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Wednesday, November 24, 2004 9:37 AM CST
We love you all so much.
Ann and I are now back in Denver. For now, we wanted to share with you the time and date for Timothy's funeral service:
It will be held in Denver next Tuesday, November 30th at 10:00am.
We will follow-up very soon with many more details surrounding next week's funeral.
Love,
Mark and Ann
** For those of you needing to give the airlines the name of a funeral home in Denver to receive special discounted fares, please use Horan & McConaty.
Saturday, November 20, 2004 5:00 AM CST
We love you all very much and are so sad to tell you that Timothy died just a few hours ago here at the hospital. We were with him and had a chance to realize what was happening and to cheer him on, but also to tell him goodbye.
Just as you have prayed for him and for us every day for the past few months, we would ask you to pray especially hard now for our little Timmy Time and for us. He will go to heaven on the wings of your prayers and we will go forward in your arms of love.
Love, love,
Ann and Mark
Thursday, November 18, 2004 12:13 AM CST
Day 90
WBC - 12.2
Hi everyone. Mark here at the apartment with my Mom for a few minutes before heading back to the hospital. Ann and her Mom are with Timothy as we speak.
Here’s a brief update as to where we are… Timothy is stable right now and currently breathing with an oscillator. Yesterday was exhausting for the little guy as he continued and still continues, to retain the majority of the fluid that is entering his body. In the early afternoon, when Timothy really began having more difficulty breathing and fluid was beginning to build up in his lungs, the decision was made to put him on a ventilator (and later, an oscillator).
This lightens the load on Timothy tremendously as it clears his lungs and allows him to rest more and focus on his one immediate objective – reducing the fluid build-up that continues to occur. The doctors will watch closely a few indicators to see how he is progressing in this area. The primary one is simply measuring the amount of fluid going in to Timothy’s body (all medications, liquid nutrition, etc.) versus coming out. They call this input/output. As for right now his input far exceeds the output but the rationale is that slowly he will reduce the differential and then swing in the other direction where he will drain this excess fluid. The doctors are waiting to see the little man “turn the corner.” There is no quick fix here – it will take days - and we will take our cues from Timothy.
Yesterday was a tough, tiring, day but I cannot tell you how much Ann and I drew on your strength as we stood with Timothy fighting. We could FEEL you all in that room with us and that made the difference.
We ask you to continue to send your positive energy and prayers Timothy’s way. Pray that the excess fluid begins to leave Timothy’s body, that the infection or GvH-related problem behind this is solved, and that he continues to heal from the transplant.
Grow cell grow!
Much love to all of you,
Mark
Tuesday, November 16, 2004 6:07 PM CST
Hello. It is 7pm and my mom and I are at the apartment to shower and eat and then we are going to head back to the hospital.
Last night Timothy's blood pressure dropped significantly, and they have put him on medications to support his blood pressure and are giving him more fluids. The blood pressure has been going down because despite the fact that he is overloaded with fluid, most of it is in the tissue, not in the veins.
Our challenge now is to figure out why the fluid is dispersing and to stop it from doing so, all the while supporting his blood pressure with medications and extra fluids. The doctors are looking at either an infection or GvH, or both, as the cause of all of this. We are hoping that one of the blood cultures will come back positive for something that we can treat specifically. In the mean time, he is on many broad-spectrum drugs to try and combat any infection. They have also significantly increased his GvH medications. This is a big balancing game and one that requires some tough calls by the doctors to figure out which route to take. Please pray very hard for wisdom for Timothy's medical team.
Mark and I are very scared - but we are trying to stay upbeat for T. I am gathering up some fun music and books to read to him when I go back over to the hospital.
Joanne is on her way down to lend some extra support - her conviction and hope are so strong - she will be a welcome addition to the team.
Please pray for:
1) a miracle - a full and fast recovery from Sandhoff's disease - as always everything is possible through God
2) wise doctors who are enlightened to make the right decisions
3) good blood pressure
4) that the extra fluid starts to come back into the veins and go to the kidneys and out out out
5) that his lungs and breathing stay clear
6) that the GvH calms down and that all of these cells we have worked so hard to grow start playing nicely!
6) for strength, courage, faith, and optomism for me, for Mark, and for our families
This has been a very difficult 24 hours, but I head back to the hospital on the wings of hope that your prayers give us. I will print the journal entries and read them to T.
Much love,
Annie
Tuesday, November 16, 2004 10:37 AM CST
Katy here, Tuesday, 10:00am Denver Time:
Annie and Mark have asked me to give you this update:
We need your prayers now more than ever! Timmy had a pretty rough night and found himself in the ICU this morning. So, we are asking for all your prayers and your good thoughts, and if you have chance to go to mass today, I know they really would appreciate it. We need to pray for Timmy's health, for his doctors' wisdom and for strength for Annie and Mark. Let’s get the word out, make sure that your prayer groups know, today especially Timmy, Annie & Mark need your extra prayers, smiles and good thoughts full of love and strength!
Annie and Mark will update you with the details as soon as they have a chance to get to a computer. Remember: GROW CELLS, GROW! Go AWAY fluid, Go!
Love, Katy
Monday, November 15, 2004 1:23 AM CST
WBC 6.8
Platelets 72
Weight 12.275 kilos
A bump in the road and back to the inpatient world…
We went to the Clinic Friday and after a long day of diuretics, diapers, and de-stating (term used when pulse rate and oxygen saturation levels decline), the docs decided that Timothy should spend a few days in the hospital – until they can sort out what is going on and settle on the best course of treatment. They had to do a bit of bed-shuffling, but managed to get us a spot in the Unit – around the corner from our old room.
We were happy to find Dr. Martin on the Unit this weekend and comforted to be welcomed to our room by Sameeya, who has not taken care of us before, but who was Cati’s primary nurse when she was inpatient. Dr. Parik had put Timothy on oxygen earlier in the day, so she got him comfortable with a blow-by oxygen tube (rather than putting it in the nose or wearing a mask, they just lay it on the bed next to him), and a few new medicines. Then, to add to the fun, he spiked a fever – which is usually an indication of some type of infection, so Dr. Martin started antibiotics and Sameeya drew blood cultures. Remember the ABC’s from a few weeks ago? Antibiotic, Blood Culture… here we go again…
We have since spent the last 48 hours trying to get to the bottom of the fluid and swelling, the decrease in his oxygen saturation, and the fever. Today, Timothy had a CT of his chest which showed some small, a-typical spots in the top of the lungs. We think these spots are the most likely cause of the fever and the oxygen issue. While we are not sure what kind of infection it is, the good news is that something we are doing is working; he is breathing much better and is off of oxygen as of this afternoon! Yeah!
The swelling remains a mystery – and it is getting worse, not better. I just left the hospital about an hour ago – Timothy weighs 12.275 kilos – one kilo more than when he checked in Friday. This means he is almost 7 pounds over his baseline weight. They are working to find the right concoction of diuretics and other medications to help him shed some of the fluid. I should hear from Mark in a little while as to whether the latest elixir has worked. For now, the solution eludes us. All of his cultures and tests are negative; they have looked at all of the likely organs (kidney, bladder, liver) through x-ray, CT, and ultrasound and so far everything there looks normal as well. The most likely culprit is GvH, but the docs are continuing to do some tests so they can rule out the possibility of any infections or other problems. As for tonight, the doctors are determined to find a way to drain some of the fluid and give Two-Ton Tim some relief. Mark is at the hospital and it could be a long night for the boys.
My mom came out to give us a hand for a few days, so I am going to stop here and have some tea with her and we will say our prayers and novenas. Lots to pray for! We are with all of you in spirit!
Grow cells, GROW!
Love,
Annie
Thursday, November 11, 2004 7:20 AM CST
Day 83
Counts as of yesterday:
WBC: 9.1
Platelets: 49
Weight: 11.18 kilos
Off we go to Clinic after a long, sleepless night. Timothy weight keeps going up and up and he is to the point where he just can't get comfortable (or even bend his knees!). Dr. K seems to think it is related to GvH, so she has started him back on another GvH medicine that we had stopped a week or so ago because of other side effects (it is not the seizure-causing medicine). I can only assume that she thinks the other side effects are more desirable than blowing him up like a balloon, but we did not talk with her directly yesterday.
These Clinic days are starting to wear on us. We went in yesterday thinking we would get one IV medication and an X-ray. We left having had two IV infusions, an X-ray and an ultrasound. The tests were all normal - which means that we still don't know where the fluid is going (it is not coming out the traditional way, that's for sure). The good part is that at Clinic we are surrounded by people who are full of hope and putting it to work. We are also surrounded by fabulous nurses, technicians (radiology people are fabulous), and of course the doctors. What a vocation these folks have.
We just wish we were more closely surrounded by all of you.
We'll keep you posted on the weight issue. Grow cells, GROW. Go away fluid, GO.
Love,
Annie
Wednesday, November 10, 2004 10:27 AM CST
* Internet connection troubles delayed posting this until Wednesday, Day 82.
