Good morning from Philadelphia, PA!
Today marks exactly 600 days since Harvey’s initial leukemia diagnosis. March 18th, 2022 feels like an eternity ago, but Harvey’s recent relapse brought back the same emotions from that very first day. The preceding 599 days of treatment proved unsuccessful. So on this 600th day, an entirely new treatment plan begins 1,000 miles east from where it all started.
Harvey is beginning CAR T (pronounced “cart”) therapy this morning at CHOP (Children’s Hospital of Philadelphia) in Philadelphia, PA. Despite the challenges, we can’t help but be optimistic knowing that today might be the first day of a treatment that could cure our boy, bringing him back to the world where normal 6-year-olds live, play, and thrive. For those curious, here’s the exact clinical trial he’s enrolled in for CAR T. This treatment plan will have 3 stages: Collect, program, and infuse. More about that shortly…
Here is a picture of Harvey in his hospital room from earlier this morning. At this moment, he is asleep in an operating room, undergoing the placement of a central line in his neck. It broke our hearts watching the tears pool in his eyes as he solidly maintained a brave face while being wheeled away from us and into the operating room. This part never gets easier. It never becomes familiar.
His central line will be connected to an apheresis machine later today to collect T cells from his blood. (This is the first stage of treatment: Collect.) After collecting T cells, which will take an estimated 2-5 hours this afternoon, the central line will be removed and tomorrow, we – Harvey, mom, and dad – will fly back home to Minneapolis, MN. Once back home, the T cells will be programmed (taught how) to fight his cancer in a lab at the University of Pennsylvania over the next 1-2 months. (This is the second stage of treatment: Program.) Harvey will then return to Philadelphia (likely in late December or early January) to have them infused back into his body, with the hope that they’re able to find and kill all his cancerous B cells hiding in his body. (This is the last and longest stage of treatment: Infuse.)
While this initial trip to Philadelphia was only a few short days packed with appointments, our next visit will be considerably longer. We’ve been informed to anticipate a stay of at least five weeks, potentially longer, depending on the side effects that Harvey may experience after receiving the infusion of his reprogrammed T cells.
Between now and then, Harvey will return to receiving chemotherapy to ensure his cancerous cells don’t return in full force. For the past 2 weeks, he hasn’t received any chemotherapy in order to allow his body to produce the T cells that they’re currently collecting as I type this. It was 2 weeks of pure bliss not poisoning our boy, but also nerve-racking knowing that cancerous cells, even if few, were allowed to roam free in his body unchecked. I can only imagine how paranoid we’re going to be in a few months when he’s no longer on any chemotherapy! (After the reprogrammed T cells are injected, he will no longer have chemotherapy unless his cancer returns again.) Our roller coaster of emotions will undoubtedly continue to offer daily rides for many months to come. All aboard!
As our first “treatment trip” to Philly comes to a close with today’s procedure, we want to thank you all so very, very much for following Harvey’s Journey and for everything you’ve done for us. Thank you to our family currently providing care to Hattie & Henry back in Minnesota while we’re away. Thank you to our family & friends – our neighbors – for all your texts, calls, letters, time, effort, love, and support. We are so incredibly grateful – we couldn’t bare the weight of this fight without you. Since our last post, our 6-year-old Mario experienced an amazing birthday and Halloween because of you. We thank you from the bottom of our hearts and want you to truly understand the profound impact you’ve had on us. A cancer battle can be a lonely place, but we haven’t been alone.