food from the cafeteria….we’ll see how he does when it arrives.
To make my day even better, we talked to Greg and the Little Ones today on the webcam. For the first time in almost 2 weeks, Matthew felt up to talking too! Another birthday present for me!
Then around 2pm, I was ordered to leave the room and told not to return until he called me on my cell phone. So, off I went to drink a DDP (YES!!) until I was summoned back. Finally, he called. I was given a beautiful handmade birthday card and a Snickers (my fav) candy bar. I was so touched. Then I asked him how he managed to get a candy bar and I was told “I have my ways”! Isn’t he just the sweetest?
Justin called, my Mom called, we webcam’d with Jodie and the gang and I received oodles of emails and phone calls today.
Gosh, I’m one lucky Mom!!
Today’s Counts:
Hemoglobin: 13.7
Plates: 17,000
WBC: 100
ANC: 80
Ok, since I started typing this the rash flared up again and the food didn’t taste right…but it is all still good!
Keep praying!!
Love,
Nancy and her amazing son
******************************************************
Noon Update:
Day 3
Grand rounds were good this morning. All in all, Matthew is doing really well for this point in the game. He really does look better this morning. I’d take a picture but Aunt Jen says it might make his BP go up………actually it is going up and I swear I haven’t taken one picture today.
Matthew is sitting up and goofing around on the laptop. He even asked for some bubble gum, to which I promptly jumped up and ran to the cafeteria for bubble gum! I just love to hear him request something…he asks…I run…hmmmm maybe he’s actually my own personal physical trainer!
Thanks for all the birthday wishes! Having a GOOD day here is the best birthday present a gal could ever hope for! Sally, I’m sharing my Happy Birthday napkins with everyone, Doreen I shared some of my chocolates with a little 4 year old boy up here that keeps sending his poor Mama to search for chocolate….boy that made me smile to know I made a little boy happy AND his mama too! Brittany sang Happy Birthday to me this morning and she even did the "you smell like a monkey part"….Gosh I hope not…but up here who knows hehehe! Logan and Greg were full of Happy Birthday wishes too!
The little ones are going on adventure this afternoon with our family friend Michele. They have NO idea what the adventure is so I’ll have to let y’all in on the big secret since Logan and Brittany can both read and they are very resourceful when it comes to finding out secrets!
It is a beautiful sunny day in Cincy today and rumor has it the temp may go to 50. Quite a swing from earlier when it was 5 degrees.
Thanks for stopping by and for the prayers!
Love you all
Nancy and Matthew the Magnificent
PS the reading light works great! Thank you Danielle! Thank you Janice for the picture and the gift for Matthew!
***************************************************
Good Morning!
Day 3
So far so good! The rash/hive thingie is looking a bit better today. They think the steroids are helping that. They also said to expect it to come and go until the ATG gets out of the system (about 2 weeks). But for this morning it’s a bit better and we are thankful.
Matthew had some fruit punch this morning (yeah) but still isn’t eating. That’s ok though because yesterday he had baked chicken and today he’s having beef enchiladas ……..of course that is all in his bagged nutritional feeding…hey a guy can dream! Oh boy, as soon as I typed this he remembered the Curious George fruit snacks from Mary B……guess what?? He’s eating a package! Hooray!
The BP this morning was normal (and no Mom hasn’t taken any pics today Aunt Jen…reference guestbook).
The potassium still continues to be low, so he continues to receive potassium boluses and the lab is rechecked every 3 hours.
Matthew says his mouth is sore but no visible sores yet.
He is sitting up in bed reading all the great guestbook entries. You guys are cracking us up and at the same time keeping us motivated and up to date on the real world! Thank you!
Well, I need to find something amusing to do this morning…maybe a game of cards or Yahtzee is in order!
Keep praying!
Love,
The Dynamic Duo
************************************************
Saturday, January 26, 2008 8:03 PM
Day 2
Evening Update:
All in all today has been pretty good. We’ve had our issues but things have been much calmer today. I’ll take “pretty good” any ole day.
Matthew’s BP is still high but lower than before the Lasix and the breathing issues are gone again. The rash still looks horrible but doesn’t seem to be bothering him too much. We are on our 3rd bolus of potassium which is still critically low, for whatever reason his kidneys aren’t “hanging on” to the potassium he is getting.
We have about half of the pictures we’ve received so far on the poster board and hung up, we’ll do some more tomorrow. Keep sending we have lots of walls to fill with our very much loved Network. We even have pictures of some puppies and kitties on our network wall!
Our Network Wall so far……….
A poster Matthew made. It is all about Matthew……..
Picture of the picture from Logan, Logan’s class saying the Rosary for Matthew, and the only COLTS stuff in this room filled with STEELERS stuff….hmmmppfffff
I added a picture of Matthew from this past July to our door…..I just think he’s so darn cute…sorry Matthew………..stop rolling your eyes at me….I just can’t help it…
Please pray for a rest filled night, Matthew certainly needs the rest!
Love,
Nancy
*************************************************
5:03 PM
Day 2
Evening Update:
• Lasix given for the BP, still running high
• Benadryl given for the rash/hive thingies – still looks awful
• TPN (nutritional feedings) still dripping in – not eating
• Diarrhea from C-diff infection still an issue
• Exhaustion – taking a nap now
• 99.2 temp – praying that goes away
• IU lost to Uconn – Mom is growling
Matthew was on the laptop a bit this afternoon, checking his email and MySpace and the guestbook. Thank you for writing.
We have more poster boards from child life, just need Matthew to perk up a bit so we can proceed with our Network Wall.
I think I might take a nap…….watching Matthew snore is making me sleepy!
Later………
The Dynamic Duo
**************************************************
2:03 PM
Early afternoon update:
Day 2
The BP is back up high again (147/90) and the breathing difficulties are back. It seems to me the 2 are linked. I’m not sure what the plan is at this point, docs are conferring.
Rash is worse.
Tummy is quesy.
Overall, just feeling crummy.
And IU is losing to UConn at the moment……sigh.
Keep praying!
Later……..
****************************************
10:23 AM
Morning Update:
Day 2
Finally, we slept a bit last night….well I did, Matthew had to deal with vitals every 4 hours but that was much better than the every 15 minutes we did for the prior 24 hours.
We have some good news and some not so good news today already….
Good News:
• Matthew’s kidney functions are back within normal range! They are still being very careful since the reading tripled over night in the first place. But this is good news.
• Matthew’s BP was normal this morning! Hooray!
• Matthew is getting his nutritional feedings (TPN) via IV and is tolerating it well!
• No mouth sores!
• The pain in his chest seems better today!
• I saw a smile this morning from Matthew! I saved the best for last!
Not so Good News:
• Matthew’s Potassium was critically low, but that is fixable. He received an infusion this morning and potassium will be added to his TPN bags for ongoing additional potassium.
• Matthew’s rash/hives on his legs looked ghastly this morning. He casually mentioned this morning to me that the rash was worse. I looked at it and almost fainted. His legs look like they have been burned. It looks so bad I felt like crying. His feet are actually swollen from the horrible red rash. Both Dr. G and Dr. J looked at it and they think it may still be a reaction to the ATG. Even though the reaction is different looking and more severe, that is what they are leaning towards. I am glad they don’t think it’s GVHD, that would not be good either. They gave him a super high dose of Benadryl (I love the person who invented this drug), hydrocortisone IV, and are starting him on oral Prednisone (Oh the thrills are multiplying).
• The other not so good news is that ATG’s ½ life is 2 weeks. That is a long stinkin time to be reacting to that silly horse stuff. SIGH.
• Matthew’s platelets are low so he will be getting a platelet transfusion today.
• The IV pole continues to grow. There are now 6 pumps on the pole…yikes 
The guestbook entries and emails mean so much to us both. It reminds us that we are not alone in this fight. My friend Sally wrote “This doesn't seem like a fight anymore, but a WAR.” She hit the nail on the head. We are in a war. Matthew is our Admiral and he has rallied up his troop of soldiers…we are following him gladly into this war. We have gathered the most incredible team in the world….we have our Loving God, all the Angels, our friends, our family, the best doctors and nurses in the world.
Please pray for Matthew’s rash to go away and for his body to begin to heal and most of all for his new healthy cells to begin to grow.
I’m hoping Matthew feels well enough today to continue with our Network Wall. We have so many awesome pictures and another reminder of our support both here and at home.
Here is Matthew and his huge pile of mail from yesterday! WOW
Mrs. Black is amusing, isn’t she?? 
Mrs B taking care of Mom too………..
Doesn’t he look great?
Today’s Counts:
Hemoglobin: 13.3
Plates: 15,000
WBC: 100
ANC: 100
Later……
Love,
Nancy and Matthew
***************************************************
Friday, January 25, 2008 9:23 PM
Night Update:
Day 1
Well, the Dr J and Dr W are pretty sure the breathing issue Matthew is having is due to the early stages of mucositis in his esophagus. This stinks. I know that pretty much everyone who goes thru a BMT has this, but a Mom can hope that maybe her son will be spared. This is can be an agonizing side effect of the chemo and radiation.
What is Mucositis?
Mucositis occurs when cancer treatments break down the rapidly divided epithelial cells lining the GI tract, particularly in the mouth, leaving the mucosal tissue open to ulceration and infection. Mucositis can occur anywhere along the digestive tract from the mouth to the anus. Oral Mucositis is probably the most common, debilitating complication of chemotherapy and radiation. The consequences of mucositis can be mild requiring little intervention to severe that may result in fatal complications. Chemotherapy and radiation therapy can affect the ability of cells to reproduce, slowing healing of the oral mucosa. Patients with damaged oral mucosa and reduced immunity are prone to opportunistic mouth infections. Mucositis appears as redness (inflammation), sores (ulcerations) and associated discomfort and pain. When ulceration develops, treatment is mostly supportive until the cells regenerate themselves, which takes about 7 to 14 days (most commonly associated with a low white blood cell count).
They finally gave Matthew a BP drug that went under his tongue. It brought his BP down from 153/100 to 83/35 within minutes….never a dull moment with this roller coaster ride. Too high…too low….
Matthew finally fell asleep after our incredibly long and painful day and night. I’m praying he will stay asleep and get some much needed rest….but I’m not willing to bet the farm on that one.
Please pray that the aftermath of all the chemo and radiation are not too severe and that it can be adequately controlled by pain medications.
Love,
Nancy and Matthew
**************************************************
6:33 pm
Day 1
Evening Update:
To sum it all up………..Matthew is feeling lousy. The vomiting has started back up, the hives continue, his face feels like it’s swollen, he’s dizzy, his BP is all over the place and he would like to go home now.
