Day 648 – December 26, 2023

We’re so blessed to share that Harvey’s side effects from CAR T therapy continue to resolve. His voice has returned (music to our ears!) and most of the harsh neurological symptoms have tapered off or disappeared completely. What a relief! He remains a bit unsteady on his feet, but we’re hoping that improves over the coming days. He’s feeling well, his appetite is slowly returning, and he continues trending favorably. This morning’s blood draw reveled he is even more immunocompromised (as expected after receiving T cells). His ANC is now down to 150. We continue masking up, hand washing, and staying quarantined in our hospital room – doing everything possible to keep Harv healthy until his immune system returns. It may take weeks for that to happen. Prophylactically, he’s now on anti-fungal (voriconazole) and antibiotic (levofloxacin) meds. He’s improving each day. We’re passing the time with board games, video games, movies, and frequent naps. He’s still very tired.

We had an unexpected surprise visit this morning from Dr. Stephan Grupp, the doctor who performed the first ever CAR T therapy on leukemia patient Emily Whitehead. (The first ever in the world, not just the first here at the hospital!) He casually walked into our room, pulled up a chair bedside, sat down, and proceeded to talk about all things Harvey. Wow! What an honor it was to meet and thank him personally, especially knowing all that he and team have done for Harvey (and many other young cancer warriors). He’s helped define and mature CAR T therapy, bringing new life and hope to pediatric cancer treatment.

What a blessing it was to not need a blog update yesterday! We had a wonderfully quiet Christmas Day in the hospital on the general care oncology floor. We miss our twins, Hattie and Henry, so much – It was our first (and hopefully last) Christmas away from them. We’re happy to report that Hattie had “the best birthday and Christmas ever” back home in Minnesota thanks to our family and friends. Here in Philly, Santa found his way to Harvey’s hospital room! He awoke Christmas morning to a small stocking hanging on the wall above his newly delivered cars and candy. Santa knows how to make his hospital quarantine more bearable – Thank you, Santa! 😉

Harvey’s attention is currently aimed at the TV for a game of live bingo (He’s won 3 times so far!) hosted by Jalen Hurts, Philadelphia Eagles quarterback, who’s visiting the hospital today. We hope you had a wonderful Christmas & holiday weekend with family and friends! We’re anticipating the upcoming new year, full of promise for a normal, new life for Harvey.

Christmas evening together in the hospital.

An afternoon game of monopoly in progress.

Santa visited Harvey in the hospital!

Harvey & mom playing bingo.

Philadelphia Eagles quarterback, Jalen Hurts, hosting today’s bingo game.