You would never know from looking at Johnny that he wasn’t in remission — if he doesn’t have to be in his room for meds, we are roaming the halls. This morning his platelets were N I N E, labs are usually drawn about 4am and results are within an hour. The ‘platelet fairies’ immediately gave Johnny a transfusion around 5 or 6 am, so when we finally woke up, it was like it never happened. Doing transfusions in what we call, ‘the middle of the night’ like this is perfect timing. Lately the transfusions have been cramping our style because we usually have to wait for premeds, then vitals are checked every 15 min. and then every hour — which makes it hard for us to be mobile.
We all went up to PT with Johnny and had a pretty good work out. Not like a normal treadmill, weight kind of work out, but jumping on giant pillow things and climbing rock walls kind of work out. It was fun for all of us. We roamed the halls a bit more and made it back to the room for evening meds. Big day — and Johnny is wiped out.
No big changes in treatment yet, still waiting for the BMA on Monday but it sounds like the doctor’s aren’t expecting Johnny to be in remission. His biopsy results show 30-40% blasts, aspirate was 15% — which makes it doubtful he would be less than 5% by Monday. They are working on other protocols and have a few in mind — I think whatever they choose, treatment will only be another month or so, then go straight to transplant. Of course we can only talk hypotheticals – you know, ‘if it’s a Monday, and a full moon and all the planets are perfectly aligned…’ type of scenario. But I still have to ask…