History

Wednesday, February 6, 2013 7:58 AM CST

Hello Friends,

We just recently passed a very important mark. Matthew is now 5 years post transplant! On one hand it's hard to believe it's been 5 years. On the other hand, when I stop and think about it, it feels like just yesterday. Life has a way of moving on and with the business of our lives there isn’t time to dwell on the challenges of Matthew’s eight year battle with cancer. But there are moments when it all comes crashing back. The 5 year mark caused me to pause and remember…..

I thank God daily that Matthew’s continues to enjoy good health and for his heroic donor, Martina! In my humble opinion I feel like I’ve experienced a miracle in my lifetime. Please continue to say a prayer for Matthew if you could!

Love,
Nancy and the Gang

Friday, September 21, 2012 6:47 AM CDT

Happy Fall of 2012,

It's been almost a year since I've updated Matthew's site. I was reminded the other day at church that some people still stop by to check in! So, here's the latest and greatest.

In a nutshell........Matthew is doing great!!

Ok, a few more details....

Matthew and Emily are heading towards their 2 year anniversay in January. They make such a perfect couple! Both of them were accepted into the Nursing School at the University of St. Francis. They spent the last few weeks of their summer shopping for scrubs, stethoscopes, BP cuffs etc so that they can begin their clinicals.

Matthew is working 2 part time jobs. The most exciting is his job at Lutheran Hospital. Yes, the hospital that he spent a huge chunk of his childhood at is now his employer. Each week I get a "So & So says to say hello"! I think they all must be in awe that their Matthew is all grown up and is working at the hospital instead of being a patient.

Other than that, he is a normal 20 year old college student...Thanking God daily for that!

I also continue to thank God daily for Martina...our herioc donor without whom I might not be writing such a positive update!! :)

Thank you to you our faithful readers and prayer warriors! You played such a huge part in all of this as well!

Much Love,
Nancy and the Gang

Monday, December 12, 2011 7:08 PM ET

Day 1416 post BMT

Good Evening!

As they say "no news is good news"! In our world that phrase holds a lot of truth. Matthew is doing quite well. We have our 4 year post bone marrow transplant testing and checkups in Cincinnati at the end of this month. Sometimes it's hard for me to understand where the past 4 years have gone! Other days something will spark a memory from that very difficult part of our lives and the tears will flow quite freely.

Matthew is enjoying his second year of college. He is now going to the University of St. Francis and is still a nursing major. Matthew's girlfriend, Emily, is also attending USF, and like Matthew wants to be a Nurse.

Martina (our heroic donor)if you are reading this, please email me. I have sent you a few emails but I don't think they are getting through to you!

We continue to thank God for Matthew. If you can, please continue to keep Matthew in your prayers.

Love,
Nancy and the Gang

Friday, June 3, 2011 8:27 AM CDT

Good Morning!

Yes, I know it has been a few months since I've updated! I'm thrilled to let you know that Matthew is doing great!

He finished his freshman year of college in early May. A few days after coming back home he had 4 wisdom teeth dug out. Gosh, how normal is that? The funny thing was that the dental assistant knew Matthew and his story. Her daughter went to Bishop Dwenger High School with Matthew. He did great with the teeth but after all he's been thru I'm thinking that was like a walk in the park.

The following Friday, we headed to Cincinnati for a checkup. Everything looked awesome! His bone density scan showed that he is exactly where should be! His appointment with the eye doctor went well too. They have checking him for cataracts, dry eye syndrome and Graft vs Host disease...all potential fallout from a bone marrow transplants. He is continuing to get his "baby" immunizations. He is slowly catching up with all of them. Transplants wipe out all built up immunities so he has to start completely over.

And then that Sunday, Greg and Matthew headed off to Cedar Point. Matthew is working at the park again this summer. He is living in a nicer dorm with his good buddy since 1st grade, Sean. He also received a promotion to supervisor this summer. I'm so proud!

I think that's all the latest and greatest. I continue to pray every day that Matthew stays in remission and cancer free forever. Thank you for continuing to check in with our hero!

Love,
Nancy and the Gang

Sunday, February 13, 2011 3:29 PM CST

Hi Friends,

Tomorrow is Valentines Day for most people. Tomorrow for me is the day 19 years ago when my 2nd son, Matthew, was born. Tomorrow I have been given the gift of 19 wonderful years with my son, some more challenging than others but all have truly been a gift.

Matthew is doing very well. He has a wonderful young lady in his life. Emily is a wonderful girl and as I'm getting to know her I can see how much the two of them have in common. They are such a cute couple!

After much prodding, I have added a few new pictures of Matthew in the photo section! It took me awhile but I finally remembered how to do it!

Thanks for checking in!

With love,
Nancy and the Gang

Thursday, December 30, 2010 9:14 AM

Day 1069

So, you ask, what is going on with Matthew these days?

Matthew is a freshman at Ball State University. He lives in a dorm with his good friend Eric AKA Ernie for those of you that have followed Matthew’s story. He wants to be a Nurse and is working very hard to get into the Nursing School at BSU. The field is extremely competitive with only 80 slots per semester so it will be tough getting in. In my opinion, Matthew will make the absolute best Nurse in the world. The compassion and understanding that he will bring to the industry is unbeatable.

Matthew feels great and to look at him you would never know the hell he has been through with his 10 year battle with cancer. We are slowly working on getting him re-immunized. Since we destroyed his immune system to destroy the cancer cells all to clean out his marrow to receive the wonderful Martina cells, he has none of the titers left from all of his baby shots. His last checkup in Cincinnati went very well. We will go back after the first of the year for his 3 year studies (yippee for 3 years) and exams.

The other big Matthew news is that he brought home a wonderful young lady for us to meet. She is a very sweet young lady, quiet like Matthew. We spent the day with them both and it warmed my heart to see them together. I had many days where I wondered if I’d ever get to see him share his beautiful self with a young lady.

All and all, he is doing great, living a normal 18 year old type life. I thank God every day for his gift to the world and to me….my son.

Love,
Nancy

Sunday, December 26, 2010 2:13 PM

Day 1065

Merry Christmas 2010! Yes indeed a very merry Christmas. As we opened our gifts on Christmas morning, I paused to thank our Lord for my family, my very healthy family. For a fleeting moment flashes of other not so healthy, not so calm, but always meaningful Christmases flew across my brain. Christmas of 2000 memories slid through my mind. A newly diagnosed 8 year old Matthew, cheeks and belly stretched to the ripping point from those oh so lovely steroids. Christmas of 2004 a 4 day post relapse Matthew was so sick at Riley’s Children’s Hospital in Indianapolis, a fungal infection in his throat kept him from talking to us at all. I remember Greg trying to convince the Oncologist that we were perfectly capable of giving Matthew his IV chemo at home. Yup, we were “cancer experts” now. Christmas 2007 a gravely ill 2nd relapse Matthew finally had several white blood infection fighting cells in his marrow so that we could be home for Christmas. I remember thinking that day, as we faced the horrors of his upcoming bone marrow transplant, that this could very well be our last Christmas with Matthew. Fast forward to December 25th, 2010, as I gazed upon my very healthy son, now a young man, I couldn’t help but smile and once again thank God for the best gift a Mother could ever hope for……..her son.

Merry Christmas everyone…..and as you look upon the baby Jesus in your Nativity set, Christmas cards, gift wrapping….remember to thank God not only for his son but for your family as well.

Love,
Nancy

PS Would ya look at the DAY above? Day 1065 since transplant!! Yahoo!!

Saturday, August 7, 2010 8:21 AM CDT

Day 924

Can you believe it’s been over 900 days since Matthew’s donor, Martina, gave Matthew the gift of life? In those 900 days a very sick boy has grown into a healthy young man. That young man has graduated from high school, found a great summer job which by the way forced him to take the next step towards independence, living on his own 3 hours away from home. The next big step is about to happen in less than two weeks.

We will drive to Cedar Point next week to pick up Matthew. I feel like shouting from the roof top “Matthew is coming home, Matthew is coming home”! If you have ever seen the movie Christmas with the Kranks or read the book Skipping Christmas, you will find a similarity with the Kranks shouting “Blair is coming home, Blair is coming home”. I, however will NOT being fake baking my 40+ body in a bikini!

Matthew will be home for just under a week and then we take him Ball State University where he will start his journey of higher learning. I’m so excited for him and thrilled that he is able to follow his dream of becoming a Pediatric Oncology Nurse! I think he will make the best nurse to ever walk a hospital hall. He is not only smart, competent, loyal but also compassionate. He has walked in those cancer-kid shoes for way too many years. If anyone can truly understand that journey, it will be Matthew. He can be a ray of hope during some very dark days for so many children. The future is unlimited and Matthew appears to be ready to reach high and succeed.

I’m proud to be his Mom.

Love,
Nancy and the soon to be whole again gang

Sunday, July 11, 2010 11:56 AM

Day 904

Wow, what a month this has been since Matthew graduated from High School. We took Matthew to Cedar Point on June 7th. I was a soppy mess the entire day BEFORE he left, but I did pretty well on the actual day itself. My wonderful son called me that night around 10pm just to be sure I was “ok”. Matthew is living in a dorm that is located right on the Cedar Point property (right behind the Blue Streak for those of you that know the park). The dorms are ancient and we are guessing they were built in the 1920’s. They are not air conditioned so it is a wee (haha) bit hot. He works 6 days a week. 7am to 3pm. He is very tired when his shift is over. I think the heat and just the fact that he doesn’t have the stamina that most kids have. The first week was hard on us both but he is doing well now. He has made a bunch of friends and when he’s not sleeping they are taking advantage of the activities that the park sponsors, riding the rides, going to the water park or just hanging out!

Last week, we took a trip to visit Matthew. He had to work, but we were able to hang out with him after work until late in the evening! It was sooooooo great to see him!

Our day at the park was interesting. The very first ride we went on triggered a migraine for Logan. We spent a lot of the day riding the train, the cable cars, the antique cars and the Ferris wheel LOL. We did manage to sneak in a few more roller coasters but the best part was hanging out with Matthew. Matthew and Greg did some of the bigger rides after work, so everyone seemed happy!

After our day in the park, we headed to a great indoor/outdoor water park called the Kalahari. I highly recommend the park. It is so clean, lots of water slides, my personal favorite lazy river, and an awesome hotel room. Matthew joined us for the afternoon and evening which was a lot of fun!

After Matthew got off work on Wednesday, we all headed back home. Matthew immediately ran out to hang out with his buddies. I think he really enjoyed being home. Bright and early the next morning (I’m talking 5am), Matthew and I headed to Ball State University for a 2 day freshman orientation. It was a very well run orientation and we both learned a lot. When the orientation ended at 3pm, we headed back to Cedar Point. I dropped him off at his dorm and then made the 3 hour drive back home.

I AM TIRED!!

Life is good! We are so thankful that Matthew is doing so well and is able to enjoy a normal life!

Love,
Nancy and the Gang

Saturday, May 29, 2010 9:12 AM CDT

Day 854

Almost 10 years have passed since I heard the words that changed our world. “Your son has Leukemia”. At that moment the whirlwind of a disease called cancer changed every essence of our lives. At that moment my son became a fighter and my hero.

Our family started on a journey that most families only see happening in the movies, like one of those sappy Lifetime Movie Channel movies. You know the lives that only happen in the movies….no one really lives that type of life you know. Well, it doesn’t just happen in the movies. Ali McGraw isn’t the only one to fall in love, get leukemia and then die in Ryan O’Neal’s arms. No, it happens in real life. It happened in MY life.

As we progressed thru the years, our lives began to change shape, adapting to the disease but never letting it control our lives. No, my son refused to let the disease control him. Rather, he controlled the disease. He ran cross country on chemo, he went to school, he was confirmed, he had fun with friends, he had sleepovers, and he controlled his life. Then one day the cancer got more aggressive and decided to come back once the poison was eliminated from his body. For a moment, our world shattered once again. But my son picked himself up and decided to take control again. Life moved on, school, cross country, camping, friends and family. His ‘never give up’ motto began to merge stronger and fiercer. Until that day in October of 2007 when the unimaginable happened….the cancer was back for the 3rd time this time in his spinal fluid and brain. Tears, disbelief, pain and sorrow filled the room as the doctors and nurses told us the monster was back. BUT once again, my son put on his fighting boots, stood up and told the monster, I WILL NOT GIVE UP.

He made it through the horrors of transplant. He spent a long hard year recovering from the aftermath of one of the most difficult medical procedures known to man. He never gave up.

All the while, he worked hard on his education. With the help of some very caring teachers, he kept up with his class by doing his schooling at home in our safe, germ-free home. His goal was to return for his senior year. He met that goal. After a two year absence he once again walked through the doors of Bishop Dwenger High School. He went to the Christmas Formal and was voted King of the Formal. He went to Prom and just had fun. He walked his way very proudly to his shining moment.

Last Friday, my tears started to flow. I sat in my office working on a slide show. I started with pictures from 2010 and worked my way back. As I wound my way through the years, the tears started to flow harder. So many years of being bald, so many years of chubby steroid-induced cheeks, so many dark circles, so much pain was visually slammed against my tear filled eyes. Greg had told me to be sure to find lots of pictures with friends. As I searched the pictures, I began to notice that so many of the 1000’s of pictures I have were of Matthew and ME. It hit me just how attached at the hip Matthew and I have been over the last 10 years. It was him and me fighting the monster together. He did the intense battling and me doing the Admiral-type-stuff. He was fighting cancer; I was fighting the medical community. I was challenging the doctors that were telling me my son only had a 10�hance of surviving. The hell with the statistics I would say. You do NOT know my son. He is a survivor. He will never give up. He will win.

And win he did. On Wednesday, we attended a Baccalaureate Mass and Senior Awards dinner. When Matthew walked up on stage to receive his awards, he had NO idea what was about to happen. (yes I knew haha) He shook the Principals hand, received his envelope and started to move across the stage as all of his previous classmates had done. The Principal whispered “stay here Matt”. The Vice Principal, who was in charge of reading each student's names and the awards they received, began to tell the audience of over 1000 people about a new annual award. The new award was the Matthew Fackler Perseverance Award. He explained the criteria as this “This award recognizes a senior who has endured a difficulty, hardship, hurdle, obstacle, complication, trial or tribulation during their high school years. This individual has displayed determination, dedication, diligence, persistence, endurance, stamina, steadfastness, tenacity and a ‘never give up’ attitude. (Insert tears). Then he said something along the lines (my mind went blank at this point) of we are happy to announce the first recipient of this award goes to a young man who has fought and beat cancer three times, kept up with school, and is not only graduating on time, with his class AND with honors. At this point over 1000 people jumped to their feet and cheered for MY son. My amazing son was recognized by his peers, his family and complete strangers. (there goes my 3rd pair of contacts since Friday).

And so I continued to cry my way through this week and the whole cry fest culminated into an amazing graduation ceremony last night. The ceremony was respectful and prayerful. Each student was recognized, their friends and family happily clapping as they received their diploma. Each student had chosen a quote and it was displayed along with their senior picture on the large screen on-stage. My eyes were still dry until the moment they called my sons name. MATTHEW KENNETH FACKLER. He proudly walked across the stage with his smiling picture behind him (uh oh tears starting) and he met the principal midstage and as he received his diploma (gasp) the applause increased (as did my tears). The applause was thunderous (thankfully covering up my snorts and sniffs) as he continued the walk across the stage.

