Time got away yesterday and I didn’t get an update made.
Charlie had 7 hours of chemo yesterday, and handled it like the champion he is. While we can tell he isn’t feeling great- puffy, sleepy, not smiley, fussy – we are so thankful that the numbers (vitals and labs) still look perfect.
At this point, the hardest chemo drugs for Cycle 1 are behind us. The remaining chemo will be administered outpatient and should be pretty quick and “easy”.
Now we rest, recover, repair our ANC levels, and prepare for stem cell collection and the start of Cycle 2.
We’ve had a lot of conversations about what is to come, but for the first time in my entire life, I’m not able to think about what lies ahead.
Today, we focus on today.
We will be learning how to give him daily injections to help that ANC level recover. His stem cell collection is scheduled for June 2nd, assuming he recovers well between now and then.
He will have labs twice weekly, but because he has that central line to draw from, they won’t have to poke him. Thank goodness.
His immune system has been wiped out with the chemo, so we are going to be extra careful about germs.
Fevers are a HUGE deal to him since he has a central line – fevers could mean he has an infection, although we all know that babies spike fevers for a plethora of reasons and most of the time we never know why. But for Charlie with that central line, a fever is considered reason for at least a 48-hour hospital admission and could earn him a ride with the hospital transport team. We certainly don’t want that.
Today’s prayers:
- Stay Healthy
- Stable labs as he transitions off fluids and back on to full feeds again
- Quick ANC recovery
What a story He is writing through our sweet boy. 💙