Day 643 – December 21, 2023
EVENING UPDATE – 9:30 PM ET:
We’re officially in fever management mode. While playing minecraft online with his friends and sister tonight, Harvey spiked a high temperature of 104.5º F. and again became lethargic. We’ll keep close watch on him tonight. It was scary to see how fast he deteriorated and how high his temperature rose today (twice!). We hate the side effects, but love that it likely means the T cells are activated in his body and are beginning to fight the cancer remaining in our boy. His medical team drew more blood labs and are culturing his blood to make sure nothing else is occurring (such as a viral/bacterial infection). We’ll keep the updates coming…
Back in Minnesota, our twins had their Christmas school concert this afternoon. Harvey was also supposed to perform in the concert. His teachers made sure that his substitute, a monkey named Oreo (name chosen by Harvey), rocked out with an electric guitar on stage. Thanks to the amazing staff at Spero Academy and to the Monkey In My Chair program, which provided the stuffed monkey to take Harvey’s place when he’s away for cancer treatments.
Thanks for checking in on our warrior. We hope to get him (and ourselves) a full night of sleep and keep his next round of fevers low grade. Goodnight!
MID-DAY UPDATE – 12:30 PM ET:
Harvey is febrile again at 102º F and lethargic. He will remain hospitalized tonight. When he’s awake, he feels well and is happy, though! (As you see in the picture.) 🙂
MORNING UPDATE – 9:30 AM ET
Last evening at 5:30 pm, we noticed Harvey felt warm. A quick check with the thermometer revealed a fever over 101ºF. We loaded him up in the stroller and made the short 1 mile walk to the emergency room at the Children’s Hospital of Philadelphia (his 10th ER visit since the March 2022 diagnosis). After getting labs drawn, receiving an antibiotic, and hours of waiting, he was admitted to the hospital early this morning at 12:20 am. He’s currently awake, feeling well, and playing Xbox in his hospital room to pass the time. His immune system remains nearly non-existent (his ANC is now 230, down from 250 yesterday – see chart below). We’re not certain how long he’ll need to be hospitalized, but we may be witnessing the beginning of a side effect known as cytokine release syndrome caused by Harvey’s T cells. Fever is typically the first sign of it. Given that, we’re in no hurry to leave. His medical team will likely want to keep a close eye on his vitals, blood labs, and neurological state.
The good news is he’s doing well this morning with no fever. If he remains fever-free and continues trending favorably, there’s at least a chance he could be discharged later tonight or tomorrow.
Happy first day of winter! More updates to come.
I’m am glad he is feeling better this morning and right where he needs to be so they can monitor him closely. Continued prayers!
Merry Christmas Harvey from Gabriel and his mom KEEP the fight going sending prayers.