I think the emotions of this past week were like a dam that holds back the river water. It holds it back until it can hold no longer and when it breaks the water gushes non-stop flooding everything in its path. Yes, my friends, my dam finally broke. I have cried many tears over the past 10 years but these tears were different. They were happy tears, they were overwhelmed tears, they were proud tears, they were tired tears, they were in awe tears, they were grateful tears, they were blessed by our Lord tears….

I am the most proud Mommy to ever have a child graduate.

Love,
Nancy

Monday, March 22, 2010 4:32 PM ET

Day 786

Ok, after some gentle nudging from some loving friends, I’m updating the site! You know what they say about “no news is good news”!?!?! Well, that is the case here.

I’m happy to share, that things are going very well for our Matthew. He is winding down his senior year of high school. I’ve been busy nagging him about who he is asking to Prom (sorry Matthew I’m using all weapons in my arsenal)!

He has made the very important college decision and is busy applying for scholarships. He will be attending Ball State University in Muncie Indiana. The campus is about 1 hour and 30 minutes away from ME….GASP. We were very impressed with their nursing program and the going away to college experience will be invaluable. I’m trying very hard to prepare myself for this……sniffle sniffle.

Just last week, Matthew dropped another bomb on me…….It looks like he has landed a job at Cedar Point Amusement Park. For those of you that are not from the Midwest, it is a large (and really fun) amusement park in Sandusky Ohio. It is about 3.5 hours away from ME (notice this is all about me, me, me??). It sounds like a super fun opportunity. He will be working 6 days a week (thus not able to come home to see ME ME ME) and most likely 48 hours/week. When he’s not working it appears he gets to utilize the amusement park and the water park. He will live in a dorm/apartment. They have all sorts of fun activities for the “off-times” and a cafeteria for yummy (maybe) food. It sounds like a great time and a lot of work!

So, instead of having until August to prepare MYSELF for this separation thingie, I have until the end of May.

Speaking of the end of May, Matthew graduates on May 28th and will probably leave (ME ME ME) for Cedar Point the next day. We are debating the big Graduation Party date right now. Sigh.

I just love all this normal teen stuff. And I know I will survive (wail) this whole thing somehow!

Logan on the other hand is having a rough month and a half. He ended up with a 24/7 non-stop horrible migraine. He was throwing up, not sleeping, not eating and missing a bunch of school. We kept trying different meds and finally ended up putting him in the hospital for 5 days. He was on adult strength morphine and Benadryl and steroids and NO RELIEF happened. Finally, a few days later the migraine cycle broke but after only a day of relief it came back. We are trying Imitrex as an abortive drug and I’ve been working with him on telling us (whether at home or school) the minute the migraine starts. We have had a bit of luck this week. Two times it stopped the migraine and once it reduced the pain. Our next step appears to be to check intracranial pressure which unfortunately is by doing a spinal tap….grumble.

Anyhoo, overall, except for migraines and my pending hysterics over Matthew’s departure, life is GOOD!! Praising God every day for that!

Love
Nancy and the Gang

Monday, February 15, 2010 10:37 AM CST

Day 751

Happy Birthday Matthew!! Glücklicher Geburtstag Matthew!!

Never Give Up!!! Geben Sie nie auf!!!

Our birthday journey over the past 10 years…….. Unsere Geburtstag-Reise im Laufe der letzten 10 Jahre…..

Matthew turns 9 - February 14th , 2001

Matthew turns 10 – February 14th, 2002

Matthew turns 11 – February 14th, 2003

Matthew turns 12 – February 14th , 2004

Matthew turns 13 – February 14th , 2005 Spent at Riley’s Children’s Hospital after 1st relapse.

Matthew turns 14 – February 14th, 2006

Matthew turns 15 – February 14th, 2007

Matthew turns 16 – February 14th, 2008 Turning 16 while recovering from a bone marrow transplant….it was quite the celebration!

Matthew turns 17 – February 14th, 2009

Yesterday Matthew turned 18 – February 14, 2010 We are thanking God and we are thanking Martina our donor and friend. Gestern drehte sich Matthew 18 - am 14. Februar 2010 bedanken Wir uns bei Gott, und wir bedanken uns bei Martina unser Spender und Freund.

Love,
Nancy

Tuesday, February 9, 2010 8:24 AM

Day 745

Hi Friends,

Our visit to Cincinnati went very well. Matthew’s labs looked completely normal and robust! We are waiting for the cardio and endocrine results still. Dr. D said Matthew looked fantastic. We don’t have to go back until May!

We hit some really nasty snow just north of Dayton but Matthew maneuvered us thru quite nicely!

Today we are getting hit with possibly a foot of snow. I came into work and got a call from Greg………..Martina called! Our donor called! Our hero called! And I missed the call……..waaaaaaaaaa. Martina, if you are reading this…. thank you for calling and I will call you soon. Matthew & I both have letters ready to send to you but we were going to get them translated in case you didn’t speak English! They will be going into the mail as soon as we can dig out of the snow!

Wow, what exciting times!

Love,
Nancy and the Gang

Thursday, February 4, 2010 4:30 PM

Day 740

Hi Friends,

This has proven to be a busy month and an especially busy week for us. Matthew has been accepted to three universities. He has received a scholarship to the local university and has several more in process. He has narrowed it down to one of the local schools and Ball State University which is about 1 ½ hour from home.

On Tuesday, we went to Ball State for a campus visit. We had a great time. The tour was very informative, the orientation session was also. We also met with the head of Nursing Admissions and took a tour of the Nursing School. We were blown away. Matthew is pretty close to making his decision but it sure is a tough one.

Last night Matthew and I headed to Cincinnati and today we started his two year post bone marrow transplant evaluation. His visit with the Ophthalmologist went great. His eye sight is perfect and his eyes are very healthy. NO CATARACTS!! He also had a Pulmonary Function test to check out his air bags. The tech compared today’s results to pre-transplant and 1 year post BMT, things look even better than the 1 year mark. Yahoo!

Tomorrow, he has 4 appointments so it will be a long day. I’m anxious to see what his lab results look like as it’s been 3 months since his last lab was done. I’m very hopeful that all will be A-ok!

It is nice being back in Cincy but we’ll both be glad to get home tomorrow!

Thanks for stopping by!

Love,
Nancy and Matthew

Thursday, January 21, 2010 8:17 AM

Day 726

In 3 days we will have another anniversary to celebrate. In 3 days it will be 2 years from the day Matthew received the gift of life from our wonderful and heroic donor. At 3am 2 years ago, they started the slow 9 hour drip of donated marrow. At that moment Matthew took his first step towards curing the monster that had followed him for at that time 8 years. In 3 days, Matthew will be celebrating surviving cancer for the start of his 10th year and with the grace of God he continues to thrive and live life.

We are anxiously awaiting word from our donor. I filed the paperwork a few weeks ago and I am bugging our BMT coordinator like crazy (sorry Sarah).

On February 3rd, Matthew and I will head to Cincy for 2 days of testing. It is his annual BMT evaluation. They do a throurough evaluation of most of his major organs and systems including checking for cataracts. Hopefully, all will continue to be fine!!

Yesterday, a friend told me about her sister-in-law who is working in Haiti trying to help save lives. The sis-in-law is a doctor and is working out of a house with absolutely NO supplies. I thought popped into my head…I realized I had boxes of unused medical supplies left over from Matthew’s transplant after care. So I decided to box everything up. What I didn’t know what how emotional that activity would be. As I sorted and bagged everything up, I remembered actually using all of the supplies. I remembered changing his central line dressing, I remembered changing his IV lines, I remembered drawing up IV steroids, I remembered the sterile gloves and sterile fields, I remembered the horrors of transplant. After I muddled thru all that emotional baggage, I realized I felt cleansed. I have been thinking about donating these items for a while but I couldn’t seem to motivate myself to do it. Would I jinx things? What if he needed it again some day?? What if????????? I without a second thought decided to do something good with all the items that were sitting here doing nothing but reminding me of the transplant horrors.

So, I now have 3 boxes of neatly sorted medical supplies. My next step is to ask YOU who might be reading this to consider doing the same thing. If you have unused, unneeded medical supplies please consider donating them to Haiti. If you can help, email me or leave a message in the guestbook and I will get you the details.

Life is good…we are so lucky …we are so blessed.

Love,
Nancy and the Gang

Saturday, December 26, 2009 9:01 AM

Day 700

And so our miracle December continues……..

The next amazing thing to happen in Matthew’s life was all about going to the Christmas formal.

At Bishop Dwenger High School, the Christmas Formal is for sophomores, juniors and seniors only. When Matthew was a sophomore he had just relapsed for the 2nd time. He was pretty darn sick in fact. He was desperately trying to get into a solid remission so he could head to Cincinnati for a bone marrow transplant.

That year around 8:30pm the night of the Christmas Formal this pulled up in front of our house….

Who was it in the Trolley?? An amazing group of High School kids that’s who!! Matthew’s best friends arrived to make sure Matthew was part of the Christmas Formal fun.

The next year was 2008; Matthew was a junior and was hard at work recovering from his transplant. Unfortunately, his immune system wasn’t strong enough to go to the Formal.

Fast forward to 2009. Matthew is healthy and Matthew attended his first Christmas Formal with his beautiful date Kourtney!

I was so happy that night as I watched my son and Kourtney. They are young, beautiful and handsome and most of all HEALTHY!! The tears of joy were most definitely flowing that night.

We spent a few hours at Kourtney’s house, taking pictures and eating some delicious snacks. We headed home. And I thought about Matthew and what he might be doing at the dance. The hours went by and I hoped so badly that Matthew would be voted King of the Formal. As the hours passed I asked Greg if he thought they’d announce the King and Queen early or late in the night. He thought early, so my hopes began to fade. As my hopes began to fade, I started to doze off. Then around 11pm my cell phone rang. I sprang from my recliner, dumped my purse on the table and grabbed my ringing cell phone. I could see it was Matthew calling…….

I heard a loud roar of kids in the background but all I could really hear was Matthew’s quiet voice saying “Mom, I won”.

And here he is…….King Matthew and Kourtney

And so for about a week, I was floating 12 inches off the ground. My wish for Matthew came true. What an amazing night for him!

Stay tuned for more Christmas miracles…….

Love,
Nancy
**********************************************

Day 692

I feel like I’m living a movie. Actually, I’m watching Matthew live a movie. I’ve decided Matthew is living his entire high school career in the month of December. So many wonderful things are happening to him. As his Mom, I’m blubbering all the time as I watch him living the life of a normal teen during his Senior year in high school.

The last quarter of the year has typically been a rough patch in our 9 year journey with cancer. Matthew was diagnosed in November 2000, he relapsed the 1st time in December 2004, and he relapsed the 2nd time in October 2007. Throw in a few hospital stays for things like pneumonia and influenza and you’ve got our “normal” last quarter.

So, this year I found myself holding my breath thru Halloween. Whew, we had made it without a crisis. Then I found myself trying not to hyperventilate as I remember Thanksgiving Day 9 years ago when Matthew was running a 106.7 temp. Well, we survived turkey day quite nicely. Then December and I began to feel a bit hopeful that maybe just maybe we had broken that nasty cycle of crapola that had plagued our last quarter of the year for so many years.

So far this month Matthew has found his first job and is now gainfully employed albeit it 12 hours or so a week. He’s busy making pizza for Little Caesars Pizza. Matthew got his drivers license and is an amazing driver. Matthew went to a formal birthday party and looked quite dapper in his 1st tuxedo! Matthew had an MRI of his hips and knees to rule out the dreaded AVN and by the grace of God he is perfectly fine!! Matthew asked his good friend Kourtney to the Christmas formal and she said yes!

Matthew's been accepted to two colleges so far!!

And now the exciting news of the week………..drum roll please…….. Matthew was nominated to the Formal Court. He is one of 5 young men that his classmates voted to the court. Gosh, I was so darn excited I could hardly contain myself!

And the biggest news of all….Matthew is feeling great. He looks fantastic and he is healthy. He is a miracle!

I’m on my knees thanking God for Matthew’s health, for Matthew’s December of a lifetime…for my son.

Merry Christmas everyone…and stay tuned for Formal pictures!

Love,
Nancy, the sappy Mom

Saturday, December 5, 2009 7:31 PM

Day 679

Our house is starting to look more like Christmas every day!!

And Matthew is starting to look more handsome and handsome every day!!

Matthew on his way to a Birthday Party….a formal one at that!

Darby checkin out this handsome dude….

Aren’t they adorable??

THE BIG QUESTION:

Did Mom cry???

Love,
Nancy and the gang

Wednesday, November 25, 2009 4:21 PM ET

Day 669

Here are coming upon our 9 year anniversary of Matthew’s diagnosis of Leukemia. I can clearly remember Matthew waking up Thanksgiving morning with a 106.7 temperature. Fear, panic and a bit of knowing was filling my brain. We had been fighting continuous infections for about 3 weeks. I knew at that moment we were facing something more serious than the rumored tonsillectomy. Gosh, what I would have traded for that to have been the case.

But here we are 9 years later, alive, thriving and loving life. We are so thankful to first and foremost our dear Lord. I don’t have enough room on this page to thank everyone else that has helped our family along this long hard road. I hope and pray that each of you know just how thankful we are for YOU!

Matthew continues to thrive. The only lingering issue is continued knee pain. The good, no make that GREAT, news is that the MRI showed no AVN (bone death). Another moment of thanks in order!

I received the necessary paperwork to find out who our incredibly unselfish, caring and heroic donor is. We should be able (assuming she is ok with it) to exchange information on each other in January. Gosh, I can’t even imagine how I’m going to sputter those first words…how do you thank the person that has saved your son’s life?? GULP!

Our next appointment in Cincinnati will be the first part of February for Matthew’s 2 year post BMT evaluation! Yahoo!!

Well, I’m really enjoying all this calm….calm is good….calm is very very good!

I’m thankful for so much! I wish to all of you reading this a very Happy Thanksgiving!

Love,
Nancy and the Gang

Tuesday, November 10, 2009 8:35 AM CST

Day 654

Well, we made it safely thru October. No H1N1. No cancer related crises. We had a few throat, tonsil, sinus infections but we maneuvered those quite well. I’m pounding on wood as I type this you know.

I think I’m finally moving a bit past my “I don’t know how to function when not in a crisis meltdown”. I decided on a spur of the moment to change my hair. I got it cut short (well for me anyways) and got it colored quite dark. I love it! It’s all part of my “you must get over this crap” plan! Stay tuned to see what I do next LOL.

Matthew is still experiencing a lot of knee pain, so tomorrow he will get an MRI of both knees and both hips. Please pray for some easy answers.

Life is good. God is good. I’m thankful every day for all the good in my life. I would love to hear from you……tell me in the guestbook what YOU are thankful for!

