We met with the BMT team at Stanford. They told us things about the BMT process that we already learned from Varun's, Ian's, and Rand's transplant journals. Since we have done our research, most of the information was not new. They told us about the Ronald McDonald House where patients stay after the transplant. They gave me a tour of the BMT ward - nothing too exciting, nothing alarming.
The team is starting a bone marrow search for an unrelated donor match. If they find a match, we are not commited to follow through. With WAS, there is a 70% survival (30% mortality) with unrelated bone marrow transplants. A lot of the risk comes from infections during the days after transplant, while the child is home. The immune system does not fully recover until about 12 months after transplant, making the child totally susceptible to sepsis (blood infection) up until 1 year after transplant.
The team was nice and the doctors were professional. They are willing to run a T-Cell Proliferation tests which will give us more specific clues to David's immune system.
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Hi Aimee,
I have a 7 year old son with WAS, the milder form such as your little one has. We have not transplanted him. It would be nice to get in touch with you. My e mail is sumathidoc@aol.com.
We also go through some of the decisions that you have ahead of you and I wish you all the best in the decsion making process. it is not an easy one.
Sumathi
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