Day 81
WBC - 9.8
Platelets - 64
Hemoglobin - 12.6
It is Tuesday evening and we are just getting home from Dr. K day at clinic with our two-ton son. Cheeks aside, he is a tank. Today they actually measured his “abdominal girth”. 47cm. Huge. As with everything in this crazy post-transplant world, there are several factors to weigh here: Is he just growing? Is this part of the steroid weight gain? Is he retaining fluids? Or, is it something else? So far, here is what we are thinking: He is growing, but not this much. The weight gain extends beyond his cheeks, so steroids are not the only culprit. Diuretics are not working. On to the next step now - tomorrow’s visit will include a trip downstairs to radiology for an x-ray to see what we find in the “something else” bucket.
We have a daily contest going with the nurses to guess how much T will gain. "Price is Right" rules, so if you are over, you are out. Mark is in the lead. If you want to join in, feel free, but you have to guess in kilos. Yes, this gives our French friends an unfair advantage in the contest. To set the stage, today he weighed 10.88 kilos. Last Wednesday, he weighed 9.72 kilos. Yes, we think in kilos, cc’s, ml’s, and centigrade now. Speaking of which, apparently we forgot to share the platelet chapter of our MD 101 class with you.
Platelets are the smallest cell elements in the blood and they help control bleeding by creating clots. When Timothy gets a platelet transfusion, it is actually white - as opposed to a blood transfusion, which is red. We (Mark, me, you) have platelet counts of 150,000 to 450,000. For the last few weeks, Timothy’s counts have been anywhere from 8,000 to 40,000, even when he would get a transfusion. Now, those numbers are starting to get better. He had a transfusion Sunday and his platelets measured 153,000 yesterday! Today, they are at 64,000 and tomorrow they will likely fall to between 20,000 and 30,000 which means he will get another transfusion. So, it will be two days between transfusions, then three days, then four… patience, patience.
We have more exact news on the drug that he will be trying. Dr. Tifft is working out the budget with the drug company and expects to start two children on the drug before the holidays. Dr. K has recommended that Timothy be in the second group, scheduled for a January start. She just wants him to be more stable before we introduce another element. We could not agree more, even though we are not sure where we are going to get the patience to wait a few more months. All part of God’s plan – boy I wish we had a draft copy.
Pray for all of us. Pray for all of the kids here – they are all so brave. Platelet prayers are especially in order for Cati as well. She has a mild GvH battle of her own going on and is waiting for a platelet rebound. Little cutie!
Grow cells, GROW!
Love,
Annie
Friday, November 5, 2004 12:42 AM CST
Day 77
WBC - 6.4 (as of yesterday)
It is Friday afternoon and we wanted to give you all a brief update before heading into the weekend.
Not much new to report since Ann's last journal entry, except that Timothy has begun to hold his platelets again --yesterday they were at 113! Way to go, little guy! After needing platelets every other day the last couple of weeks, it appears that T may only need them every few days (and as he gets better, hopefully the span between transfusions can continue to grow). In fact, if Timothy keeps up the good work, could we actually get a day off from having to go to clinic? Stay tuned...
Please continue to send your "Platelet Prayers" Timothy's way. And while you're at it, "Anti-Seizure Prayers" and "Grow Cells, Grow Prayers" are always welcome in Durham, as well.
Have a great weekend.
Love,
M, A, and T
Wednesday, November 3, 2004 1:36 PM CST
Day 75
WBC 6.4
Platelets 37
Twenty years from now, I can’t wait to be sitting at a baseball game and have someone ask, “ Do you remember where you were when the Sox reversed the curse?”
“Yes,” I will answer with a smile, “in North Carolina putting together a miracle, piece by piece.”
Mark just ran out the door to take the blood tests over to the lab at North Pavilion, Timothy is sitting in his swing drifting in and out of a morning nap, and I am finally writing to you. The adventure for the day will be to brave the germ world and hit Kinko’s to post this journal entry as our Internet access has been on the fritz for a couple of days. No worries – RoadRunner is coming to the rescue, but not until tomorrow. The last 10 days have been exceptionally exhausting on our end. Nothing overwhelming to report, but each day seems to have provided its own twist – resulting in more to process, more to learn, more medications, and much less sleep. Now we have so much to bring you all up to speed on. Here goes…
Last Tuesday we learned that Timothy has a mild case of graft vs. host disease (GvH). This means that the donor cells are realizing that they are in foreign territory and are attacking Timothy’s body. GvH manifests itself in a myriad of ways and can pop in for a visit any time in the first two years post transplant. In T’s case, the clues for Dr. K were an upset stomach, a small rash, and loss of platelets coupled with having “cold turkeyed” the Cyclosporine because of the seizures and switching him to a less potent GvH medicine.
To treat T’s GvH Dr. K increased his steroid dose last week. The result has been HUGE CHEEKS. We promise pictures soon – but we may need a wide-angle lens. Seriously. He has gained 1.2 lbs in 7 days – 6 oz in the left cheek and 6 in the right. It just makes him all the more kissable. The silver lining to all of this: having GvH is further proof that the donor cells are growing – and that they are feisty little cells!
No sleep is not a symptom of GvH, but it has been a side effect for all of us. The platelets have been the biggest culprit. Post-transplant, platelets are the second kind of cells out of the chute, after wbc. Timothy was just getting there. He had been several weeks without any GCSF (white blood cell growth stimulator) and was maintaining a wbc of over 3. And, he had been going 3-4 days between platelet transfusions. All of a sudden, he started to blow through his platelets. This means you bleed more – which is really fun in a teething baby who likes to chew on his tongue. So, we have had two trips to the BOP for late-night transfusions and platelets have become part of the daily Clinic routine as well. His parameters (set by Dr. K) now require that he get a transfusion any time his count drops below 40. A normal platelet count is between 150 and 400. (All of those numbers are in thousands.) Just in the last 48 hours, he seems to be doing better. It feels like when Dave Roberts stole second in Game 4 of the ALCS – the great platelet comeback is underway.
On to the much anticipated test results, which were… somewhat anticlimactic. The HHV6 was negative. Hmmm. The test is only 70% accurate to begin with. So, either the virus was there, but undetected by the test or it was not there and not the cause of the seizures. No sense of closure there.
Steady as she goes on the chimerism results – which is great news because it means that the graft is holding (the donor cells are hanging on). That said, it will be re-run as part of our 100 day study IN 25 DAYS, so we still have a chance to improve on our 86%! Grow cells, GROW!
How are Mark and Annie doing on Day 74? Well, in our very first meeting with Dr. K in July, she talked about how the first year post-transplant is particularly hard with metabolic children. They have so much to recover from as a result of the chemo, the extended hospital stay, the medications, and of course there is the race to get the enzymes into the brain to stop the progression of the disease. When you add to that the fact that Timothy is so sedated as a result of the seizure medications, it makes our days all the longer and the nights a little less restful, as we are unable to get any real idea of where he is along the continuum of underlying health. We pour patience, hope, and faith into each day, the fruits of the prayers that you send our way every minute. We also laugh a lot. From germ paranoia to Durhamitis and home health, we laugh at ourselves most often. The other day, though, we got some outside comic relief. We received a CD of excerpts from “This American Life” from some Chautauqua friends and laughed until our sides hurt as we listened to David Sedaris tell the story of he and his French 101 classmates trying to explain Easter to a Moroccan woman, without the benefit of key vocabulary like “cross” or “resurrection” and lacking any command of possessive pronouns.
“The rabbit of Easter, he bring of the chocolate.”
“It is a party for the little boy of God who call hisself Jesus.”
“He call hisself Jesus and then he die one day on two morsels of lumber. He die one day and then he go above of my head to live with your father.”
It felt so good to laugh so hard.
You are all taking such good care of Timothy and of us. I bet that there are people thinking about and praying for Timothy at least once an hour – at least! This means that our French family and friends have to do it all day during their day, so that they can pick up the slack while we all sleep on this side of the pond. N’est pas? Thank you not just for your prayers, but for reaching us with care packages, beautiful letters, pictures, and your voices over the phone.
So that was a longer journal entry than usual – here’s a quick recap: Timothy’s feisty little donor cells are acting up, he is blowing through platelets like the Sox pitching did to the Cards line-up, his test results are boring, Mark and Annie are hanging tough, and he is still our little Tipsy Timothy but now with Chunky Cheeks.
Grow cells, GROW!
So much love to all of you,
Annie, Mark, and Timothy
Monday, October 25, 2004 1:16 PM CDT
Day 66
WBC 3.3 (as of yesterday)
It is almost noon – Mark and Timothy are asleep after a long night. I guess Timothy was just so excited about the Sox second win that it took him a while to get to sleep.
We had a good, albeit gray, weekend. Durham was bumper-to-bumper with cars bearing Virginia plates and Hoos bumper stickers – loyal fans who traveled south to see UVA trounce Duke in football. As for us, we opted for baseball over football this weekend. So, we stayed up late wathcing the games, slept in, went to the Clinic, and then took another long drive or two. Finally, finally, the trees are starting to change. Red, orange, yellow – they are spectacular.
