Day 738 – March 25, 2024

We’ve received all the test results back from Harvey’s bone marrow biopsy, MRI, and labs taken 2 weeks ago at the Children’s Hospital of Philadelphia. Here is what excellent news looks like:

Harvey’s latest ClonoSEQ test results show no evidence of cancer in his bone marrow 3 months after receiving his CAR T treatment! There continues to be no detectable b cells in his blood (very good) which indicates his cancer-killing T cells continue to protect his body from cancerous cells. There is no detectable cancer within Harvey and we are absolutely elated! We hope to get these same results for his next Philadelphia procedures & appointments in June, September, and December. Harv will get his next infusion of IVIg on Friday here in Minnesota to keep his immune system boosted due to his lack of b cells.

One thing we haven’t mentioned much about here is Harvey’s MRI. The past two MRI scans have shown a very normal looking brain structure for a 6 year old, and we are so relieved to know this! After seeing that cancer had spread to his spinal fluid in October, we were terrified to learn it sometimes leads to “brain involvement” and he would need radiation therapy if CAR T doesn’t work for him. We’re very thankful he’s been able to avoid radiation therapy and that CAR T has proven to be effective so far. However, his medical team has noticed changes to the white matter in his brain. More specifically, Harvey has new lesions of white matter in areas that he didn’t have before. What does this mean? No one really knows. Since white matter helps form the connections between all the different areas of the brain, this undoubtedly concerns us. Harvey now struggles with short-term memory and recalling certain longer-term things, such as difficulty remembering letters of the alphabet when putting a pencil to paper. He previously had no problem with this. We continue to wait and see if this resolves or not. This really serves as a reminder to us: Modern medicine and medical practice has come a long way, but there’s still so much we don’t know about, well, everything. We continue to have Harvey’s mind on ours and we’ll share any new updates we have going forward.

Thank you so much for checking in and for all the love and support you’ve given Harvey and our family! We will be joining Hope Kids for their Hope K fundraiser walk on June 22 in Lakeville, MN. They have helped Harvey out so much over the past 2 years and we want to start paying it forward, helping them continue to support other families in their time of need. Thank you to everyone who has graciously donated to Harvey’s fundraiser (shout-out to the Bisbey family, Tom Schrader, Amber Staloch, and the Goldade grandparents for helping us kickoff Harvey’s campaign!!). Remember, it only takes a $1 donation to be able to write a funny message that Harvey will see and share on his campaign page. 🙂

Happy Spring! (Oh, wow. Look! 11″ of new snow…) <grabs shovel>