Harvey spent 14.5 hours at the Children’s Hospital of Philadelphia (CHOP) clinic the past 2 days receiving chemotherapy (fludarabine and cyclophosphamide) while playing his new-found favorite Xbox racing games. This is the first time he’s had fludarabine and we didn’t know what side effects to expect. Thankfully he’s had no nausea but was definitely more tired today. His immune system continues to be killed off and he’s becoming more immunocompromised with each passing hour, which is the goal of these chemo treatments. A very weakened immune system is needed before he receives his T cell infusion next Tuesday. He has 2 more days of in-clinic chemotherapy: Tomorrow and Thursday. Masks, hand-washing, and keeping our distance from others is now the name of the game. (Not a very fun game, might I add!)
We’ve had a lot of great questions about CAR T therapy & the T cells Harvey will be receiving next week:
Q: How long will it take/how will Harvey get his T cells?
A: Under a minute by a simple infusion into his port. Seriously. The actual T cell infusion for CAR T therapy is a non-event. He’ll receive a quick infusion on Dec. 19th and will leave the clinic shortly after.
Q: How long will you need to stay in Philadelphia?
A: At least until mid January. Even though the actual infusion of Harvey’s life-saving T cells will happen in only a minute, the side effects from this treatment in the following weeks can be life-threatening if not dealt with immediately. We’ll need to stay within an hour of CHOP for this reason.
Q: How and when will you know if Harvey’s CAR T therapy was successful?
A: We’ll likely get the first real results in late January/early February 2024. He will get another bone marrow biopsy on January 19th and it will be used for ClonoSEQ testing to check for any signs of cancer. (ClonoSEQ is currently the most sophisticated cancer test available.) We hope no cancer (0 cells) will be found. This is the definition of success in the short term. Longer term, his medical team will draw labs regularly to ensure that the T cells he receives from CAR T therapy stay in his body for at least 6 months. The longer the T cells are in his body, the better the chance that every single cancer cell is killed. If it’s determined that the T cells are not thriving in his body any time before June 2024, he’ll receive more T cells (they have extras ready if needed). After 6 months, if no cancer cells are detected, he’ll officially be done with treatment (hopefully forever!).
Q: What are the side effects of CAR T?
A: It all starts with a fever. When Harvey is febrile (101.3 F or higher), we need to take him immediately to the clinic (during business hours) or to the emergency room (non-business hours/days). A common side effect for CAR T patients is cytokine release syndrome. It’s simply the body’s response to the T cells and can be managed with medication and monitoring in the hospital. It’s commonly compared to having the flu, but can be more serious for some patients. A more scary, though usually temporary, side effect is encephalopathy syndrome which has neurological symptoms of memory loss, confusion, and can even impact the ability to talk. There’s a plethora of other symptoms, but the moral of the story is: Stay close to CHOP. They’ll help us manage any side effects of CAR T in the upcoming weeks.
Above all, there are a lot of unknowns around exactly what side effects Harvey will experience and whether or not CAR T will be successful for him. But we are so happy and thankful to be here in Philly surrounded by people who have dedicated their lives to the mission of advancing pediatric cancer treatment. I also believe we’re making a great impression on the CHOP staff. For example: Our wonderful nurse practitioner, Diane, asked the 3 of us during our first appointment if we have any questions or problems we want to discuss. Harvey, without hesitation, fired back with “Well, my dad has a drinking problem!” The backstory: I often have a cup of coffee or bottle of water in my hand that I sip on throughout the day. I’m known for sometimes swallowing wrong and ending up in a coughing fit. This is my “drinking problem.” 🙂 Oh, Harvey. It’s never boring with you!
Speaking of never boring, what a gift it is to be staying at the Ronald McDonald House in Philadelphia. They’ve already provided so many opportunities for Harvey to play, make friends, and take part in activities that he wouldn’t have experienced otherwise. Santa even stopped by for a visit tonight and brought the kids presents! We’re blessed to know that the upcoming holidays will still be special for him while we’re here, away from home & family. We’re also blessed to have such an army of support: Thank you all for the wonderfully thoughtful messages you’ve sent us here on Harvey’s site and on Harvey’s facebook page! We read every single one with him. We’ve also been asked for Harvey’s mailing address here in Philly. Before I share it, I want to sit down with you and have a heart-to-heart. <patting the empty space next to me> Harvey absolutely loves getting mail. It brings him joy opening letters addressed to him and reading the message within out loud. He’s received many, and each one is a new and exciting experience for him. Joy is invoked by getting mail with caring, supportive, and/or just plain funny messages to add to his collection with the expectation of nothing more. Truly. That said, if you’d like to send Harvey a letter or card for his collection, we share the address in hopes that you will. Through early January 2024, Harvey’s mailing address is:
3925 Chestnut Street
Philadelphia, PA 19104
UPDATE: Harvey will no longer receive mail at this address.
To everyone who has supported us in any and every way over the past 20 months: Know that we are so far behind on thank-yous; it’s embarrassing. We think and talk about you nearly every day. We can’t wait to reach out and tell you personally how you’ve impacted us. We trust that time will come soon as we aim for better days ahead. Above all, thank you being amazing. Caring. Supportive. Loving. Funny. Encouraging. Understanding. Thank you for bringing the light of who you are to some of our darkest days. Without you, we wouldn’t be here today, armed and ready to soon talk about Harvey’s cancer in the past tense.