Hi! I’m Harvey, a 6-year-old cancer-fighting warrior from Minnesota. My journey began March 18, 2022 when I was diagnosed with leukemia. After 123 days of intense cancer treatment, I experienced a glimmer of hope when I achieved remission on July 19, 2022. However, 18 months later, my cancer returned. On October 5, 2023, we found out that I had a relapse and cancer spread to my spinal fluid. Now, I’m preparing to undergo CAR T therapy in November & December 2023.
Harvey has high risk Philadelphia-like B-cell acute lymphoblastic leukemia (high risk Ph-like BALL). This is commonly referred to as “blood cancer,” leukemia, or BALL.
When we say “Harvey’s cancer returned,” we really mean it likely never completely disappeared. The first 18 months of treatment/chemotherapy didn’t succeed in eliminating every single cancer cell, and it spread to his spinal fluid.
When a cancer patient is said to be in remission, it means that medical tests did not detect any cancer. However, current cancer tests aren’t very effective nor advanced, and it only takes one cancer cell for the disease to spread. And one single cancer cell in the body is certainly undetectable by medical tests available today. So, even though Harvey’s test results detected no cancer and he was declared to be in remission, we now know that not all of the cancer was eradicated.
The reality is that no one is completely sure and nothing is guaranteed. We are willing to do whatever it takes to give Harvey the chance to be cured. Curing him means eliminating every single cancer cell in his body and preventing the development of new cancer cells.
Since initial chemotherapy didn’t work, other options for Harvey include:
- CAR T therapy (This is the preferred option)
- Bone marrow transplant (BMT) coupled with radiation therapy (This is not preferred at this time)
- Both 1 and 2 (This is really not preferred at this time)
- Other clinical trials/research studies (currently unknown to us)
October 2023 Update: We’ve confirmed the next step for Harvey’s cancer treatment will be CAR T therapy in November/December 2023 at Children’s Hospital of Philadelphia (CHOP) in Philadelphia, PA. More updates to come.
Concisely: It’s a procedure that collects T cells a cancer patient’s blood, reprograms them to fight their specific type of cancer, then injects them back into their body. We like to explain it by saying it “teaches their own body to kill their cancer.” This is the ideal outcome, but is not guaranteed. It’s worth mentioning that CAR T has shown amazing results in a good number of patients with Harvey’s type of cancer – We are incredibly hopeful.
Of course, that’s a gross over-simplification. CAR T is a complex, amazing, emerging type of individualized immunotherapy with promising results for cancer treatment. We hope CAR T alone is enough to cure Harvey. He is currently scheduled to begin CAR T therapy in early November 2023 (collect his T cells) and then inject them back into his body in mid to late December 2023. We’ll post updates as we continue to learn more.
Unlike CAR T therapy that trains a patient’s body to eliminate it’s own cancer cells, a bone marrow transplant takes healthy bone marrow cells from a another person (a donor) and injects them into a cancer patient in hopes that they will produce functioning, non-cancerous cells.
Again, this is an over-simplified explanation. However, we hope to avoid this option for Harvey if possible. A bone marrow transplant for him would mean an increased number of risks and side effects including:
1. Being susceptible to life-threatening illness and/or infection. His immune system would need to be eliminated before the transplant begins.
2. Since Harvey’s cancer spread to his spinal fluid, radiation therapy would be also needed.This is never preferable for young, developing patients due to the long-term consequences of radiation exposure to the brain (and many other areas).
As of October 2023, there is no plan for Harvey to receive a bone marrow transplant or radiation.
Harvey has shown incredible strength and bravery. Despite enduring constant pokes, procedures, and chemotherapy, he is thrilled to be back in school as a kindergartner, surrounded by other kids. However, he remains severely immunocompromised, requiring us to carefully balance letting him enjoy a normal childhood while protecting him from illness and infection. Certain activities, like swimming in a pool or lake and being in public without a mask, are restricted during his cancer treatment. Nevertheless, we’ve discovered many enjoyable things to do together as a family.
As parents, this all is simply devastating; there’s no other way to say it. We live day to day, witnessing Harvey (and his siblings) being robbed of their time in childhood. Everything can and has changed in an instant on numerous occasions. Despite the challenges, we are grateful for today, hopeful for tomorrow, and navigating the unknown together to the best of our abilities and intuition. Our survival & sanity is thanks to the incredible care provided by experienced medical research and practice teams, as well as the selfless support from our loving family and friends during our many times of dire need. Thank you to each and every one of you that has thought of us, followed Harvey’s journey, or helped us in so many thoughtful, heartfelt ways since March 18, 2022 – We are incredibly grateful for you!