Monday, September 7, 2015

What is it they say? The best-laid plans...often go awry


BJ would've still been in the hospital if things had worked out as planned. Thursday we went to the clinic to get his blood drawn for labs and then over to the hospital for a spinal tap with intrathecal Ara-C and a bone marrow aspiration. As usual, BJ fights the sedative and the sedative always wins. After he woke up in the recovery room, he was transferred upstairs to the care of the LCH 11th floor team that we love so much. We were met with a lot of "You guys are back already?", and several "Oh my gosh, he looks better than he did the last time I saw him!", and subsequent discussions of how bad of a day that was. BJ was uncharacteristically in a REALLY bad mood when he fully woke up. He was starving, because it was already after 12:30, and he hadn't been able to eat anything since the night before. He wanted a burger from Wendy's and some sushi rolls. So I went to get food. He devoured the burger and we saved the sushi for dinner. He went down for a CT scan that night, and was supposed to start high dose Ara-C and Fludarabine Friday morning.

Instead, he was discharged Friday afternoon, and we went home.

The fungal infection has really complicated things. The CT scan showed 4 nodules of infection in his lungs that look larger than they were on the last CT. His level of the anti-fungal medication was increased, and his doctor wants to wait a week and repeat the scan. His white blood cells have finally came back in, so his body is working to fight the infection along with the medication, but it takes a long time for an infection like this to resolve. Because his own white blood cells are so important in fighting this infection, his doctor didn't want to start him on the 5 days of chemo, which will drop his immune system again. They can't wait too long to treat the leukemia either. One thing that he doesn't have in excess is waiting time. His MRD dropped from 18.9% last month, to now 1% after the 2 weeks of high-dose Ara-C. That was exciting news! It has to be less than 0.1% to go to transplant, and will take another cycle to try to kill more leukemia cells. While we're waiting for his lungs to heal, and infection to clear up, we're also not killing the leukemia cells.

Praying for a miraculous recovery...

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