Timothy has been having fun with us again. We tried to explain to him that Halloween is next week, but he couldn’t resist trying on the “Kid without platelets who bites his tongue” costume. Pretty gnarly. Even worth a late-night trip to the BOP to get him those missing platelets. Who knows what he will think up next.
We are expecting to get the chimerism results (donor/host ratio) back tomorrow or Wednesday and hope to get word on the ever-evasive HHV6 test results as well.
We’ll keep keeping you posted!
Love, love,
Annie, Mark and T
Grow cells, GROW!
Saturday, October 23, 2004 11:56 AM CDT
Day 64
WBC 4.6
Tuesday’s meeting with Dr. K went well. She is great about setting expectations. The expectations for this week are that while it will take time, several weeks even, Timothy will acclimate to the seizure medications and start acting more like himself again. When children have a brain disease it takes them more time to recover from trauma to the brain or sedatives. The best news is that she does believe that the seizures are gone. To be sure we will get another EEG next week, but in the mean time, she just wants us to be patient. Speaking of patience, did I mention that I have taken up knitting? Some creative, crazy friends from Denver had the thought that I needed a hobby. And so, along came this HUGE box exploding with a rainbow of yarn, all kinds of needles and instructions. I started with a hat pattern for Timothy about a week before we knew about the seizures. All was going well. Then we diagnosed the seizures. There went the stitch tension. The bottom of the hat fits Timothy, but the top is a little tight, to say the least.
I started knitting my second hat in Game 4 of the ALCS. I really wanted the Sox to win, and even more, I wanted to see the Yankees choke. As a dedicated baseball fan, I fell prey to superstition and though I did change my underwear daily (I understand that some of the players have playoff beards AND playoff underwear – gross), I proceeded to knit my way through Games 5, 6, and 7, and am convinced that this hat is the reason that the Sox are in the Series and the Yankees are not.
Did I mention that Dr. K knits? Oh, not just knits, but is a champion knitter, according to all of the nurses. Every year she knits an afghan that is auctioned off at the annual hospital dinner. Where did she come from? I continue to be amazed. I mean really.
Back to T. Three days since we met with Dr. K and we do think that slowly – very slowly – he is coming around. The doctors have said that the sedative effect is like being tipsy. It is hard for Timothy to focus, to balance, and to move. Tipsy Timothy. It is a little hard to see him like this, but it is WAY ahead of seizures.
The most exciting news from Dr. K was that the drug study we hope to be a part of is set for November. Through Ellen Patterson (GU friend), we met with Dr. Tifft at NIH in July. She is a metabolic specialist with a specific interest in Sandhoff’s. She has been working with a drug company on a new drug, which the FDA approved in February to treat Sandhoff’s and Tay Sachs. The first step in this process was to do the transplant and now we are grateful that we have another opportunity to help Timothy even more. You see, your prayers continue to inspire so many miracles for Timothy. We will all talk with Dr. Tifft about what the expectations are for the drug and the study in the next couple of weeks and we will keep you posted. Please pray very hard for this – it could be the key to getting much more than T’s smile back for him!
Meanwhile, his mouth is much better - the anti-fungal medication that he is getting seems to be working. They are going to keep him on it for three weeks. For now he gets it at the hospital, but eventually we will give it to him at home. Apparently Home Health was not too crazy about this idea. It is more complicated than the other medications because it does not come pre-mixed. So, they are sending out a nurse for more courses. I think we have a reputation. Don’t anyone tell them about the superstitious baseball knitting thing – they won’t let us have this medication, I just know it.
Have a great weekend. We should have the results of the HHV6 and the donor/host cell percentage tests back next week. Grow cells, GROW.
Love, love,
Annie, Mark, and Timothy
Tuesday, October 19, 2004 12:48 AM CDT
Day 60
WBC 3.9 (as of yesterday)
Hello everyone. Today is Dr. K day. We are looking forward, as always, to Timothy spending some time with her.
The seizure activity seems to be better on the whole and his mouth is much better (he had an infection that was making it very sore), but T had a very restless night last night and continues to be out of sorts today. With all of the medicines, side effects, infections, and so on, we are never exactly sure what is going on and we are still a bit worried about him. Good thing it is Dr. K Day! In addition to the normal Tuesday stuff, they are going to redraw the test that shows the percentage of donor cells to T’s cells. We are hoping to improve on the 86 percent. We should have the results in about a week. Grow cells, GROW!
We did have a good weekend. Timothy slept well – both day and night – and we even took a drive through a little town called Cary and past the State Fair in Raleigh. The roller coasters look so fun! All in due time…
On Sunday evening I attended a perfect mass. Feeling a little tired, a little overwhelmed, I wound my way through Duke’s campus to the Chapel for the 9pm student mass. The first song was “Be Not Afraid”, an all-time favorite of mine, which has taken on new significance lately. The second song was “Here I am, Lord”, the song we sang at Timothy’s baptism. Not a bad start.
The first reading from Exodus was about a war in Israel. For the battle, Moses climbed to the top of the hill and raised his hands over his head. As long as he kept them raised, Israel had the better of the fight. When his arms tired, two of his friends held up his arms for him.
Thank you all for holding up our arms for us.
The second reading was a reading from the letter of St. Paul to Timothy advising patience and persistence. Enough said.
In the Gospel, Jesus talks to his disciples and tells them to pray always, even when they are weary, and then shares a parable about a judge who grants a decision to a woman largely because of her tireless persistence. Suddenly, I was not tired anymore.
The final song of the evening was “Lord of the Dance”, which was the recessional at our wedding.
Keep praying – you are inspiring miracles.
Love, love,
Annie
Friday, October 15, 2004 11:38 AM CDT
Day 56
WBC 4.2 (as of yesterday)
Hi. It is Friday morning and Mark is off to run the labs over to Clinic. Timothy is cashed out on the bed – like he was in the middle of a jumping jack and just fell over.
This has been another long week, but we are moving in the right direction with Timothy. On Monday morning, he had an EEG and we were delighted to find that it did not show any active seizure activity. Cycle broken! T does still get worked up occasionally, especially at night, but it is getting better with each day. We are still waiting on the results of the HHV6, but the symptoms are going away with the treatment, so I expect that Dr. K hit the nail on the head again with this diagnosis.
I loved the childhood book, “A is for Artist, Alone by the sea, painting a picture of one lonely tree. B is for Baker, your nose tells you when, he pulls from the oven three gingerbread men.” Now, we are learning a whole new alphabet, but it does start with the ABC protocol… A = Antibiotic. BC = Blood Culture. Any time there is a reason to believe that one of the kids has an infection, and in particular a fever of 101.5 or higher, a broad-spectrum Antibiotic is prescribed immediately as a prophylactic measure and then Blood Cultures are drawn from each IV line. Once the results are back, the doctors tailor the medication more specifically to the findings. Since Monday we have cultured blood, sinuses, and a few other things. As a result, we are on three more new medications to treat potential infections. That means that the rest of the alphabet is at home in our medicine cabinet. The good thing is that Mark’s MBA is coming in handy as we have made an Excel spreadsheet schedule to keep everything straight. Ah, Timothy – your parents are total med nerds now.
We are off to Clinic shortly. On today’s docket are a platelet transfusion, which means he also gets Benadryl (as if he needs another sedative at this point), speech therapy and physical therapy.
The Guestbook (that means all of you) continues to be the highlight of our day. Timothy sits in our laps and we read all of the entries to him. He likes to bang on the keyboard. Maybe I will ask him to write one of the journal entries. Of course now his alphabet is all confused, so who knows what he will say.
We love you all very much.
Annie, Mark, and Timothy
Grow cells, GROW!
PS: N=New P=Pictures
Monday, October 11, 2004 0:55 AM CDT
Day 51
WBC 4.2
The BOP…
Well, the weekend has been another long two days in Clinic and we also visited the BOP (Bone marrow Outpatient Procedure) Thursday and Friday in the wee hours of the morning. The BOP is a closet with a bed and a blood pressure machine up in the Unit across from our old room. It was a bit surreal to be back on the Unit. Timothy’s room has a new occupant. In fact, many of the names on the doors and posters have changed. It is heartbreaking and inspiring alike to see so many children pass through those doors. We got to see some of our nurses, including Jenn, Mandy, and Holly. Having been at the apartment with Timothy now, I can hardly believe that the nurses are able to take care of two kids at once! We miss them very much – not just for their work, but also for their smiles. Each night, one of the docs on call observed Timothy and gave him an anti-seizure medication to help him calm down. Last night we did not have to go, and I doubt we will need to go tonight either. The days however, have not gotten any shorter. At least the Rainbow Day rooms have TV where we can watch playoff baseball. I am hoping that it will be an Astros vs. Red Sox Series. Wouldn’t it be fabulous to see Clemens, of all people, vie with the Sox for the Championship?
