Day 644 – December 22, 2023

Harvey remains in the hospital this evening. It’s been a long day of fevers, chills, nausea, and uncomfortable attempts at napping for him since 2 am. And he is so uncomfortable. He woke up from a nap crying, missing his brother and sister tremendously – especially since their 8th birthdays are tomorrow. He’s ready to be out of the hospital. He’s ready to be home. 🙁 His fevers continue occurring every 4-6 hours, getting as high as 104.7º F. this afternoon. Fevers, while so unpleasant, help create an environment for his T cells to thrive, and that’s exactly what we want! His vitals remain stable and his medical team is confident that he’s experiencing side effects from the T cells he received (fairly common). No signs of bacterial, fungal, or viral infection – Very good news for us even though it’s tough seeing him so uncomfortable. He’ll remain in the hospital until his fevers break, assuming no other side effects occur. As I type this, he mentioned that it appears the room is moving, like he is “floating in outer space.” We’re checking with his doctor about neurological side effects right now, but it’s likely vertigo (yet another common side effect).

This morning, we received results from Harv’s bone marrow biopsy and ClonoSEQ test from November. Important note: These results are from bone marrow sampled before Harvey’s CAR T therapy on November 13th. Therefore, these results will not show how effective his T cells are or are not. That said, the results do show he is still MRD positive (+) meaning he has detectable cancer in his body. However, it is much less cancer detected than the previous October test. We now know he went into CAR T therapy with very little detectable cancer in his body, which is a very good place to be. Now, we sit and navigate his side effects, wanting so badly for the T cells to work and kill the remaining cancer within him. Upcoming ClonoSEQ test results will reveal the effectiveness of CAR T therapy for Harvey – we expect to receive them late in January or early February 2024.

Despite the challenging day, there were a few bright spots, particularly this morning when we played a few games of darts in bed and watched “How The Grinch Stole Christmas.” We continue seeking comfort and rest for our warrior tonight. Thank you for all the love you’ve sent our way! ❤️

A few moments of play today while Harv was feeling well enough.

Covered up with a high fever, but feeling cold.

Napping briefly between fevers.