Love,
Nancy and the Gang

Sunday, October 25, 2009 9:16 AM ET

Day 638

Boy, it’s been a long time since I’ve posted. I’m pretty sure it’s because life has become pretty routine for us. FINALLY!!

Matthew is doing very well. We went to Cincy for an appointment on Friday. As usual, we drove down the night before and stayed with our friends at the Arcadia. It sure seems like our home away from home.

We headed to the hospital for our 9am appointment. We saw lots of old friends and received lots of hugs (in spite of the H1N1 panic)! The official word “MATTHEW LOOKS GREAT!” His lab-work looked perfect. Every count on the CBC was perfect, liver numbers were perfect, and all the other labs were wonderful. Yeah.

The only concern was his continued knee pain. Dr. D wants him to get an MRI of the knees and hips done just to see what is going on. So, we’ll be scheduling this very soon.

Logan continues to have migraines. We have decided to taper him off of his preventatives. We are seeing too many side effects and no real sense of his migraines being prevented or reduced much at all. We have tried so many different drugs and yet he continues to have 3 to 5 migraines per week. We will be trying some different abortives to see if we can find a drug that provides him so relief. We have tried 2 with no luck. We have a prescription for another to try.

This month is the start of the “dark months” for me. This whole Leukemia mess began around this time of the year. Matthew first began to get sick in October 2000. He was finally diagnosed in November 2000. He relapsed the 1st time in December 2004 and relapsed the 2nd time in October 2007. UGH. I’ll be glad to see January roll around. I do my very best not to dwell on the “time of the year” but the anxiety sure rises on an involuntary basis.

Matthew is in the middle of COLLEGE flurry. We have done two campus visits and want to get to one more. He took advantage of “free applications at many Indiana colleges week” last week. He’s applied at the ones that have sparked his interest. Wow, I can’t believe my baby is applying to college!

All in all, life is good. We are so thankful for Matthew’s continued remission. We thank God every single day. We do continue to have friends and family that are fighting the monster called cancer. Please keep Matthew, Pat, Dixie and our many other friends that fight every single day for their lives, in your prayers.

Friday’s Counts:

Hemoglobin: 15.3
Plates: 193,000
WBC: 4,400
ANC: 2310

Love,
Nancy and the Gang

Monday, September 28, 2009 8:17 AM

Day 611

Last night we attended the Light The Night Walk. It was a tremendous turnout. Fort Wayne is really starting to take notice of those fighting blood cancers! Each year the number of people walking is increasing! Yeah! Our team consisted of around 60 walkers. All walking in honor of Matthew! Team Never Give Up, you made us proud once again.

What would a walk be without some crazy pictures?????

Matthew & Greg hanging out with Nurse Shelly, Coaches Dan and Chris and Sean…

Matthew with the gorgeous Roos Girls!!

Jen, Grandma Mary, Triva, Matthew and Logan manning the Never Give Up table…

Where are the walkers??

Brittany and Hope carried our banner the whole walk!

No clue………

Cody & his lady friend, Matthew and Kimmie

STOP ALREADYYYYYYYY

Sally has the camera again…we don’t care…

Three happy gals…

The annual family picture (minus Justin who had to work) and nobody wanted to cooperate!!

Thank you to everyone who joined us last night! We really appreciate the never ending support!

Love,
Nancy and the Gang

Wednesday, September 23, 2009 2:04 PM

Day 606

Hey, did anyone notice that Matthew is over 600 days post transplant? What a thing to celebrate!

Matthew is doing exceptionally well. He is super busy, so busy in fact, I don’t get to see him much. Not an easy thing for Mom to handle! He is managing the cross country team at school and seems to really be enjoying it. He is very busy with homework and doing normal (yes I said normal) teenager type things! We head back to Cincy in about a month for a checkup. We’ll have to figure out the whole H1N1 vaccine thing when we go. They haven’t decided yet whether or not the BMT kids will get it.

Logan’s migraine situation is still an issue. He is better than last month thankfully, but still has 3-4 migraines a week. Poor kid.

Brittany is so busy too. She’s doing gymnastics, soccer, brownies and about a million birthday parties! She’s a social butterfly indeed.

Me? Well, I’m experiencing a bit of post traumatic stress I think. For some reason, I’m struggling with getting things done. I think my problem is that I don’t know how to function when I’m not in a continual crisis. Trust me I don’t WANT ANYMORE crises, but I do need to figure out my new “life”.

Sunday is the Light the Night Walk. Team Never Give Up will be there with over 40 walkers. If you would like to contribute or walk with us….here is the scoop!

Sunday, September 27
Lutheran Hospital Campus
7950 W. Jefferson Blvd.
Fort Wayne, IN 46804

Walk Distance: 2 miles

Check In: 5:00 p.m.
Opening Ceremony: 7:00 p.m.
Walk Start Time: 7:00 p.m.

To join Team Never Give Up:
1. Click on this link http://pages.lightthenight.org/in/FtWayne09/vinsonn
2. Once you are there, click on “VIEW TEAM PAGE”
3. Go to the bottom of the page and you will see “Never Give Up” as the team name
4. Look to the right and select “JOIN”
5. Fill out the information on the next page

To Donate:
1. Click on this link http://pages.lightthenight.org/in/FtWayne09/vinsonn
2. Go to “MAKE DONATION”
3. Or mail a check to: Nancy Vinson
5336 Hartford Dr
Fort Wayne , IN 46835
4. Make your check out to: The Leukemia & Lymphoma Society
5. You will receive a receipt for your taxes either method

Hope to see you there!

Love,
Nancy and the gang

Tuesday, September 8, 2009 8:50 PM ET

Day 591

First of all, I owe y’all an apology! I haven’t updated in a coons age. Logan’s migraine issues sent me into a tailspin for a few weeks, then school started and then I’ve been trying to gear up for the Light the Night Walk (Team Never Give Up) and then lastly, getting ready for, attending and coming back from the Lighthouse!!!!

On the medical front, things are going quite well. Matthew is doing very, very well and seems to be acclimating to school quite nicely. Logan’s migraines have calmed down from 24/7 to 3 to 5 a week. Brittany is about to lose a tooth!

On the Team Never Give Up front, we are close to $1,800 as a team. We have 20 walkers on our team! We would be honored if you would consider joining our team again this year. I’ll post more details later but feel free to email or call me for more details!

Now for the exciting news! We are basking in the Lighthouse glow! For those of you that don’t know, the Lighthouse is a Christian Family retreat for families with children surviving cancer. It is hands down the most amazing gift that a family that has been fighting cancer can receive. It renews the family, gives the opportunity for relaxation and fun, and most importantly it invites God to be a part of our lives during our stay. I can’t thank our Lighthouse family enough!!

We left bright and early last Wednesday for the Lighthouse near Santa Rosa Beach Florida.

And 3 stops later (Cincy, Atlanta and Fort Walton Beach), we arrived at the Lighthouse!

Very soon after our arrival I met up with 2 other Moms that I know from the ALL-Kids Listserv I belong to! How fun was that!?!?!?

Carrie (Leah’s Mom), Me, Teresa (Emilio’s Mom)

The kiddos raced to the beach!

Brett our awesome song leader…boy can he sing! And yes we are all still humming the Lighthouse Song.

Mom & Dad time……

Matthew did some boogey boarding (is that what it’s called??)

Our condo had a pool out front…

Our handsome Daddy…….

Daddy loves Brittany……..

Chilling out……..

We had the most wonderful family partners! Kimberly, Jeffrey, Brinkley, Austin and Tanner we love you guys and miss you already!

Kimberly with Brittany and Matthew

And don’t forget Tanner….

Who are you calling a HAM???

The Talent Show was a blast….

Our clan did their own version of Fear Factor…

Dad had to drink “pee”…ewww

Pinky had to eat “dog food”….

Elizabeth had to eat from a “dirty diaper”…..gag

And Dan the Man had to eat “Cow dung”……..blech…

All the kids performing the Lighthouse Song……

Pool Olympics was soooooooo much fun!!

The cannonball competition was fierce!
Go Buck!!

Guess who??

Our Condo-mate family was an amazing family by the names of Jeremy, Amy, Ella, Ava, and Adley. They were just an adorable family. Their little girl Ava had a brain tumor and when you ask Ava “what are you??” she proudly replies “I’m a MIRACLE”. What an amazing little 3 year old. We miss you guys!

Ava the miracle girl:

The LIGHTHOUSE CANCER SURVIVOR KIDS!

The Big Game Show was a fun, fun, fun, did I say FUN evening for the parents. I laughed so hard my face hurt!

Playing the Feud……..Go Bob!

The teams……

Our last night:
With Brinkley…

With Rocky….

Our last morning…

A special friend of Matthew’s:

Saying “see ya later” to our wonderful family partners…

After we left the Lighthouse we stayed over night in Fort Walton Beach. We visited a super cool aquarium!

And we even saw a bit of home while we were there…

And now we are home and are back to the real world…but we are refreshed, renewed and restored!

Love,
The Fans of the Lighthouse Gang

Monday, August 17, 2009 10:04 AM

Day 569

Today was the 1st day of school for Logan & Brittany!

Logan:

Brittany:

Darby sleeping on the WATER BED!!

And Bella joining in the fun!

Love,
Nancy and the Gang

Wednesday, August 12, 2009 8:13 AM

Day 564

Tidbits from MY house:

Brittany:
Brittany’s teacher sent a letter home the other day and in the letter it says she is to bring something in that reflects “Brittany”. So, I read the letter to Brittany and we have been thinking and thinking. Last night, Greg says “Brittany, have you figured out what you are bringing to school yet?” Brittany says “now what am I supposed to bring again?” Once again Dad explains and gives some examples. Brittany got very quiet and finally says “I know……I have an angel upstairs to bring!” Ba dum dum.

Logan:
Logan has been on steroids for the past 5 days for his migraines. Last night Greg was scooping up some spaghetti for everyone and he plunked down some pasta for Logan. All of a sudden Logan hollers “I don’t want spaghetti” and before we knew it spaghetti was flying off the plate. The truly hysterical thing about the whole incident was the look on Matthew’s (the king of roid rage) face…..he GOT it!

Justin:
Justin is working, working, and working. He did find time to squeeze in dinner and a Tin Cap game with us and Grandma last week! It was nice seeing my very busy oldest son for once!

Matthew:
Matthew’s recent lab work showed that he was suboptimal on his Vitamin D levels. Ok, here’s the thing. Matthew’s bone density is on the low side of normal and his knee x-ray showed osteoporosis. So, he needs calcium right? Well, in order for the body to absorb calcium it needs Vitamin D. Matthew is low on Vitamin D. He’s been taking calcium supplements with Vitamin D & K but they give him tummy issues. Where else can you get Vitamin D? Well one of the best places would be from the sun. Easy right? Uh, no….Matthew is supposed to avoid the sun like the plague. He is at high risk for secondary cancer including skin cancer…the sun can cause skin cancer. The sun can also cause the Graft vs. Host Disease to flare up and then he’d have to start the high doses of steroids again. Steroids cause bone loss…..he needs calcium….to absorb he needs Vitamin D…..the sun …..can’t do the sun…….Talk about a no-win situation. AGGGHHHHH

Nancy:
I have had this stupid problem with my Achilles tendon since Matthew and I were in Cincinnati. It hurts all the time. Now my elbow hurts all the time. Why don’t I go to the doctor you might ask?? Easy…he’s gonna say “it sucks getting old” and I don’t want to hear it!

Greg:
Greg and Matthew have been busy working on our patio since last fall. Some of you have commented on the lovely pile of rocks that line the gravel pit outside our kitchen window. Well, the good news is that the patio brick is almost completely laid now….and the next step is the retaining wall. We are getting oh so close but then again so is the one year mark…..

Just some tidbits……….

Love,
Nancy and the gang

***********************************************

Monday, August 10, 2009 4:13 PM

Day 562

Good news! Matthew is 100 percent donor cells! Yahoo! This is what we want and need. We never want to see any “Matthew” cells ever again!

More good news! Matthew’s immune system is looking terrific. There are a few sub-populations that are below normal but overall it is looking great. The hope is that when he is finally tapered off the steroids that his immune system will be back to NORMAL.

More good news! Speaking of tapering steroids, Friday is another taper day!

More Good news! Logan is working on his 2nd day free of a migraine. I think maybe the steroids helped! I’m cheering for a 3rd day tomorrow.

We still don’t have a plan on the “bone” end. The doctors are still trying to get together to discuss the next steps. Matthew’s knee pain continues so I’m not sure how he will handle all the stairs at school next week. We’ll see.

Gosh, I love good news days!!

Love,
Nancy and the gang

Friday, August 7, 2009 9:54 AM

Day 558

Logan’s MRI results came back “all within normal range”. I am soooooooooooooo relieved that the scary things they were “ruling out” were ruled out. WHEW.

On the other hand, Logan is going on his 4 weeks of daily migraines. He has only had 1 day without one since this “cycle” began. So as happy as I am that the scary stuff was ruled out I’m frustrated that we still can’t seem to get him some relief. We have another appointment this afternoon with the Neurologist.

Love,
Nancy and the Gang

Wednesday, August 5, 2009 7:40 AM

Day 556

Logan had the MRI of his brain done yesterday. It went smoothly. Logan was very brave especially considering how clunky and loud those MRI’s can be…nothing like adding some really loud noise to the day of a kid with horrible migraines. I think we should have the results today…I sure hope anyways.

No word back on Matthew’s test results yet. Rumor has it Dr. D is out of the country this week. SIGH.

Last night Matthew and I went to Verification Day at his high school, which is like a big long, crowed, go to many stations form of registration. I was highly amused by the response Matthew was getting. There were lots of “Matt you look great”, “Matt are you coming back??” “Matt we missed you” responses from everywhere. I sort of felt like I was trailing a celebrity! It made me feel good and Matthew being Matthew just grinned. Ahhh, the good things in life can be so uplifting.

Say a little prayer for Logan if you could!

Love,
Nancy

Monday, August 3, 2009 12:11 PM

Day 555

To continue the roller coaster ride for just a bit longer, let me share with you the latest regarding Logan and his migraines. After another rough week, his 3rd straight week with daily migraines, we headed back to the Neurologist on Friday. She changed the dose on one of his meds again and calmly said “we need to do an MRI of the brain ….just to rule things out”. I immediately felt my right eye begin to twitch and my stomach begin to clench. I had the sudden urge to hurl. We take him tomorrow morning to DuPont Hospital. Hopefully, we’ll have the results soon. I don’t like that hurl feeling a whole lot.

I’m still waiting to hear back from the BMT and Endocrine Doctors regarding Matthew’s knee x-ray and bone density scan results.

Never a dull moment around here!

Yesterday, Greg, Logan, Brittany and I went to a Tin Caps game. Someone had given us 4 tickets. The seats were actually lawn seats and in the direct sun, so Matthew wisely opted out of going. Someone (I forget who) told me once that the lawn seats are “so much fun”. NOT. You sit on this grassy hill and have to dig your heels in to keep from sliding into the blanket in front of you. I kept leaning back with my hands to attempt to change positions to allow butt cheeks alternating wake up time and I inevitably would grab the toes of the person sitting behind me….BLECH. Today, my calves hurt and so does my butt. No comments please, I know I am sadly out of shape. At one point, someone’s hair grease jar came rolling down the hill and sloshed directly into my already cramping butt. The trash from the folks on up the hill behind us kept blowing onto our blanket… ewwwww. And to top it all off you could barely see the home plate so we spent most of the time watching the instant replays on the jumbo-tron thingie. And the cherry on the whip cream?? We lost….

