Last night, Michael and I went to a great party in San Francisco hosted by Powerset. We had a blast! I can't believe I knew people at the party. I've been cooped up too long. We are wishing the best to Powerset.
David is doing fine. I was just recalling that he had stage III acute severe grade I or II skin GVH. That's a mouthful! Here is a website that describes the clinical staging and grading of GVHD.
A family from Australia contacted me weeks ago. Their baby son has a very rare WAS mutation, without any symptoms except low platelets. The platelets were down in the 10k and he was receiving frequent transfusions. The family went through some of the same type of decision making we did. The baby had a bone marrow aspirate that showed the bone marrow did in fact produce a normal number of platelets, they were just being destroyed by the spleen due to the cells missing some of the WAS protein. They made the decision to do a splenectomy since the baby did not show immune dysfunctions, and since the bone marrow showed it produced adequate number of platelets. The operation was successful and the family is relieved his platelets are up to 270K! He is on Penicillin twice/day for the rest of his life, but does not need IVIG. It's so good to hear the baby and family are doing so well. What a relief it must be! Many of us WAS parents live by the seat of our pants. It takes a lot of pressure off to know your child is not going to bleed to death.
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