We’ve started the anti-emetics back up. They are giving him more Benadryl and they are going to start TPN. The poor kid hasn’t eaten really for days other than some toast the other day. This will give him nutrition and lipids (fats) without having to force food into someone who is so pukey.
Gosh, lots of issues…it’s a constant parade of nurses and doctors. UGH.
We are both getting tired…..it’s been a long day/night.
Keep praying!
Love,
Nancy and the true hero of this story, Matthew
***********************************************
3:43 PM
Day 1
Afternoon Update:
Well, the transplant was officially done at 11:30 am! Hooray!! The morning was pretty tense due to the BP issues (high was 163/100) and breathing issues, and later in the day bad hives. The BP is close to normal and as long as Matthew sits up his breathing is ok. They are going to do a chest x-ray to rule out “lung issues”. The hives are still rampant as well and probably from the transfusion. Oh my, there seems to be a new issue every hour. Sigh.
Matthew is completely worn out and feeling nauseous again. We tried to take him off the anti-emetics to see what happened and I don’t think that was wise. So, he’s back on the Zofran round the clock and the others as needed. In addition to the Zofran for nausea, he’s on a boatload of other drugs. It’s actually rather overwhelming.
Today the mail delivery person almost needed a cart to deliver all of Matthew’s mail! He received so many great cards, and pictures as well as some surprises. Our friends the Jay’s sent pictures from the last Colts game to be played in the RCA dome…go Colts! Logan’s class sent a poster of his class saying a decade of the Rosary for Matt! The Roos Girls sent a stack of pictures for our wall. My favorite was a close up of Brittany from last weekend when she attended a Roos Girl Sleepover! It made me cry…I miss my baby so much. She looks so beautiful! I haven’t counted yet but my guess is we have over 100 pictures to get hung up…we might need 2 weeks to get them all up! How awesome. So many smiling faces in our Network!
Dear Ole Mom received a bunch of mail today too…a little bird let out that my birthday is on Sunday. My birthday gift was actually received at 3:00 AM this morning, but the cards sure made me smile too! I’m going to put MY cards up in my own little corner of our room! Thank you everyone for remembering me! Thank you also to Danielle for the reading lites! The lamp is going back to the van now!
Sweet Sally stopped by Cincy today with Birthday presents and even birthday cupcakes complete with plastic birthday candles! How cool is that? And she also brought me more food. I think there is a food conspiracy going on here…..
We can’t thank you all enough for all the cards, pictures, surprises, food delivery, laundry services, phone calls, help at home and most important of all……..your prayers.
Later…….
Love,
Nancy and Matthew
******************************************
11:14 AM
Late morning Update:
Day 1
Boy that was a lot of cells! They are still infusing. Things got rather tense all of a sudden. Matthew’s BP was still high and is still in the 150/100 range. He had a really severe headache and difficulty breathing. They gave him Benadryl (a wonder drug in my opinion) and Lasik. Hopefully, that will get some of the fluid out and the BP down. He feels pretty crummy and is very exhausted. They are checking his BP and temp every 15 minutes, his O2, and heart rate is continuously monitored.
We just had Grand Rounds, and they said all in all his transplant is going well. We still have kidney issues but they are slowly improving and they feel the BP and breathing issues will resolve once the cell infusion is done.
Please continue to pray. Matthew has a long, hard, and scary road to travel yet. The number of people praying all day yesterday at St Charles and all over the world was overwhelming. Then at 3am, I’m getting text messages, emails and guestbook messages, all from people who were up praying. The most amazing thing for me was the number of people who wrote to tell me they were woken by something (a crying child, a dog barking, or nothing at all) at exactly 3am. Many have said God or Angels woke them. How glorious is that?
Today’s Counts:
Hemoglobin: 9.3
Platelets: 34,000
WBC: 600
ANC: 600
Later……….
Love,
Nancy and Matthew
*******************************************************************
9:14 AM
Mid Morning Update:
Day 1
The cells are still being infused. We are dealing with some issues at the moment. Matthew’s BP is very high (163/94) so he is going to get some meds to help lower it. His kidney issues are still high but trending down. And he has C-diff again. He had this bacterial infection when he was inpatient in December at Lutheran. More meds.
Please pray that Matthew’s BP goes down, his kidney functions continue to improve and the C-diff goes away soon.
He is feeling pretty good at the moment. Just very, very tired.
Later….
Love,
Nancy and Matthew
***************************************
Good no make that Great Morning!
5:44 am
Day 1
The transplant is in process. It all started around 2:30 am when the word was passed that the cells were arriving momentarily. The nurses started pre-medicating him and me being me headed to the bathroom to do my thang. On the way back I ran into a man carrying a cooler. I shouted “are those cells??” and he said “yes” and I said “those are my son’s cells”. I then ran for my camera. Dr. W said in all his years of BMT’s, he thinks I’m the 1st to take a picture of the currier…LOL
Here is the official courier delivering Matthew’s life saving cells……Dr. W is checking them in with the courier.
Here’s Matthew before transplant (getting pre-meds)…and trying to sleep….
Nurse Susan getting his pre-meds in line………
It’s Transplant time….everything is right on schedule….I think we hear alarm clocks going off all over the world…..
Hooking up the gravity-flow line…..wha’s up with that look Matthew? Just because it’s 3 am and I’m taking your picture AGAIN! Geez….
Look at all those pumps………and yes that’s Princess B in the background checking in…….
Nurse Susan and Dr. W checking to be sure these are Matthew’s new cells……
Checking to be sure this is really Matthew …….
Hanging the precious cells………
We have “hook up”…..
Ready to drip…….
Matthew watching the big moment……..
Dang, I should have fixed my hair……
Our docs doing the official “Cell Dance”…How cool is that??
We had a great team starting the transplant. We were laughing and really enjoying the big moment. It was great sharing the moment with special people like our staff at Cincy. It is now 5:42 and Matthew is resting peacefully. His BP is high but still safe. No fevers or reactions so everything is going well. Praise God for he is good.
Thank you everyone for praying with us tonight!
Love,
Nancy and Matthew
Thursday, January 24, 2008 3:00 PM ET
Evening Update:
Day 0
Radiation is over! Yeah Rah!! The last one went fine. He is amazingly brave and I couldn’t be prouder of him! The staff at the Barrett Center are wonderful. They are very professional, and also very compassionate.
Here is one of his Radiation Docs…
Here are two of his Radiation Therapists with Matthew…
Here is Matthew taking off his vest for the LAST time!!
They re-ran Matthew’s kidney function labwork and it has come down a wee little bit. His Creatinine level is still high but trending down so that is a good sign. They will proceed with his Cyclosporin tonight and see how it looks tomorrow morning. The rest of his counts are dropping but just not what I had envisioned but everyone says things are going just perfectly.
Today’s Counts:
Hemoglobin: 10.8
Plates: 34,000
WBC: 1,200
ANC: 1,190
Dr. J stopped in to wish us luck and to answer any last minute questions. I only had a few believe it or not! I think we are ready to get this show on the road. The camera battery is all charged, we are all charged and hopefully the cells are enroute or already here. ETT (Expected time of transplant) is 3am! It’s TRANSPLANT TIME!! We are making Dr. J and all other staff do the “cell dance”…now that should be interesting!
Thanks for praying!
Love,
Nancy and Matthew
***************************************
3:00 PM
Day 0
How does Transplant work? A special request from my friend Julie……
Transplant 101 by Nancy:
All this stuff that Matthew has had done the past 2 weeks is all part of the preparation (AKA conditioning) for transplant. The radiation and chemo is supposed to go in and kill off all of Matthew’s cells in his marrow. The marrow is the spongy part inside of your bone whose job it is to grow cells. The marrow grows white blood cells (the infection fighters), red blood cells (the oxygen carrying cells) and platelets (the cells that help clot your blood when you bleed). There are many sub type of white blood cells who all have their own specific jobs to do. For example: Neutrophils and Lymphocytes both kill invaders one specifically kills viral invaders and one kills bacterial invaders.
The conditioning is designed to go in and deplete or kill all of Matthew’s cells. That’s why it was so hard on him. His cells that for whatever reason tend to grow Leukemic cells are being destroyed.
Meanwhile, the donor is picked based on some complicated genetic testing. They look at the alleles on the genes of both Matthew and the donor. The hope is that the 10 alleles that they find to be most important to the success of a transplant are perfect matches. Matthew and his donor are perfectly matched. (thankfully) The donor goes thru several Q&A sessions with the folks at the National Bone Marrow Registry. They completely review the process and the risks. Each time they give the potential donor a chance to “back out” but they also let the person know that a 15 year old boy needs their help. After they agree, they go thru vigorous blood tests and a physical. Our donor agreed (may God bless her) and went thru the process.
Today, she donated her cells. She was sedated and they extracted a lot of her marrow from her hip (s). A friend of mine who was motivated to donate after Matthew’s 1st relapse and was indeed picked to donate, told me that the site (s) are painful. He also told me that he took an Advil type medicine and the pain for controllable. He also went back to work a day or so later. So there is pain involved and of course as with any procedure, a risk. We are so thankful to this wonderful lady for stepping up to help my son.
After the harvest, the cells are flown (I assume they are on their way right now) to Cincinnati. They go to a facility down the road for preparation (not sure what that all entails) and they will be delivered to us tonight around 3 am.
The transplant itself is really pretty much like a blood transfusion. They have to infuse pretty slowly since it will be a large volume and it is pretty rich. They also have to be sure he doesn’t have any reactions. It is dripped in like any other IV. I guess in the “old days” they actually drilled into the bone and injected the marrow right into the bone…ewwww I’m glad we’ve made such progress!
After that is done, we wait. Matthew will be sitting here empty so to speak. He’ll have no cells of his own and the donors stem cells will not have started to grow (engraft) yet. That process should take between 3-4 weeks. It is a very scary time because the least little germ could cause an infection that could be very serious and even life threatening.
Once the engrafting starts, a new issue that may arise is called Graft vs. Host Disease (GVHD). A little GVHD is good, because basically GVHD is a process in which the body thinks the donor cells are invaders so it tries to destroy them. Leukemia cells would also be thought of as invaders so the body would try to destroy them if any of Matthew’s cells survive. SO a little is good, a lot is bad. They try to control the amount of GVHD with the use of steroids. We really really don’t want it to get out of control, severe GVHD can be life threatening.
After transplant and engraftment, the healing begins. Matthew will be on anti-rejection meds and quite a few others for a long time. But that is way down the road. So…Transplant 101 is concluding for now.
I hope you enjoyed this lay-person-Mom’s lesson on BMT!