To make us all feel better, we picked up Matthew and went to dinner at our favorite Mexican restaurant. All was right with the world again!

Love,
Nancy and the Gang

Thursday, July 30, 2009 7:59 PM

Day 551

Matthew and I are home from our trip to Cincinnati!

We have a mixed bag of news from this visit.
1. Good news: Matthew counts were super fantastic. WBC 5.1 (very awesome) Hemoglobin 15.5 (YEAH!!) Plates 210,000 (highest in 9 years)!!!!

2. Good news: No signs of GVhD and she wasn’t all that concerned with his skin pigment issues…thought it would even out over time.

3. Good news: Matthew grew ½ inch since he saw the endocrinologist 6 months ago. She was thrilled with the growth and thinks he may actually exceed 5’8 which was her estimate 6 months ago.

4. Good news: we can stop the yucky breathing treatments.

5. Good news: we did immune studies again (since its 18 months post BMT)…hopefully, we’ll be able to drop the anti-viral meds!

6. Good news: We don’t have to go back to Cincy for a checkup for 3 months!

7. Medium news: Liver counts were elevated not sure what is up w/that. Not super high but elevated.

8. Medium news: Endocrinologist is re-running the testosterone levels and 2 other hormones just to be sure radiation late effects aren’t a problem.

9. Not so good news: Matthew is having knee pain again (same knee as before), so she did an x-ray. No fractures but it did show mild osteoporosis. Our BMT coordinator told me this and she didn’t know how mild is mild and what that actually means. I asked about an MRI. She is asking Dr.D. I mentioned that an x-ray doesn’t usually show AVN (bone death) and that was my worry.

10. Not so good news: the bone density scan results showed his “Z” score to be below normal. Our BMT coordinator again didn’t know how “low” his number is in the big picture. She is waiting for Dr. D and the Endocrine doc to discuss. Hmmppfff….

Overall though, things are good.

BMT report=all good

Cancer report=super excellent

Bone report=yet to be determined.

Please join me in praising God!

Love,
Nancy and the Gang

Monday, July 27, 2009 7:40 AM

Day 548

A little treat for the day, a glimpse into the inner workings of a mind of a Mother with a child that has had cancer. In fact the mind of a Mother whose child has been fighting cancer for almost 9 years, be prepared it’s not pretty.

Open the door and enter the mind, you see a thought and the thought is one of her third son, Logan. The thought is something like “oh no, not another migraine.” As you watch the thought develop you see something like “good grief (this is a G rated site so I downgraded the description a bit) this is almost two weeks of continuous migraine for poor Logan”.

You step back from the thought to look at the scene surrounding the thought. Logan is lying on the couch moaning. His eyes look sunken and the circles underneath are dark and heavy. Logan says to the Mother in sad, quiet voice, “Mommy, my head hurts so badly”.

Back to the thought you go…. “Where have I heard those words before? Where have I seen a pale face with sad eyes and yes those dark circles look stunningly familiar.” The mind grinds for a few seconds and suddenly all the Mother’s mind can hear is the pounding of the blood racing thru the veins in her own head. The Mother, struggling to not let her thoughts go to the dark place.

Back to the scene, the Mother goes thru the options available for some pain relief and nausea relief. The Mother is tired because the night before she was up all night with her son, getting cold rags, holding the pink puke bucket, rubbing his back.

Back to the thought… “Why does this all seem like a déjà vous? Holding pink puke buckets, cold rags on the forehead, rubbing backs, worrying….” Again the Mother struggles not to go where she isn’t supposed to go. The place where all her caring friends and family are trying so hard to keep her from going.

Back to the scene, the entire weekend the spot of choice was the couch and SpongeBob annoyingly streaming from the TV. Logan buried under blankets, moaning, not eating, and not drinking.

Back to the thought…. “I remember watching the Crab Show or whatever it was called for hours with my other child and now I’m sitting here with that screechy sounding sponge. Why does this feel bad?” As the Mother finally loses control, seven little words creep into her brain. “What If It Is A Brain Tumor?” There she thought it. It’s out in the open plains of her mind.

The next series of thoughts are ones of logic and intellect vs. emotions of a cancer-Mom. The thoughts actually could make one think of the name Sybil. The thoughts are in a way conversational between the two lines of thinking. They went something like this…. “Logan has had every brain test imaginable MRI, CT scans, EEG and they were all normal” “But, what if something has changed since those tests?” “The symptoms are the same, the migraine triggers are the same” “But we have cancer in our family now.” “Weather changes are one of his triggers and the weather has been turbulent the past two weeks.” “But they are so bad now, he looks awful, read above for all the other similarities” “Migraines can get stuck in cycles and sometimes they need intervention to stop them. We did stop them last weekend and may have to get some help tomorrow” “hmmmm, do the brain tumor symptoms come and go??” Insanity…this can look like pure insanity.

Back to the scene….The Mom woke this morning and quietly asked the Dad whether or not Logan had come to the room last night. She smiled when he said no. The Mom paced as she waited for Logan to come downstairs. When he walked into the kitchen she knew instantly that the migraine was gone. There was color in his face, the circle although still pronounced where much lighter, the trademark furrow in his forehead was gone.

Back to the thoughts………. “Dang woman, I told you it was a migraine. See how you worried yourself to the point of changing your name to Sybil?” “I know, but you see, I have a child that has had cancer. All the “what ifs” happened that time……so…….”

Love,
Nancy, the worry wart Mommy

Friday, July 24, 2009 9:10 AM

Day 545

Boy I am glad the weekend is here. It seems like the last few weeks have been a month long each. UGH.

Today is Matthew’s last day of summer class. He was taking some doughnuts in to celebrate.

We took Logan to the doctor yesterday. He is of the opinion that all the drugs we gave him in the ER this past weekend to stop the migraine cycle, have caused a bad case of gastritis. I remember how miserable Matthew was last year when he had that. So, we are on yet another med to try to calm the stomach down. He hasn’t had a noggin-ache since Saturday but the tummy-aches are still daily. Sigh.

Thanks to everyone for all the ideas for helping Logan…we really appreciate them all!

Love,
Nancy and the Gang

Wednesday, July 22, 2009 6:48 AM

Day 543

Logan is still not feeling so well. He is having stomach pains, nausea, he’s dizzy and just looks awful. He has some major dark circle happening. I’m going to call his Neurologist today to see what her thoughts are. SIGH

Matthew has 3 more days of Economics class and he’ll be done with his summer classes. We will head to Cincy for a checkup next week. Things are going well on the Matthew front.

Please continue to say a prayer for Kyle’s family, my sister in law Dixie and my friend Pat.

Love,
Nancy and the Gang

Sunday, July 19, 2009 12:54 AM CDT

Day 540

Yesterday was a rough day. Logan’s migraine continued to be horrible. He just laid on the couch moaning. So Greg and I decided we should take him back to the ER. As I was getting ready to go, I received word that our friend Kyle had become an angel. Even though I knew that he was almost ready to go be with Jesus, it still hit me like a cement truck. As I was trying to pull myself together, my other friend whose husband was just diagnosed with cancer called me with some painful news about his prognosis. That hit my like a semi truck following too closely behind the cement truck.

Greg and I took poor Logan to the ER with Mom blubbering like an idiot over all the cancer crap that is affecting her friends. I’m sure the ER folks thought I was some kind of weenie for blubbering over a migraine. If they only knew……

The good news for the day was that they gave him the same cocktail that he had on Friday, plus two more drugs. The ER doc consulted with Logan’s Neurologist and they developed a good plan. The intensity of his migraine went down significantly so they sent us on our way. The ER doc (who was a very nice man by the way) told us that he worked on Sunday and if things got painful again to call him and they would get him admitted.

Today, Logan was my normal sweet Loggy Bear! His tummy was bothering him (nothing that some Zofran couldn’t fix) but his migraine was completely gone. THANK GOODNESS. Today, he has a friend over but we are trying to keep him pretty low key for today.

Life can sure be a challenge sometimes. It seems to keep throwing grenades at you, you get a big ouch, you blubber awhile, pick yourself up and jump over that next landmine. Through the dark times it sure is nice to know that God is there…

Love,
Nancy the very sad, worn out and overwhelmed with emotional gunk Mommy and the wonderful gang

PS please say a prayer for Kyle’s family, my friend Pat and my sister in law Dixie…

Saturday, July 18, 2009 9:22 AM CDT

Day 539

We ended up taking Logan to the emergency room yesterday. He was in so much pain and the pain was making him throw up. They said he was pretty dry so I had them give him a full bolus of fluids. They also gave him an IV cocktail of Toradol, Compazine, and Benedryl. He slept for about 15 minutes woke and said the pain had gone down from an 8 out of 10 to a 5 out of 10.

We went home and headed right back for the couch. I was up with him 3 times last night. The migraine had return full strength. He’s been lying on the couch moaning all morning. We are debating about taking him back to the ER. It’s nice and cool out this morning so we are going to go outside to see if that helps. He took a nice warm bath too. We are trying all the tricks.

Onward we go….

Love,
Nancy and the gang

Friday, July 17, 2009 8:31 AM

Day 538

Well, the good news is that we didn’t get the swine flu from our adventure at Logan’s doctor’s office. The bad news Logan is feeling pretty crummy. He is going on his 3rd day straight with a very bad migraine. Bad enough to make him throw up type migraine. It’s frustrating that I can’t seem to get him any relief.

Matthew on the other hand is doing very well. He has one more week of Economics class and he’ll be done with his summer classes. He tried to go for a run the other day but said it hurt his knees too much. I know he had some hopes of rejoining BDHS’s cross country team. Sigh.

Our friend Kyle is still fighting. He is in a drug induced coma and on a ventilator. Today is his little sister’s birthday. The hospital is having a party for her. Cancer sure affects the entire family. Please keep Kyle and his family in your prayers. Kyle’s situation is a constant reminder of how lucky I am to have my son here, a constant reminder of how 50 percent of BMT kids don’t survive the transplant. My son was lucky to be in the good side of the percentage.

There have been several very close to our family that has received the diagnosis of cancer in the past 2 weeks. Some days I just don’t understand why so many around me are getting cancer. I really don’t want to hear the “it’s the circle you are in” because these recent diagnosis’s are not children. I really don’t want to hear “Fort Wayne must be a cluster” because 75 percent of these diagnosis’s don’t live in Indiana. I really don’t want to hear “cancer has always been here we just didn’t know that is what it was”…. Bull…. cancer has been “named” since I was a kid and beyond and I tell you I grew up and only knew one person that died of cancer and he was a high school classmate. I’m feeling very angry about this crap called cancer. I’m feeling helpless to do anything. I’m feeling overwhelmed that those around me are facing a battle for their lives…one similar to the battle my family has been in for 9 years.

I’m really trying to get my head around all this suffering but it’s hard. I know God is taking care of us all especially the ones that are suffering. But it’s hard to understand why I’m seeing 3 people I care about in one week diagnosed with a serious disease and I’m watching 2 children fighting for one more hour here on earth. I just can’t get my head around this.

Well, that was a major dump……….I’ll end with asking you once again to pray for Dixie, Pat, Vivian, Lisa, Kyle, Anika and of course my sweet Matthew.

Love,
Nancy a very sad Mommy

Friday, July 10, 2009 9:43 AM

Day 531

Go figure……….

My life has turned into a cycle of “health challenges”. I’m not complaining, I’m just trying as usual to see the humor or is it irony in all of it.

As you know, Matthew’s immune system is still not 100%. As you also know, Mom can be a bit neurotic when it comes to avoiding germs, swine flu potential spots, crowds etc.

As you also may know, little Logan has been dealing with chronic migraines for 4 years now. He has at least 2 migraines a week and sometimes he plummets into the darkness of a migraine cycle, where the migraine can last for days. Well, this summer has been particularly hard for Logan. So, I called the Neurologist yesterday to say the new medicine we tried was just not working and that he had been in a multi-day cycle of migraine pain as well as some pretty bad emotional issues. So, they squeezed us in yesterday after I begged them to get my baby some relief.

Yes, I’m getting to the humor…or irony… or just total “go figure”…..

So, Greg & I drive to the Neurologist office filled with hope that we could solve yet another “health challenge” but also fully aware that they were “squeezing us in”. We arrived, checked in and found some seats. Well, we waited….I read at least 4 magazines since I forgot to bring my latest novel I’m reading. Logan whimpered from the pain and lay on the chair. Greg sat patiently as normal. Finally, we were led to the exam room….to….you got it…wait some more. In the exam room, I read 4 more magazines. Logan whimpered and lay on the exam table. Greg sat patiently as usual.

Finally, the door opens and in walks our doctor in a MASK. She chuckled and said that she wasn’t paying homage to MJ but rather she was recovering from the flu.

Enter into neurotic mom’s mind…….how many times had I touched something that she had touched? Did she read any of the 8 magazines I had just read? Did I lick my finger to turn the sticky page? Why were the pages sticky anyways? Did Logan’s tongue touch the handle of the chair he had been laying on? Did any of us touch that door knob? Why is Greg still sitting there so dang patiently?

Well, I think I stopped breathing (to avoid the flu germs I was sure were swirling around my head) and we began to talk about poor Logan. About 5 minutes into the conversation it hit me………

WHAT KIND OF FREAKING FLU DID SHE HAVE??????????

So, mid sentence I asked “what kind of flu do you have?”

She said “type A influenza”.

I tensed and said in a somewhat louder (maybe shriller) voice……is it the Swine Flu?????

She said “well they have tested me for it and we are waiting for the results but I’m on Tamiflu and I’m wearing a mask”.

I dropped to the floor to grab my purse and dug furiously to find the hand sanitizer. Yes, the room was suddenly filled with a Luscious Pear scent (I just love Bath & Body Hand Sanitizer). We quickly made our plan and ran out of the room.

I sent Greg & Logan to the van so I could check out….I was careful not to touch anything this time and my mini breathes were barely enough to keep me standing. As I not so patiently waited for the bill, I look up behind the nice lady at the desk and there was the doctor grabbing for a chair because she was feeling faint…….aghhhhhhhhhhhhhhhhh

So, in trying to solve a “health challenge” for my one kid, I have managed to expose my other “health challenged” kid with the freaking swine flu.

Go figure…….

Love,
Nancy and the very challenged gang

PS We left with 2 new prescriptions to try to help poor Logan

Monday, July 6, 2009 8:10 AM

Day 527

No headaches for Matthew for two days. It must have either been weather, viral or some evil plot to drive Mom insane. I’m leaning towards the latter!

Matthew started a new class today at BDHS. He is taking Economics. I bet they discuss a lot of current events!

