Cheeky is hanging in there for the first half of Delayed Intensification 1 (DI1), with a bit of a change in side effects this week. Starting around Friday or Saturday, he changed from The Hulk into a sad little snuggle bug. Every now and then he has a burst of rage, but most of his day is spent asleep or snuggling. He doesn’t want to stand or walk, and isn’t interested in his toys. His belly is protruding and he is pretty backed up. He is complaining of pain (“Finger hurt,” “leg hurt”). He is still eating, mostly toast with butter and Easy Mac, but is nauseous and often spits his food out or gags. And the kicker is: these are all “normal” effects that we just have to help him through. He is being treated for all of these symptoms, yet it’s more alleviating them than curing them. Fortunately, his counts are still “good” (remember “good” = not low enough for transfusion) so we are grateful. My description isn’t doing justice; he feels like garbage and is miserable. Please pray for relief.
Deanie is such a loving big sister, trying to distract him or engage him. Nonetheless, she tends to upswing when he isn’t feeling well, such as “baby talk” and crying because she wants to be held, too. We have been wearing Naaman in the carrier (Kinderpack) again and she wants in on the coziness! She has caught on that if she wants something, she can get him to request it. I’m not even mad; I’m impressed. For example, Nadine leads, “Cheeky, don’t you want to watch How to Train Your Dragon?” Cheeky buys in, “Mama dragons on tv?” Everyone wins.
Thursday Naaman goes back in for a blood draw to check his counts. In the meantime, we keep him healthy and comfortable. He won’t be venturing out of the house much, as there seems to be some flu going around.
Next Thursday, 2/21, would be Day 29 of DI1, when the second part (DI2) begins. DI2 is count-dependent. His platelets and ANC must be high enough or we wait a week and try again. It’s not unusual to be delayed. That Day 29 means another lumbar puncture in the OR, too.
Long-term, DI goes 64 days (ish) and is followed by another Interim Maintenance for a few weeks, and then rounds and rounds of Maintenance. Don’t let that moniker fool you: Maintenance still means lots of meds and clinic visits. Disclaimer: this is from my memory and I’m sure I’ve got some numbers off in my sleepiness.
Stay warm! Looks like CT has another snow day tomorrow, more like Ice Day.