9/19/24

Today was the first really bad day so far.  Atticus would probably argue they’ve all been bad. This whole process has been really hard on his body and he has felt pretty awful through from day one of Total Body Radiation. But today was “nader”. That’s the term used when he gets to the bottom of the bell curve they expect from the effects of all the chemo and radiation he’s had, but before the new HCT have had a chance to become his new immune system.  The bottom of the dip. His neutrophil count was undetectable (that’s a good thing). Now we watch for it go start going up in the next 3-5 days.  However… it’s also when he’s at the highest risk and feeling the worst.  

His mouth and throat feel like fire.  He can’t eat or drink. Lots and lots of interventions are being tried… but it’s rough. He’s lost about 15 lbs of his already pretty small body this week.  

But the really scary part is that when I walked in his room this morning, I could tell something had changed. He was glassy eyed, flushed, huddled in a ball. He just silently reached out his hand for me.  I went over and felt his head and could tell he had spiked a fever.  I called the nurse and immediately everyone went into action. Blood cultures were drawn. IV antibiotics started. Increased pain meds given. Lots of lab work.  

Eventually he was able to nap more comfortably and he seemed better. He was able to drink a couple of yogurt drinks.  He still has a fever. They say that’s pretty normal on days 7-9.  But everyone is on high alert now.  

I left to go to the store to buy more yogurt drinks (they don’t have them at the hospital and he’s so tired of the ice cream protein drinks they make him he just can’t drink another one). I’ll be back first think in the morning.  I’ll keep everyone posted.