Day 664 – January 11, 2024

Being cautiously optimistic, we’ve been hesitant to write an update describing how well Harvey has been doing. We’re officially in “wait and see” mode – waiting to see if CAR T therapy is the answer for Harvey’s leukemia. It’s certainly a weighted wait. He seems to have a higher temperature during the daytime, between 99.5º F. and 100º F., but hasn’t had any fevers since late last month. His appetite is slowly returning. He’s sleeping better at night. His energy has started to reappear. But we’ve noticed that he’s still having some difficulty with memory-related tasks. Harv sometimes struggles to remember names of friends when looking at pictures and asks for help when trying to recall how to write certain letters of the alphabet on paper. Neurotoxicity, specifically ICANS, is a known side effect from CAR T therapy and we’re hoping it continues to improve with time. Harvey had grade 3 ICANS while hospitalized in December during some very seriously dark days. We’ll share these concerns this afternoon at his neurology appointment and also find out if he needs to remain on Keppra, the medication he continues taking to prevent seizures.

While preparing to write this update, I noticed a certain comment left here on Harvey’s blog. It’s a comment that came from Harvey:

Harvey wants everyone to know that he reads and absolutely loves all your thoughtful, loving comments here on his site and facebook page! Thank you all so much for everything you’ve done for Harvey and our family – we can’t say it enough! Harvey, and his huge collection of cards you’ve mailed him, are planning to return back home to Minnesota hopefully late next week. He’ll have another bone marrow biopsy, spinal tap, and an infusion of immunoglobulin (IVIG) on January 17th, then will be allowed to leave Philadelphia. We hope to all be back home under one roof by next weekend!

The holidays are over, but we’re still enjoying the lights at the Ronald McDonald House.

The holidays are over, but we’re still enjoying the lights at the Ronald McDonald House.

Harvey hanging out with Ronald.

What happens next?

We’ve been asked this question a lot. We’ve asked this question a lot. Concisely: 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).

A week from now: We will receive the first results from Harvey’s labs showing how many b cells are measured in his blood – we’re hoping for 0 or very close to 0. This will be our first sign whether or not CAR T therapy is working.

Late January/early February 2024: We will receive the first spinal fluid and bone marrow test results post CAR T (the bone marrow and spinal fluid samples are sent out to a different lab – hence the processing time and waiting for results). These results will show if there is any detectable cancer in his body. This will be the first sign of whether or not CAR T therapy is truly killing his cancer.

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 has been through so much over past 21 months, and especially the past 3 weeks. But he’s doing well right now and we’re anticipating that 2024 will be the year that he gets his childhood back. We’re tired and grateful. Hopeful and homesick. We’ll post more updates as we return home and begin receiving test results back over the weeks and months to come. Remember – no or infrequent updates on this site are a very good thing! 🙂 Thank you all for all your love and support! Harvey, his 2 loose front teeth, and our entire family, are so grateful for you!