BMT +44 (Thursday, day 60)

Clinic was quick again. In fact, it was the smoothest clinic experience with Sinéad as well. That could be because her cough has been gone long enough now that she no longer needs quarantined and can be in the hallways and play area. No more of me standing in front of the door to keep her in the room. 

It was dressing change day. Naomi’s poor skin is looking so red and irritated under that bandage. They have the smallest cover possible over her site but I can see how painful those changes must be by the redness of her skin. She has always had such sensitive skin. 

Naomi’s platelets rose again, to 64; her hemoglobin rose on its own for the first time, too, to 8.6. But, her ANC dropped back down to 500 which has earned her a repeat test on Friday afternoon to see what the trend is. 

Naomi has now earned 8 hours per day off the IV fluids. This afternoon we went back to the hospital for her to spray paint Dr. Margolis’s hair before the Bucks playoff game. 

The name of our clinic and hospital is the MACC Fund Center/Day Hospital. The Midwest Athletes have done amazing things to support all these kids. Naomi watched the whole Bucks/Raptors game to see them show Dr. Margolis. Of course it wasn’t until the 4th quarter that he finally was on screen. 

On our way there, she ran, jumped, leaped and said she felt so free! Her attitude was significantly less cranky, too. It was nice to see. ​​

Earlier this week, Naomi’s chimerism tests results came back. Her levels are 99% Micayah’s in the red cell line and 100% Micayah’s in the CD33 line. We believe that the CD33 cell line was the cause of her failed first transplant. She varied having only 91-97% of Micayah’s CD33 cells, leaving a small percentage of her own cells to slowly eat away at the transplant. The Campath was supposed to wipe those out and apparently did. So we were very happy to see that level at 100%. 

We have tried to get back into a school routine around here. It has gone fairly well and allows us to be distracted from the loneliness. The days have felt so very long this week. We all really miss our family. We started a new 1000 piece puzzle of a black and white cat on a black and white polka dot blanket in a room with checkerboard walls and floors. The entire puzzle is black and white. It should keep us distracted for a while, too, if we can keep Sinéad calm enough to let us sit and work peacefully. Today we were able to do that with arts and crafts. She loves playdoh. 

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