What a month. February began with Samson at Doernbecher Children’s Hospital, much improved after his dramatic entry by ambulance in January. I had hopes of returning home with my son, with hard work ahead of us, but with healing in our future. Another bout of pneumonia, kicked in the butt. I could just imagine how good my bed would feel, how warm my children would be, how nice a glass of wine would taste after too many nights spent in the hospital. After all, we had been through this before, and again before that. Hospitalizations for Samson’s breathing problems were not fun, but they also weren’t a surprise anymore.
But, on February 4, we learned that Samson’s bone marrow biopsy showed that he had myelodysplastic syndrome (MDS), a form of bone marrow failure that often develops into difficult-to-treat leukemia. We learned more in a meeting with Samson’s doctors on February 5. Samson’s bone marrow was abnormal. There were not of enough of the different kinds of cells, including the ones that fight infection. And what he did have probably wasn’t working right. Of great concern was one aspect of Samson’s MDS, a chromosomal abnormality in his bone marrow cells -- a deletion of one of his 7 chromosomes. This abnormality, monosomy 7, which had developed in many of his bone marrow cells (16 of the 20 tested) is associated with rapid development of leukemia and a poorer prognosis than other forms of MDS. How long, we asked, does it take to develop leukemia? The doctors did not know, but hazarded a guess -- perhaps a year? But he is 10 months old, and has been sick all of his life . . . . Yes, that’s right. And so, the clock was ticking.
At that February 5 meeting, it was explained to us (Aaron holding weak but wiggly Samson, me asking questions and taking notes) that the treatment for Samson’s MDS would be a bone marrow transplant, but that a first step was healing his sick lungs so that he could survive this cure for his underlying disease. I was handed a card with the name of an oncologist at Doernbecher, on the 10th floor. We had been scheduled for an appointment on February 16. We left the meeting, and Aaron went home to the other kids. I stayed with Samson and prepared to go home. During an hour long training on how to administer Samson’s IV antibiotics 3 times a day, I stopped to cry a few times and insisted to the training nurse that I could not learn this process, that I would surely kill him. No you won’t she cheerily promised, and kept training. She was right of course, it’s really not even hard.
It was a struggle to move things along more quickly -- there was no way we were waiting until the 16th to have a first meeting with an oncologist. I had to use a combination of insisting and pleading to get appointments set up, but we did manage in these past weeks to get a second opinion on the diagnosis (from Dr. Akiko Shimamura at Seattle Children’s Hospital), to see the oncologist at Doernbecher (Dr. Linda Stork), to see our pulmonologist for lung updates (Dr. Mike Powers), to meet with the bone marrow transplant team at Doernbecher (led by Dr. Eneida Nemecek) and to get the twins tested as potential bone marrow donors. I also had telephone conversations with an immunologist in Seattle and with the head of the pediatric non-malignancy bone marrow transplant team at Seattle Children’s Hospital.
Dr. Shimamura in Seattle is a bone marrow failure specialist. We felt that she very thoughtfully considered Samson’s case, and she got back to us several days after our meeting, having reviewed his extensive records and examined his lab work. Her conclusion was the same reached by our doctors in Portland -- that Samson needs a bone marrow transplant as soon as possible, before his condition progresses into leukemia. Moreover, setting aside the leukemia issue, the MDS itself is life-threatening -- his bone marrow, the heart of his immune system, is just not working, and he is suffering from that.
Thankfully, according to Dr. Powers, Samson’s lungs are sounding better. He continues on a regimen of multiple inhaled medications and two antibiotics. Before a transplant is done, Samson will have to undergo another bronchoscopy where the doctor will look at his lungs and check for infection, and likely he will have another CT scan of his lungs, as x-rays do not give us an adequate picture of the lungs’ status.
Amidst all of the medical details, in the middle of our Seattle appointment, I got a call from the bone marrow transplant nurse at Doernbecher telling me that the twins’ test results were in -- Harriet is a match for Samson and can be his bone marrow donor. Since there is only a 25% chance that a full biological sibling will be a match, and a far smaller chance any other family member would be, it was more likely than not we would be searching for a donor for Samson. To avoid that search, and the complications that come along with a transplant of unrelated donor marrow, is a blessing. I am sick at the thought of putting Harriet through anything painful, but I hardly let myself think about it. Why? I am raising my children to be strong, to do the right thing, to take care of others who are weaker or more vulnerable than ourselves. This is what Harriet will do. And I will help her.
The question weighing heavily on my mind tonight is where we will do this bone marrow transplant. The process is a long and difficult one under any circumstances, and I am just starting to get acquainted with those details. From what I understand now, Samson (and I) will need to enter the hospital a few weeks before the transplant for his preparatory tests, and for chemotherapy and radiation to suppress his own bad bone marrow. Once Harriet’s cells are transfused into his body, they may take weeks to start to function in the bone marrow and make him healthy again. In the meantime, he will be extremely vulnerable to infections that can be life threatening. Because of this risk and the need for continuity in care after the transplant, any transplant patient must stay at or within short reach of his transplant center for 100 days after transplant. So, if we go to Seattle (or elsewhere) for the procedure, we are going to Seattle for four months, minimum. We must sort out, and soon, whether a destination bone marrow transplant is better for Samson than a transplant in Portland at Doernbecher where he has been treated for many months. Tonight, I am leaning toward staying in Portland. I want our family to be all together. I want Samson to hear the voices and see the faces of his siblings as much as possible and I want them to see him. And I am afraid I need to have my children near me to not only survive this but to be in top form as Samson’s advocate. They remind me what we are shooting for here in Samson’s future -- overflowing good health, energy, love and laughter.
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