[evansmom]

Hi Norma,

Sorry to read this. To my knowledge, PNH is a result of red cell wall defect which is acquired but not immune mediated. Therefore lowering the immune response with ATG or other immunosuppressants will not work.

You may recall Evan's donor was 9/10 CMV+and he did very well. The doctor had Evan on an IV antiviral starting the day of transplant and kept him on that, switching to oral, for several months post BMT. Also, Evan received weekly IVIG for about a months post BMT, then monthly IVIG until 8 months post. So there are measures they can take, don't spend time worrying about the CMV+. What's most important is where the mismatch is. If it's on A, B, or C, this can have potentially serious implications (GVH or graft failure) but if it's on DRB1 or DQB1 (Evan's was on the allele of DQB1), there is less worry for complications.

While it is a serious decision, I would very much consider a BMT. Yashar has only had one round or ATG, and hopefully has had less than 20 RBC transfusions and few platelet transfusions. He is young and otherwise healthy with this stupid AA hanging over his head and now the PNH. This could be his cure, once and for all. Plus, you have the added benefit of Yashar being old enough to have a say in the decision making, which I would think would help.

Best wishes to Yashar always.