Please take a moment to say a prayer for our friend Kyle. His is 100+ days post BMT and is now fighting for his life. Kyle and Matthew have been in similar battles for the last 9 years. Both ALL, both with 2 relapses and both went to BMT. Kyle is really struggling.

Our 4th of July was really nice. It was pretty laid back but we all enjoyed being together.

Love,
Nancy and the Gang

Friday, July 3, 2009 9:29 AM CDT

Day 524

Matthew’s headache is back. I’m back to panic and stress and feeling overwhelmed.

I really dislike this feeling. I really hate when Matthew gets a recurring headache. I really hate cancer. My friend Denise’s son Kyle is fighting for his life post BMT. My sister in law was just diagnosed with breast cancer. I just really hate hate hate cancer.

Love,
Nancy

Thursday, July 2, 2009 8:00 AM

Day 523

Matthew feels better today….I am calmer today…..

I’m off to go pluck more gray hairs……….

Love,
Nancy

Wednesday, July 1, 2009 9:54 AM CDT

Day 522

Webster’s Definition of terror: a state of intense fear

Nancy’s Definition of terror: Greg waking me up to say Matthew isn’t feeling well and then finding out that Matthew has a bad headache, and feels feverous.

No matter how long we go along with this disease dangling in the dark places of our mind, no matter how well things are going overall, no matter what is going on in our lives…..one little symptom can send my brain into overdrive.

A headache….well living in Indiana means we are prone to headaches, lots of weather changes, allergies…just Hoosier stuff. I have had a headache since Saturday. Logan has had horrible migraines for weeks. Matthew wakes with a headache.

Panic, terror, flashbacks……….Holy cow this is my reality.

I’m going to go do Yoga now….dang I don’t know Yoga….ok Meditate…..what the heck does that mean anyways….Lamaze breathing….yes that might work…..hee hee hooooo….hee hee hooooo…ohmmmmm….ohmmmmmmm…..

Later…
Nancy

Tuesday, June 23, 2009 7:22 AM

Day 514

Webster’s definition of Arachnophobia: the fear (or phobia) of spiders.

Nancy’s definition of Arachnophobia: a pulled back muscle caused by taking children to a free animal show at the local library.

There was a huge tarantula that the host of the show was walking around with. He was literally walking thru the audience of sweet children with this huge furry spider. He was talking about venom and how the bite hurts but you won’t die…blah blah… This furry monster with legs as long as my pinky for gosh sakes was creeping and crawling and stretching with beedy eyes darting around the room looking for ME…I just knew it….ME…he wanted ME….

I was basically sitting on Greg’s lap, beads of sweat (ok vats of sweat) on my forehead (ok everywhere on my body), one complete tense bundle of FEAR. And then the host starts walking away from the oooing and ahhing and smiling children towards……ME………..that was when I disentangled myself from my guffawing hubby to bolt from the room….running over smiling, oooing and ahhhing innocent children…blindly running for the door…to safety…..away from that freakin monster of a spider.

Today, my upper back is in a spasming snit……..Agggghhhhhhhhhhhhhhhhhhh

Love,
The confirmed Arachnophobe and her giggling family

PS after the show he had the nerve to say “I’m available for birthday parties”. NO FREAKIN way…….

Wednesday, June 17, 2009 7:47 PM

Day 507

Hello from “we are too busy to sneeze central”! We are having a crazy, fun, busy, absolutely normal summer!

Matthew is busy with school, SAT and ACT. He took both the SAT and the ACT over the past two Saturdays. He is in his 2nd of 3 weeks of US Government. Then he has a week off and then on to Econ. He seems to be learning a lot and I think he’s enjoying being back at Bishop Dwenger.

He is also busy putting in job applications…unfortunately he is somewhat limited yet in where he can work plus you couple that with the yucko economy and well lets just say the job offers aren’t coming in fast and furiously. If anyone knows of anything a very responsible, smart, handsome, great teen, loving son, fantastic brother…oops I got carried away…anyhoo if you know of any jobs let Matthew know!

Logan and Brittany are both on the swim team which means practice every morning at 7:45…ugh. Then they go on to dive team practice. Then they both play baseball. Brittany has dance camp for 2.5 hours daily. And they are both still in soccer. They both have to read like 50 minutes a week for school. They are both in the library summer reading program. And Logan went to school today to take an Accelerated Reader test. He got 100 percent and he now has all of his 1st quarter points earned already.

Logan is attending his first “pre-teen party” at the pool on Friday. We have two graduation parties this weekend. YIKES!

Can anyone say………E……X….H…A…U….S…T…I…O…N????

But, I’m not complaining one little bit. We are all enjoying our summer and we are thoroughly enjoying being together. You know that is something our family does not take for granted!

Matthew has another taper day on Friday. His steroid dose is getting so low and we are thrilled to pieces. I think he has 3 more months left or maybe it is 2??

Well, I’m off to watch some TV with the family. Any bets on who falls asleep first???

Love to all
Nancy and the exhausted gang

Tuesday, June 9, 2009 10:27 AM CDT

Today is Day 500 post Transplant!!!

Please join me in a moment of thanks, as we thank our dear Lord for keeping Matthew safe, thanking our staff at Cincinnati Childrens and thanking everyone who has in some way helped us as we walked this journey.

Love,
Matthew's thankful Mom

Tuesday, June 9, 2009 10:27 AM CDT

Monday, June 8, 2009 8:47 AM

Day 499

Tomorrow is the big Day 500….It doesn’t really have much meaning other than for 500 days Matthew has been making progress towards a full recovery from a bone marrow transplant. He really is doing quite well. He is down to 3 medications now and is working his way down to zero!

On Saturday, Matthew took the SAT and he said it “went OK”…whatever that means!

Today Matthew started his 1st summer class at Bishop Dwenger High School. He hasn’t been in a classroom for 1 year and 8 months, so this will be an adjustment for him. His class goes from 7:30-12:30 and runs for 3 weeks. That’s a lot of stuff to cram into 3 weeks.

I’m not sure I understand why Matthew rolled his eyes when I suggested taking his “1st day of school” picture….

Love,
Nancy and the Gang

Saturday, June 6, 2009 8:27 AM ET

Day 497

Matthew is off to take the SAT, being the dork that I am…I was nervous for him. Being the even keeled kid that HE is…he was calm, prepared and ready to kick some butt.

Matthew starts a summer class on Monday. He goes from 7:30 till 12:30 every day for 3 weeks. It should be a good transition back to the real world of High School.

We have a busy day of soccer and birthday parties! Is it naptime yet???????

Love,
Nancy and the Gang

Monday, June 1, 2009 8:41 AM ET

Day 492

Hey, we are closing in on Day 500 post-transplant! Wow, does time fly or what?

We had a very busy weekend and I’m feeling the exhaustion BIG time.

Friday night was spent running around for last minute birthday party stuff. You know, I never used to be a last minute type of gal but ever since Matthew’s transplant I find myself being more “that way”. Brittany & I had fun together picking out her High School Musical cups, napkins, table cloth, decorations, HSM surprises for her friends etc etc.

Then on Saturday morning we had 2 soccer games. Both kids played well but unfortunately did not win. Oh well, we had fun!

A few hours later the guests arrived for the big “Brittany is 7 and loves Troy birthday party”. The girls started their fun with a rousing game of kickball. Logan even joined them. Pretty soon after the arrival of the girls, Matthew skipped out with a friend….grinning as he left the rest of us home with 4 giggling 7 year olds! Then we all headed to the pool. The kids all had a great time swimming and frolicking in the water. We spent about two hours at the pool and then we heard “WE ARE HUNGRY”. No big surprise there! So, Greg dropped us off at home and ran to get the pizza!

After pizza Brittany opened her gifts and believe it or not, she received some really cool High School Musical gifts!!

After Brittany opened her gifts, she surprised the girls with a gift bag of their own…

Then after the gift frenzy, the girls headed to the kitchen to make some glow in the dark bracelets and necklaces. I was impressed that the beads I bought actually DID glow in the dark!

Then because no party is complete without the sweets and song, we brought out the official birthday cupcakes!

Hmmmmmmmm…what shall I wish for??

By this time Greg and I both started to look a bit tired, so we headed the troops upstairs to spread out their sleeping bags and prepare for the big motion picture event. Any guesses?? If you guessed High School Musical 3, you were absolutely correct! Needless to say our hopes of little angels quietly drifting quietly off to sleep with pleasant dreams of Troy and Gabriella at the prom were flat out squashed. The words “girls it’s time for bed” were uttered too many times to count. The 1:30 am, firm voice of DAD finally did them in…..I think…..I don’t know…I was snoring firmly and loudly away in my comfy bed at that time!

And so the morning quickly arrived, the little angels were bouncing around the playroom by 7:30 am! So, I dragged myself downstairs to prepare the cinnamon rolls and orange juice! Every last crumb was inhaled and every last drop was drunk.

Shortly thereafter the little angels were picked up by their well rested Mommies!

And to just add a bit more excitement to the weekend, we picked up Grandma and headed to the Tin Caps Baseball game. It was our first time in the brand new stadium. It really is a beautiful stadium. The Tin Caps won and lots of fun was had by all! There were a lot of people from St. Charles there in our section which was fun! I am happy to announce that Sister Pat and Sister Genevieve both behaved although I think I saw them sneak out early!! Poor Brittany was starting to look pretty exhausted than me by the time we got to the 7th inning. But the little trooper made it thru the game and then on to dinner at the Takyoka Steak House. It is one of those fun Japanese steak houses where they cook your meal right in front of you. The little ones really loved the entertainment. Their eyes were huge the whole time….the food….well not so much. Thoughts of driving thru McDonald’s on the way home were racing thru their heads I’m sure.

We dragged poor Brittany into the house and up the stairs and plunked the poor exhausted newly turned 7 years old girl into bed. And all was right with the world……..UNTIL…………3 am when I heard the dreaded words…… “Mommy, I threw up”………..

Love,
The tired Mom and her wonderful Gang

Sunday, May 24, 2009 7:50 PM CDT

Day 484

We are home sweet home after a visit to Cincinnati! Matthew had a checkup on Thursday. It was so great seeing all of our Cincy Children’s Hospital friends. We could barely make it 15 ft without running into someone we knew. Everyone was amazed at how great Matthew looked. Dr. D said Matthew is doing fantastically! She had nothing but good things to say! Our next visit isn’t until July. In addition to Dr. D, Matthew will have another Endocrinologist appointment as well. Matthew’s lab work looked great. Everything was completely and absolutely normal!

Thursday’s counts:
Hemoglobin: 14.5
Platelets: 185,000
WBC: 5,300
ANC: 3,200

After the appointment we headed back to Arcadia to swim and enjoy our friends from there too! We met the most wonderful people during our 7 month stay in Cincy. God was sure good to us.

Then on Friday morning, Greg & I surprised the kids with a visit to Kings Island. We arrived right before the park opened at 10 am and didn’t leave until after the fireworks at 10pm.

A few things to note..it was in the high 80’s! Matthew did great on the stamina front, we all commented on how he would have done 1 year ago….well we decided he wouldn’t have made the hike from the parking lot to the front gate!

Another note….Brittany & Logan both rode the SON of BEAST. Here are some facts about this wild coaster:

Son of Beast World-Records
Tallest wooden roller coaster (218 feet)
Tallest wooden roller coaster drop (214 feet)
Fastest wooden roller coaster (78 mph)
The only looping wooden roller coaster in the world
The most wooden roller coaster track at one park (22,612')

Needless to say, Brittany was scared to death….and worse yet Mom re-aggravated a neck injury from 13 years ago. OUCH…and even worser (??) Logan’s migraine surprisingly (ha!) appeared after the ride was over. SIGH!

Greg & Matthew rode the newest Kings Island coaster the Diamondback:

The tallest, fastest and meanest roller coaster to hit Kings Island unleashes its fury with over 5,200 FEET of steel track. 230 FEET TALL, this monster twists and turns through 10 ACRES of terrain, wooded hills with a spectacular splashdown ending to give you the ultimate thrill, without the venom!

Brittany, Logan and I spent a lot of the day in the Nickelodeon section, which was a whole lot calmer for poor Brittany, less jolting for Mom’s neck and easier on the noggin for poor Logan.

The crowds were very light, so I think we all were able to ride most of the rides we wanted to.

My favorite rides were the water rides. We hit 2 of the 3 but the rest of the family wimped out on the last one.

We truly enjoyed our day at the park. The kids kept saying “this is so much fun, this is so much fun!” It warmed my heart to see them all enjoying life again! Yeah!!

Well, I’m back to the recliner to lay on the heating pad thingie.

Love,
Nancy and the Gang

Tuesday, May 12, 2009 9:15 AM

Day 472

Wow, what a great Mother’s Day I had. I was completely and absolutely spoiled ROTTEN! This was a very special Mother’s Day for me. I remember last year and how hard everything seemed. We sure have made huge progress in the past year! I had all my kids with me and my wonderful husband too. What a gift!

Logan has been having bad migraines again and some other related issues. So, his Neurologist is going to run an EEG in two weeks. We are changing around some medications also. He is finally “old enough” to start using abortive medications. Hopefully, that will bring him some relief. She also will be changing his “preventative” meds but we’ll wait until after the EEG. Please say a little prayer for Logan.

Matthew has one more History class and he will be officially a SENIOR in high school! He is feeling really well and as Coach Dan pointed out in the guestbook, his stamina really seems to be good now. We head to Cincy for another checkup next week. I think all is looking good so I’m expecting a good report. It seems weird not going for labs but every 6 weeks now. I’m actually dealing with it pretty darn well!

Well, I’m off for now. Please say a prayer from our friend Kyle. He is having a very rough time post transplant. His Mom is terrified and I am worried.

Love,
Nancy and the Oh So Happy Gang

Friday, May 8, 2009 7:17 AM ET

Day 468

One O’clock, Two O’clock, Three O’clock …rock…..

Yes….it is time for a SOCK HOP at St. Charles!

Is my name Sandy??

Heyyyyyyyy, I’m coooooool…………and my Mom thinks I look like my Grandpa…..note volleyball court where the patio used to be…

Love the hair dude………

Rockin out in the Fort today!

Love,
Nancy and the gang

Monday, May 4, 2009 7:45 AM ET

Day 464

Well let’s see….Matthew finished driver’s ed and received an A! He also took the driving test and received an A. Now all he needs is a job to pay for insurance and he can get his license LOL.

Matthew is a few classes away from having completed his US History course and that will mean he’s officially done with his Junior year! Yeah!

Mom is busy harping about sunscreen as Matthew is at high risk for skin cancer and the sun can also cause a GvHD flare.

Speaking of GvHD, we continue on the road to being steroid free. The tapering is going well.

Matthew made his soccer coaching debut on Saturday. He is the assistant (to Greg) coach of Logan’s team. But this past Saturday, Brittany’s game (Greg is her coach too) was at the same time. So, the spotlight was on Matthew. He did a fantastic job leading his team to an 8 to 1 win! Yeah!

We are working hard (well let’s just say the boys in the family) on our patio. It is finally starting to look like a patio again! I was in charge of recruiting and serving cold drinks yesterday. I took that challenge to heart and recruited Justin and our neighbor Cody. So there were lots of testosterone fumes in the backyard yesterday!