The Chicken…
Yesterday, we were in Clinic, where we met with a weekend nurse practitioner, Colleen. While we were describing the previous night to her and Timothy’s activity (or, really, lack of activity), her phone rang. Actually, it clucked. Like a chicken. Timothy turned his head and laughed! I cried. Colleen called Dr. K. Mark imitated the cluck (perfectly, by the way) for a while, and Timothy laughed some more. That glimpse of his former self was just what I needed. I actually slept almost 12 hours last night, thanks to that peace of mind and my mom and Mark taking care of Timothy for most of the morning. Mark got some sleep, too, while Mom and I spent the afternoon at the Clinic. Now, if T could just sleep!
The Challenge…
Keeping that smile around. We are still trying to get exactly the right medications onboard to help Timothy stay in play mode. It will take several days, or possibly even a couple of weeks, for him to get back to baseline in terms of alertness, even once the seizures are stopped. The key though is halting the seizures ASAP, so that the damage is not long-term. As these seizures are very a-typical, making them difficult to identify clinically, it is likely that he will get another EEG this week to help us determine whether we have been successful in quieting them.
That is all of the news fit to print – oh – except that the Redskins lost and the Broncos won – YEAH! Mark is in bed so he can’t read this journal entry and edit this out: GO BRONCOS!
Love,
Annie
Grow cells, GROW!
Thursday, October 7, 2004 11:36 PM CDT
Day 48
WBC 9.8
Good news. The diagnosis is that the seizures are NOT a progression of Sandhoff’s! There are indications that they are either a result of Cyclosporine or the HHV6, or both. HHV6 is a common virus that, if contracted by an average person results in a cold. In Timothy’s case, his immune system is still so new and compromised that the virus has a field day. The best news is that both Cyclosporine and HHV6 are treatable and reversible!
Dr. Kurtzberg was on the case all day. In addition to consulting with a myriad of experts on the EEG and MRI results, she spent a good part of the afternoon with us piecing together the diagnosis and directing a new course of action. For the next few days the priority is to get the seizure situation under control. With input from the neurologists, Dr. K is working to find just the right balance of medications to stop the seizures without over-sedating Timothy. I call this the “get T’s smile back” part of the program.
In addition to stopping the Cyclosporine and adding the anti-seizure medicines, we did a spinal tap today and the fluid will be sent out to a lab to test for the suspect virus as well as a full battery of other screens and tests. The results will not be back for about 10 days, as there is only one lab in the US that does the test. In the mean time, changes to the overall course of treatment are being made based on the assumption that both the Cyclosporine and the virus are part of the problem. Timothy’s medication regime has totally changed – the domino effect launched by taking away the Cyclosporine and adding anti-seizure medications is impressive. Hello, Home Health. Back to training we go.
OK I have to be more specific – “we” did not do a spinal tap. Dr. K did the tapping. Sue Wood held Timothy still. I watched. Mark sat in the waiting room. Timothy slept through it all. And, as I looked on, I was so happy to see T in such loving and capable hands, Dr. K’s, Sue’s and all of yours. Thank you so much for praying so hard for him. It is working.
Tomorrow morning will take us back to the Clinic for more evaluation and lab tests. The next few days will be long as we work out the seizure medication levels and continue to fine-tune. They should be slightly less stressful, however, since we have a better idea of what we are up against. We are praying that he gets calmed down soon, that the diagnosis holds and that the treatment is effective, that he stays otherwise clear of infection, and that the cells keep growing!
Love to everyone,
Annie and Mark
Flu Shots: We are planning to come home to Denver in a couple of months and hope that Timothy will be able to socialize by then, even if just a bit. Given his immune system, he is not able to get a flu shot, so everyone he comes in contact with MUST have had the shot (the spray vaccination does not count). Making sure his entourage is protected is the only way to protect him. So, since there is reportedly going to be a shortage of flu shots, please be first in line in the next two weeks. We are so excited to see all of you and don’t want anything to get in the way of it!
Wednesday, October 6, 2004 10:44 PM CDT
Day 47 – Part 2
It is Tuesday evening around 10:30. We arrived home just a couple of hours ago with very little news on the seizure front, but a re-engineered medication list nonetheless. The MRI was taken at 5 and so by the time we finished, the only person available to read the results was a fellow, who did not find evidence of Cyclosporine (the med they think could be at the root of this). According to Dr. K, that is preliminary and incomplete information at this point and the diagnosis is still an “open book”. She is meeting with the senior team from the radiology department tomorrow morning to review the test in more detail. The EEG is scheduled for tomorrow at 10:30am. Between the two tests we should have more answers early tomorrow afternoon.
In the mean time, we have stopped the Cyclosporine and made several other changes to the medication regimen, including the addition of anti-seizure medications. Timothy was heavily sedated for most of the day, both in an effort to stop the seizures and to keep him still for the MRI. (Boy, do those things make noise!) The seizures look nothing like what we see in the movies, they are a much more gradual and gentle motion, with the repetitive and persistent nature of the movements being the biggest indicator of what is going on. Tonight he is exhausted but seems comfortable and we are hoping for a relatively good night of sleep once the Yankees game is over. We are due back over at the Clinic at 8:30am and plan to be there all day. We just want to see that little smile again soon!
These really have been very difficult days for Mark and me. Mark went to mass today at noon and I made it to the prayer and Eucharist service at the chapel as well. We are trying to trump wild speculation with trusting and confident prayer. Your thoughts and notes in the Guestbook really help us with that. It is so incredible to be able to reach out to all of you with such ease – thank you Duke and CaringBridge!
So for now, the goal is the same:
May the seizures be related to medications, may they be treatable, may they be reversible, may those working with us at the hospital be wise and gentle, may Timothy be strong and well, and of course, grow cells, GROW!
XO,
Annie and Mark
Wednesday, October 6, 2004 7:14 AM CDT
Day 47
Good morning. It is 7:50 am and we are headed over to the hospital in just a few minutes. We want you all to send us your best prayers and strongest positive energy to meet us at the front door of the hospital and keep us company there all day. We had a long day yesterday (we were at Clinic from noon to about 10pm), but believe that we are on the right track to getting to the bottom of the sleeplessness. Dr. K spent about an hour with Timothy yesterday evening, and now believes that he is having seizures, which are likely at the root of his sleeplessness, lethargy, etc. That news took the wind out of both Mark and me, but we are at least thankful to have something to track down and deal with – and now, something very specific to pray for.
One of the medications that he is on to prevent graft vs. host disease (cyclosporine) causes seizures in some children, so we are hoping that is what the cause of Timothy’s seizures is. There are also two viruses that can cause seizures. And, of course, Sandhoff’s can cause seizures. Today we will go get an EEG (test where they put electrodes all over the head and watch brain activity) and a MRI brain scan. Those tests should tell us what kind of seizures he is having and based on the results, Dr. K can direct the proper course of action. In the mean time, Dr. K said that we should pray that these are medication-induced seizures as those are both treatable and reversible.
Whatever this is, one thing we are always sure of is that God is keeping a close eye on us, directly and through all of you. We know that you are all dedicating time to Timothy each day in your own way. Today it would mean so much to all three of us if you would do something extra-special – go to church, light a candle, or maybe get together with some friends for a quick prayer. In the last 4 days, without the aid of GCSF, Timothy’s WBC has gone from 3.2 to 6.2 to 6.4 to 8.2! So, our prayers are all definitely being heard. Loud and clear today: may the seizures be related to medications, may they be treatable, may they be reversible, may those working with us at the hospital be wise and gentle, may Timothy be strong and well, and of course, grow cells, GROW.
Love, love,
Annie, Mark, and Timothy
(We will post another journal entry when we know what the results of the tests are, which should be within 24 hours.)
Thursday, September 30, 2004 10:30 PM CDT
Day 41
WBC 6.7
GREAT NEWS: 86 percent OF THE CELLS TESTED ARE DONOR CELLS! So what about the other 14 percent? Well, as Sue Wood put it, they love to open the results and see 98 percent (top amount the lab will report), but they do not worry unless the count is below 50 percent. In Timothy’s case, the test was done a bit early, since he engrafted at Day 23 out of a possible 42. So, just to be sure, they will re-run the chimerism (DNA test to see whether the cells that engrafted were donor cells or host cells) at the end of October. So keep praying – Grow cells, GROW!
Other news: Sleep may be on the way! After fruitless trial and error changing existing medications, Dr. K and Sue put their heads together and decided that Timothy is likely going through withdrawal. Though we were very judicious in giving him narcotics in the hospital, Timothy was on a minimal dose of fentanyl for nearly 30 days. The upset stomach, sleeplessness, general irritability etc., may well be due to having weaned that drug too quickly in the last week at the hospital. So what does one use to treat drug withdrawal? More drugs, of course. We will start a very low dose of methadone this evening and see if that does the trick, and then Dr. K will wean that over the course of the next several weeks. If that does not turn out to be the magic elixir, Mark and I get to take the methadone.
