Do you remember as a child, peering out the window of your parents car as you sped down the highway, pumping your arm up and down to get the truckers to honk? Brock found a new passion for that on our way to Childrens Healthcare of Atlanta. He convinced 4 in a row to honk for him. I love how easily amused that not-so-little monkey is (I mean, he is 411 now...) We stayed in a hotel last night, so I didnt have to fight so much traffic to make our 8:30 appointment. We arrived early and sat among several families, but the office was efficient; we didnt wait long. The registrar was very kind and friendly. The stack of papers that preceded us hadnt gone unnoticed. He remembered them. They drew labs and took Brocks vitals and measurements. We were placed in a room and Dr. Yang appeared shortly. In his hand were all those labs, with post-it notes hanging out along the sides. He had reviewed the data and already spoken with a transplant specialist. One of the first things hes noticed was that Brocks cyclo level had been low for a while. After seeing my chart (he requested I email it to him) and asking me many questions, Dr. Yang examined Brock. He said wed received excellent care in Chattanooga, that the doctors there had done exactly what would have been done in Atlanta. His initial impression was to weigh the pros and cons, but continuing cyclo might be a good option. He took us to the playroom and personally showed us the procedure area and the kitchen in the infusion area. Brock played video games while we waited on his counts and Dr. Yang spoke with the transplant specialist, to see if she was available to talk to me. When he returned, his opinion had changed. Considering the now large PNH clone size (it goes up when counts go down), he was leaning towards transplant. Apparently, repeating ATG isnt a viable option. Hed already started the transplant team on Brocks case. Im surprisingly in a good place with this. I guess Ive had time to prepare. Brock is also ok, after I reassured him that the process was NOT surgery, but almost like a blood transfusion. At this point we dont know if there is even an unrelated donor match, but Im awaiting a call from the transplant coordinator. Well meet with them in 2-4 weeks. If we go through with it, well be spending a lot of time at Egleston. Brocks counts today were up, even from Monday. WBC 3.1 HGB 9 (up from 8.4) Platelets 32 (up from 24) ANC 910 (up from 790) Oh, Dr. Yang even called me this afternoon to get more specifics on cyclo dosage changes. He seems very thorough and detail oriented. Its awesome!
Posted on: Thu, 24 Jul 2014 23:25:41 +0000