Other than that Logan and Brittany are quite the social butterflies lately. Lots of play dates, basketball games and trampoline (at the neighbors) jumping!

Thanks for the prayers!

Love,
Nancy and the Gang

Thursday, April 30, 2009 8:58 AM

Day 460

And just when they say it’s safe to enter the real world again………….

The SWINE FLU hits………

I’m stressed…….

Love,
The stressed out Mama and her loving gang

Friday, April 24, 2009 7:00 AM ET

Day 454

Good morning! Today is another “taper day” for steroids! We are getting down to such a small dose now which is very exciting indeed. Matthew and will head over to Lutheran Hospital today for a breathing treatment. So, on the medical front things are good!

Driver’s Ed is going great. I can really see Matthew’s confidence rising every day that he drives with me. Matthew has finished two of his three classes for the semester. The 3rd teacher had to take some time off to have a baby! Well, his wife had the baby but you get the drift. Hopefully, he’ll start back up next week and should be wrapping things up within a few weeks.

Tomorrow, Logan & Brittany have their first soccer games of the season. Coach Greg and Coach Matthew are pumped!

The weather is supposed to be amazing this weekend. We’ll be doing the soccer thang and working on our patio (which is in a very torn up stage at the moment) on Saturday and then a campus visit with Matthew on Sunday and I’m sure more patio work. It sounds like a busy weekend to me!

Enjoy your weekend and hugs your loved ones!

Love,
Nancy and the Gang

Monday, April 20, 2009 8:36 AM et

Day 450

For whatever reason, day 450 sounds so great to me. I guess maybe it’s because of all the normal “stuff” that has been happening with Matthew the past week or so.

Matthew is busy job hunting. He can work in a slower type retail place or office environment. Dr D nixed restaurants and very busy retail. So, if anyone knows of anything in the Fort Wayne area, give him a call. I think he is actually excited about getting out into the job market (picked a great time to get healthy enough to job hunt huh?!)

Greg, Matthew and I had a meeting at his old high school on Friday. We worked thru a lot of details for his senior year. He has to decide on two electives and his schedule will be done. He is also taking 2 summer classes to kind of ease him into the world of OUTSIDE high school again.

We also have the information we need to get him signed up for the SAT and ACT. He is also busy taking practice tests for both. We have visited one local University already and are signed up to go visit IPFW this coming weekend. Then I think he has two outside of Fort Wayne that he is thinking about. So, we’ll probably be planning some campus visits this summer.

Matthew is also going to finish up the drivers ed class he started October of 2007. He had taken the 2 weeks of book class back then and before he had the pleasure of taking the actual “driving” portion the double vision hit….and the subsequent news of relapse put the whole driving thing on hold. He starts tonight from 5:30 to 8:30pm for the next 6 days. So, look out Fort Wayne…..actually he’s been driving with me and is quite good at the whole thing!

Greg and Matthew are coaching Logan’s soccer team again this year. Their 1st game is on Saturday! Yeah, that means spring is upon us!

Gosh, all this is sounding so normal and I guess that is why typing Day 450 post BMT really seems significant to me. He has had 450 days to recover from the nightmare of chemo, radiation and transplant. Here we are today 450 days later, planning a future, enjoying life, enjoying family and enjoying being a teenager.

Thanks for the continued prayers.

Love,
Nancy and the rest of the normal gang

Tuesday, April 14, 2009 9:07 AM ET

Day 444

We received Matthew’s lab results and they were fantastic! Everything except his Igg level was normal. The Igg level is low but holding steady! It sure is nice seeing those wonderfully normal labs!

Friday’s Counts:
Hemoglobin: 15.5
Platelets: 191,000
WBC: 5,400
ANC: 4,240
Igg: 554

I spoke with Matthew’s high school yesterday and gave them the good news about Matthew’s probable return to school in the fall! They were excited too! We have an appointment with them on Friday to discuss getting “back to school” and some planning for “college” (gasp)! How wonderfully normal is that!?!?!?!?

Thanking God for all the blessings!

Love,
Nancy and the Gang

Saturday, April 11, 2009 9:05 AM ET

Day 441

Happy day before Easter!

Matthew and I returned last night from the most excellent visit to Cincinnati. We drove down Thursday night or should I say MATTHEW drove down. He even made it safely thru the perils of Dayton on 75! He really did an excellent job and I felt very safe!

We seem to find restaurants that we like and tend to stick with them. We had dinner about 30 minute from Cincy. We split a yummy pasta dish and still took a doggy bag with us.

When we arrived at the Arcadia, we were met with lots of hugs and smiles! The staff there are really our friends and part of our recovery team. When we opened the door to our room we were met with an Easter surprise! Thank you Denise for the Easter goodies, my new purse (which I love) and Logan’s “Best Little Brother " Trophy.

When we were leaving Arcadia, we drove by Bob Evans and on their sign was a reminder to “buy your Easter dinner early”. It brought back memories of our Easter at Arcadia last year. We had been released from the BMT unit and were busy playing nurse and patient at the apartment. I baked a ham and all the trimmings in our little kitchen and we crowded around our little kitchen table and thoroughly enjoyed our Easter Dinner. We were together, we were recovering, and we were thanking God for many reasons. Wow, what a memory.

Look at how far we’ve come:

Matthew and I had a calm and leisurely drive to Cincy Childrens and even arrived early. For some reason the traffic was non-existent. I guess everyone had the day off due to Good Friday. We arrived to the clinic and were again met with smiles and hugs! It’s a wonderful group of peeps that helped save my Matthew.

We had some awesome news during this checkup from Dr. D. Matthew had more restrictions lifted and one more medication dropped. We are really getting down to the bare minimum now! We also discussed school and it appears that Matthew *should* be able to go back to his old High School in the fall for his senior year! Hooray!! We also got the OK for Matthew to take a summer class as well. So, next week we will need to make an appointment to get all this transition planned. Oh my I’m so happy for Matthew!

We arrived home just in time for me to race Brittany to gymnastics. We ate our last “non-meat” dinner for Lent….and cuddled up to watch Bolt. Of course I fell promptly asleep and woke to enjoy the credits. I was POOPED!

Our family wishes your family a blessed Easter. Thank you for continuing to follow our journey!

Love,
Nancy and the Gang

Sunday, April 5, 2009 2:42 PM eT

Day 435

We are home from our wonderful Spring Break vacation! As the entire city of Fort Wayne headed south to Florida, we headed north to Canada! Less people usually means less germs in my book!

Look we are almost to Canada:

And look again, we can see the falls over there:

We stayed at the Fallsview Marriott. It was appropriately named as the entire hotel directly overlooked the Canadian Falls. It was a specatucular view of the falls. We (or should I say I) found a super-dooper deal on a suite via the internet. We later found out that the suite we stayed in normally ran $1,400 per night. We paid less than $200!! Oh mighty shopper that I am! The kidï¿½s room had two queen sized beds, a bathroom and a beautiful view of the falls. At night the falls were lit up and the view was even more amazing.

Hereï¿½s the view from the kiddoï¿½s room:

Greg and I had our own room with a spacious king size bed, our own bathroom and a not so spectacular view!

The hotel was wonderful, clean, spacious, views from every window (well except ours):

We also found the fact that there were no refills on pop in some resteraunts a bit disconcerting but we survived.

The morning we picked to sightsee started out in the high 30ï¿½s. The mist from the falls almost felt like sleet on our faces. But the wonderful work of nature that God provided us overshadowed the stinging, burning and numbing sensations we felt on our cheeks.

Do we look cold??

The US falls:

Check out the big chunks of ice:

Even though it was freezingï¿½we saw signs of spring:

Still freezing:

These are the lights that are used to light up the falls at night:

Yes, that is sleet like wet stuff that you see:

The falls are just so beautiful. We took the Journey Behind the Falls tour and were so amazed at how loud the falls sounded. I think the kids were impressed with the fact that we were actually standing underneath the falls.

In the tunnels under the falls:

Yes, that is frozen fallsï¿½ï¿½and Mommy and Brittany too!

Danger?????????

One of the vantage points and no zoom lense involved:

Loganï¿½s getting a bit wet:

After our tour of the falls area, we headed to the Clifton Hills area. Can you say TOURIST TRAP? We had fun walking around saying ï¿½noï¿½ to every attraction the kids wanted to go to. We did indulge in the Ripleyï¿½s Believe it or Not Museum, which we all loved. There was so much to see and everyone seemed to have fun! By noon the temperature had risen to 60 degrees and the sun was shining so nicely. It turned out to be a great afternoon.

Enjoying lunch at Planet Hollywood:

Some of the touristy sights:

Ripleyï¿½s:

Can we take this contraption home??

Relaxing with Logey-bear back at the hotelï¿½

Greg and I hit the casino for an evening of alone time. Wow, imagine that?

We saw many rainbows during our stay:

Back to the good ole USA:

The next part of our trip involved extended family fun! My side of the family lives in Cleveland. My wonderful Aunt Anita had a great party at her home on Wednesday night. We were able to visit (and eat and eat and eat) with cousins, aunts, uncle and Godparents. It was truly a fun night for all! Thank you Anita!

Aunt Judy and Cousin Joy look on as Mom opens the beautiful handmade scarf from Cousin Pam:

Speaking of Pam, here she is with Cousin Alex:

Joyï¿½s daughter Anna! awwww!

My Godfather,Uncle Eddie:

Cousin Colleen with Aunt Anita:

Lovable Cousin Ryan:

Uncle Dale and Anna

Cousin Karen & Don and Godmother Auntie Olga:

Brittany playing with cousins Becca, Samantha and Adam:

Gregï¿½s side of the family lives in Akron. So we headed to Akron the next day to spend a day in a park with Aunt Dixie and her gang. The weather was beautiful and in the 60ï¿½s! We made sure that Matthew was slathered with sunscreen to avoid a GvHD flare!

At the hotel in Ohio:

At the park with Cousin Katie:

and Cousin Allison:

Shootin Hoops:

Our last leg of our adventure was to tour the NFL Football Hall of Fame in Canton Ohio. Since we are all big football fans, the tour was enjoyed by all!

Geeï¿½Steelers gearï¿½anyone surprised??
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Helmets sure have come a long way:

So have the uniforms:

Anyone want to guess what Matthew thought this was??

Can you guess who had control of the camera??

That is a lot of Hall of Famers noggins:

This oneï¿½s for the Roos Girls:

Logan and Mean Joe Green:

Brittany bribed the photographer AKA Steelers fan to take this one! GO COLTS

Ok fine, one of six! sigh!

Go Brittany Go!

And so our trip concluded and we found our way home! As the saying goes,thereï¿½s no place like home!

Love,
The Vacation Gang

Friday, March 27, 2009 12:46 PM ET

Day 426

Matthew had labs yesterday and boy were they super dooper! It is such a glorious thing to see such wonderfully normal CBC’s!! I have to admit though, I still take a deep breath, and open one eye only as I start to read the report. And then I let out a huge sigh, open the other eye and do the CBC is great Happy Dance! I’m sure it is an odd sight to see! His Igg level is low again but not quite low enough to need another IvIG transfusion.

We are doing a steroid taper again today and are hoping that allows his immune system to start kicking in! Speaking of tapering…..Matthew has tapered off of 2 more drugs now. Believe it or not, he is down to 4 drugs now. What a tremendous improvement over the 18 or so that he was on this time last year!

Yesterday’s Counts:

Hemoglobin: 15.1 (normal range: 12-15)
Platelets: 189,000 (normal range: 150,000-450,000)
WBC: 4,600 (normal range: 4,000- 13,000)
ANC: 3404 (safe range: greater than 1,000)
IGG: 588 (normal 632-1979)

For now, the GERMANATOR (AKA me) has won. Logan’s fever is gone and no one else in the family including Matthew has it. I’m knocking rather loudly on wood as I type this!

The kiddos are down with school for the week and are busy trying to figure out play dates. Matthew is in the kitchen with his English teacher for his LAST English class for the school year! He has really enjoyed Mr. Rusk, so much in fact, he has Danish and a cup of coffee waiting for him upon his arrival this morning.

Thanks for stopping by!
Love,
Nancy and the Gang

Sunday, March 22, 2009 2:30 PM ET

Day 421

Logan has had a rough couple of weeks. His migraines are at a full attack mode. He pretty much has a migraine every evening and night. On Friday, he came home from school with a 101 temp. Yes, Mom went into the germ fighting mode once again.

On Saturday, I started to worry about whether or not my germ fighting skills would be enough to keep Matthew fever free. Then I started to panic. What do I do if Matthew gets a high fever? Then it dawned on me that for the 1st time in almost 9 years, I didn’t know what to do! Yikes. So, I emailed our dear NP from Cincy and asked her to call me. She did and basically told me to CHILL OUT! LOL

So, here we are on Sunday and Logan still has a fever, although it was under a 100 for the first time a few minutes ago.

I’m still de-germing and Logan has been quarantined for the past few days. Matthew (knock on wood) remains fever free!

And so the drama continues…………

Love,
Nancy the germinator

Sunday, March 15, 2009 10:18 AM ET

Day 414

Good morning friends!

Things in our world have been remarkably calm and normal. I know I keep saying that but for us normal is such a huge deal. It is such a change from the past 9 years. It is a very much welcomed change. Planning meals, carpooling, soccer and gymnastic schedules instead of doctor appointments, chemo visits, and plowing thru insurance EOB’s and medical bills is a pleasant change of events.

Matthew is doing very well these days. He says he can feel the difference in the dosage change of the steroids. He has only dropped 5 mg but he can tell the difference. The extremely good news is that with this reduction, we have seen no signs of GvHD. We will do another taper on March 27th and we are hopeful that we’ll see the same response!

Matthew is almost finished with his English classes. He had about 2 more weeks. He is about ½ done with his other two classes. He seems to be doing well in them all!

Logan has been having some killer migraines the past month. I hope that once we get thru the turbulence of spring, things will calm down for his noggin.

Big news on the Brittany front……….

Before……..

After……….

Justin is busy working and there’s not much new in his life…that I know about anyways!

Greg and I are both looking forward to warmer weather so we can get our buns outside. We both have noticed a big surge of bird activity outside our kitchen window and I saw some buds on my dogwood tree the other day. Surely that means warm weather is quickly approaching.

Ahhh, the normalcy of life…the calmness is invigorating! May God let this continue forever!

Love,
Nancy and the Gang

Wednesday, March 11, 2009 7:24 PM ET

Day 410

Well you know that saying…NO NEWS IS GOOD NEWS????

Yup!!!!!!!!!!!!