Nancy
**********************************************************************
Afternoon Update:
Day ZERO!!!!
Matthew is doing great today. He even ate some toast this morning and drank some juice, YEAH!! It’s an amazing thing to see Matthew coming back to his normal self! Today, we put stickers on our map for locations that we received cards or Ecards from. We also worked on our 1st poster for our Network Wall. He received another bunch of pictures today, but he’s a little worn out so we’ll save that for later tonight or tomorrow.
Here’s our cutie working on our 1st poster board! Doesn’t he look amazing? He is the KING of bouncing back!! 
Here are some pictures of the Parent Lounge……Mom’s hangout when I’m not in the room….
In preparation for the big day……..this magically appeared on the door…….We are starting to fall in love with our Cincy staff too!
Speaking of big day……12 more hours and Matthew’s life saving cells from our heroic donor will begin to be infused. It’s hard to believe we are so close to this “moment”!
We leave for radiation at 3:30 …the last one forever!! Hooray!
Today my dear friend Doreen came bearing DDP (YES!) and other munchies! And this wonderful woman took our laundry and is going to do our laundry for us. We are so blessed to have so many to help us….tears, tears, tears.
Last night Dr. B (our Oncologist at home) called to check in on us. She said some wonderful things to us both. She is a caring woman and it meant a lot to us both that she called to check in, wish us luck and give us both a pep talk! We miss our Lutheran Hospital family a lot!
Later……
Nancy and Matthew
**************************************************
10:28 AM
Good Morning!!
Day ZERO
Last night was quite eventful. They finally got the hives to go away and the breathing issues as well. The ramping of the ATG worked great and we were able to get all the ATG in HOORAY!!! It was a long night, I kept waking up to be sure the breathing thing was all ok. All our Angels were keeping an eye out too and of course our wonderful nurses and Dr. Wallace.
We finished the morning TBI with amazing speed. Matthew didn’t need any breaks! He is so amazing!!
We are going to start putting stickers on the map today since we have received some mail! And hopefully if he still has the energy we’ll start our Network Wall. Keep sending pictures!
One issue we have going on is Matthew’s kidneys. His creatinine level tripled over night. So they are re-running the test, hoping that possibly it was a lab error. Today’s prayers should be for Matthew’s kidney’s to be ok. They are carefully monitoring all his fluid intake and what goes out. It is always something.
They haven’t given me all the other labs yet, so I’m anxious to see how things are looking today.
Ok Matthew is anxious to start his map and posters, so I’m off for now.
Keep praying……don’t forget our donor who is probably donating this morning…pray for her as well.
Estimated Transplant time is 3AM tonight (Which is technically Friday). …..We are fast approaching the big event!!
Love,
Nancy and Matthew
Wednesday, January 23, 2008 11:22 PM ET
Nite-time update:
Day -1
And just when you thought you were safe……..I’m back……..
Matthew is one big huge hive. He is having a reaction to the ATG. He only had 31 ml out of 500 when the hives started. The hives are one huge hive now. Then he began to have trouble breathing. We’ve stopped the ATG while the on-floor doc calls the big cheese doc. He was concerned about continuing the ATG since he was on steroids, Benadryl and Tylenol and has had a reaction. We are now waiting on the new plan.
The new plan is to add another type of anti-histamine, double the steroid and ramp up the ATG very slowly to see if we can get this last dose in. This should take about 12 hours instead of 8. I sense sleep will be a far away concept again tonight.
Onward we go……….
Love,
Nancy and Hive Boy
********************************
8 PM
Day -1
Evening Update:
The afternoon radiation went so much better than this morning’s treatment. They were all shocked that this was the same person that could barely walk, sit or stand in the morning. The vomiting stopped from 10am until about 8pm. What a nice reprieve for him. I was kind of hoping it was over with for now but we’ll take this over the previous 24 hours. Matthew is very exhausted but had in the middle of the day have a spurt of energy enough to do some Physical Therapy (PT). This is very important to try to keep up when times are somewhat good. I had left to go to the bathroom and came back to see Matthew up out of bed doing exercises! HOORAY!! This is really amazing to me considering all the chemo, radiation and the fact that there has been no food in his body since 2 saltines on Saturday.
Here is SUPERMAN himself doing some PT……
Matthew is resting and watching some TV but now we are watching his BP which decided to drop pretty low. We should be doing the last ATG shortly, so please pray for no reactions again!
Hopefully, nothing is growing in the cultures and hopefully the vomiting is under control.
Our prayers are an amazing thing.
Love,
Nancy and Matthew
***********************************************
3:22pm
Day -1
Guess WHAT????????
Matthew is doing PT! He is TALKING! He is sitting and standing. He is talking about Big Ben with the PT whose ex-boyfriend was roommates with Ben. He is feeling a whole lot better. Oh my gosh, it’s a miracle…all the prayers.
We are off to Radiation in 15 minutes…please continue to pray that he continues to feel better!
Love,
The SMILING Mom and her vey brave son
*******************************************************
1:22 PM
Afternoon Update:
Day -1
Matthew has been resting since the horrors of radiation this morning. He has really bad diarrhea now on top of the vomiting. And to make things even a bit more jolly, he is now running a fever. So, they are running a stool culture and a blood culture. Please, please pray that nothing grows in his culture. We do not need an infection at this point.
They are changing around his anti-emetics a bit more. They are going back to Zofran but are going to put it as a continuous drip. Hopefully, that will give him more continuous coverage. He will stay on the Ben-Phen around the clock as well. He really hates the way the Marinol makes him feel, so we’ll play that one by ear.
I did ask about his high WBC & ANC at Grand Rounds today. Dr. J explained it to me and it made perfect sense. And to share and help educate the masses….
WBC 101:
White blood cells job is to fight infection and foreign invaders in our body. Matthew’s body is being bombarded with invaders (horse stuff, radiation, drugs out the wazoo) so the WBC’s are thinking they need to fight off these invaders to protect the body. So, the marrow starts to produce a lot of white cells….and as you can see the body is so busy producing the WBC’s that it isn’t producing as many platelets as normal. Thus the low platelet counts. Dr. J said “they have no idea they are about to all be slaughtered”. In other words, those brave cells don’t have a chance and they will be soon dying off in masses. Now my thought is also that Matthew might have an infection brewing (fevers, diarrhea) and that is why his body is going into WBC overdrive. That is just my theory. So, it is all making sense to me…I’m happy with that answer. End of class.
I’m dreading the 4pm radiation more than words can express. He will also be getting a 3rd type of radiation this afternoon as well. Then tonight, he will receive his last dose of ATG. Please pray for no reaction again.
I took a trip to the van today…it’s doing just fine! I was in serious need of a DDP. We have been inpatient since Friday and I only drank 6 DDP’s…..talk about a serious withdrawal! Well, I couldn’t stand it any longer, so once Matthew was solidly asleep I raced down below the hospital to the 3rd floor where the van is sitting on choice real estate. It is exactly 15 steps from the elevator!! I had to wave off hoards of prospective parking spot shoppers! I also brought up a small lamp that we had packed. Matthew likes the room very dark…and when he is asleep and I can’t sleep I like to read. So, I thought borrowing the nurses flash light again probably wasn’t a good idea. Hopefully, it will be dim enough not to bother Matthew. I just finished my 2nd book and I’m about to start my 3rd.
Well, I’m going to go for now……..keep praying…and don’t forget to pray for our hero/donor today too!
Love,
The dynamic duo
***************************************
10:22 AM
Late Morning Update:
Day -1
TBI was literally torture today. He was so nauseous and so tired. He needed help just walking 5 steps. He is so weak. He kept saying “I’m just too tired Mom”. I had to get firm and tell him he had to do this, this was the last steps towards a cure. One step at a time….I squatted down on the floor (no easy feat with this stupid back of mine) looked him in those beautiful eyes that he could barely keep open and I said “Matthew you can do this, you are brave, you are tough and you Never Give UP……now let’s go”. And he did.
I talked him thru the entire 4 sessions…I was trying so dang hard not to cry. I swear the sessions got longer each session. We took breaks in between, 3 of us helping him off the seat and into the chair that was just a few feet away.
Matthew really needs some prayers. I kept praying for strength…just give him strength dear Lord. Please say some prayers for strength to get thru the next session this afternoon. We’ll worry about tomorrow later.
Tentatively, the actual transplant is supposed to take place at 3am on Friday. Many have already emailed me that they are setting their alarms to get up to pray. If the time changes I’ll be sure to post (I’d hate for anyone to wake up and pray at the wrong time!!)
This process really stinks. It’s pure agony. It is all I can do not to start screaming……..JUST STOP already. I find myself telling myself to be calm…..take deep breathes (that must be Sally in my brain somehow) …..And I have to be really careful to do this silently so no one comes to haul me off to the loony bin.
Matthew is the bravest kid I know. He is so sick and so weak, but yet he doesn’t complain. He allows me the honor and privilege of helping him. I just love him more than I can even express in words. I wish I could do this for him.
Keep praying……Matthew is sleeping and Grand Rounds are on our wing. Maybe after that I can join Matthew in a nap.
Today’s Counts:
Hemoglobin: 11.3
Platelets: 62,000
WBC: 9.4
ANC: 9,310
Love,
Nancy and Matthew …..Always the dynamic duo
**********************************************
8:22 AM
Morning Update:
Day -1
The vomiting actually slowed down last night..until 1am, then he got sick in his bed, he hollered for me and I hurt my back jumping out of bed. I had to get him cleaned up and then take his laundry down to the laundry area which was full and not a soul in sight …so I waited ½ hour and said the heck with it…so I took out their clothes from the dryer folded them and then put their washer stuff into the dryer and then washed Matt’s and then took their stuff back out of the dryer and back into the washer so I could dry Matt’s stuff. This all took until 4am. Then I went and called Greg…then I came back at 5 to doze and then at 6am Matthew is hollering my stomach hurts and 8 on the pain scale in fact, so I’m flying up out of bed again and he’s puking green black ghastly stuff. He’s been puking every ½ hour since. We are supposed to leave for TBI in 10 minutes.
We are both exhausted……Keep praying...we just need to GET thru this....
Later,
Nancy and Matthew
PS….Matthew received 2 emails printed and delivered yesterday…you can find it somewhere on Cincinnati Children’s Hospital site! He enjoyed them a bunch between pukes anyways!
******************************************************
Tuesday January 22, 2008 6:22 PM
Evening Update:
Today has been downright awful. Matthew is vomiting every ½ hour now. When we were at the Barrett Center for the 2nd TBI of the day, he threw up 3 times. The 3rd time was filled with blood. He got really light headed and everything had to stop. They paged the radiation doctor, who I just love…and I completely dumped on her about how frustrated I was with trying to get the nausea under control. The woman gave me a hug and then proceeded to call the docs over here. She basically told them they needed to figure something out so he is able to continue with the radiation.
