Wednesday, January 27, 2016

Day +113

Raul has now gotten three doses of the Etoposide, and will have his fourth on Friday. I have not noticed any side effects from it yet other than that his BP increases a bit while it is running (we expected it to decrease). He has also actually been more happy most of the time since being on the steroids, though occasionally gets extra grumpy. The steroids have made him not sleep as well the past few days. Yesterday I met with genetics and we sent of the testing to see if his HLH is genetic. The results will take anywhere from a couple weeks to two months.

Raul has not needed platelets in a week now; he has not gone this long since early October! He has still been needing blood more frequently, though. And he has not needed GCSF in a month, as his counts have stayed in normal range. He is still needing dialysis four days a week, unfortunately. We had hoped to go down to three, as his BUN is better, but he has just been retaining too much fluid. His Bilirubin has stayed down as well, so his eyes are almost back to normal color (very little yellow left)!

We got the results of Raul's engraftment check from his bone marrow biopsy. That showed 26% engraftment, which was similar to the CD15 of 24% we got from his blood (his CD3 was 97%). The good news was that his skin biopsy showed 18% donor cells! Anything above 15% is considered good, and even below that they believe that patients will see benefits. I was sort of surprised that his number was so good since his other engraftment numbers had dropped!

Raul has really been enjoying getting out of the room, and out of the hospital, lately! We have gone to the Ronald McDonald House on several passes, and last weekend even went to a model train museum. Some of the displays were too high for Raul to see from his stroller, but he liked that one of the lower sets had horn and whistle buttons that he could push! We have also gone out of the room to walk around the hospital the past few nights, which he had refused to do for a long time. Raul has been cooperating nicely this week for school, and seems to even be enjoying it some. He definitely seems to be having more energy! 

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