Love,
Nancy and the very happy to be normal gang

Wednesday, March 4, 2009 7:56 AM ET

Day 404

Well let’s see……

Brittany is over the stomach flu and is back to talking non-stop a mile a minute…yup, she is back to normal. Brittany’s class is doing a reading contest of sorts. When everyone in the class gets to 30 (I think) paper ice cream scoops (1 scoop = 1 chapter or easy reader book read) then the class got a pizza party. Well, the class did it, they had the pizza party but alas poor Brittany was sick that day, so she missed the party. Then when the class gets to 100 (I think) scoops, they get an ice cream party. Well, they are still working on that one. Then if the class gets to 175 scoops they get a cookout/picnic! Well, Ms Brittany just handed me a note last night. She has officially obtained 1,220 ice cream scoops. 1,220 = 1,220 chapters or books read. It’s been a family project, since she has to read out loud to someone…We’ve all listened to literally over a 1,200 books. From the life cycle of the humpback whale, to Junie B Jones, to the Magic Tree House goes to Hollywood….It’s crazy I tell you….and she’s not stopping…agggghhhhhhhhhhhhhh!

Here’s a sample of our little ice cream scooper’s work:

Matthew is busy with his homebound classes. He’s doing lots of homework and preparing for the SAT (gulp….does that mean college is around the corner somewhere???) He is feeling good these days. His labs from Friday looked good too. That IvIG he received at Lutheran bumped his Igg levels up over 1000! Yeah! We started to taper the steroids and so far so good….no signs of GvHD. I hope this long, slow, “it seems like it’s never going to end” tapering schedule does the trick and keeps the GvHD away.

Counts from 2/27/09:
Hemoglobin: 14.7 (how wonderfully normal)
Platelets: 162,000 (wish they were a tad bit higher…)
WBC: 5,800 (Beautiful!)
ANC: 4,524 (Yee haw!)

Logan has been having a rough time with his migraines lately. We had increased his preventative medication but he had a bad reaction so we had to lower him back down. Last night, I walked in the door from work and he was buried under a pile of blankets. Greg said “he just threw up”. UGH. I immediately thought “is it the stomach flu or migraine”. It appeared to be from the migraine. Poor kid…..

Justin is working hard. He and Matthew hung out the other day….they both enjoy those Xbox games!

Bella our cocker spaniel got a nifty hair cut yesterday….how’s that for exciting news? I bet y’all are jumping out of your seats with joy!

Seems to me our family is dealing with somewhat normal stuff lately….boy I’m sure enjoying that a whole lot!

Take care everyone…spring is coming….there is hope!

Love,
Nancy and the Gang

Saturday, February 28, 2009 9:14 AM ET

Day 400

Hello DAY 400! Yahoo!!!!

Yesterday’s appointment went well. The good news is that Dr. D agreed to start tapering the steroids (yeah!). The bad news is that it will be over 7 months until he is completely off of the steroids. Matthew was really really unhappy with that decision. He really hates the way he feels on steroids. She feels that we need to do this slowly to eliminate the recurrence of the Graft vs Host Disease issues. We also discussed whether the continuation of the steroids will affect his ability to return to school (real live school not homebound) in the fall for his senior year. She felt he’d be back to school in the fall (yippee!).

As for the knee pain, Dr. D didn’t feel at this point we were dealing with AVN (bone death) based on where the pain was, the way the knee looked and the description of the pain from Matthew. She wants to wait a few more weeks and if the pain continues or gets worse, our next step would be an MRI.

It was great to see all of our friends at Cincy Childrens. Everyone is always so amazed at how good Matthew looks! He really does look good!

We headed home and yes Matthew did some more driving! By the time we got home though, I had a horrible migraine (I’m pretty sure Matthew driving had nothing to do with that LOL). I went directly to my room to lie down. Brittany joined me to “take care” of me. I never did get back up. Around 1 am, Brittany woke us up to say that she had thrown up in her bed. Yes, the stomach flu has hit our home. As of an hour ago, she was still puking. UGH. Hopefully, Matthew will manage to avoid this crappola. Since I spent the last 12 hours cuddling with Brittany, I figure that I will be puking soon. AGHHHHHH

Thanks for all the prayers!

Love,
Nancy and the Gang

***************************************************************
Thursday, February 26, 2009 9:14 PM
Day 398

Hello from balmy Cincinnati! We are here for our monthly checkup. We sincerely hope Dr. D will let Matthew start to taper the steroids. We are all so anxious for his immune system to recover and getting off the roids will finally allow this to happen. We’ll see…

Matthew’s knee has been bothering him so we’ll see what the good doctor thinks about that as well.

We had a good drive down. Matthew actually drove part of the way. He did a fabulous job. I was very proud!

We arrived at the Arcadia and were greeted with hugs and smiles! We just love our friends here at Arcadia!!

We checked in just in time to watch American Idol! Yes, we are hooked again this season. The dude with the black hair did an awesome job with I Can’t Get No Satisfaction!

Our appointment is bright and early tomorrow morning! Please say a prayer that all goes well!

Love,
The dynamic duo

Saturday, February 21, 2009 5:39 PM EST

Day 393

Well, yesterday was sure a long day in the trenches. We arrived at our local clinic at 8:30am and didn’t leave until 6:30pm. Yikes!

We’ve managed to avoid the dreaded IvIG for a long time now. We think maybe last June was our last infusion. Matthew just does not get along with IvIG. About 10 minutes into the infusion (yes we premedicated with 3 drugs and started out slowly), Matthew turned beet red and got very hot, so they stopped the infusion. They restarted it at like 2 drops per hour. He also spiked a fever later in the day. It is supposed to run 200 ml/hr but we were only able to ramp him up to 65/hr. Slow and steady wins the race as Matthew told us all. Today he’s dealing with a migraine…ugh.

Other than the reaction, migraine and the long long day, it was a good day.

Love,
Nancy and the Gang

*******************************************************************
Wednesday, February 18, 2009 7:39 AM
Day 390

Brittany and Greg had a fantastic time at the Daddy & Daughter Dance on Friday! Brittany came home talking 1 mile a minute (yes faster than normal) full of stories about dancing with Daddy!

Our Princess:

And her Daddy:

Guess who loves their Daddy???

Matthew had a good birthday! We were all thrilled to celebrate his 17th birthday…at home…feeling good….strong and healthy!

Ooooo, some more books!!

And a new shirt……

Poor Logan had a migraine ……….

As usual, Brittany was smiling!!

Justin stopped over on his break from work but managed to avoid the roving photographer’s careful eye!

We had a great weekend….and we hope you did too!

Love,
Nancy and the Gang

Friday, February 13, 2009 4:28 PM ET

Day 385

Matthew is feeling great these days. He looks healthy and so much stronger than one year ago. His lab work from yesterday supports this fully except for the immune result. His CBC was fantastic. Everything was completely normal! I can feel myself breathing a wee bit better every day!

On the other hand, his IgG level was very low. He will need to get IViG next Friday to help boost his antibodies up. He has been eeking by Dr. Davies’s cutoff for the past 6 months or so, but it dropped below and now he’ll need the IV. This is the IV that has caused some yucky side effects in the past including rigors so bad that he loosened his bottom teeth and 3 week migraines. We’ll be pre-medicating and crossing our fingers, eyes and toes that he goes without the drama of side effects this time.

All and all, things are good!

Tomorrow is the big 17th birthday for Mr. Matthew! Please join me in wishing him a very happy birthday…if anyone deserves it he does!!

Brittany and Daddy are heading to the Daddy/Daughters Dance tonight! Brittany is very excited and I *think* Daddy is too! Stay tuned for some pictures!

Yesterday’s Counts:

Hemoglobin: 14.7 (Amazingly normal)
Platelets: 186,000
WBC: 5,700
ANC: 4,446

Spring is right around the corner….keep the faith!

Love,
Nancy and the Gang

Saturday, February 7, 2009 7:23 AM ET

Day 379

Matthew is doing exceptionally well! We have not seen any signs of GvHD for 3 weeks now! We are hoping that at our next Cincy visit at the end of the month that maybe Dr. D will begin to taper the steroids. We’ll see.

Next week Matthew will start his 2nd and 3rd classes for this semester of homebound schooling. He’s already well into his Creative Writing class and is really enjoying the class! Next week he will start US History and a science class. His week is going to be pretty full between his 3 two hour classes twice a week and all the homework that goes along with it! Busy is good in the world of the immune suppressed!

Last week Matthew & I went to Lutheran Hospital to tie a special note from Matthew around the necks of the 108 adorable Webkinz animals! They were all so cute and cuddly. We just know they will bring lots of smiles to 108 little kids! After we were done, Matthew actually handed out several of the Webkinz to kids that were there for chemo. It was so heartwarming to see my son talking to these kids…gulp.

Look at all those Webkinz!!

Oh my gosh, isn’t he absolutely hunky??

Greg and I finally had the time to get our Lighthouse Family Picture (from July 2007 PRE 2nd relapse days) framed. We had been looking for awhile now but couldn’t seem to find the right frame. I had an idea in my mind but couldn’t find it. The other day we decided to go to the new Michaels down the road. We walked to the frame department and sure enough the first frame we saw was IT. Both of us instantly knew we had found the perfect frame for our family’s Lighthouse picture!

Here we are………all framed and ready to hang………hmmmmmmmmmm will it take another year to figure that one out???

Love,
Nancy

Monday, February 2, 2009 10:34 PM ET

Day 374

If you heard a loud rumbling noise last night, don’t worry it was not an earthquake…it was some loud and excited Steelers fans (and their loyal Colts fans turned Steelers fans for 1 night only family) yelling their fool heads off during the last 2 minutes of the Super Bowl! What an ending folks!

We enjoyed the game with our good friends the Roos Girls (who I hear have been sighted in various places around town) and our wonderful friends the Black Family (AKA the non-Yankee fan family). We had lots of wonderful food, lots of laughs and lots of hoopin and hollerin!

Must have been a calm moment……

Just because he punched my guy repeatedly does not mean he should get the YELLOW FLAG…

No worries……….

Crap, she found the camera AGAIN……..

Ok, we have had these stupid 3d glasses on for 20 minutes now…………and what pray tell is Mrs. Roos doing??

Is Logan really sticking his foot in Cody’s ear??

Sean, are you ok? Anyone notice more food arriving on the coffee table??

Mitch, praying his toes did NOT stay on the ground….sorry Mitch!

Matthew’s so nervous he’s wringing his own neck with his terrible towel

Never fear………..the Steelers shall conquer

Next year the COLTS will be the Champs!

Love,
The Superbowl fans and their friends

Saturday, January 31, 2009 4:06 PM ET

Day 372

Wow, what an awesome week this has been! Lots of good news and a wonderful birthday celebration too!

Matthew is doing very well. No signs of GvHD at all this week. Maybe another good sign I’m hoping!

Mom has to get used to monthly lab checks instead of every other week lab draws…..gulp! But as with everything else over the last 9 years, we adjust and move forward.

Matthew has started 2 out of his 3 classes. The 3rd teacher seems to be lost in the system somehow...somewhere.... (does anyone else hear Twilight Zone music??) Our biggest challenge besides missing teachers is healthy teachers. We are right in the midst of flu, cold and influenza season, so we have to be extremely careful about germs still.

We are all getting excited about the Super Bowl tomorrow…would anyone like to guess who we are rooting for in our house? We have some fun munchies planned and of course the Roos Girls will be joining us…rumor has it they might be cheering for the Cards though…hmmmmm!

Stay Warm everyone…Spring is getting closer!!

Love,
The football fanatical five

***************************************************
Tuesday, January 27, 2009 7:16 AM
Day 368

More good news!

The Endocrinologist called late yesterday with results……Everything is NORMAL! NO TREATMENT REQUIRED! I’m shocked; I was really preparing myself for some “gland damage” from the radiation. But everything is operating normally! Yes!!

So, all in all, the one year testing garnered spectacular results, except for that pesky immune system. Patience is the name of the game at this point.

We are celebrating my birthday today with the most awesome gifts ever….a healthy Matthew….excellent results..and a family that loves me unconditionally! What more can a gal ask for!

Love,
Nancy the birthday girl and her lovely family

**********************************************
Monday, January 26, 2009 12:16 PM
Day 367

Hey, I have some Testing news. Not all the results are in yet but the ones we do have are mostly EXCELLENT!

Matthew’s Ticker (AKA heart) - Matthew’s ticker is operating A-OK!

Matthew’s Peeps (AKA eyes) – Matthew’s eyes are lookin good (literally). No sign of cataracts or GvHD and his vision is great.

Matthew’s Airbags (AKA lungs) – Matthew is breathing…and doing it with two healthy lungs!!

And the BEST news:

Matthew is 100 percent donor cells….none of those pesky Matthew cells…all donor! Yahoo!!!

Now the not so good news:

Matthew is still immune suppressed. No one is surprised since he is back on the steroids since they are immune suppressants. Matthew is disappointed since he was looking forward to “freedom”. But all in all, the good news is great news……If we can get the GvHD under control, then we can stop the steroids which should allow his immune system to return to normal.

We are still waiting for the Endocrine test results and one other immune study result…but things are looking good!

Love,
Nancy and the Gang

*********************************************************************
Saturday, January 24, 2009 8:16 PM
Day 365

Look!! It’s here!! THREE HUNDRED AND SIXTY FIVE days since Matthew received the gift of life from our loving donor. One year ago today, Matthew and I were anxiously awaiting the safe arrival of the cells. We were hoping and praying that the delivery went smoothly. One year ago today, a vigil was being held for Matthew, and prayers around the world were being said. One year ago today Matthew’s bone marrow had been wiped clean of all cells with the hope that not one single little tiny cell of Matthew remained. Matthew’s cells that for whatever reason, were genetically programmed to grow Leukemia cells. The empty marrow, like a beautifully cleaned empty vessel, was waiting for the new cells. The healthy, cancer free cells of a complete stranger were flown in from an unknown location to us in the Midwest town of Cincinnati. Were they flown in from Canada? Or Europe? Ireland or Russia? All we knew was that a woman in her 40’s from “another country” had generously done the thing that very few people ever have the opportunity to do….she saved a life. Not just any life though, she saved my son’s life. She saved the life of a teenager who had yet begun to live…truly live. She saved the life of a boy that for the past eight years had known a life filled with chemotherapy, pain and cancer, but she also saved the life of a boy that had grown into a deeply caring and loving young man. A young man who has so much to offer the world…she saved his life. To that woman, our family owes a lifetime of gratitude. We anxiously await the day that we can tell her in person about the life she saved.

And so tonight Matthew celebrates his one year anniversary or re-birth as some call it, with 5 of his closest buddies. A night filled with xbox, munchies and friendship. And his Mom listens with joy to the laughter of her son and his friends. She thanks God and she sends her thoughts of thanks out to the woman who selflessly shared her marrow with a child who so desperately needed it.

Join me in a moment of prayerful thanks. Celebrate with us as we joyfully look forward to a lifetime of watching Matthew as he accomplishes great things. Pat yourselves on the back, because in some way each of you has touched our lives and has offered support when we needed it the very most. And always remember…….Never Give Up….

With love,
Nancy

Friday, January 16, 2009 7:59 PM ET

Day 357

We are home safe and sound! Wow, what a whirlwind 3 days!! For those of you who do not live in Ft. Wayne….it was 11 BELOW zero here this morning with 30 BELOW zero wind chills. That is just crazy!

I received Matthew’s lab work today and all looked good except his IgG levels. The IgG is what is important when fighting viral gunk. It is still above his threshold but not by much, so we’ll see how it looks next week.

Yesterday’s Counts:
Hemoglobin: 13.7
Plates: 172,000
WBC: 5,500
ANC: 3,830
IgG: 424 (cutoff is 400)

Hey I thought I’d share some before and after pictures with you…

Matthew taking the PFT (pulmonary function test) one year ago today…….

Matthew taking the PFT yesterday….what a difference a year makes!!!

Here’s Matthew at the Ophthalmologist……..He kind of looks like a movie star!

We are just so glad to be home here in the Ice Zone….

Love you all…

The Fab Five

***********************************************************

Thursday, January 15, 2009 9:59 PM

Day 356

We made it to Cincy last evening. It took us about 1 hour longer than normal due to snowy weather in northern Indiana and Ohio. Cincy had NO snow at all but Dayton was a mess as always. What is up with that town and traffic??

When we checked into the Arcadia, Matthew announced that he had an early birthday surprise planned for me. Ooooo, I love surprises! So, we bundled back up and he told me where to drive. He led us with his pre-printed MapQuest instructions to our surprise destination. We finally arrived in Kenwood at the CHEESECAKE FACTORY! I have always wanted to eat there so I was thrilled about his choice. We had a wonderful dinner and Matthew let our waiter know that I was a birthday girl. We ordered some cheesecake to take back to the hotel since we were stuffed to the max! It was Matthew’s treat and I had such a great time. We reminisced about my last birthday which we spent on the BMT floor, 3 days post transplant. What a difference a year makes!

This morning we had had to be at our 1st appointment at 7:45. It was an incredibly long day but a very productive one. The ophthalmology appointment went really well. He said his lens were very clear, with no signs of cataracts or Graft vs. Host Disease. He also does not need glasses! Yippee.

We had a long appointment with an Endocrinologist. She went into our family history as well as Matthew’s history. At one point she asked me if I was in the medical profession. I had to chuckle…some days I feel like I should get an honorary degree of some sort. She ran lots of blood tests and asked for some more information from our family doctor at home. She will develop a plan and contact us after she gets the test results and history.

Then we met with Dr. Davies’s team. One of our nurses that we had quite a bit when Matthew was on his platelet “kick” opened the door, looked in and said “oh my I have the wrong room”. Then she shut the door and immediately opened it back up and said “Matthew????” She was so shocked at how different he looked. The last time she saw him; he had puffy/steroid cheeks and was bald as a billiard ball. She just could not get over how great he looked! (That made us all smile!)

Dr. Davies said Matthew was looking fantastic. She decided to keep him on the steroids to further get the GvHD under control. They took a gallon of blood for the normal lab work as well as the immune studies. We won’t have those results for a several weeks. We’ll be anxious to hear how things are looking in that department.

He also did a Pulmonary Function Test (PFT), had a breathing treatment to prevent pneumonia, and had an echocardiogram, an EKG and an x-ray.

Then we headed to pharmacy for our grocery bag full of drugs. By that time we were both like zombies. We sloshed to the car and headed north to Arcadia. At one point Matthew said “Mom, why are you driving so slowly?” Huh?? What?? Oh my gosh, I was on the highway, in the middle lane with cars zooming by on both sides as I was driving 49 mph….I think I might have been napping….

Well, the tests all seemed to go well, but we won’t know results for a bit. Hopefully, everything is A-OK.

We’ll be heading home tomorrow, anxious to see Greg and the little ones!

Keep praying!

Love
The Dynamic Duo

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Wednesday, January 14, 2009 7:29 AM
Day 355

Only 10 more days until Matthew’s 1 year post Transplant Anniversary. Can you believe it?? I was peering at him at dinner the other night (yes I still do that) and it struck me just how GREAT he really looks. People always tell me “Matt looks great” and I nod and then look at his coloring, gauge whether or not he has dark circles, check his GvHD issues and sorta agree. But the other day I was comparing Matthew’s coloring to Logan’s coloring. Matthew had nice rosy, healthy cheek color whilst Logan had kind of a green/pale tint to his….and I thought “oh no, Logan must be getting sick”…….Yes, the signs are all there…Matthew is approaching his 1 year anniversary and Mom is busy thinking whether or not Logan is getting sick instead of Matthew! How about them apples??

Matthew and I will be heading to Cincy in a few hours. I’m hoping the snow accumulation waits until we are further south! The testing schedule is fierce…he has a whole bunch of back to back appointments, so I’m sure we’ll both be exhausted by the time we get home…ok probably just me…Matthew will be ready to do some cross country skiing or something!

I have some really awesome news to share with you about our hero Matthew! Back in October Matthew decided he wanted to do something for the kids at Lutheran Children’s Hospital (our local hospital). So, he thought and thought. Then he started thinking about his long, miserable days at clinic, not feeling well, chemo dripping, Mom dozing…and he decided he wanted to do something to make the kids happier whilst they were getting their nasty chemo. So, he thought and thought some more. While he was thinking, he noticed just how much his little sister and brother (that would be Brittany and Logan) really enjoyed playing with their Webkinz (in real life and on the computer). Webkinz you see, are adorable, cuddly stuffed animals that come with a “code”. When you get a Webkinz, you name them and then log your code onto the Ganz Webkinz website. Once you arrive there you enter a world of make believe fun. You feed your pet, you exercise them, you decorate their house and yard, and you, the lucky kid, get to play fun games. Before you know it hours have passed….hmmmm passing the time….fun….cuddly friends…..hmmmmmm

So, Matthew developed an idea. He searched the internet to find the address of the Ganz Corporation. He found out the name of the CEO (always best to go to the top). He contacted our Social Worker at Lutheran and asked her to write a letter to accompany his letter (good idea to confirm you are legit). He wrote a heartwarming (yes I think I sniffled a time or two as I read his draft) letter to the CEO. He introduced himself, explained his history with Leukemia and explained how he wanted to help other children who were fighting the same battle. He then asked if they would consider donating 50 Webkinz to our hospital so that 50 children could receive one. He felt the cuddly little friends and the entertainment factor of the online world might make the whole darn process of chemo, a little bit easier to stomach (no pun intended).

Well, fast forward to this past weekend. Matthew made the comment to me that he was disappointed that he had not received a letter back from the Ganz Corporation. He was thinking that possibly the economy might have been a factor in their inability to help this year but he was hoping for some closure for his project.

Fast forward to yesterday. We were sitting at dinner and he says “oh Mom, I received a phone call today …guess who it was from?” Hmmmmm….let the games begin….Mom loves a challenge you know. So, after a few hints I finally guessed……

Yes, he received a call from Mindy Ganz from none other than the Ganz Corporation. She apologized for the delay in responding to Matthew’s letter. She asked how he was feeling and then she announced that they wouldn’t be donating the 50 Webkinz. But rather, they would be donating 108 (not sure about the 8 part) Webkinz to the Lutheran Cancer Clinic in Matthew’s Name! WOW WOW WOW!! How cool is that?

Matthew will still be doing some coordinating with the clinic about the laptop/internet availability. That may be phase 2 of his project!

As always, I’m amazed by my son. I’m so proud of him and his desire to use his journey, yucky as it may be at time, to do good for others. To share hope with others and the share his message to “Never Give Up”.

GULP………

Well, I’m off to get some last minute “stuff” done before our big trip.

Please continue to pray for our hero!

Love
Nancy, the very proud Mama

Sunday, January 11, 2009 5:48 PM ET

Day 352

This has been a great weekend here in the snowy Fort. The ground is covered with beautiful white fluffy snow and all is warm and toasty inside! The kids (all 3) each had some friends over this weekend. I napped quite a bit and read! We also had a fun game night with the Roos Girls last night! (Ahhhh, can it get any better than that?? Game night, reading, friends and naps!!!)

Matthew’s GvHD is back under control for now. These flares are quite annoying for him. Matthew had his 1st Creative Writing class on Thursday. It went well and he is happy to have Mr. Rusk as his teacher again! (Hi Randy and Sharon!) We have yet to hear from the other 2 teachers....time for Mom to start harping again...sigh...

Matthew and I head to Cincy on Wednesday. We are closing in on our huge milestone….1 year post BMT! Wow ….wow…wow…While we are in Cincy, Matthew will undergo testing similar to pre-BMT as well as an appointment with an Endriconologist, and Ophthalmologist. Both of these appointments are to assess whether there is any radiation damage that needs to be addressed at this point. Hopefully, all is ok for now!

Well, back to the Steeler’s game. They are currently in the lead so ½ of my family is very very excited!

Please keep Matthew in your prayers!

Love,
Nancy and the Gang

Wednesday, January 7, 2009 6:56 PM ET

Day 348

Today Matthew had lab work done and so did Logan. Fun times huh?!

Logan’s migraines have been pretty bad the past month or so. Greg took him to visit the Neurologist yesterday and she wanted to run some labwork.

Matthew’s counts looked great! His hemoglobin looks fantastic in fact!

I really think the lab should give us a group discount!

Today’s Counts
Hemoglobin: 14.3
Plates: 148,000 (I’d like these to be a tad higher)
WBC: 5,000
ANC: 3,350

I think I jinxed Matthew today. I was telling our NP from Cincy how well Matthew’s Graft vs Host issues were doing. I just noticed Matthew’s rash is flared up something fierce….grumble growl.

Anyhoo, everything else is calm…and as we all know….calm is good in our world!

Love,
Nancy

*************************************
Friday, January 2, 2009 8:56 AM ET
Day 343

Happy New Year everyone! Wow, 2009 already! I’m not sure where 2008 went!

Actually I am very sure of where 2008 went. It was a year of challenges, fear, triumphs, recovery and thankfulness.

We started out 2008 full of worry, fear and trepidation. We celebrated 2008 with a very weak and worn out Matthew. We enjoyed our family time, all the while not knowing what 2008 was going to actually turn out like.

Our family headed to Cincinnati to begin an intense few days of testing. We did slews of tests at Cincy Childrens…to get a baseline and to be aware of any organ issues prior to transplant.

Remember the GLOWING KIDNEYS???

We were measured for the radiation mask and chest protection “armor”.

We came home for our last week before heading to Cincinnati. Our week was filled with lots of goodbyes from family and friends. We were upbeat yet concerned but really enjoyed our moments with our Never Give Up team!

Grandma and Matthew sharing a hug!

Matthew with his Aunt Debbie and family….

One of the many “signs” of support…….

Fun with the Schleter Family..

And there was the send-off party….what fun that was!!

During the 2nd week of January, Matthew and I, with our van packed full of survival items, said a tearful goodbye to Greg, Logan and Brittany. We headed south to Cincinnati, to a city filled with hope for a cure.

We checked in to the Vernon Manor hotel…remember??? The 100 year old hotel that has signs in the room advising you NOT to plug in too many electrical things at one time!

Oh and the Beatles once stayed there!!

We settled in to our new digs and Dan the Shuttle car driver drove us to Meijers to buy some food…..just the beginning of our learning to live together 3.5 hours away from our home and our family…and our “normal” life…

We then started 6 days of cranial radiation. It was a quick trip to the Barrett center once a day for radiation. The worst part of the process was when they clamped down Matthew’s head to the table. I just can’t imagine that feeling of having your head clamped, being totally alone in a room with massive amounts of radiation beaming into your brain. SIGH.

After the 6 days of radiation, we were admitted to the BMT floor. GULP. It was so scary when those doors opened and we were transported to what would be our home for the next unknown number of days.

Again, we were upbeat and actually ready to get on with it all already!

Matthew had his 3 days of yucky terrible chemo and then started the Total Body Irradiation. Hmmmm, things suddenly got serious and not so upbeat. Chemo was the start of non-stop puking. Radiation was the start of fatigue beyond anything imaginable.

The chemo….

The ambulance ride to the Barrett Center for radiation…

My very determined son……right before his 1st radiation treatment.

And before we knew it….Day Zero…..the moment we’d be working towards for months now….TRANSPLANT DAY (actually night) was here. January 24th, 2008!

2:30 am…the courier arrived with Matthew’s life saving cells…thank you once again to our wonderful donor!

3 am…….the buzz in the room was electrifying…

Final checklists were reviewed…

The cells…the beautiful cancer free, life saving cells…..were hung….the moment we’d been waiting and praying for was NOW…

To make the moment a bit fun, Mom organized the “cell dance”….

It took about 9 hours for the cells to transfuse….lots of throwing up ….then came the horrible rashes….but still those cells kept dripping in….

And we can’t forget the prayers around the world that were being said for Matthew…my cells phone was ringing, text messages were flying, alarms were going off at 3am…..all to pray and support Matthew. And of course we had hundreds of smiling faces cheering him on from our network wall…

And then the transplant was over and the very difficult painful recovery began….mouth sores…burns from radiation….pain as the new marrow began to engraft….the IV pole growing heavy with bottles of drugs to keep him safe….high sugar…insulin…super high doses of steroids….immune-suppressant drugs to help give our donor cells a chance to engraft and stay engrafted…..anti-nausea meds by the gallon, blood pressure meds to lower the sky high blood pressure….and let’s not forget the 3 scares we had that resulted in tests to check the bone marrow and spinal fluid….oh and the physical and occupational therapy which proved to be a highlight of our day actually…and the bags and bags of platelets and red blood cells….on and on…..

And slowly, the donor cells engrafted and began to fill Matthew’s empty bone marrow full of strong healthy cancer free cells. 34 days later….Mom began her Nurse training. Overnight, I became the person to flush lines, change caps, change dressings, run IV fluids round the clock, give meds thru the IV’s, prime the pump, change the batteries, give the non-stop oral meds…over 20 meds a day….aghhhhh

But the good news….we were sprung from room 507….out into the big, scary, germ-filled world……..

Greg and Sally helped us move to the Arcadia…which became our home until July…..who would have ever thought??

Slowly over the next 6 months, Matthew began to recover….he endured 4 hour nosebleeds, middle of the night ER runs, too many to count platelet transfusions, clinic appointments every other day….and yet he slowly began to heal.

Our family was able to share weekends together in Cincy….I missed my husband and little ones so terribly much. They were all so brave and strong as we travelled this transplant road together.

We spent birthdays, Easter, Memorial Day together in our little apartment…but boy were we happy to be together…

And of course there were Matthew & Mom fieldtrips! We had to be creative due to GERMS…

Remember the crazy and LOUD Cicadas??

And our picnics…

And our hikes……..(crazy folks that we were…)

Soon we found ourselves going home for weekend trips……boy was that weird!!

Before we knew it July was here and we were given the good news…we could GO HOME!!!

The summer was spent recovering and healing and getting back into normal (haha) family life. Soon, it was fall and restrictions were eased a bit more….transfusions were done and appointments were farther and farther apart.

Late fall began the GvHD issues. Matthew continues to have mild issues that steroids seem to be keeping calm.

We celebrated Halloween

And Thanksgiving….and then Christmas….stronger and healthier every day…

And yesterday we celebrated the New Year with our traditional pork and sauerkraut. We are once again filled with hope for a good, healthy and safe 2009.

Happy New Year everyone…thank you for supporting our family, for sharing our fears, tears and accomplishments. Thank you for continuing to pray for Matthew and for our family. We wish nothing but the best for all of you as well!

Love,
Nancy and Gang

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