8:45 pm: Harvey is asleep for the night (hopefully). After his “worst shower ever,” we made some popcorn and watched “The Polar Express.” Another one of his favorite movies! (If you’ve ever watched the movie, you might be a little creeped out by the animation. It has to do with the uncanny valley theory, where a high amount of realism is applied to animation but lacks complete realism.) The the things I notice and research as they come up… 🙂
Harvey was much more conversational tonight when he seemed to be feeling a bit better. He is so much fun to chat with, often bringing up an equal amount of new topics and questions as he does his favorite topics. He continues to have ups and downs throughout each day, but I’m so thankful for the sporadic moments we get the true Harvey back with his bright personality, playful humor, and inquisitiveness. Sleep tight, my fighter. Better days await us.
5:45 pm: “That was the worst shower ever!” exclaimed Harvey after his shower this evening. He absolutely hates having his medicine port-a-cath covered in plastic. This update is to let you know we had another short burst of energy again! We went for a long walk, played board games in the playroom, and just now had to worst shower ever. 😉
1:15 pm: I guess I spoke too soon about Harvey’s energy. Lindsey let me know that he’s having another tough day with no energy and lots of vomiting. He finally fell back asleep around 12:40 pm. I’ve learned that just because he has no energy doesn’t mean he’s able/ready to fall asleep. He’s more often than not restless. 🙁
12:00 pm: Harvey had a restful night of sleep, waking up around 7 am. He’s become acclimated to the beeps of machines, his care team coming and going, and having vitals taken while sleeping. His latest bloodwork showed that his platelets are again very low, and he received another round of platelets around 8:45 am today. He woke up hungry (as usual) and was just digging into his breakfast of chicken strips and a hotdog as I was leaving to work downstairs from the Ronald McDonald House. Lindsey gets to spend quality time with him while I’m working weekdays. Realistically, this means she’s very busy keeping up with his needs alone in the room. (I’m about to head back up and help however needed.)
Harv has slowly started to regain a some of his energy as of last night. This will be short-lived, however, as his next dose of chemotherapy is scheduled for Friday, April 1st. Getting him out of bed has become more of a struggle, even using his most preferred activities as a motivator. I’ve likely already overstated this: I can not wait for him to be done with steroids this week. I can’t wait for his sweet, caring, polite temperament to return. Of course, it won’t happen instantly. It can take weeks for the effects of steroids to subside.
It has been an uneventful Wednesday so far. And uneventful is equivalent to “good.” So we’ll take it!