This past week has been incredibly heavy on our hearts.
Last Wednesday, while Skyler and I were on our way to pick up pizza, I received a call from Scarlett’s BMT doctor with news we were desperately hoping not to hear.
Unfortunately, the Kymriah CAR T-cell therapy did not work the way we had hoped. Scarlett has started producing B cells again, which meant we had to wait for all of her bone marrow testing to come back to see if any leukemia cells had returned.
By the grace of God, every level of testing came back MRD negative. While we are beyond thankful for that, her doctors explained that because her B cells returned so early, it is not a matter of if relapse will happen, but when.
One option would be trying another infusion of Kymriah, but the chances of it being successful again are unfortunately very low. Her doctor’s recommended next step is a bone marrow transplant.
Since receiving this news, I have spent countless hours researching every possible option. I learned about a humanized CAR T-cell clinical trial available through Children's Hospital of Philadelphia, and when Dr. Randy called with Scarlett’s marrow results, I asked him about it immediately.
Initially, there was concern that Scarlett might not qualify because previous patients needed to have active leukemia cells, not just an early B-cell return. Thankfully, after reaching out to the team at CHOP, we learned that this is no longer the case.
Yesterday morning, I received the consent forms to release Scarlett’s medical records to the doctors in Philadelphia for review.
Our lives have once again been turned upside down, but I will travel every mile necessary — nearly five hours to Philadelphia — to fight for the best possible chance at a cure for my little girl. I want to exhaust every option and every clinical trial available before putting her through a bone marrow transplant.
I had been preparing to return to work if Scarlett’s 100-day post CAR T-cell biopsy came back clear. I have been out of work since December, and during this time Devin has also gone without income while starting a new job this week, meaning there will still be a delay before his first paycheck arrives.
Right now, any support, prayers, shares, or help means more to our family than words can express as we continue this fight for Scarlett and hold onto hope for her future.
