After months of debilitating treatment and painfully awaiting a bone marrow transplant that could save him from the ravages of leukemia, Nick Glasgow received a successful marrow transplant earlier this month.
Since the transplant, Nick has progressed along the recovery path that is typical with this type of procedure. Despite significant discomfort and medical complications, Nick’s white cells have begun to show an increase, leading the medical staff to believe he’s on the right track.
August has been a bittersweet month for Nick and his family. The process of preparing Nick for the transplant brought him unprecedented suffering. Since so many people around the world have followed his story and continually ask for updates and express their support, we thought we would share some of the travails of the past few weeks, as written by Nick’s Grandfather:
Friday, August 7
Nick has suffered terribly this week. When we visited him last Saturday (Aug 1st), he was doing well but that situation didn’t last long. He underwent chemotherapy over the weekend. He was to have days of “rest” before the transplant but they turned into days of agony and he has been in enormous discomfort and pain since then. It had taken that long for the full effects of radiation and chemotherapy to hit him. He was sorely afflicted with almost constant nausea. Moreover, the radiation had seriously damaged the interior lining of his mouth, throat, esophagus and stomach so that he cannot eat (they are feeding him intravenously) and the recovery from all this internal damage is very slow.
The radiation and chemotherapies basically destroyed Nick’s old bone marrow, all his blood cells, and his immune system so that he is now totally vulnerable to infections. As a result he is in more strict isolation. Anyone entering the room must put on a hospital gown and face mask, and sanitize their hands thoroughly.
We visited Nick this week and were present for the bone marrow transplant itself which was a very simple affair. They hung a bag of reddish liquid on his IV stand and began infusing its contents into his body catheter, just as they do with all the other medications and fluids he regularly receives, the difference being that this fluid contained the donor’s stem cells and T-cells needed for the rebirth of his bone marrow. Even though Nick was in so much discomfort, we were all buoyed up by this visible sign of renewed hope.
There are two serious complications that may confront Nick that are an inherent part of the bone marrow transplant treatment. I can only give you a layman’s simple version of them. The first one involves the possible return of his cancer cells. The doctors do not believe every last cancer cell has been destroyed. The new blood cells created by the transplant are supposed to seek out and destroy these, but there is a chance that Nick’s very aggressive cancer may mount a resurgence before the new transplant can take root and become strong enough to begin its work of blood regeneration which takes about two weeks. Thus the first two weeks of the transplant are a very critical time. We’re hoping the new cells will be ready in time to seek out and destroy any remaining cancer cells before they grow so strong that they overpower the new cells.
The other complication is the traditional Graft versus Host Disease problems that always surround any kind of body transplant. During the first few months it is possible that the new stem cells from the transplant could attack different organs. The doctors have a lot of tools with which to fight this phenomenon but it can cause a lot of problems and side effects along the way.
Carole is under tremendous strain as she spends almost every waking hour at Nick’s side assisting him in every way she can and also fitting in work in his hospital room, but also having anxiously to watch all the suffering he is going through. Nick hates for the night to come because he is lost without his mother; she’s the only thing that makes it bearable for him. Nick’s cousin, Jennifer, is by Nick and Carole’s side again at Stanford, helping in every way she can.
Tuesday, August 11
Over the past several days Nick has experienced some plusses and some minuses. We visited him, with Glenn, on Sunday afternoon (the 9th) and saw some positive changes since our previous visit. The doctor had changed Nick’s pain medication regime so that he is not overly sedated now. There was more life in his eyes, he was more alert, and able to engage in conversation, even demonstrating some humor at times, both with us and with attending medical staff. Unfortunately we could understand only about half of what he was saying. You see, the damage to his mouth and throat makes it difficult for him to speak clearly.
Late last week Nick developed water in his lungs and a touch of pneumonia again. This made lying down so uncomfortable for him that he has been sitting up in a reclining chair or his bed ever since. Needless to say he is not getting much sleep that way. Nick is unable to eat or drink anything because he cannot swallow due to the condition of his mouth and throat. He constantly thirsts for water and keeps telling everybody that when he’s able to swallow again, he’s going to have a “Water Party” and we’re all invited, where we’ll drink lots of water. For now, he must content himself with sucking on ice chips and spitting out the liquid. As a result of this condition, Nick must either spit out, or have sucked out, all mouth secretions and liquids.
Nick is still receiving daily administrations of chemotherapy in a different form than before as a measure to counter the possible resurgence of his cancer cells. This makes it more difficult for his internal organs to heal.
The doctor tells Nick that his recovery will be maddeningly slow the first two to two and a half weeks after the transplant. But that, when he does begin to get better, he will experience rapid improvement.
Tuesday, August 18
In the past week Nick has taken one step forward followed by two steps backward.
Last Tuesday night Nick called us (for the first time in many weeks) with the exciting news that he had been able to finally swallow some water. When we visited him the next day, the five of us (Nick, Carole, Jen, & we two) had a small preliminary water party in celebration.
Unfortunately, Nick’s improved condition did not last long. Ever since then Nick has been suffering the worst pain yet from the internal damage and is languishing in a most pitiable condition, to such a degree that the hospital had to station a nurse round the clock in his room to tend to his needs. When we visited him this past Sunday afternoon, it was really heart-wrenching to see him in such discomfort. He was hardly able to interact with us at all. The best he could manage was to hold onto our hands, especially seeming to appreciate the ministrations of his Grandma.
The staff all tell us that what he is going thru is par for the course and that, in their eyes, he is doing fine. It is really a horrible pain and suffering that the bone marrow transplant patients have to go through. Nick’s white cells have begun to show a significant increase the last few days, leading the doctor to think that his transplant has begun to do its job. They have doubled in the past two days.
Carole just called to report more good signs. Yesterday Nick asked that his Play Station game system be brought back so Glenn took that up last night for him. Then he watched two movies with his Mom. First time he has shown any interest in anything like this in some time. Then, today Nick went outside the room in his wheelchair, propelling himself all around the halls of the transplant unit. One time he stopped, got out and walked for a spell, before resuming the wheelchair ride.
All in all, things are starting to look up for Nick and he’s on his way back.
For the record, Nick has now been in the hospital for five months.
Tuesday, August 25
. . . There are no vaulting improvements in Nick’s condition. There is a series of baby steps toward recovery. Nick’s white cell count has reached the 1,800 level, about halfway to the lowest point in the normal range. These cells are needed to heal his internal damage. He is still not able to swallow easily or very much at all yet. So he is still being hydrated and nourished by IV infusions. Nick has lost a lot of weight especially in the lower part of his body.
Nick continues to be more active. Today he is doing some arts and crafts activity. He is still doing some walking and leaving his isolation room every day in a wheel chair, occasionally getting out of it for a walk in the unit halls. He has even been outside the building at least twice, the last time just yesterday to visit the garden and the day before that to experience the sun and the beautiful water fountain in front of the hospital. When he leaves his room Nick must wear a special face mask apparatus to give him maximum protection from germs, viruses and fungi.
After over five months of hospitalization, Nick is understandably disappointed and disheartened by the maddeningly slow pace of his recovery but the immediate family is very grateful that he is now on the path to recovery.
August 26, 2009, in the words of Nick’s mother Carole:
The big waiting period is now and onward. Graft Host Disease doesn’t happen immediately and that’s what we’ll be monitoring and trying to keep him safe from….and of course praying that the big C does not show its ugly face again. We still have quite a long road but so far, so good. It’s all so scary but I try not to go there! I choose to have faith that God is watching over Nick.
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