Last night was tough for Alice. She didn't sleep well due to vomiting, and she was showing rashes on her arms, cheeks and bottom. We had to change her diaper a dozen times because of the severe diarrhea. She is so uncomfortable at times that I wonder how in the world she hasn't broken down mentally. I do my best to keep her comfortable, sometimes I think I fail. This morning's news wasn't as good as we had hoped. Her white cells jumped to 1400, but her ANC dropped back to 0.
The doctors are becoming more concerned and have increased her steroid dose in hopes to suppress the lingering anti-bodies until the new marrow takes over. If this does not work within the next few days, the doctors would like to reintroduce a drug called Rutuximab. Alice has had experience with this drug before, but she did not have any success with it. Moreover, Lisy and I have reservations from using it again. The doctors are saying that this time would be different due to her having different marrow. We are still apprehensive of its use on her. I'm not sure that we have much choice.
Good news--the past couple days Alice has done well on room air, while awake. She requires oxygen (nasal cannula) still at night and periodically throughout the day.
Alice played for a good portion of the day. She bowled, and had a good time with some building blocks. She also got a package of Backyardigans, which she loves to play with. She keeps them in her bed and will not let me put them away. She requests more often now that I sit beside her in bed to play instead of sitting in the rocking chair beside her. When she beckons me with her little hand and then pats the vacant spot beside her, I can't deny the request.
Tomorrow will be a better day. Tyler