Meeting with the BMT Doctor

A doctor from the Bone Marrow Transplant team came to meet with us today. It seems they've identified 16 people on the bone marrow registry with characteristics that may indicate a match. There's a reasonable chance that one of them will be a good enough match to go ahead with a transplant. Mina Brigitta will be eligible for an emergency activation, so they would hope to be able to mobilize the donor within six weeks.

The problem with an unrelated donor is a higher risk of "graft vs. host disease (GVHD)", where the new immune system attacks the host's body. This can either be temporary or chronic, and is fatal in 10-20% of cases. About 50% of patients with unrelated donors suffer some form of GVHD, so this was quite a worry for Keri and me. Also, there are lots of other potential complications from a BMT. However, the doctor today told us that young children, especially under two, tend to suffer many fewer complications from GVHD. Also, some GVHD is desirable because the grafted cells also kill leukemia cells. So there are some advantages to having an unrelated donor, particularly for very malignant forms of cancer like AML.

She also told us that "conditioning" regimens involving total body irradiation, which we were very concerned about, were not necessarily better than other regimens involving chemicals, particularly for very young children. Radiation tends to have side effects like stunted growth, delayed mental development, and sterility. These may be acceptable for adults but not really for our girl. So it sounds like they won't be firmly recommending radiation, but will present some alternatives. These will have their own side effects, of course, and we'll have to assess those very carefully.

Overall, the doctor said that assuming that the current round of chemo is successful in re-inducing remission, and assuming a favorable donor is found, Mina Brigitta's odds of long-term survival are around 40%. We had estimated 30% just from a brief review of the literature, so this is an improvement. I think Keri and I both felt better after the meeting.

Mina Brigitta was also feeling better later in the day. She had some more Tylenol around 5 pm, and was alert and playing with nurse Amber during the evening. She ate some more Balance Bar and Cheerios, but they're probably going to go ahead with the feeding tube tomorrow. The fevers are just too much of a setback to her appetite, and she needs the nutrition. The good news is that younger kids don't seem to mind them too much, and they won't interfere with her continuing to eat.