8:00 pm: Harvey had a low-energy day. We attempted to go for a walk a few times, but his knees are starting to hurt and we’re having to carry him for most of the way. This pain is to be expected with the chemotherapy drugs he’s receiving. He even turned down visiting the playroom (which he loves!). Nurse practitioner Julie stopped by today to talk through progress and side effects of Harvey’s treatments. He’s progressing nicely through chemotherapy. From our perspective, we see a boy who has lost the bounce in his step and the twinkle in his eye. But through the lens of professionals who work with sick pediatric patients daily, he’s doing well. High heart rate, elevated blood pressure, joint pain, lack of energy, wild appetite, peculiar food cravings, sensitivity to smells, and constipation have been a few of the Harvey’s most predominant side effects. We also learned that his high bilirubin level is likely due to the pegaspargase that was administered on Day 4 – March, 22. It’s nice to have reassurance that everything is going well. It still doesn’t it make it easier watching him deal with the weight of it all.
Harvey did have enough energy to sit up and play with some of his new toys this afternoon. The food of preference today was string cheese. (Good riddance, hotdogs!) We received some of the beginning education we’ll need to be able to eventually discharge from the hospital and go back to the place where we reside. (We are very careful not to say “home” out loud here.) Our new reality will be protecting Harvey. His immune system will be non-existent for long periods of time. Lindsey and I have started re-thinking our house layout to better accommodate his needs when we do go back to… our single family residence.
He’s fed, cleaned up, and in bed with fresh pajamas on. One of Harvey’s favorite evening routines is reading updates from his classroom and lesson plans from Ms. Rhonda. He loves it! (Thank you so much, Ms. Rhonda!) He’s now fading fast & ready to sleep. Goodnight!
1:45 pm: I’ve started utilizing the Ronald McDonald house in the hospital as a space to work remotely during the day. Directly above my laptop on the wall is a matrix of colorful decorations, a few lights, and a single sign: “Love Thy Neighbor.” My mind wanders back to the conversations we’ve had with the caretakers staying at our home, and their stories of neighbors greeting them with care packages and offers to help. Thank you so much to our wonderful neighbors! Even though Lindsey & I have been mostly here at the hospital, we’re hearing from our kids and family at home of the love you’ve shown us – and we are so grateful! Thank you.❤️
12:00 pm: Harvey had a partial night of sleep, waking up at 3:30 am. We believe the steroids he’s receiving have been the cause of his elevated blood pressure. He is now taking blood pressure medications which are starting to work, but are also causing some side effects, such as a high heart rate (tachycardia). Thankfully, this is the last week of steroids. Unfortunately, it’s going to be a long week for him. He is becoming increasingly hungry and agitated. His overnight labs continue to trend favorably, although his bilirubin level is running high. His liver is likely working overtime to filter out everything that’s in his system. All this in mind, it’s keeping us on our toes as parents and is another thing we worry about. More updates to come as we chat with his care team today.