It took 2 hours to do what normally takes 20 minutes. He is just totally worn out. My heart is just breaking for him.
So, now we are going to switch from Zofran to Kytril and add Marinol to the combo. Please pray that this helps.
We still have to get ATG and Cyclosporin tonight, so please pray both go in reaction-free.
The good news of the day is that we received several pictures for our network wall. I found Child Life today and they brought us some poster boards. So, hopefully Matthew will have a moment or two when he feels good enough to start our wall! Thank you Mary Ellen, Grandma, The Roos girls and the Ziegler Clan for pictures and cards! They sure brightened our day! Matthew and I cuddled up in bed together and opened each one! We sure enjoyed them.
Ok, I’m off to empty a puke bucket and pester some doctor about puking……
Later…
Love,
Nancy and Matthew the Brave Puking Warrior
*****************************************************************
10:54 AM
Morning Update
Day -2
Matthew did great with the ATG last night, so well in fact I finally fell asleep around 2am. They didn’t start it until 11pm and I was so nervous about the potential side effects, I figured I would be up with him all night. Good news is that he did great. He woke up every few hours to throw up and he’s been throwing up all morning. He hasn’t eaten or drank anything for days now. It just breaks my heart.
Radiation was rough this morning. He made it thru the 2 sessions on the “front” of his body, threw up and then they flipped him around. He made it thru the 1st “back” session and had to stop. He was so weak that he barely made it from the “torture chamber seat” to the chair that was 3 feet away. He rested a bit and said “let’s go”…and jump into action we all flew. I talked him thru the last session at the same time praying to God to keep him from collapsing. My prayers worked, he didn’t collapse. The radiation made him so weak and tired. We got him back to the room and he’s sound asleep. I’m waiting for Grand Rounds to get here. I’m anxious to talk to the doctors about the vomiting issue and to ask how long until his counts start to plummet. They are actually still really good. His platelets are the only thing that is starting to slide.
Matthew is on a boat load of drugs right now. He’s getting Zofran, Benadryl and Phenagran for nausea (these are going round the clock), Cyclosporin 2x/day, Fluconozole (anti-fungal), Tylenol as a pre-med for ATG, Acyclovir (another prophylactic aniti-viral drug) and of course the scary ATG. His pump pole went from this nice silver pole with one pump to this:
We have another radiation session at 3:30 and then the ATG again at 5:30.
Today's Counts:
Hemoglobin: 12.9
Plates: 100,000
WBC: 6,200
ANC: 6,080
Keep praying…today if you could specifically pray for the nausea and vomiting to go away and for him to not have a reaction to the ATG.
Later………
Nancy and Matthew
Monday, January 21, 2008 7:39 PM ET
Evening Update:
The puking is non-stop. I don’t know how he has anything left in him to throw up. He hasn’t eaten anything more than a cracker in days. Tonight he decided he wanted Sierra Mist so I ran to the cafeteria to get him one and then remembered I could have ordered him one. I just got so excited that he asked for something that I zoomed. Mere seconds (ok minutes) later I gracefully entered the room stumbled huffing and puffing into the room with a Sierra Mist in hand. Then he wanted ice, so I raced like a finely trained sprinter really tired old lady to the other side of the unit for ice. He drank 2 sips…..sigh….I guess 2 sips is better than no sips……..I need to do my cool down soon….
Please pray for the puking to stop. Topic #1 on my list tomorrow on rounds is going to be puking-management techniques. The 2 suggestions I made today were both vetoed by the team this morning and their reasoning made sense unfortunately. I just have to think there has to be another option to try.
The 2nd TBI went much quicker and he made it thru without throwing up. I talked to him over the speaker while he was getting it done. I let him know how much he had done and left to do at different marks. He is just so incredibly brave and tough.
Today’s counts were actually better than the previous day results. No one seemed concerned at rounds this morning. I’m sure they are heading south soon. We haven’t started the ATG yet. I’m reallllllly dreading it but we have to do it.
Today’s Counts:
Hemoglobin: 12.9
Platelets: 134,000
WBC: 4,200
ANC: 3,400
We are anxious for mail call tomorrow! Hopefully, we’ll have lots of smiling pictures to put up!
Love,
Nancy and Matthew the puking warrior
**********************************************************
2:39 PM
Afternoon update:
The puking is pretty bad. We are trying some different doses and timing of meds. I hope this helps him. I hope he makes it thru TBI ok this afternoon. That might be bad if he’s puking.
I took a few pictures today prior to radiation and in the ambulance:
Working on the placement of the lead blocks….they look just like little silver lungs don’t they?
Mom, you can be sooooo annoying with that camera…
Boy, am I glad that is done…..oh no, there is Mom again with that stupid camera……
Hurray up, it’s only 5 degrees out here and Mom locked our coats up in the parking garage……
We’re off for round 2 of TBI….I hope he stops puking…..
Later
************************************************** 11:59 AM
Late Morning Update…
Day -3
Sorry for the late update. It has been a rough morning. The ambulance folks came around 8:30am to transport Matthew to the Barrett Center for radiation. They took an x-ray to be sure the lung block placement was correct. They are desperately trying to protect his lungs. Unfortunately, the placement was not correct so they had to work on the placement some more. That meant moving the blocks, taking x-rays, checking the placement and continuing that process until everything was correct. It took a long time and Matthew was really getting tired. Finally, the radiation treatment was ready to start. Matthew climbed onto the “torture chamber thingie” and we left, the huge, heavy door slamming behind us. I sat in front of the monitor and when the radiation started the screen got all distorted. That is when it hit me. The reality of what they were shooting into my son hit me…and I lost it. I just sobbed. The radiation Doctor was so kind and she tried her best to encourage me. It is one of the most horrible moments this cancer Mom has had to date.
We finished treatment and headed back to the hospital. I ran to get some DDP. I was pretty frazzled and my head was pounding. I called Greg and burst into tears, I received my pep talk from hubby. Then I called Sally to get my “are you breathing, eating and drinking” talk. Fully in control once again, I headed back to Matthew who was saying “I feel funny”. I glance up at the pump and noticed they had hung a new drug while I was gone (which is a no-no). It is Cyclosporin, a drug used to suppress the immune system. So, I called the nurse (who I’m not really happy with at the moment) and asked if there were any side effects and she said “no”. Then I had another nurse come in and she listed the possible side effects most of which Matthew was having. He was flushed, tingling and extremely nauseous. The new nurse hooked him up to the oxometer and checked his vitals. He was given Benadryl and the drip rate was slowed down. Unfortunately, it was too late to stop the vomiting. Finally, the symptoms went away and he is now resting.
I had to let the new nurse know I wasn’t happy with the other nurse, and also asked that the chart be noted that I was to be in the room anytime a new drug was given. Hopefully that will help the situation. I always find out the possible side effects of any new drug so that I know what to watch for. Matthew is just so darn sensitive to most meds.
Ok that crisis is over…and we can rest until TBI part 2 this afternoon. Then once that is over we start the ATG. I’m a bit nervous (ok a lot nervous) about this infusion. Maybe a few extra prayers would be in order.
Speaking of prayers…..I received the following email this morning from my friend Mary, it brought tears to my eyes… a day of tears for dear ole Mom:
Debbie Roos suggested that we have a vigil for Matt on Thursday, Jan. 24th, the day of his transplant. I asked Fr. Tony if we could have Adoration in the chapel beginning after the 8:30am kids Mass and ending at 7pm Mass. He said that would be fine and he would be happy to do the priestly things for opening and closing. We need to have "adorers" there every hour of the day. Please e-mail me back a few different time slots so I can fill in the hours. I will e-mail you back your time. I realize this is short notice, but we will only need about a minimum of 10 time slots, and I am sure many, many more will want to pray with us. Please feel free to forward this to all your friends and family. Teachers at St. Charles and BD: could you please circulate this around the schools? Thank you! Please call me with any questions. 482-1022 I'll send out a final e-mail with assigned times on Wed. night.
I would also like welcome a special group of people to Matthew’s site. A month or so ago I received an email from an instructor from University of St. Francis. She was letting me know that she has followed Matthew’s site for awhile and was also an instructor of Pediatric Nursing. She wanted to know if it would be alright if she “used” Matthew’s site as part of her upcoming class. I was thrilled to know that maybe part of our journey could possibly impact future nurses, so I said yes! So, I would like to welcome the students from Kristin’s class to our little world!
Keep praying and don’t forget to send your family pictures, silly pictures, high school prom pictures from 1980 for our Network Wall.
Later……..
Love,
Nancy and Matthew
************************************************************
Sunday, January 20, 2008 5:14 PM
Afternoon Update:
Today has been much better than yesterday. Matthew is very nauseous but so far no vomiting. Hooray, I think we’re getting the anti-emetics schedule fine tuned.
We are watching the Pats vs Chargers game right now and both of us are cheering for the Chargers…a rare moment that we both agree. (sorry Digan Family)
Not only did I tackle the shower but I tackled the laundry too. I’ve been trying to figure out the best time to do laundry in the one washer/dryer room for the whole 5th floor. SIGH. I decided there is NO good time to do laundry around here. Just like the good old days in the dorm, people throw their wash in the washer and never come back. So, just like in the old days, I waited for 10 minutes and threw it in the dryer myself. It took several hours to do my 3 loads (due to the backup caused by the previous launderer). The door was locked to the BMT unit today for some unexplained reason, so you either wait until someone answers the phone and can get to the door, or you walk the LONG way around thru the hem/onc floor and work your way to the back entrance of the BMT unit. So, the good news is that I got lots of exercise walking back and forth from the laundry room to Matthew’s room to check in on him. The bad news, I re-aggravated my back lifting the weeks worth of dirty laundry tub. So, I think I’m going to have to do smaller more frequent loads. Oh yippee!
Counts are all still good, platelets are heading down but the rest are still good.
Today’s Counts:
Hemoglobin: 12.4
Plates: 123,000
WBC: 3,100
ANC: 2,449
Later………..
Nancy and Matthew
***************************************************************************
12:54 PM
Afternoon Update:
Day -4
Matthew is doing ok so far…in other words no puking!
We just completed Grand Rounds. This is a really cool concept. The team goes from room to room with their laptops rolling with them and they invite the parent out in the hall to discuss the star attraction. In our case that would be Matthew. There were 5 people on the team today and me. They review Matthew’s labs, any issues and the upcoming plan for the day. They also ask for input, feedback and questions from me. I just love this concept. They definitely make me feel an important part of the team. Plus I always have a million questions and they are very patient and answer everything.
