Day 90 – June 16, 2022

7:30 pm: We’re all back at home and ready to celebrate sunset. We hope for less days like today. Harvey had a full-blown allergic reaction to his pegaspargase chemotherapy. It started with Lindsey noticing red spots developing on his ears, then hives on his nose, followed by the swelling of his entire face. He then signaled that the swelling was affecting his airway. All this happened in less than 45 seconds. His care team rushed a shot of epinephrine into his thigh, he screamed, showed us that his breathing was stabilizing, then promptly fell asleep. While the allergic reaction itself was enough for us, there’s more. His body has now “declared” that it will not tolerate pegaspargase and he will no longer be able to receive it. It will be replaced with rylaze. Rylaze is administered via intramuscular injection. 6 rylaze shots equals one pegaspargase dose, and he still needs at least 5 doses. Concisely, today we learned Harvey will have at least 30 very painful shots over the next months. Ugh.

We were handed 5 pieces of paper today that give a high-level overview of Harvey’s next stages of cancer treatment. The first 4 pages cover the next 6 months and page 5 details the following 6 months. We laid our eyes on the words that detailed Harvey’s next year of treatment. It felt like a gut punch. The first 90 days have been so… just so damn hard. I understand, yet can’t comprehend, that treatment will continue at a grueling pace for him in the months and years to come. I have so much specific information to share about what we learned today, but I can’t muster the strength tonight. We’re so burned out. We’re so in awe of our amazing 4 year old. He’s been so brave, so strong.

Know that Harvey is happy and back at home tonight. He’s spent most every moment next to his sister, Hattie, this evening.

11:40 am: Harvey had an allergic reaction to this dose of pegaspargase. He was given epinephrine immediately and we are currently monitoring his swelling, hives, and vitals.

10:05 am: Harvey is just beginning his dose of pegaspargase. We’re hoping he tolerates it well. We’ll have another update soon.

5:00 am: Harvey is now in the last 2 weeks of his consolidation phase cancer treatment. He received one last dose of oral chemotherapy at home last night and has a big day of chemotherapy ahead of him today. He’ll get another dose of vincristine (causing his muscle deterioration and weakness) and pegaspargase (he had an allergic reaction 2 weeks prior). We’re looking forward to putting today behind us. On Monday, Harvey received his leg braces, blue colored with a train design, that will help counteract leg weakness from chemo. The goal is to wear them during the day as much as possible, 8 hours being ideal. He wasn’t thrilled about this, but he bravely continues to take on each new challenge that’s presented.

The end of June will bring another bone marrow biopsy to determine if any detectable cancer remains in our boy. We desperately hope that he is in remission. The reality remains that even the most optimistic path forward will be long and challenging. Harvey’s Philadelphia-like type of b-cell acute lymphoblastic leukemia has higher risk of relapse. Will he go into remission just to eventually relapse? Will he need a bone marrow transplant? There are so many unknowns. We can only take it a day a time. And that’s exactly what we’re doing now as we prepare for today’s appointment. More updates to come today…

The first weeks of June have remained quiet with no big surprises or changes in Harvey’s condition (hence the lack of updates). Here are a few highlights from this past week: