Willem is ready for his bone marrow transplant (BMT) but transplant doctors want to check Liliana's and Willem's blood for the MUNC gene mutation before proceeding. The MUNC gene mutation is where HLH has affected the GI system -- like Willem's. There are five cases where HLH has affected the GI system and they're all in Pakistan. The genetic test will be done in Cincinnati -- which is good because they still have Lili's and Willem's blood on file. Time frame? Not sure yet but we've just now been informed that the gene test is priority in Cincinnati. When (if) the results come back that Liliana does not have the MUNC mutation, Willem will begin his BMT.
We got a brief lesson in BMTs: Day zero is the transplant day, so days before are "day minus 7" and the days after day 0 are "day plus x." (where x = is the variable for the unknown number of days to engraftment). The hardest days for Willem will be days minus 7 to whenever engraftment (incorporation of grafted tissue into the body of the host) takes place (somewhere between 0 and 30 is a number I got of the internet). "Toughest days for Willem will be day -7 to day +16 (ish)" -- Dr. Foley.
There is a possibility that we may get to take Willem home - even though he's on TPN and lipids - before transplant. More home care.
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