Tomorrow Matthew will start ATG for 3 days. This is actually an antibody infusion from a horse. Its job is to seek out the T-cells and mark them so that they are destroyed by the chemo and radiation. The goal is to totally eliminate Matthew’s T-cells, so there are none left when it’s time to transplant the donor cells. We don’t want Matthew’s cells there because they obviously grow cancer cells and we don’t want his T-cells to go out and attack the donor cells as being foreign bad cells. Isn’t that all amazing? There are a boatload of possible reactions to the ATG since it is a not only a foreign cell but a foreign species cell being dumped into the body. It is an 8 hour infusion (may go slower if he has reactions). He will be on a cardiac monitor and oxometer to be sure he’s not reacting badly. He may get fevers, rashes or worst case anaphylactic shock. We’ll need lots of prayers tomorrow.
Also tomorrow we will have TBI twice. He will be transferred by ambulance to the Barrett Center in the morning and the afternoon for treatment. The treatments have to be 6 hours apart. So, the nurses are trying to figure out when to do the 8 hour ATG infusion. My guess is we will do that after the 2nd TBI.
The intensity of pre-transplant conditioning is intensifying. We are getting the heavy duty amour out of storage now. We need your prayers!
I would also like to take a moment to ask you all to say a prayer for our donor. This lady is doing such an amazingly noble thing on Thursday. She is donating her stem cells to a complete stranger. All she knows is that a 15 year old boy has Leukemia and needs her help. Please join me in praying for her as she undergoes the procedure. Please pray for things to go smoothly for her and for her pain level to be as minimal as possible. I can’t wait for the day that I can thank her in person. For now, I hope God will let her know that she is a hero in our eyes.
Later………
Nancy and Matthew
***************************************************
9:54 AM
Good Morning,
Day -4
Mom slept like a rock, Matthew was up peeing all night. They are running a lot of fluids thru him due to the heavy duty chemo, in at attempt to keep flushing his kidneys and bladder. I think the IV's are doing the trick! (Plus he is not drinking at all due to nausea/vomiting)
We had some Mom & Matt time this morning before starting round 2. We cuddled and giggled and enjoyed our time.
Then I had to brave the “shower line”. It kind of reminded me of my college days only this time there is only 1 parent shower for the entire 5th floor. Isn’t that crazy? (Obviously a male designed this portion...no comments...y'all know its true!!) While I was waiting I happened to notice a sign that parents can get awfully desperate during their incarceration here. The pop machine takes CREDIT CARDS…..I just found that to be pretty darn funny……ok amusing…..ok it took my mind off of the other stinky Mom’s in line with me for the shower.
The pre-chemo meds are going now and we are on target to start round 2 of Cytoxin at 10:30. Please join me in prayer if you can.
Later…………
Nancy and Matthew the brave warrior
*****************************************************
Saturday, January 19, 2008 10:57 PM
Night Update:
Day -5
Matthew is still feeling awful. He is sleeping right now thanks to all the meds they gave him for nausea. He did manage to eat several saltine crackers tonight. I’m hoping he can sleep peacefully so he has the strength to do this all over again tomorrow. YUCK.
We continue to receive emails and guestbook messages from all over the world and Matthew’s Worldwide Prayer Chain is growing! Thank you all for joining us in prayer. We so look forward to emails and guestbook entries. Today, I read them to Matthew since he was feeling so crummy.
We are both anxious to see if there are any pictures of YOU in the mail on Monday! Hopefully, Matthew will feel up to working on our poster boards for all the pictures we have received so far!
My big challenge of the day is going to be how to unfold the chair bed in the dark without making any noise so as not to wake Matthew. Hmmmmmmm…I think I might have to start the chair bed process earlier in the evening going forward.
Love,
Nancy and Matthew
**************************************************
3:57 PM
Afternoon Update:
Day -5
Some pictures of our home away from home:
Big Ben………..a place of honor…….Mom is wondering where Peyton’s picture might be hiding, surely it’s just packed away???!?!?!!?!
Logan’s picture for Matthew……
Logan’s picture for Mom (right by my chair bed so I see it every night and morning)
Speaking of chair beds………and one of our views of the brick building….and more family pictures
Our view………..kind of hilly out there (compared to Fort Flat)….
Here’s Matthew right before his first round of heavy duty chemo……..
Here’s the Mesna to protect his bladder/kidneys…..
Here’s the chemo………
Within 20 minutes the vomiting started. They gave him some meds to help and it knocked him out for 2 hours. They had to wake him to get him to go to the bathroom unfortunately and the puking started up again.
While Matthew was asleep, I wandered down to the parent’s lounge to make a sandwich. I glanced up from the magazine I was skimming when I saw someone enter the room. I looked back down and then quickly realized I KNEW the man that was standing there. It was our friend Scott from Indianapolis. AKA Dean’s Dad. I was so shocked and so happy at the same time. We had a tearful but wonderful visit and Scott was able to wave thru the window at Matthew. Thank you Scott was driving over, it meant the world to me.
Please pray that the vomiting stops and that Matthew’s kidney and bladder are not damaged. Please pray….
Love,
The Dynamic Duo
***********************************************************
9:07 am
Good Morning:
Day -5
As you can see, today is day -5. We have officially begun the countdown to transplant. Day 0 is the day he will get his new stem cells, our focus is getting to day 0 safely.
Matthew slept pretty well with the aid of three anti-emetics. The nausea level has increased from the cranial radiation. The 1st round of heavy duty chemo is at 10am. If you have a moment, please say a prayer with me at 10am.
Matthew is very focused. He knows what is coming and is dreading it but he knows he has to do this and do this he will.
Yesterday’s counts were still good, but will soon begin the dramatic downslide. In fact, platelets are already dropping, but still ok. This is all to be expected in fact it is part of the plan to “completely wipe out his marrow”.
Yesterday’s Counts:
Hemoglobin: 12.9
Platelets: 164,000
WBC: 6,000
ANC: 4,860
Today’s Counts:
Hemoglobin: 12.9
Platelets: 144,000
WBC: 3,700
ANC: 2,780
More later…….keep praying……
Love,
Nancy and Matthew
***********************************************
Friday, January 18, 2008 9:17 PM
Pictures sent by Sally:
Doesn’t Matthew look great?? Well, so does Sally too….see the Steeler’s blanket?
Matthew and Mom ………..See the map and the picture of Big Ben? Hey, how come Mom's circles are darker than Matthews??
*****************************************************
Hi Friends,
Oh what a long day today has been. I couldn’t sleep last night thinking about what was coming down the pike. In the morning, we loaded up our hotel stuff, checked out and headed for Matthew’s last cranial radiation (hooray!) They took more x-rays after cranial to make sure the lead blocks on the vest were placed properly. (All to protect Matthew’s lungs)
After that we headed to the hospital and managed to find a parking spot really close to the elevator. We headed up to the clinic and guess who called on my cell phone?? Saint Sally!! Yes, Sally drove all the way from Indianapolis to help us “move in”. She knew I had been very stressed about how I was going to get all our stuff from the van to the room with this stupid back of mine. Sally, as always, was a lifesaver. Even more important than her physically helping me lug all our things was her emotional support. Today was a tough day for me. Just getting us up here and on THIS floor was incredibly difficult. She made us laugh, she helped us decorate (we still need to do some decorating but we made a small dent), she even figured out how to set the clock on our clock radio (don’t ask). Thank you dearest Sally!
We had a steady stream of people stopping into our room all afternoon. PT, OT, Dietician, doctors, nurses, NP’s just to name a few. They all had something to explain to us….needless to say we may have absorbed maybe 50 percent of all they told us.
Our room is way down on the end of the hall and the good news is because our room is on a corner, we have TWO windows! Yeah! That ought to help the cheer factor quite a bit, plus we are far away from the general traffic so it ought to be a bit quieter! The bad news is that we are wayyyyyyyyyyyy far away from the closest parent bathroom….gulp.
The parent’s lounge was pretty full when Sally and I were unloading the food. There are two refrigerator/freezers and they were both pretty full. But Sally helped me mark all the frozen dinners and lunch meat stuff and also managed to find a home for it all. We also get one half of one shelf for our bread, soups and cracker type stuff.
Matthew already has to take a pill to protect his liver, he has to take it 3 times daily until day 100 and he has a mouth care regimen to do 3 times daily. Unfortunately, he’s nauseous so this is going to be a challenge.
We have lots of family pictures around the room, Logan’s handmade pictures are up and tomorrow we’ll find a nice spot for the signs from St. Charles! Sally brought us a US map and some smiley face stickers…so we are going to put a sticker on it for every piece of mail we get from each different location on the map! We are going to do a poster board for any countries outside the USA! The autographed picture of Big Ben is up on the wall beside the map. Matthew has his newly made (by Hayley) Pittsburgh Steelers blanket on his bed and is already having to defend his team! We have the cool blankets from Aunt Jodie and crew here too. (One on my bed and one on the rocking chair) Tomorrow we will start assembling our Network Wall. We have several pictures to put on poster board already! And now I have our address, so let the mailing begin!! Help us fill oodles of poster boards with all your smiling faces!!
Our address:
Cincinnati Children’s Hospital
Attn: Matthew Fackler - Room 507 – A5N
3333 Burnet Ave.
Cincinnati, Ohio 45229
Tonight they will start hydrating Matthew to help protect his bladder and tomorrow morning we start the heavy duty chemo (Cytoxin). Tomorrow is the official countdown to transplant. Please pray that the side effects aren’t too terribly bad tomorrow.
I’ll take some pictures tomorrow of our room, we are both too tired tonight. Keep praying…
Love,
The Dynamic Duo
Thursday, January 17, 2008 6:38 PM ET
Good Evening,
Fatigue won over ice cream. Our plan to go to Graeters was changed by the nasty radiation that caused an overwhelming amount of fatigue. After treatment, they also took more x-rays of his chest area to confirm the placement of the TBI was correct. It should save us some time on Monday when Matthew begins his Total Body Irradiation (TBI). They will transfer Matthew from Children’s to the Barrett Center by ambulance twice a day starting on Monday.
Seeing Matthew up on that “torture chamber-like contraption” was gut wrenching. I can’t believe this huge machine will be blasting my son’s entire body on Monday twice a day for 4 days. It’s almost too much for the brain to bear.
After we were done, we came back to the hotel so Matthew could rest. We watched Poseidon on HBO and took naps and ate some lunch. Matthew’s appetite seems to be dwindling a bit more today.
Tomorrow will be an awfully busy day. We need to pack up and check out of the Vernon Manor and then be at our last (hooray) cranial radiation treatment by 10:40. Then we’ll drive to Cincy Children’s and head to clinic. There they will hook him up to hydration and I’m not sure what else. Then we are admitted and the tough stuff begins. It’s all leading up to this moment………
Today was really our last day of freedom prior to months and months of isolation. To keep Matthew safe, we won’t be allowing visitors. I won’t be leaving the floor either to keep myself germ free as well. We can’t take the risk of infection or even a virus. He will have no immune system what-so-ever. So, we will enter the protective bubble of our little room on the transplant unit until his ANC is at a safe level.
We will be looking forward to reading your guestbook messages, email and of course seeing your happy smiling faces on our “Network Wall”!
Tomorrow will be getting settled into our room and hydrating. The chemo he’ll be getting over the weekend is some pretty nasty stuff, particularly hard on the bladder….thus the hydration. He will receive massive doses of Cytoxin starting on Saturday along with a drug called Mesna to help “rescue” the bladder. We’ll really be needing the prayers starting on Saturday….So, let’s keep the prayer circle going so that Matthew has prayers coming from all over the world!
With love and much hope……
Nancy and Matthew
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Thursday, January 17, 2008 8:38 AM
Good Morning,
We had a really good day and night yesterday! Fatigue seems to be the worst complaint for Matthew. We watched “We Are Marshall” on HBO last night, it was a good inspirational movie and kind of flows with our Never Give Up theme. Matthew and I cuddled up with a Diet Dr Pepper and a Code Red and enjoyed the movie and a few giggles together!
I was able to actually plunk out some year end work for my job. I have somehow managed to work through the electronic issues. I don’t have a printer with me, but I figured out I can have it printed in the office or by Greg at home and then faxed to me at the hotel. Amazing what technology has done for the concept of working remotely!
Today, we have to go back to the Barrett Center for cranial radiation #5. It should be a quickie appointment. Then after that, I think we might go back to Ludlow to try some Graeters Ice Cream.
Matthew’s World Wide Prayer Chain continues to grow (see above), we added an additional 4 locations yesterday!
Keep working on your pictures for our Network Wall….I will post our address tomorrow once we are admitted to the (gulp) Transplant Unit (double gulp).
Keep praying and Never Give Up!
Love,
Nancy and Matthew
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Wednesday, January 16, 2008 1:38 PM
Afternoon Update:
Cranial Radiation # 4 is done with 2 more to go. He sure is a trooper! We had to meet with the Radiation Doctor after the treatment so our visit was longer today. After the appointment, Dan (our favorite shuttle/valet friend) dropped us off at Skyline Chili so we could try the world famous Chili. It was really good but I don’t think Matthew could tolerate too much. Me on the other hand scarfed down the entire Coney/Cheesy dog (with all the works and the Habanero cheese) in record time. It gave me the bubbles for hours (burps for those needing interpretation). It was good stuff. We were going to walk over to Graeter’s Ice Cream (another recommendation) but we were too full. The Ludlow area was actually quite quaint. I guess it is where the University of Cincinnati college students hang out a lot.
Last night we did some web-camming with the little ones and Dad. It was fun. After the kids went to bed, we played some games online while using the web-cam. That was actually fun. So, if anyone has a webcam, we use Skype. I think you need to let us know your “user” name???
I think that’s it for now!
Love,
Nancy and Matthew
Tuesday, January 15, 2008 7:08 PM ET
Good Evening,
Today has been a much better day for Matthew. He is taking the Zofran around the clock and so far so good with the nausea. He has no jaw pain today either.
We took the shuttle to the Barrett Center for our 10:40 appointment. The folks are so nice there too. Cynthia at the front desk truly seems happy to see us! The techs are very professional and compassionate. They do their very best to keep Matthew in the lock-down mode for as little time as possible. The whole treatment and wait time was less than 6 minutes. We called for the shuttle and they zipped back to get us.
Matthew rested a lot today. He said he is completely exhausted. We played some games and I rubbed his back and we both took a nap.
Greg said Logan still has a bad migraine. Brittany’s foot is all better. Today was pajama day in Brittany’s class. She is also Star of the Week. So, it’s a big deal for her this week. Today she brought Goldfish for her snack but Caden didn’t like them and Sarah wasn’t there today. So much drama and she shares every detail…I love it!!
Did I mention that the Vernon Manor is a historic hotel? It was built in the 1920’s. And since it is so ancient finally aged, there is a sign like this in every room……
Some famous people have stayed here and the Bengals stay here on Game Weekend.
This room is a few doors down from our room…..
American Idol starts tonight….that’s always amusing!
Keep praying…the prayer chain continues to grow! Romania, Russia, Angola, Peru, Germany, Luxembourg and Holland chimed in today!
Love,
The Dynamic Duo
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Morning Update 7:58 AM
Good Morning (I think),
Matthew slept most of the night. He woke around 1am and tried to take his Zofran (for nausea) but just couldn’t since he was too nauseous. Luckily, he was able to go back to sleep and is still sleeping now. His next cranial radiation is at 10:40. I hope he can sleep for a few more hours.
I dozed off around 3am and woke to a Charlie Horse. (OUCH) I am guessing that is due to our great escape from the looming towering inferno! OR I am just getting old. SIGH.
Check out Matthew’s prayer chain…it is indeed reaching around the world (see above). We already have people praying in 8 different countries! Prayer is so powerful!
Hey, my friend Sally just came back from a trip to Arizona. Her husband ran in a marathon down there. They found a really cool sports bar to go watch the Colts choke play. She thought it was cool that she decided to send me a picture……anyone hear twilight zone music??
Well, I’m going to try to enjoy the few hours of calm that are left. Maybe I’ll read in the dark for a bit!
Please pray for the nausea to get under control, strength for Matthew as they clamp his handsome head to the table and for calm in our day.
Love,
Nancy and Matthew
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Monday, January 14, 2008 8:58 PM
Evening Update:
Well, the evening took a turn for the worse. Matthew’s jaw pain intensified and so did the nausea/vomiting. So, I called the on-call BMT doctor who said we needed to get him on oral Zofran and pain meds right away so he doesn’t dehydrate. Ummmmmm…I have no clue where a pharmacy is…and Matthew takes his oral meds with applesauce…I have no idea how to find a pharmacy and a store and not get lost and not leave Matthew too long. I want home.
Well, after some head scratching, the doc decided to run the prescription down to the hospital outpatient pharmacy which was due to close in 30 minutes. I called the front desk and asked if Dan the wonderful man that helped us last night could run me to Children’s and if he’d wait and if they had applesauce in the kitchen. Check, check, check. The staff at this hotel is amazing. They go above and beyond to help. I can’t say enough about the hotel and staff.
So, off we went to the pharmacy, Dan waited, the pharmacist had to work some magic so I only had to pay $10 instead of $289 dollars (thank you Mr. Pharmacist), Dan brought me back, Stacy at the desk ran for applesauce and Mom ran back upstairs to Matthew who was puking again and totally unable to swallow a pill. SIGH
I’m supposed to watch him (no sleep tonight) to be sure the vomiting is under control. If not, we’ll be off to the ER for fluids and IV anti-emetics. And we are only at day #2…ugh.
I called home while I was waiting in the pharmacy and Greg told me Logan’s head was bad and Brittany had a huge chunk of wood in her foot that needed dug out. I’m having the urge to giggle…..and it’s way too soon to start that frenzied giggling.
Well, I’m off for now….please pray that Matthew feels better so we can stay here at the Vernon Manor…we LOVE the Vernon Manor….
Nancy
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Monday, January 14th, 2008 5:46pm
Hi Friends,
Matthew and I headed to clinic around 11:30 for labwork and then down to the cafeteria for a bit of lunch. About ½ way thru our lunch, Matthew suddenly got dizzy and nauseous. So we had to scramble to find a bathroom, leaving our tray full of food. Luckily that feeling passed and we headed on our way to the Barrett Center for cranial radiation #2. After the treatment, Matthew felt dizzy for awhile but that too passed.
He just told me that his gland/jaw is starting to hurt. This was one of the potential side effects they mentioned. I hope it doesn’t get much worse. Tomorrow’s schedule is cranial radiation #3 and rest.
We web-cammed with Aunt Jodie and the gang! It was kind of fun. We gave them a virtual tour of our hotel suite!
Today’s adventure included a fire alarm in the hotel. Early afternoon, we were both relaxing when all of a sudden this loud screeching noise began. Since we are so close to so many hospitals and not exactly in the best neighborhood, we hear a lot of loud sirens and helicopters, so at first we weren’t sure what the noise was. We waited a bit and then decided it might be a fire alarm. So we ran to the window to see if the crowds were flocking out the front door…..nope. So, I called down to the front desk and we were told to evacuate. After a short discussion about shoes, coats, purse and possibly the laptop (ok, we left the laptop), we ran out the door, and down 6 flights of stairs. We soon joined the rest of the patrons in the lobby and covered our ears as the shrill alarms continued. Soon the fire department arrived…..no smoke smell…….no hoses being dragged in…….hmmm I began to think the laptop was safe. Luckily, all was fine and 40 minutes or so later the alarm went off and we headed back to our room. There is something about Matthew and I and fire alarms…it was a definite flashback to our time at Riley back in February 2005. That was the time we were planning our great escape from the 5th floor!
Keep the prayers coming …Matthew’s prayer chain is really growing!
Love,
Nancy and Matthew
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Sunday January 15, 2008 8:58 PM
Special Request: I have likened our wonderful support system to the network people on the Verizon commercials. We feel like all of you are surrounding us as we head to Cincy. We know even though you are not physically with us…you are with us. To help us really see that you are with us, we have a special request. We would like you all to mail us a picture of you and/or your family. We will be putting them up in our BMT room. That way, if times get tough, we can look at you all and feel that like the Verizon folks….you are all with us cheering us on! So, over the next week or so, if you could find your favorite picture (print it out if you are digital) and get ready to mail them. If you’d like to send or drop them off here that would be great, otherwise, as soon as I know our mailing address I’ll post it! I hope a bunch of the Dwenger kids can find a cool picture to send too!
Thanks
Nancy and Matthew
Howdy from Cincinnati!
The weekend was a whirlwind of events…all good except the “leaving” part. Friday, Brittany and I met our friend Debbie for lunch at the fine dining establishment called Burger King. After lunch Aunt Jen and Uncle Neal stopped by with our friend Nemo for a “see ya later”. Then Friday night, my wonderful hubby took me out for dinner, kind of our last hurrah for awhile…of course we were home by 8:30 being the wild partiers that we are! On Friday, Brittany brought home a banner signed by the St. Charles Kindergartners! How cool is that!?!?!