Even more news: Home cookin’! No, Zoom is not coming back yet, but we got an email today that the “moms” at Immaculate Conception have adopted us. Immaculate Conception is Father Steve’s parish – you remember Father Steve was the one who came to be with us on Transplant Day. The moms have each taken a week between now and Thanksgiving when they will bring us a few meals. Goodbye Papa John. If their cooking is anywhere near as warm and soothing as their welcome and prayers have been, we may never leave Durham. (Just kidding, Denver family and friends – we can’t wait to see you all.)
So, we are not out of the woods yet, but we continue to have so many reasons to be thankful. We are praying to keep infections away, to keep Timothy on the path to recovering from the turmoil of chemotherapy, and of course that the cells continue to grow and spread those good enzymes! And, we pray each day for all of you and for the other children in the Unit and their families.
Ok – I’m off to deal with one of the IV pumps. Mark and I have vowed that we will NEVER buy another appliance that beeps. Never.
We love you all.
Love,
Annie
Wednesday, September 29, 2004 9:56 AM CDT
Day 40
WBC 19.5 (as of yesterday)
Good morning. We just finished drawing labs, which Mark is running over to the clinic. It is 9:30, so we are running a bit late – but this time it is due to a pump malfunction, not a parent malfunction.
Yesterday was a long day, as expected. We went to clinic where we met with Dr. Kurtzberg and also got a visit from Lisa, Timothy’s physical therapist.
Dr. K, clad in overalls and a purple fleece, came by with two pre-med students in tow. These are the visits when decisions are made about his medications for the coming week. Timothy’s WBC was so high that she is stopping the GCSF altogether. She told us to expect his WBC to go down to 7 or 8 today and then to 3 or 4 tomorrow. Any time it drops below 3, we will give him one dose of GCSF. Over the next week that may happen a couple of times, but generally, they expect him to be able to start maintaining an adequate WBC on his own. Since the GCSF focuses the body’s efforts on producing white cells, and in particular, neutrophils, the collateral effect of being off of GCSF is that the new blood making factory will be at liberty to produce other kinds of cells as well. We should start to see his platelet count come in, for example. Dr. K also ordered a reduction in the steroid he is taking to combat Graft vs. Host Disease (GVH). Provided GVH does not rear its ugly head, the steroid will be weaned slowly over the course of the next several months.
While we were in one of the isolation rooms in Rainbow Day, several of the bigger kids, were working together on two spectacular quilts. They were beading and embroidering the most fanciful quilt I have ever seen complete with trees, moons, stars, clouds, animals, and the thoughts and dreams of the kids woven throughout. There is a volunteer who works with the kids on the quilts, which are ultimately sold at a benefit auction at year’s end. Last year, the quilt was purchased by a benefactor who then donated it back to the hospital, where it is on display in the clinic lobby!
While T looks great on paper, we are still trying to get to the bottom of his discomfort and sleeplessness. Dr. K thinks that eliminating the GCSF from his regimen should help. We hope so! We could really use some sleep ourselves. We will stay here until his morning meds are done and then we will head over to clinic again and to see Sue and get the daily report. Then, once the sun has gone down, we plan to take him for a walk outside! The remnants of Jeanne have passed, so the fall nights are wonderful again. I heard that the aspens are in full color now – send pictures. We are excited for the leaves to turn colors here as well – so far, so green.
We love you all very, very much.
Annie, Mark, and Timothy
Monday, September 27, 2004 1:28 AM CDT
Day 38
WBC 9.8 (as of Sunday)
What a week! As I think back on the last five days, I am so thankful to be out of the hospital and at the apartment, but even more so, I am thankful for our ability to laugh – at ourselves, at Timothy, at “home health”.
We left the Unit on Tuesday afternoon, following a long morning of departure training and infusions. They “tanked Timothy up” with platelets, hemoglobin, and potassium to hold him over for a few days until we got into the swing of things with home health and the Clinic routine. Getting into the swing of things is one way of thinking of it - baptism by fire is the other way.
As Mark and I are sitting here talking about how to describe this to you all, we are sort of at a loss. In some ways, it is much like it was coming home from the hospital with Timothy as a newborn – or maybe coming home with triplet preemies… The hardest part is the great guessing game. Sleeplessness, crankiness, and exhaustion abound, but getting to the bottom of why is not so easy. So, we are constantly trying to isolate certain medications or practices to see whether we can identify the problem and make the right changes. We miss the on-hand expertise of the nurses on the Unit. I had a dream that we installed those orange “nurse call” buttons in our bedroom. Short of that, we have phoned the Unit and Home Health no less than 3 times a day to troubleshoot or double-check one thing or another. Thursday night was the very worst – simply everything went wrong that could have. The syringe broke off in the tube, we dumped half of the medicines on the floor, the 12-hour “any dummy can run this thing” IV pump turned off after 9 hours, the answering service gave the wrong number to the call-back nurse who consequently never called back – and T, enjoying watching his JD/MBA parents flub it up at every turn, did not sleep a wink, lest he miss some of the fun.
The Clinic visits are the focus of the day. We take morning labs (blood tests) here at the apartment and one of us runs them over to the bone marrow lab at around 8am. Then, we give him his morning medications and head over to Clinic around 10. The rest of the day is unscripted. His lab results determine whether we just have a visit with the nurse practitioner and doctor or if we make a visit down the hall to the “Rainbow Room”, which is the day hospital and the place where all procedures and infusions take place. The Rainbow Room has about 8 isolation rooms with sliding doors looking out to a common area with a nurses station and row of recliners where other kids sit to receive their meds and even radiation. There are televisions, DVD’s, and video games for the bigger kids. For now, we go to the isolation rooms since Timothy was so recently transplanted.
If we don’t go to the Rainbow Room, then we wait in the “Fish tank”, an isolated well-child waiting room, until we are taken to our exam room. We recognize some of the nurses from the weeks we spent in testing pre-transplant. They were all so happy to see us back and out of the Unit! Lynn noticed that Timothy has grown (three inches!). Most of all, we are thrilled to have daily visits with Sue Wood, our primary nurse practitioner. Actually, all of the NP’s we have met are terrific, and there are several that we know now, since we worked with them during their rotations on the Unit.
The kids wear masks everywhere except in the exam rooms, where they can take them off if the door is closed. Timothy also wears his mask outside and even in the car. We are allowed to take it off at the apartment.
Once we come home from the Clinic, it is time to start the evening round of medications. Most of these medications will be weaned over time, but are necessary now to fight infection and high blood pressure, to prevent graft vs. host disease, and to promote cell growth.
This week should be better than the last. Here is what we are looking forward to… On Thursday or Friday, we will get the results from the donor test taken last Wednesday – to see the percentage of donor cells to T’s cells (this is the big one – so pray, pray!). Also, if Timothy’s WBC can get back up over 10 again, we will decrease the GCSF doses to one per day (one less med to give at home – woo hoo!). We should also start seeing speech therapy and PT at Clinic. And Tuesday, we will see Dr. K. for our weekly visit with her.
We are going to try to get back to daily journal entries and hope that we will hear from you all even more often, too! We took several pictures of the Unit and our departure, which we will post a few at a time this week. Now that we are completely moved into the new apartment, Internet access should be more straightforward. While it is fabulous to be out of the hospital, it is a bit lonely and we love logging on and hearing from you or getting calls and voicemails.
Grow cells, GROW! Go donor cells, GO!
Love,
Annie, Mark and Timothy
Wednesday, September 22, 2004 4:37 PM CDT
Day 33
WBC: 11.5 as of yesterday
Wow...they made it!
Pat here (aka "Zoom").
As you can well imagine, yesterday was STRENUOUS. Even the warning going in that this particular day would be trying, didn't prepare Annie and Mark for the ordeal and details surrounding this week. But deal they did, and late last night, when I spoke with them, they were still without internet access in the new apartment, but anxious to let all of you know: "We did it"! T was fine and happy and resting. And the joy in their voices could not be missed. As intense as these past weeks have been, they are relieved to be moving into this new chapter. This move is huge. Life on the outside after 45 days will be a challenge. They started bright and early at the clinic today.
Know how reassuring your prayers, support and thoughtful, quiet ways are. Thank you.
love,
Pat
Monday, September 20, 2004 0:35 AM CDT
Day 30 (posted Sunday night)
WBC 6.5
This is shaping up to be a big week for the three of us. Timothy comes back to the apartment on Tuesday or Wednesday! The thought of having him all to ourselves in a place larger than a shoebox is exciting, if not intimidating. Not only will we really miss the care he was given in the Unit, we are also going to miss the daily interaction with the nurses and staff members who were so kind to all three of us. They held our hands, literally at times, through the first phase of this. We have been so privileged to have their help and to see God working through each one of them to help Timothy.
