Hi! I’m Harvey, a 6-year-old cancer-fighting warrior from Minnesota. My journey began on 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. Unfortunately, after 18 months of treatment, my cancer returned.
On October 5, 2023, I found out that I relapsed, and cancer had spread to my spinal fluid. I spent 7 weeks away from home in Philadelphia, PA, receiving CAR T therapy – a promising cancer treatment. On January 26, 2024, my doctors told me that I was once again in remission, and no cancer cells were found in my body!
We hope the T cells I received from CAR T therapy will continue to keep me cancer-free. I’ll have many more appointments and bone marrow biopsies/spinal fluid tests over the next year, but I’m back home, able to return to school, and living my best life!
Thank you to each and every one of you who has thought of me, followed my journey, or helped me in so many thoughtful, heartfelt ways since my cancer fight began on March 18, 2022!
Harvey’s official diagnosis is high risk Philadelphia-like B-cell acute lymphoblastic leukemia (high risk Ph-like BALL).
More simply, 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 cancer treatment (countless rounds of chemotherapy) didn’t work, Harvey received CAR T therapy at the Children’s Hospital of Philadelphia (CHOP) in Philadelphia, PA on December 19th, 2023.
On January 26, 2024, we found out that all of Harvey’s tests found no cancer in his body: He is currently MRD (minimal residual disease) negative and in remission! As long as the cancer doesn’t return, he will not need any other cancer treatments. However, if CAR T therapy doesn’t work for Harvey, other treatment options include:
- Another infusion of T cells or another type of CAR T therapy
- Bone marrow transplant (BMT) coupled with radiation therapy (This is not preferred)
- Both 1 and 2 (This is really not preferred)
- Other clinical trials/research studies (currently unknown to us)
It’s a procedure that collects T cells from 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 had his T cells collected (via apheresis) in November 2023, received his reprogrammed T cells in December 2023, and is now back in remission as of January 26, 2024! We’ll post updates as we monitor him and get results to see how effective CAR T therapy is for him.
We need to determine if CAR T is both working and killing all cancerous cells. To determine if CAR T is working, the amount of b cells in Harvey’s blood will be measured and monitored. Harvey’s cancer has occurred only in his b cells, and therefore the goal of CAR T therapy is to destroy his b cells. Going forward, his b cell count should be 0 or very near 0. This will be a good indicator of whether or not CAR T is working. He’ll get blood drawn and sent to the lab monthly to measure his b cells. But to determine if CAR T is also killing his cancer, he’ll need to continue getting spinal taps to collect his cerebral spinal fluid (CSF) and also bone marrow biopsies to collect his bone marrow. Both spinal fluid and bone marrow will be tested every 3 months, and we need to have these tests show no evidence of cancer (also called minimal residual disease negative, or MRD negative).
January 18th, 2024: We received the first results from Harvey’s blood draw: He had 0 b cells in his blood. This was our very first indication that his CAR T therapy is working and is eliminating all the b cells in his body.
January 19th, 2024: We received the first results from Harvey’s bone marrow/spinal fluid test: There is no detectable cancer! This was our very first indication that his CAR T therapy is killing his cancer. It’s important to note that these results are from the less sensitive/precise test and we await the results of the clonoSEQ test (the most sensitive and thorough cancer test) expected in late January or early February. We’re hoping to find out there is no detectable cancer in his body.
January 26, 2024: Harvey’s ClonoSEQ test results show 0 cancer cells detected! He is again in remission (MRD negative). He will have 3 more ClonoSEQ tests throughout 2024 and we want him to remain in remission.
Monthly throughout 2024: Harvey will get his blood drawn each month to measure his b cell count, which should remain at or very close to 0. If at any time his b cell count is rising, he will either need another infusion of his reprogrammed T cells in Philadelphia or possibly another type of cancer treatment altogether.
Quarterly throughout 2024: Harvey will return to Philadelphia 4 more times (likely March, June, September, and December) this year for bone marrow biopsies and spinal taps to determine if there is any detectable cancer in his body. If at any time cancer is detected, another type of cancer treatment will likely be needed. We hope to never need a bone marrow transplant nor radiation therapy.
2025 onward: If Harvey remains MRD negative with no detectable cancer, he will not need further cancer treatments. It may take 5-10 years cancer-free to determine whether or not CAR T is truly a cure for him. We truly hope so! An intended side effect of CAR T therapy is b cell aplasia: Having no b cells. Most successful CAR T patients have not had their b cells return even years later. B cells are an important part of the body’s immune system. Therefore, Harvey would likely need monthly infusions of immunoglobulin (IVIG) to keep his immune system functioning, potentially for the rest of his life.
Harvey returned home to Minnesota on January 19th, 2024! He was in Philadelphia December 7th, 2023 through January 19th, 2024.
Currently, there is no plan for Harvey to receive a bone marrow transplant or radiation. However, if CAR T therapy doesn’t eliminate his cancer, he’ll likely need it.
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).
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 has all been 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!