Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: August 25, 2001

Robert’s Update BMT + 37

Robert is feeling fine, and has no fever or other symptoms of illness. Unfortunately, his white blood counts have dropped precipitously, and the doctors now believe his bone marrow graft may be failing. The least likely possibility is that the graft is still viable, but has been suppressed by infection or drugs. In this case, the graft will come back. It is more likely that the graft has been eliminated by Robert’s own immune response or by an infection. If this is the case, there are two possible outcomes; either Robert’s own bone marrow will come back, or he will have no bone marrow. If Robert’s comes back, he will probably come home to recover for some time, and then we will try again with a different donor. If no marrow grows, we will probably try again to engraft with the first donor. In either case, a different regimen of drugs will be needed for the engraftment because it is too risky to repeat Bisulfan chemotherapy.

We will know more on Tuesday once some engraftment studies are completed, but it may be one or two weeks before we know for sure what the next steps are. Please keep us in your prayers.

Best regards, Mark