Brittany’s school sign is behind Aunt Debbie!
Logan brought home 2 prayer shawls made by one of our 7th graders….they are just beautiful!
Saturday was a complete blur of events. Matthew finished up his sophomore year of Algebra 2 in the morning! We are going to miss our Ms. Booth and Mr. Rusk! They were both wonderful teachers!
After “school”, Aunt Debbie & family and Aunt Susan and Grandma came to say “see ya later” too!
Here’s Matthew and Aunt Debbie’s gang:
Matthew and Aunt Susan:
Matthew, Brittany and Cousin Reagan…
Matthew and Grandma…
The Family yacking………
Mom and her sisters, Grandma, Britt and Reagan, and our hero Matthew…
Then around 4pm, the official send off party began. A whole bunch of Matthew’s friends and their families all came to say “see ya later”! We had a wonderful time! The last guests left after midnight!
Matthew and Sean boxing on the Wii…..who is winning??
Adorable Mrs. Stant……..
Mary and Mitch……awwwwwwww..
Some very awesome teens!
Cindi and Patrick……..
Sandy, the cookbook editor extraordinaire……
Logan having fun..
Charlie and Kathy……another awwwwwwwwwwww (come on Kathy, you can write in the guestbook, you can DO it!!)
Kimmie and Zach………….
Sean and his gal Katie…….they won the Cranium marathon game…..
Maggie and Matthew…….I think they might have come in 2nd place in the Cranium game marathon……
Gotta share the goofy hat with Maggie……
Playing Catch Phrase……the most awesome game ever created…..
This morning our friend Hayley dropped off a surprise for Matthew…..an official hand made, warm, and toasty Pittsburgh Steelers blanket!
We spent the morning doing final packing and re-packing…and finally the dreaded noon hour arrived. We gave each other lots of hugs, cried lots of tears and then Matthew & I jumped in the van and headed to Cincy.
3 hours and 10 minutes later we arrived at the Barrett Center for the 1st round of cranial radiation. Matthew found it to be rather difficult. They pretty much screw your head down with that mask. It really freaked him out quite a bit, but he did it! I was very proud of him. I could see him on a TV screen outside the radiation room and could talk to him via a speaker. I was watching the timer and kept telling him how much longer he had.
Here he is on the table waiting to start………
Here he is on the monitor outside the room…Mom was cheering him on from outside…..isn’t he cute? And boy is he calm…
After radiation, we checked into the Vernon Manor. We had a really nice man help us with our “stuff” and he also parked the van for us. The nice man told us that we could take the shuttle to the local Meijers. We were told by several that the Meijers was actually in a better and safer neighborhood than the Kroger’s we scouted out. So, we went on for our adventure at Meijers. We needed to get some food for our stay in the Vernon Manor. In fact, this place will shuttle us to Cincy Children’s and the Barrett Center. The nice man said he’d even take us to the nearest Skyline Chili (a recommendation by Michelle H from Lutheran)!
Well on a sports note, my Colts lost today but the other Manning managed to beat the Wowboys!!
I don’t know our mailing address yet for the Bone Marrow Unit. Well, I know the address to the hospital but not what our room number will be. I will post it here as soon as I know. So, keep working our your pictures to send us for our Network Wall. We already have several but need a whole bunch more!!
On that note, I’m going to say goodnight. It’s been an incredible weekend with so many unbelievable moments…..Our dreams should be filled with joyous thoughts.
Keep praying……
Love,
The Dynamic Duo
Thursday, January 10, 2008 10:31 PM ET
Hi Friends,
Too many tears…
I think today is the start of lots of tears. I cried more today then I have in several weeks. I found out today that the radiation insurance “issue” is still not resolved and until I started screaming at people I’m not sure it was going to be resolved. The stress of the unknown a mere three days before we leave is just pushing me a bit closer to the proverbial edge.
As I was racing to visit Jen my dear hair stylist, I was still ranting with my contacts at Cincy (not wise I know to drive while ranting so don’t lecture). Then I called my dear friend Sally who always reminds me to breathe during high stress moments. And then I walked into the salon and sat down in the chair. Dear Jen asks me what we were going to do with my mop so I can get thru the next up-teenth months…at which point I burst into tears. Poor Jen…..Jen proceeded to give me a hug and made all the hair decisions for me…as usual she worked miracles. Thank you Jen!
Today, I received a bunch of emails telling me that pictures for our “Network Wall” are being worked on. I also received 5 emails from people I don’t even know offering meals, errands and prayers. Friends of friends…family of friends….reader of Matthew’s caringbridge….All want to help….if that doesn’t make God smile I don’t know what will. Uh…yes with every email ….I cried. I’m just overwhelmed...completely….
When I came home, Logan handed me a picture he made with the school counselor. It says “I’m going to miss you Mom. I love you! Logan”. That of course made me cry. Then Logan shows us the most amazing sign that all the kids, teachers, and staff at his school (Matthew’s previous school) signed for Matthew. I think it was 8 feet long! How wonderful is that!!! (Thank you Maureen for taking such good care of my Logan!Thank you St Charles for being THE best school in the world! Way better than that other GREEN school!!)
Matthew and Logan being goofy while showing off the ultra-cool sign from St. Charles!
Matthew and Logan being handsome while showing off the ultra-super-dee-dooper-cool sign from St. Charles!
Don’t forget the Princess…she wants to show off the ultra-super-dee-doopeer-totally-awesomely-cool sign from St. Charles!
And how about that really sweet, adorable, heartfelt sign Logan made?
And then it was the little one’s bedtime. So, we went thru the normal bedtime routine which includes a kiss and hug for each. When I walked into Brittany’s room, she asked if she could sleep with me tonight. I told her she had school tomorrow so she needed to sleep in her big girl bed. And then (sorta like her Mommy) she burst into tears. I asked her what in the world she was crying about and she said “I’m just going to miss you Mommy…so much”. Any guesses how I responded? Yup….I burst into tears. Oh good grief…..so I crawled into bed with her and we both cried for a while. Brittany then stopped, rolled over, threw her arms around me and said “Mommy your breath is hot and you are making my shoulder burn.” We both burst into giggles and hugged and cried and giggled and hugged for quite awhile.
Then I came downstairs to tell Greg about poor Brittany and I burst into tears again.
I know things will all work out somehow but right now it’s seems to be a huge series of hurdles we have to jump over. Well, I do feel a bit better getting all this emotional stuff “out”. Thanks for listening!
Love,
Nancy (the emotional Mom) and her always sweet Gang
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Special Request:
I have likened our wonderful support system to the network people on the Verizon commercials. We feel like all of you are surrounding us as we head to Cincy. We know even though you are not physically with us…you are with us. To help us really see that you are with us, we have a special request. We would like you all to mail us a picture of you and/or your family. We will be putting them up in our BMT room. That way, if times get tough, we can look at you all and feel that like the Verizon folks….you are all with us cheering us on! So, over the next week or so, if you could find your favorite picture (print it out if you are digital) and get ready to mail them. If you’d like to send or drop them off here that would be great, otherwise, as soon as I know our mailing address I’ll post it! I hope a bunch of the Dwenger kids can find a cool picture to send too!
Thanks
Nancy and Matthew
Boy oh boy, the cookbooks are so amazing! Sandy’s husband Brad dropped off a huge box of cookbooks last night. I spent hours reading the cookbook (sounds bizarre but you just have to see them to understand) last night. They have family pictures in color, hundreds of delicious recipes and personal messages from those that submitted recipes. I laughed and I cried. I can’t thank Sandy, Dave, and Lucy (and anyone else I have forgotten) enough for all of their hard work!
Well, we are in the homestretch of our time at home. I’ve had lots of questions regarding our schedule so I thought I’d put it on here to keep you all “in the know”.
Sunday 1/13/08: Mom and Matthew leave for Cincy. Check into the Vernon Manor Hotel. (same place we stayed last week, an old historic hotel very close to both the Barrett Center and Cincy Children’s Hospital) 4pm – Matthew’s first Cranial Radiation, which is done outpatient.
Monday 1/14/08: Cranial Radiation
Tuesday 1/15/08: Cranial Radiation
Wednesday 1/16/08: Cranial Radiation
Thursday 1/17/08: Cranial Radiation
Friday 1/18/08: Cranial Radiation and admitted inpatient to Cincy Children’s and the Bone Marrow Transplant Unit.
Saturday 1/19/08: Start heavy duty IV chemo – Cytoxin
Sunday 1/20/08: Continue heavy duty IV chemo – Cytoxin
Monday 1/21/08: Start Total Body Irradiation (TBI). Ride in an ambulance to the Barrett Center. (rumor has is Matthew gets to blow the siren and they have cute female drivers)
Tuesday 1/22/08: Continue Total Body Irradiation (TBI).
Wednesday 1/23/08: Continue Total Body Irradiation (TBI) and start Testicular Radiation (hope Matthew isn’t glowing at this point)
Thursday 1/24/08: Finish Total Body Irradiation (TBI) and Testicular Radiation. And then the moment we have all been waiting for………the TRANSPLANT happens.
Friday 1/25/08 until ????: Wait for engraftment (new donor cells begin to grow) and deal with the side effects from the Cytoxin, Radiation and no ANC. Prayers will need to escalate at this point.
There you have it……our life thru the end of January…….assuming of course that nothing changes LOL.
We have been enjoying our visitors…Justin stopped by yesterday, and Matt a pal of Matthew’s stopped by too. Keep the visits coming!!
Love,
Nancy and the Gang
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Tuesday, January 8, 2008 2:51 PM
Hi Friends,
Today’s Heart Thumper:
The phone rings before 8 am and it is the billing lady from the Barrett Center in Cincy. They are the folks that are in charge of doing all the radiation. Well, this lady says something along the lines of this: “did y’all know we aren’t in your insurance network? And so you are gonna have to pay 70 percent of this huge bill. Just wanted y’all to know that.” GULP
Greg actually took the call and then as I walked in the house after driving the little ones to school, says “I have bad news”. He then plopped the news on the proverbial table.
Mom proceeded to panic. I’m thinking calculating what 70 percent of $50,000 is….or maybe it will be 70 percent of $100,000….how much does all this radiation junk cost anyways? DOUBLE GULP.
Since it was just a bit after 8am, no one was answering their phone yet at Cincy. I have a stack of biz cards you see and I started calling everyone in the stack. I finally got to the nice lady we met last week, who nicely told me just a few days ago, that the Today she says “I need to call the contracting department and see what we can do”. To which I say “so, should I not panic at this point?” She says “I don’t think so”. THINK? THINK?? THINK????????
