Hip, hip, hooray! it’s T cell day! This morning’s appointment has been months in the making. At 12:12 pm Eastern Time, Harvey received his reprogrammed T cells via a 5 minute infusion to complete his CAR T therapy. It was all over by 12:17 pm. He was monitored for an hour afterwards with vital sign checks every 15 minutes. At 1:20 pm, we walked out of the clinic together. Harvey lounged comfortably in his bed while the potentially life-saving T cells were infused into him in a very humdrum manner. It was surreal to hold a syringe containing a semi-clear, creamed corn-smelling liquid and know it has the potential to save our boy and let him live a full, fulfilling life. It was uneventful and exciting – exactly what we were hoping for!
Before the procedure began, Harv was doing Yoga in his bed (insisting it was necessary to prepare for T cells) and watching cat videos on his iPad. The universe, which today had a good sense of humor, gave us a sign when one of his doctors today appeared at the doorway and introduced himself. …wearing a Christmas cat sweater! It matched Harvey’s aura perfectly and set the mood instantly. We couldn’t have found better apparel if we tried! He introduced himself and handed Harvey a bag of Sour Patch Kids candy, which would help to mask the unpleasant taste often caused by infusing the T cell cocktail.
So now, what comes next? Concisely: Manage side effects and wait to see if CAR T is working. Even though Harvey completed CAR T therapy this morning, we’re far from being finished – exactly a year away if everything goes favorably. As expected, Harvey’s blood labs today revealed that last week’s chemo has almost completely eliminated his immune system. His ANC is at 300. (Below 500 is seriously immunocompromised and under 200 is grounds for hospitalization.) Until his immune system strengthens, we’ll stay hunkered down in our room at the Ronald McDonald House. Now, our job is to keep him away from any source of illness and to keep close watch on him for signs of side effects from the T cells, the main ones being fever and/or neurological symptoms. The next 4 weeks could bring some serious side effects, such as cytokine release syndrome. Every patient is different and we’ll be checking his temperature every 4 hours, ready to run to the emergency room at the first sign of fever. He’ll also have clinic check-ups and labs twice a week for the next month here in Philly.
Once Harvey is past side effects in the coming weeks, we’ll then need to determine if CAR T is working for him. He’ll receive another bone marrow biopsy and spinal tap (ouch!) on January 19th to test for the presence of cancer cells. We want to see 0 cancer cells (or near 0 cancer cells) detected by the ClonoSEQ testing. We won’t receive the results until late January or early February 2024. Back to the terrible waiting game… While the first test results will be very important, he’ll also be tested monthly to ensure the T cells are continuing to work and that his cancer isn’t returning. We’ll have many more trips to Philadelphia in 2024.
I could spend paragraphs thanking the CHOP medical professionals and staff for everything they’ve done for Harvey and to advance pediatric cancer treatment. It’s not only amazing that Harvey was able to receive CAR T therapy (only 500ish kids have at CHOP!), it’s a miracle this treatment exists. It was first used only 10 years ago at CHOP on a girl, Emily Whitehead, who is now a freshman in college at the University of Pennsylvania, right across the street from the hospital! We are beyond grateful. And yet, they raised the bar again today. Stephanie, our wonderful social worker at CHOP, showed up at Harvey’s door before his procedure this morning with a smile on her face and a bag with a surprise for Harvey in her hand. She presented the bag, words “Hello Sunshine” on the outside, containing his very own Xbox made possible through a generous donation. Wow!! Harvey’s reaction – his excitement – could be felt, seen, and heard from the moment he realized what was happening. CHOP: Thank you SO MUCH for everything! We don’t know who donated this amazing gift to Harvey, but we hope that somehow these words find their way to them.
UPDATE: A huge thank you to the Sassy Massey Smiles Foundation! They were the generous donor of funds that allowed Harvey to receive a new Xbox. It has brought him so much joy during his time away from home here in Philadelphia, PA. Jillian Massey, the 5-year-old inspiration for the foundation, succumbed to brain and spine cancer in late 2017. Jillian’s ability to bring smiles to countless people persists, even reaching those who never had the opportunity to meet her – Just ask Harvey! Thank you so very much to the Sassy Massey Smiles Foundation & the Children’s Hospital of Philadelphia for this amazing gift!
Today was a big day. Tonight, our boy is happy, full of cancer-fighting T cells, smells like creamed corn, and is excited to be playing his new Xbox while quarantined from the rest of the world. We’ll continue to post updates as his T cells begin fighting cancer and likely presenting new side effects. We hope to avoid being hospitalized over the next couple weeks. <fingers crossed> Thank you for all your love, support, messages, and cards we’ve received here in Philly! Grateful is truly an understatement.