Day 105 – July 1, 2022

11:30 pm: A sleepless night is underway for Harvey with bouts of vomiting followed by acute, short-lived migraines in one to two hour intervals. After throwing up, he immediately grabs his head and cries from migraine pain for 10-20 seconds. (His care team believes this is due to blood pressure spikes while vomiting, enhanced by his low red blood cell count, causing painful short-lived migraines.) He received his 5th and 6th dose of rylaze this morning via a shot in each thigh. As unpleasant as intramuscular injections are, the side effects of rylaze have been much more unpleasant. It seems any form of asparaginase causes fevers and/or nausea (now with migraines), and rylaze is certainly no exception. His little body continues to be punished by the ever-changing regimen of medication and chemotherapy. More snuggles, backrubs, consoling, and laundry to come overnight.

Harvey’s latest complete blood count today shows his immune system continues to dwindle, now to the point where he’s again severely immunocompromised. His ANC is down to 0.070 and will need to rise to at least 0.750 before he can begin his next round of treatment. Next Friday, July 8th, he’ll have another bone marrow biopsy to test for any detectable cancer left in his body. We are longing for the day when we learn that our boy is in remission, a.k.a. minimal residual disease (MRD) negative. That day is hopefully just a week or two away. If, for some reason, detectable amounts of cancer remain present, a bone marrow transplant may be the next option for treatment. Uncertainty is the only thing we’re certain of at this juncture.

The upcoming weeks will bring big news that will determine the next rounds of treatment. For now, we sit and wait impatiently, comforting and loving up on our warrior every step of the way. As we continue to navigate the daily highs and lows of a pediatric cancer battle, we can’t thank you enough for your support and messages of love and encouragement! We read every word and take them to heart. ❤️