Mark will be moving us to the new apartment tomorrow morning - across the road and up a flight of stairs. Goodbye mold! With the help of three fabulous people (thank you Carrington, Bridget, and Mark H.), we got the new place spic, span, and sanitized for T and packed most of our things. He will be safe and happy there. Tomorrow afternoon also brings training for Mark and me for Timothy’s home care. His medical needs remain intense and so in addition to the training we receive, a nurse will visit us at home twice a day for the first several days to check in on us. Clinic visits will also be daily for the foreseeable future. And of course, he will continue with PT, OT and speech therapy. We will post new pictures this week to show you more of the Unit, a few of his nurses, and his departure! I hope he gets a little more comfortable with the mask he will be required to wear. We took him on a walk around the block today and he gave the mask a piece of his mind – and us, too, for putting it on him.
Please pray for us this week – that the transition to outpatient happens as planned, that Timothy continues to make progress growing cells and staying infection-free, and that the donor cells make haste to populate his brain cells with the missing enzyme to stop Sandhoff’s in its tracks.
As you can see, Timothy's cell count continues to increase. A drug that he receives daily accelerates the growth, “GCSF”, or as I call it, “Grow Cells Super Fast”. Once his count hits about 20, they will wean him off of the GCSF. Until then, grow cells, GROW!
Love,
Annie
New address again:
100 Glengary Court
Apartment 205
Durham, NC 27707
Saturday, September 18, 2004 0:46 AM CDT
Day 28 (Friday)
WBC 4.5
Disclaimer: I am writing this on 4 hours of sleep in the past 36… so no filters… no grammarchecks… no promises… but a full report nonetheless…
It has been three days since we have had time to write (or to think, or sleep, or anything else, for that matter). In those three days, much has happened, but the best of all was last night when the nurse came in with the news that Timothy had jumped from a WBC of 2.2 to a harrowing 4.5! The cell dance worked again! I was so excited that I didn’t just do the usual late-night text message to Mark, I called him. I hope to hear more good news in a few hours from the boys…
T is living the saying, “no pain, no gain”. Miserable is how I would describe the last 24 hours, but we are thankful that the doctors think it is related to engraftment rather than an infection or other problem. It is like having a severe flu – he is achey, hot, and really irritated that nothing truly gives him relief. It does come in waves and he is a bit better tonight – I even got a smile before I left.
Just a note on the tests: since T is officially “engrafted” they no longer test the ANC – the assumption being that the segs and bands are growing proportionately to the overall count.
The “D” word has now not only been mentioned, it has been given a date. If all goes well, we will be discharged and bringing Timothy back to the apartment here next Tuesday or Wednesday. In the mean time, there is even more prep involved than we had been counting on… (Pourquoi faire simple, quand on peut faire compliqué?)
For the last 10 days or so, we have started to notice some black streaks emerging on the bottom of one of the bathroom walls … you guessed it … mold. Actually, my mom noticed the first signs of it when she was out here and recommended that we check it out. So we did. The apartment manager said not to worry – that it was just the oil-based paint coming through the water-based top coat. Between the not-so-subtle moldy smell and the manager’s obvious conflict of interest, we decided to bring in an expert. A mold or fungus infection can be extremely hazardous for Timothy, since we don’t have the medicine or technology to treat mold infections the way we do bacterial infections and viruses.
I’ll leave the details of the inspection and ensuing negotiation with the apartment complex to your imagination and simply tell you that we are moving. This means cleaning, recleaning, cleaning some more, installing new filters in the ducts, and so on. Luckily, Bridget (G-town girlfriend) has volunteered to make a last-minute trip down to Durham to marshall the project and a couple of local friends will pitch in as well. More hassle, expense, and anxiety than we had bargained for, but as we learn to really count our blessings, we are just thankful to have caught this before discharge!
This weekend we have a 4-hour pass to bring T back to the apartment. Yikes! We’ll write more more later on what living “at home” will mean for us and for Timothy but to give you an idea, Dr. Martin says that it is the parents who ARE nervous who he DOESN’T worry about. Clearly, I will be at the bottom of his worry list.
We are so touched by your notes, good wishes, cheers, and especially your prayers. And when I say touched, there are moments we can literally feel the prayers and strength coming our way. Days when we get notices of masses being said or prayer groups praying for Timothy are wonderful. Days when we receive your thoughtful, personalized care packages and beautiful letters of encouragement are wonderful. I could go on, but I am at the apartment alone, and it puts me dangerously close to tears to write about it for too long. Is it overwhelming? Absolutely. Is it appreciated? More than you could ever know…
Love, love to all of you.
Annie
Grow cells, GROW.
Our new address is:
100 Glengary Court
Apartment 205
Durham, NC 27707
Tuesday, September 14, 2004 10:39 PM CDT
Day 25
WBC 1.5
ANC 1100
Since we last wrote in this journal two days ago, Timothy has been very busy growing cells. After a WBC of 0.9 on Day 23, Timothy has followed that up with two stellar days of 1.5! Bethany’s “cell dance” apparently worked so well, I understand some other nurses are trying to learn some of the complicated footwork for their patients.
So, with three straight days of ANC > 500, the doctors technically consider Timothy engrafted! Way to go little guy!
With engraftment comes talk of discharge, so Ann and I are staying focused on the job at hand: keep Timothy happy and healthy – avoid infections, keep chest and lungs clear (we got a chest x-ray back yesterday and he is clear at this point. Yeah!), etc. – and on schedule to be moved back to our temporary housing in Durham. This means I have become the master of the germicidal wipes and Ann is an expert at removing a dirty diaper with one hand and applying creams and lotions with the other germ-free hand at the same time (the diaper rash is looking better thanks to this very interesting technique).
So, when do we move out of the hospital? It is tough to say at this point. It could be a week or maybe a little longer depending on Timothy’s WBC counts and many other factors. Your prayers have gotten Timothy this far. Keep praying that Timothy counts continue to rise and that he can finish the hospital phase and get phase 2 underway very soon.
Grow cells, GROW!
- Mark
Sunday, September 12, 2004 7:33 PM CDT
Day 23
WBC 0.9
ANC 520
The beginning of another week and of the football season… if we can coach T like Gibbs is coaching the Redskins, we are going to be in great shape. We watched him beat the Bucs today – not a bad start! Hopefully the Broncos will be 1-0 after tonight’s game as well. I don’t like to get behind in my annual bet with Mark about which team will have the better season record…
As you know, on Friday (Day 21), Timothy’s WBC was 0.9 and his ANC was over 500. Yesterday, it dropped back to 0.5 and 270, which was a bit scary for Mark and me. We did a lot of praying and Timothy worked harder last night and got his counts right back up there! Whew. Now, we need to string 3 days like this together so he will be “engrafted”. We hope that this is the beginning of those three days. Bethany, our nurse last night is on again tonight and she has promised to do her special “cell dance” again.
We are also still wrangling with this diaper rash – a mystery to us and to the docs - and we are going to get a chest x-ray tomorrow to make sure his lungs are clear since his breathing is a bit irregular. More prayers, more prayers.
We are so grateful for otherwise “little things” here in the Unit. It is so helpful to count our blessings each day. Yesterday was one of Timothy’s best days in a long time. He was peaceful, happy, and seemed comfortable for most of the day. His PT went very well, we walked the halls, read books, listened to music, talked about how to be a champion, said the rosary, and looked at pictures of friends and family. Our neighbor, Elijah, leaves tomorrow to begin his outpatient journey and we are so happy for him, if not sad to see him go. We create these funny relationships on the Unit, smiling through windows and passing quickly in the hallways, but his family is one of those special families that just radiates peace. Another family put party favors in everyone’s gift box because today is their son, Cory’s, birthday. A few little toys and stickers go a long way toward smiles!
We miss you all very much.
Grow cells, GROW!!!
Annie
Thursday, September 9, 2004 11:38 PM CDT
Day 20
WBC 0.8
ANC 472
Day 20 is almost over here – but a good cup of tea and reaching out to you all is just-right bedtime medicine. Timothy’s count came in at .8 this morning and his ANC is almost to that magic 500 mark. Jenn King is the nurse this evening – she was there when he made it to 0.1; I am hoping she will be there for him to make it to 1.0! If we make it to 1.0, the ANC should jump over 500 and if it can stay there for three days, the docs will start preparing us for discharge.
We did have to work really hard for these most recent blood cells – no sleep for the weary last night. Thankfully, the nurses are there to think rationally at 5am.
In church today the sermon was about loving people as you want to be loved. At this point, I’d have to turn that on its head and say that my goal is to love as we are loved by all of you.
I changed the photos of T in the album – his cheeks are more kissable than ever.
Goodnight,
Annie
Grow cells, GROW!
Tuesday, September 7, 2004 4:03 PM CDT
Day 18
WBC 0.5
Labor Day weekend brought a steady hold on the cell count - .4, .5, .4, and today .5. Your positive thoughts and prayers are reaping rewards as Annie tells me Dr. K is happy with these counts and not worried about this temporary plateau. Indeed, she believes this shows that engraftment is on the way.
Annie and Mark’s quarterbacking is not without its own challenges – and so, while they manage doctor visits, occupational therapy, physical therapy, review blood tests, and medication changes, all one man down now that I am in Denver, I’ve volunteered to post today’s journal entry!
