Monday, December 14, 2015...25th day in the hospital
BJ's lab numbers continue to improve. His white blood cell count this morning was 0.3. The medical team told him again today that he has really impressed them with his progress. With a white count of 0.3, the differential is not analyzed, which means there is no blast percentage on the lab results. All expectations at this point is that the white count in his peripheral blood will continue to decline to zero. As his white count declines, we are hopeful that the leukemia in his bone marrow is also declining, as he will need to have a level of less than 0.1 percent leukemia cells in his marrow prior to a transplant. He is definitely improving, but still has a long fight ahead. One thing I know, this Navy SEAL is born to fight, and he will continue to stand up to the enemy. Transplant is not an easy process on the body. He will need to have very small to no amounts of leukemia to be able to have a successful bone marrow transplant.
BJ received his last 2-hour infusion of Clofarabine this afternoon. The Mitoxantrone infusion has finished up as well. He will also get one more dose of Mitoxantrone tomorrow evening. He is still struggling with extreme bouts of nausea, day and night. The neuropathy in his feet are still terribly painful. The medication to treat the nerve pain takes a few days to build up in his system before it starts to relieve any pain. The dose has been increased, as his kidney function resumed to normal, so hopefully he will have some relief by tomorrow. BJ is also still on anti-fungal medication to continue to treat the pneumonia caused by aspergillus (common mold that is in the air). He is on a medicine to lower his blood pressure, a calcium supplement to increase his calcium level (brought down by large amounts of IV fluids), a broad spectrum IV antibiotic, and scheduled doses of Zofran, Ativan, and a combination of Benedryl/Phenergan, all for nausea. While he continues to need help to stand, he is stronger than he was a week ago. His abdomen is not back to normal, but the swelling has gone down considerably. His liver and spleen are still enlarged, but there is improvement there as well.
A very sweet lady gave us a real Christmas tree for our house, and a dear friend got it inside and helped Carly decorate it. I've seen pictures, and it is absolutely beautiful. Carly said we will have to get a real tree every Christmas from now on. I had hoped that BJ would be well enough to go home for Christmas, but was told today that would most likely not happen. So, Carly has decorated his hospital room with Christmas lights, stockings, and painted the windows for Christmas.
Please keep us in your prayers, but also the other kids and families up here on the 11th floor of LCH.
I was born for the storm and a calm does not suit me.
The only easy day was yesterday.