And so we sit here calmly (haha) waiting until they call me back…get this…..tomorrow. I have a headache.
Matthew feels good! He is plowing thru Lit and Algebra 2 at super human speed. I still marvel at his tenacity! I think he is actually enjoying his classes. Both of his tutors are wonderful people who are becoming a friend of sorts.
Matthew’s pal Ernie stopped over last night to watch a movie with Matthew. We only have a few more days left of “hanging out with friends time” so if you are one of Matthew’s friends and you are reading this, you might want to give him a call!
Packing is progressing. I have a corner in the living room designated as the “going to Cincy pile”. So far so good!
My cousin who lives in Atlanta received her cookbook today and she says she “just LOVES her new cookbook!!” I can’t wait to see the finished product myself. If you are interested in ordering a cookbook, please email the email address located above (look up!!).
Keep praying and Never Give Up!
Love,
Nancy and the Gang
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Sunday, January 6, 2008 9:51 PM
Hi Friends,
What a great weekend we have had. Matthew was sore from his bone marrow aspiration but otherwise feeling good. My back is bothering me again, I’m beginning to think its stress related. Good news is they have massage therapists on the BMT unit for the patient AND their stressed out parents!
Greg and I ran some errands yesterday. We are trying to plan our last minute needs for our trip to Cincy. It’s hard thinking about what we’ll need for that length of time. I am starting to feel like we’re pulling it together though.
Half the family is in mourning today as their beloved Steelers lost the game yesterday. The other half of the family is still able to trash talk for at LEAST a week! I’m hopeful it will be even longer! GO COLTS!
Last night the Roos Girls came over for games and Matthew’s famous dip. We had a blast. For some reason, we tend to laugh hysterically when we get together!
This morning we spent the morning taking down the Christmas decorations. Now for those of you like Sally who have seen our Christmas inventory, it was quite an exhausting project. I had to take a 2 hour nap! I miss our decorations already!
This afternoon (and yesterday) Matthew got 2 more hours of math done with his tutor. Their goal is to have 2nd semester done before we leave for Cincy. Amazing huh!?!?!?!
For our avid guestbook contributors and readers…..Sally must video tape her live version of Soulja Boy! You go girl!
Tonight our friends the Schleters came over for Hot Wings and games! We had a super time with them as well! This week seems to be the week of saying goodbye. It is a happy thing to spend time with so many wonderful friends, yet we all know where this is heading……….Cincy!
Logan and Eric building their empires………
Matthew going in for the kill…….
Tom ready for anything Matthew can throw his way….oops might help if he used the paddle……
Mom loves her Greg…..
Kristin is either talking or instructing Ryan on how to bowl….my money is on talking!!
Greg sharing the finer details of tennis with Tom…
Brittany was the winner (thus the W) and Kristin was the loser (thus the L)And yes that is a Brittany sporting a Peyton Manning jersey GO COLTS……
We have the rest of this week to finish our packing. My head starts to spin if I do too much at a time. How does one pack for this type of an adventure? I guess we’ll muddle thru with what we have. The important thing is that Matthew is going into this feeling strong, healthy, in solid remission and all major organs functioning well. We have complete trust in Dr. D and the staff at Cincinnati Children’s. We have a willing donor and a backup donor. We are ready folks to beat this cancer once and for all!
Thanks for stopping by…please continue to keep Matthew in your prayers…
Love,
Nancy and the Gang
Friday, January 4, 2008 8:58 PM ET
Hi Friends,
We are home sweet home! Today was an incredibly long day. We had to get up at 5am so that we could get everyone up, thru the bathroom, dressed, packed and over to the clinic by 6:30. Yikes!
Matthew had his spinal tap and bone marrow aspiration done bright and early and all went well. In fact, Dr. D called me (later in the day) and (trumpets blaring….) Matthew’s spinal fluid was clear and the bone marrow was filled with good, strong, beautiful healthy cells! YEAH! Matthew is still in remission!!
After the recovery from the two procedures, we ran to the cafeteria for a quick snack and then on to Cardiology for an Echo and an EKG. After that we headed back to the cafeteria for lunch! We were all starving by this time and feeling sorta tired.
Matthew’s last test was at 3pm. It was a PLF. A Pulmonary Lung Function test. It was kinda bizarre too….He had 3 sets of tests all in this little machine. Two of them the door was open and 1 the door was closed. Can you say claustrophobia???
Hmmmmmmmmm, this thing looks weird………but ok let’s go…….
You want me to do what?????
Ok, I’m blowing as hard as I can……..
Ok, Mom here is the goofy picture already……..I’ll even pose with this stupid blue thing on my nose!
You’re gonna close the door????????
That makes me so sad…….. NOT!
Boy are we glad to be home!! I feel much more comfortable with the hospital and the area now. I have the layout of the hospital figured out, the parking garage (which is completely underground) figured out, where the radiation place is at, where the hotel and Ronald McDonald House is at, and best yet….a safe Krogers! I think Matthew and I will be just fine all by ourselves! Now, we just have to layout what we are going to bring with us for this adventure and how to pack it all up! So much to think about. But for tonight, we plan to relax and wallow in our joy that Matthew is still in remission and that we have a willing donor (actually 2!!) lined up!
Thanks for all the fun guestbook messages. We all enjoyed reading them! Thank you also for the prayers! We need them!
Love,
Nancy and her Glad to be home Gang
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Thursday, January 3, 2008 7:58 PM
Hi Friends,
We survived another long day at the hospital. This morning Matthew had a GFR test. This test basically is to check his kidney functions. Unlike the radiation department, the nuclear medicine department is a bit cheerier…uh….until I leaned down to pick up my purse and noticed the can marked CAUTION – NUCLEAR WASTE ONLY…..sigh.
The GFR test was painless but long. They shot him up with this nuclear stuff that the tech says “it’s like a mild acid”…..uh huh…..and then they shoved him under this picture taking machine. They took pictures for 11 minutes and then we were free for two hours. What they did was shoot this acid-type stuff into an IV and it goes to the kidneys. Then you can see the kidney’s “lite up” on the screen. Then they want to see how quickly the kidneys move the “stuff” out and into the bladder. After 2 hours, we came back to that department and he had to have blood work done every half hour for 2 more hours. And the exciting news….I took a picture of Matthew’s kidneys!!
The rest of the day consisted of meetings with people to discuss all the details of the looming transplant. GULP.
We have to be up at 5 am and over to the surgery clinic for the Bone Marrow Aspiration and Spinal Tap by 6:30am, so I’m going to close now. We have a zillion tests tomorrow after the BMA and tap, including an Echo, EKG and Pulmonary function test. It will be a long and exhausting day. Please pray that all the tests come back fine…especially the aspiration and tap…we NEED for Matthew to still be in remission.
Ohhhhhhhhhhhhh, yes cannot forget the pictures!!
Here’s Matthew on the table ready to get the NUCLEAR stuff shot in…..he’s grinning because he KNOWS Mom is sneaking beside him to snap the never-ending pictures….
All shot up (is he glowing?) and ready to slide into the picture machine….
See the monitor over Matthew’s head? He’s watching his kidney’s light up…..weird stuff folks….
Here’s Brittany checking out Matthew’s glowing kidneys….
And here they are folks……..Matthew’s glowing kidneys on the right half of the screen….aren’t they the most adorable kidneys you have ever seen?!?!??!
Ok, it’s 8Pm, and we are going to bed now…..
Love,
Nancy and her precious gang of monsters!
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Wednesday, January 2, 2008 5:58 PM
Hello from Cincinnati!
We survived the nasty weather on our way to Cincy this morning, passing multiple cars in the ditches and we arrived at Cincinnati Children’s only 1 hour late. Matthew had a checkup and all was good. They also took over 20 vials of blood for a whole bunch of blood tests and research as well. After that we headed to the Barrett Center for the radiation consult, another checkup, a Q&A session with doctors, measurements, and preparation of the mask and lung protection thingie. We also took a tour of the room that Matthew will have his radiation treatments done. The whole process is kind of freaky actually.
Me, being me, took a zillion pictures today……
Here’s Brittany checking out the play area of the Oncology Outpatient Clinic…
Here’s Matthew patiently waiting his turn for a checkup…
Here we are at the Barrett Center for our day at the radiation place. Matthew is waiting patiently again….
This is what the mask looks like before they warm it up in the “hot water bath”…
Preparing Matthew to be fitted for his mask…….
The mask is warmed up in the hot water bath and then it becomes soft and pliable. Once it is soft it is “formed” to Matthew’s face. This mask will be used when he gets the cranial radiation. It will hold his head in place so the radiation goes exactly where it’s supposed to go.
Check this out man…….
Look how cute Matthew is…now that mask is kinda spooky….
Anyone else think he looks a bit like the dude from Halloween??
Now we form the “jacket” that will contain lead blocks to help protect his lungs. This is what the piece looks like prior to the “warm water bath”…
After the bath the material is soft and pliable like the mask…..
It sure takes a lot of folks to do this project…….
Here is the finished product…
The doc thought he would want to show off his “six pack abs”….
Here is the radiation machine that will shoot photons (I think they are called photons but maybe I made that up) into Matthew….
Here is the mid-evil torture chamber the seat Matthew will sit on during his 20 minutes or so of daily total body irradiation………
That’s the scoop on the radiation gig…..
I spoke with the transplant coordinator today and I received some great news. The CMV positive donor has confirmed that he/she can donate their marrow on the 24th! This wonderful person will be going for a physical on the 8th and once he/she is cleared to be medically able to donate, we will know more specifics about the donor, such as age and sex. The donor will know that Matthew is a 15 year old male with Leukemia. That is all we will know about each other until 1 year after transplant. If both parties agree, we’ll be able to find out about each other! We are so relieved that this donor has agreed and is able to donate on the date Matthew needs the cells. A huge sigh of relief coming from us!
We are all settled into the hotel. Matthew and Logan are investigating the digs. Brittany is drinking Candy Cane Hot Chocolate the nice doctor at the Barrett Center gave us. Greg is watching Star Wars and I’m writing to y’all.
Hey, rumor has it the cookbooks are shipping out on Friday. Be sure to order yours today! See above for ordering details!
Thanks for checking in on us. Tomorrow is another full day of tests. The longest test is the GFR test. It will take 4 hours and this test will check out his kidney function. Please say a prayer that all goes well and Matthew’s kidneys are A-OK! Hmmmmmmm, I wonder if I can take a picture of Matthew's kidney LOL!
Love,
Nancy and the Gang
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