The level of alertness they have to maintain in the face of his medical, physical, and emotional needs is staggering. The teamwork is fabulous. Timothy has just enough Irish (fight) to pull us all through, though. That’s not to say that other aspects of his heritage are not serving him well. Annie spoke of his courage yesterday! I appreciate his temper, fight, and his resilience. By now you all know the power of his smile. The whole Unit cheers when he turns it on, which he does on a regular basis.
I’ve enjoyed some very special moments with all three of them. We grab quick lunches on one of the walkways connecting the buildings and pretend that we are on the Champs Elysees (that’s a stretch), but the scene is wonderful after all of the disinfectants, HEPA filters, gowns, masks, etc. within the Unit. Timothy and I have physical therapy together. He thinks my muscles have improved and I stand a fair chance of keeping up with him. And he shares his new entertainment system with me. We devise new ways to run the world. I try to convince him that my way is more interesting, but ultimately he prevails and we do it his way.
We miss you – Annie and Mark miss you – each of you. Your stopping by this site on a regular basis means the world to all of us. Please stay in touch. For now you are the link to the outside world and Annie, Mark, and Timothy are counting on you to be with them and I know you will be – each and every step!
Miracles are born of love.
Peace and Love,
Zoom
Saturday, September 4, 2004 6:34 PM CDT
Day 15
WBC 0.4
Tommy – WAY TO GO! We are praying really hard for you. For those of you who do not know, my uncle, Tom, is winning the fight against a mean case of brain cancer. He has just passed his 2-year milestone. From the moment we heard about Timothy being sick, we have focused on making sure that he fights with faith, resilience, and fortitude, underscored by Haley stubbornness, just like Tommy. Tommy – we need a picture of you for our wall! Speaking of which – we would love pictures of all of you for the hospital room and our apartment. The closer we feel to all of you, the stronger we are each day.
Well – 48 hours later and we have again doubled the cell count! In fact, yesterday his count was actually .5. The count will bounce around like this for a few days, but over the course of the next several weeks, the general trend should be one of growth. As a point of reference, a “normal” WBC would be between 4.0 and 10.0.
Our next milestone is for Timothy to be “engrafted”. Here’s the skinny on that:
Sue Wood came by for a social visit yesterday. Sue works with Dr. K and will be our primary nurse practitioner when we are outpatient. She is the one who gave Timothy a spinal tap IN HIS SLEEP. Oh – and did I mention that Sue is also a retired Army Colonel? I told her that I was trying to understand “engraftment” and here is how she explained it:
There are various types of white blood cells - 6 to be exact (Basophils, Eosinophils, Monocytes, Lymphocytes, Bands, and Neutrophils). The first four are basically like preschoolers and elementary school children – they make a positive contribution and are necessary, but we don’t send them to war. The Bands are like adolescents, they are ready and can go to war, but are young. The Neutrophils are like grown men and women – they lead us in war. In terms of how each kind of cell fights infection, she elaborated … the Neutrophils are the Marines – they are the first to the scene, like the Marines to the Normandy beaches. They make a quick hit and many die (life span for Neutrophils is about 8 hours) but they make way for the other armed forces, or kinds of white cells, to come in and do their work. Boy, I hope I got that right – if not, Sue will no doubt “give me 10”… and then, if we are lucky, she might even respond in the Guestbook in her own words – which are far superior in both accuracy and color!
To be “engrafted” means that the new blood factory is producing the right proportions of the various cells. Once Timothy’s WBC is at .5, the lab will start running another test, called the “differential”, or “diff”, which measures the absolute neutrophil count (ANC). The ANC is the number of cells that are mature enough to fight infections. The formula is:
WBC x 103 x (Neutrophils + Bands) = ANC
Once the ANC is 500 for three consecutive days, Timothy is considered “engrafted”!
10 days after engraftment, they will do the test to make sure that the cells are in fact the donor cells. One step at a time we will win this war!
Timothy of course could care less about formulas and counts – but he definitely gets the war part of this and he does not appreciate Sue’s thought that little kids don’t go to war – he is fighting like the best of them (like Tommy!). He is still pretty uncomfortable – we have added teething to the long list of reasons to be cranky. We are working with the docs to find the right elixir to help him get back to smiling. We’ve nearly got it. Of course – your warm thoughts and prayers are the main ingredient. We can’t thank you all enough for your support.
Love, love to everyone.
Grow DONOR cells, GROW!
Thursday, September 2, 2004 6:57 PM CDT
Day 13
WBC 0.2
Yesterday was an especially difficult day in the Unit, as one of the children passed away. We were on our way to church when we found out, which was perfect because we were able to immediately take all of it and offer it to God and to pray for Folden Lee and his warm and joyful family. While we do not know any of the families well on the Unit, there is a respectful camaraderie and through the room windows to the hallway, smiles of support shine from and on every family and we feel united with them in prayer, strength and thanksgiving. We hope you will add them to your prayer lists as well!
Timothy today…
After two consecutive days at 0.1, the little guy put in a hard night of cell-growing, and landed a 0.2 on last night’s white blood cell count! With no discernable rashes or fevers yet, the doctors continue to be cautiously optimistic. One day at a time…
I spent the night last night at the hospital with Timothy giving Ann much needed rest in a regular bed. These past 36 hours have been rough for Timothy. He just can’t seem to get comfortable. The nurses think that he might be getting into the bone ache part of this process. He receives a growth stimulator drug every day to encourage growth of the stem cells in his bone marrow. According to the big kids, who can express why they are so cranky, it hurts – and not just a little. Some of the parents who are giving white cells to their children also receive this drug and they too vouch for the fact that it causes excruciating pain in the back and legs.
We have a new and very special friend, Andy, who was here for his one-year check-up just a month ago. Jayne Cash, our nurse coordinator here at Duke, put us in touch with he and his mom and they have been wonderfully helpful to us, explaining the process and being an overflowing source of hope. Jo signed one of her emails to Ann “anticipate miracles”, and so we are. Andy, who just began the eighth grade this week, has explained that he basically felt like he had a severe flu. So, between that and the bone pain, Timothy must just feel crummy!
Good news is that he has Mom, Dad, and “Zoom” to keep him company, not to mention his wonderful nurses and doctors to look after him. Ann will be at the hospital again tonight with him and I hope for a call that the cells are up again tomorrow. We will keep you posted.
Lots of love.
Grow DONOR cells, GROW!
Tuesday, August 31, 2004 10:41 AM CDT
Day 11
WBC 0.1
At 2am, the fabulous Nurse Jenn King came in to take his daily blood labs. Just before 3am, she came back in to wake me and tell me that Timothy’s cell count was 0.1! At 5:30am, the excitement subsided and I went back to sleep. T, of course, slept through the whole thing because making cells is hard work.
What does this mean? As you know, Timothy’s WBC has been <0.1 every day since just after the chemo finished. That means that the lab reports an indistinguishable amount of white blood cells. This morning, however, they saw a very little bit of white cell activity. This, combined with the fact that he has been having some rashes on his hands and feet, MAY be a sign that the stem cells are starting to produce new WBCs. This would be the beginning of engraftment!
We don't want to get overly excited (even though Mark and I both lost sleep over it!), for it is early still, but the doctors will be watching the counts closely, and we are all hoping that the process is beginning. It is typical for the count to hover around 0.1 and even to go back to <0.1 for a few days.
When I was lying in bed last night I was smiling from ear-to-ear thinking of each new cell that they saw in the lab as a prayer from one of you. Thank you!
We’ll get out our Parent Handbook later today or tomorrow and give you more details on what exactly “engraftment” means. For now – just know that this is a good beginning.
Keep growing donor cells, KEEP GROWING!
Monday, August 30, 2004 3:01 PM CDT
Day 10.
Double digits! Yeah!
WBC = 0
Thank you so much for all of your kind words in the guestbook. We have this site linked to Mark's Blackberry so that we get messages as they come in and each one adds a huge smile to our day.
Timothy is well - laughing this morning between mouthcare and PT. Thank goodness for narcotics. We have this great little button that we can push whenever he gets uncomfortable to give him a little shot of pain medication. I just wish there were a way to hook it up to me sometimes. And, clearly I am not the first parent to wonder this since it is the one pump on his IV pole that is kept under lock and key.
No sign of white cells yet. In addition to the daily blood tests, which tell us whether the count is going up, we are keeping our eyes out for engraftment rashes or fevers, a sign that there is cell activity. None yet - and of course the diaper rash does not count. That's just extra credit.
Keep the notes coming - we really love them.
Grow cells, GROW!!
Saturday, August 28, 2004 1:48 PM CDT
Day 8!
WBC = 0 (white blood count this morning remains “<0.1”, or 0)
Good morning. Another weekend is here and we are all doing well. The picture of Timothy above is our new favorite. He is fighting this fight - as you can see! The T-Shirt is a gift from his little friend, Caterina, who is on the Unit with us. Cati is 15 months old and had her transplant exactly 2 weeks before Timothy. Just three days ago she was officially "engrafted"! What a good role model. The day we arrived on the Unit, Claudina, Cati's mom, came to find me. It turns out that she is good friends with Philae Knight, who was a classmate of mine at Kent. Philae saw the press on the insurance situation and called Claudina to let her know we were on our way. As it turns out - Claudina and her sister are also Hoyas! Mati is class of ‘94 and Claudina, class of ‘92. We are counting on Timothy and Cati to be class of 2025!
