Harvey’s Journey An unwavering ambition for permanent remission.
Meet Harvey

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 Journey Journal Harvey’s FAQs Join Harvey on facebook
CAR T Results

January 2024

IN REMISSION

No detectable cancer nor b cells. Normal brain MRI.

February 2024

IN REMISSION

No detectable b cells. Bone marrow/spinal fluid not tested.

March 2024

IN REMISSION

No detectable cancer nor b cells. Normal brain MRI (with white matter lesions).

April 2024

IN REMISSION

No detectable b cells. Bone marrow/spinal fluid not tested.

May 2024

IN REMISSION

No detectable b cells. Bone marrow/spinal fluid not tested.

June 2024

IN REMISSION

No detectable cancer nor b cells.
MILESTONE: 6 months cancer-free!

September 2024

RESULTS PENDING

Bone marrow biopsy, spinal tap, and labs in Philadelphia, PA.

December 2024

UPCOMING

Bone marrow biopsy, spinal tap, and labs in Philadelphia, PA.

Medical Metrics
days of treatment
days hospitalized
ER visits
clinic chemo visits
blood transfusions
spinal taps
intramuscular shots
bone marrow biopsies
IVIG infusions

Journey Journal Updates

Day 913 – September 16, 2024

Posted on
Our warrior is just waking up at CHOP in Philadelphia after his bone marrow biopsy (10th) and spinal tap (32nd) procedures. It’s been nearly 9 months since he underwent CAR-T cancer treatment. We’ll be sharing a long-overdue update soon with the results from today’s procedures and updates from Harv’s summer of 2024.

Day 816 – June 11, 2024

Posted on
This afternoon, we received Harvey’s cancer tests results from last week’s bone marrow biopsy, spinal tap, and labs in Philadelphia: Our boy is officially 6 months cancer-free!! What a momentous day and a huge milestone! There were no detectable cancer cells in his bone marrow, spinal fluid, nor blood. There continues to be no B cells in his blood (which…
Read All Updates

Featured Videos

Private Jet Experience

April 12, 2024

Harvey shares his story of flying (in) a private jet to Philadelphia to begin his CAR T cancer treatment. Something we were dreading became a magical experience thanks to the Corporate Angel Network & Medtronic!

Year 2 review

March 18, 2024

It’s been 2 years since Harvey was diagnosed with cancer. The second year brought moments of pure joy and moments of utter despair. Here’s a recap of Harvey’s second year, told frame by frame.

6th Birthday

October 30, 2023

Your 5th year brought challenges no child should have to bear. Hold close the bravery you’ve revealed from battles you’ve waged, and the extraordinary spirit that defines you. It gets better, I promise. ❤️

Year 1 review

March 18, 2023

Exactly 1 year ago today, Harvey received his cancer diagnosis. Wow. It feels so much longer than 365 days ago. Yet, what an accomplishment – especially when we were living moment to moment, not knowing what each next day would bring.

5th Birthday

October 30, 2022

Happy birthday, Harvey! Here’s a look back at some of the moments over the past 5 years that we’ll forever cherish.

Frequently Asked Questions

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:

  1. Another infusion of T cells or another type of CAR T therapy
  2. Bone marrow transplant (BMT) coupled with radiation therapy (This is not preferred)
  3. Both 1 and 2 (This is really not preferred)
  4. 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. His b cell count should be 0 or very near 0 for at least 6 months (until July 2024). 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 continue getting spinal taps to collect his cerebral spinal fluid (CSF) and 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).

Throughout 2024: Follow the latest results from CAR-T therapy here.

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.

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!