Hello (again) from Philadelphia! We said our tearful goodbyes to Hattie and Henry on Thursday morning (and grandpa & grandma Goldade who graciously offered to stay with them while we’re away) and we arrived late Thursday night via a flight provided by the Corporate Angel Network. (What an amazing experience – Thank you so much! We’d planned on driving 20 hours until they surprised us with great news on Tuesday afternoon.) Since our arrival, we’ve been running errands, exploring the city, and getting ready for a busy upcoming week of appointments, tests, procedures, and chemotherapy for Harvey. The Ronald McDonald House in Philadelphia will be our home away from home for many weeks. If everything goes favorably, we may all be home again in mid to late January 2024.
The first week of treatment (Dec. 11-15th) will prepare Harvey’s body for receiving his programmed T cells next week on Dec. 19th. Preparing his body simply means a lot of testing and appointments (an MRI of his brain, echocardiogram, lab draws, a bone marrow biopsy, and spinal tap) as well receiving some very potent chemotherapy daily Monday through Thursday. The goal is to kill off his immune system (purposely) so that it doesn’t attack the new T cells when they’re infused into his body. There’s a chance he may end up losing his head of hair again – oh, we hope not! 🙁 We anticipate Harv will be severely immunocompromised, not feeling well, and be extremely tired as the week wears on. We hope this is the last time he’ll ever need chemotherapy: It’s within the realm of possibility if CAR T therapy works for him. And that’s been keeping our spirits up at this point.
In preparing for our trip to Philly, we gathered all Harvey’s pills to bring along. Even we, the one’s helping administer them daily, forgot how many he’s been on and/or is currently taking. If CAR T works, most of these pills, this poison, would no longer be needed!
The picture above from last week is damning. It’s the results of Harvey’s ClonoSEQ test which, as of now, is one of the most advanced genetic tests available to detect cancerous b cells in bone marrow. Notice the big plus sign (+) and the number 36. It means that for every 1 million cells sampled, an average of 36 are cancerous in Harvey’s bone marrow. So not only did he relapse, but he still isn’t in remission. He is MRD positive. He has detectable cancer in his bones. While he’s come a long way from March 18th, 2022 when nearly every cell out of a million sampled were cancerous, the reality is we need to find a way to kill every single cancer cell for this to all go away. This kid has fought so hard. Given up so much. And it’s still not enough. It’s the gut-punch reality we currently find ourselves in. We spend sleepless nights hoping the CAR T therapy he’s about to receive next week is the answer. We can’t fathom the thought of needing a bone marrow transplant along with head/spine radiation if CAR T isn’t successful. It’s too dark of a place for our minds to wander to right now and we try not to go there.
We’re so thankful to have had a few non-medical days to spend with our cancer fighter here in Philly. We’re also blessed to have spent last weekend together as a family celebrating Christmas early. The kids certainly didn’t seem to mind opening their presents a few weeks earlier than usual! Thank you for your continued love and support: We’ve cherished every bit of it, especially as we’re feeling vulnerable a thousand miles away from home and our family while we await a cancer treatment that has our hopes set high. We’ll have more updates to come throughout the next weeks of highs and lows. Thank you so much for checking in on our warrior and our family.