A patient of mine — an eleven year-old boy — came to our attention a few months ago when, after feeling more tired than normal, he was noted to have a markedly-elevated white blood cell count by his pediatrician. Soon thereafter, we diagnosed him with acute lymphoblastic leukemia and started him on therapy. Four weeks later, though, his leukemia hadn’t gone away, meaning that the therapy failed to induce a remission (a very rare event in pediatrics), and at that point, we let the family know that the only therapy which had any chance of curing him was a bone marrow transplant. The search for a suitable donor turned out to be quite difficult, though; finding a match involves finding someone with the exact same six antigens generated from part of the sixth chromosome, and the young man has a rare enough combination of antigens that the best we were able to find was five out of the six (with a mismatch at another, more minor, antigen location as well). Given the dismal prognosis without transplant, though, we were happy to have found the one donor, and when we found out that my patient was finally in remission two weeks ago, we made the official request to the National Marrow Donor Program to have the donor come in for the medical part of the pretransplant workup.
Today, we learned that the donor “deferred,” meaning that he or she decided not to participate in the donation process. That means that at this point, we are left with no suitable match for my patient. And therein lies the very reason that the marrow donation process is done with complete blinding between the institution caring for the potential recipient and the NMDP — it would be too easy for me to go completely nuts on the poor potential donor, screaming and yelling about how he or she is dooming my patient to a near certain fate, without having any clue about the potential donor’s reasons for not wanting to go through with the process. As disappointed as I am right now, that’s the mindset that I’m trying to maintain; for all I know, the person carries a lethal virus or condition but was pressured into participating in a marrow donor drive at work, or has some other such reasonable cause for deferring.
The one thread of hope that remains is a person who, at least crudely, has the potential to be a match, but who isn’t going to be worked up more precisely for another two weeks. In the mean time, we have to continue my patient on maintenance chemo with the hope that he remains in his fragile remission, hold tight to the chance that the new person will be a suitable molecular match, and pray that if that’s the case, he or she will be willing to go through with the donation posthaste.