The WBC remains at 0, which is normal, since we are only at Day 8. Several of you have wondered what our days look like, so let me give you a little peek into our world on the Unit.
We wake up between 7-8 and begin the day with a quick prayer, a diaper change and mouth care. Timothy loves mouth care - which involves a green "lollipop" sponge and some medicine mouthwash that helps keep the sores to a minimum. We sing the lollipop song and brush away and we do this FOUR times a day at least! (One of the side effects of the chemo is thousands of sores from the top to the bottom of the GI track – yuck! Happily, in most cases this only lasts for a few weeks.)
Often, we have transfusions - either hemoglobin or platelets late-morning. We take naps, play with toys, sing songs, watch the Olympics, giggle at movies, read books, and take more naps. Growing cells is very tiring. We also take at least one walk a day down the hall. We all put our masks on to go out of our room and granny pushes the IV pole while Mark or I carry Timothy. You heard it right – Granny (aka “Zoom Zoom”) is now pushing drugs. We wave to other patients, flirt with nurses, and look at all of the decorations the families have put on their doors.
The nurses are in and out all day to check on Timothy (and his parents). He gets his vital signs taken regularly and takes all of his various medications as well.
And then there are the diaper changes - lots and lots of them. This would be the other end of the chemo rash… Not pretty. Of course, in addition to directing the growth of his new blood factory, Dr. K had an answer for the diaper rash as well. Maalox applied to the area – with a little blow of oxygen. I really do not know where Dr. K learns all of this or where she retains the data. A real-live MacGyver and definitely the person I want driving my Swift Boat.
Oh – and how did I forget? We have visits several times a week from physical, occupational, and speech therapists. They are very energetic and know how to keep things fun for T.
Once a day we also receive a visit from the Attending physician who is “on service” – this is when we ask all of our questions and get a report on Timothy’s condition and any changes to his medications.
Mark and I each go to mass every day – one in the morning and one at night. It is wonderfully peaceful and a great source of strength. It is especially uplifting to think of all of you praying each day with us. The best cards we get are the ones full of prayers and hope where people have visited a church, said a special prayer, or offered a mass. Thank you, thank you.
At the end of the day, T gets a sponge bath and we say our novenas and a rosary and hit the sack – or the plastic hospital bed. One of us stays the night with him at the hospital – a standard in the Unit. Since I was the one who stayed at the hospital last night I am home this morning and going to end this journal entry so I can go take a nap! There are nights when T sleeps well, and then… there are other nights… last night was an “other night”, to say the least.
So, we do keep very busy and very joyful. We’ve added some more pictures to the photo album. Hard to believe it has been over a week now!
Grow donor cells… GROW!!!
Wednesday, August 25, 2004 1:11 PM CDT
Day 5: "I am so excited for my new cells to grow it makes my hair stand on end."
T's WBC (white blood count) officially hit zero yesterday. Now the big wait... we will keep you posted. The new cells should start to grow gradually sometime in the next 37 days ... .1, .2, and so on.
Dr. K peeked her head in today. She was giving a tour to some federal agency representatives, but said she would come back for a visit this evening. Have we mentioned that she never wears anything but overalls? Too cool.
While Dr. K monitors Timothy's record daily and is consulted on all non-routine decisions, we don't see her daily. Unless the docs are needed on the Unit, they work in the outpatient clinic. There are six attending physicians in total (including Dr. K., who is the Director of the program) and they rotate in 2-week shifts assigned to the Unit. This way, there is a doctor on the floor at all times. The teamwork is astounding.
We celebrated my birthday yesterday - in fact we are celebrating all week because we want an excuse to eat cake. The gold medal moment of the day went to Timothy with the assist from St. Jude. During prayers, T turned on his giggler and just couldn't stop. The silver medal moment goes to the Dutch team for the van Heuven sisters' famous birthday chant, left in my voicemail complete with lyrics on email. And, a solid bronze performance goes to the British/American Sheehan team for the Birthday Bongo song, again left on voicemail. No need to miss being home - I saved both so that we can hear them over and over again.
We love hearing from everyone - it really keeps us going. Grow donor cells GROW!
Monday, August 23, 2004 10:08 AM CDT
Hello! Thank you all for the prayers and good thoughts on Friday. It was truly an incredible day - a second birthday of sorts. The transplant happened just before noon and lasted about 45 minutes. We have attached some of the pictures, but we have more so we will change them over the next day or two to give you the full story. These are the highlights. Most importantly, Father Steve came by at 11 and got to hold and bless the cells and give Timothy a special blessing on his "second birthday".
The team of doctors and nurses here continues to "wow" us. They anticipate and react to each situation with speed and accuracy. For the transplant, Timothy was given some meds to counter any reaction to the preservative or the cells. We learned on a tour of the lab with Dr. K that the cells are stored at -196 degrees F, delivered in a R2-D2-looking cooler to her lab, where they are washed, counted, and prepared in a sterile environment. The cells come from the cord blood of a newborn baby. The donor is anonymous to us, but what we do know is that this donor is a boy and that the match is a 5/6 match (as good as you get). Thanks to that family wherever you are!
Cindy, one of the 5 nurses on our rotation, administered the transplant. She ran the IV line and flushed the bag to get out every last drop. We will put up more pictures this week of her working. She liked meeting Father Steve - it turns out that she went to the Immaculate Conception School for a few years! Small world.
So, the cells ran for about 45 minutes and Timothy was awake for just about all of it. I am sure he sensed the excitement. Eventually he gave in to the Benadryl and took a nap. He really is a trooper.
The nurses also gave us a certificate that hangs on our hospital room door. We will post a picture of that soon, too.
Now, the great "count-up" begins. As Dr. K said when we arrived - this process will take 1 year of our life and the first 100 days post-transplant, minimum, will be here in Durham. We are on Day 3 of those 100 days. Timothy's white count should hit 0 sometime today or tomorrow, the desired effect of the chemotherapy conditioning. That makes room for the donor cells to grow. One in a million of those new cells is a stem cell and miraculously, those cells make their way within 2-3 minutes of the transplant to the fibers in his bone marrow. No one knows why the stems cells work like that, but as Dr. K said, "we just care that they do!" They tell us to think of it like planting a garden. Sometime between Day 10 and Day 42, we expect to see those cells start to bloom, to give off "daughter cells", which we will measure through the daily blood testing. In the mean time, the side effects of the chemo will start to take their toll as will the dearth of white cells while we are waiting for the new ones to grow. It is a painful and precarious several weeks ahead, but we know he can do it. So, the prayer for the next phase of this is:
1) Grow Donor Cells, GROW!
2) Minimize side effects of the chemo and any suffering for Timothy!
3) Beat Sandhoff's! Be the first survivor!
Wednesday, August 18, 2004 9:23 PM CDT
Granny is here with us and she realizes that we really do have an Olympic schedule. The treatment keeps us busy and Timothy gets a gold medal for smiling. We finished chemo today (yeah!) and we are now getting ready for the transplant Friday. Father Steve (from Immaculate Conception here in Durham) is going to come and celebrate with us here in the Unit. The transplant will only take about 30 minutes or so and the worst part is supposed to be the smell of the blood preservative. The blood is stored at -196 degrees F and the morning of the transplant, the lab here defrosts it, washes out the preservative and prepares it. Then, they will bring it up to our room and Timothy will get about 1,000,000,000 new blood cells. Then we pray - GROW DONOR CELLS GROW. We expect his blood counts to drop to 0 on or just after the day of transplant and then we start the waiting game to see when the new cells will grow - which happens anywhere from 10 to 42 days post-transplant. We miss you all.
Thursday, August 12, 2004 1:51 PM CDT
It should come as no surprise to anyone that we have decided on a sports theme to decorate Timothy's room. From Olympic Glory to baseball playoffs, it is going to be a great fall. We'd love to hang up decorations from your favorite teams (with the exception of all of you Red Sox fans). Today we are finally getting into the swing of things here in the "unit". There is even another Hoya family. Timothy is feeling fine - giggling and reading a book with his dad right now. He really turns on the charm for his nurse, Trish. She has been working here for 7 years and is fabulous.
We of course have to say thank you to so many people for helping us get here - from support in the Cigna situation to kind cards and letters. We love each and every one of you and wish we had time to tell you as much individually and in detail. Will you settle for "e-hugs" for now? HUG. HUG.
Thursday, August 12, 2004 1:42 PM CDT
Hello. Thanks for checking in on us. We want to stay in touch with people, but are so busy with Timothy that we thought this would be the best way to keep y'all (yes, we are in the South, now) up-to-date on how Timothy is feeling. Most importantly, we hope it will give you specifics on what to pray for each day.
Click here to go back to the main page.
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