Day 113 – July 9, 2022

9:30 pm: The past week has been a blur. Harvey made it through his first round of rylaze injections, receiving his last on Wednesday, July 6th (8 shots total over 2 weeks). It was rough. He lost over 2 pounds from vomiting and lack of appetite. He either couldn’t sleep due to nausea or exclusively slept the days he was feeling well. He’ll likely have more rylaze in future treatments, but for now: He’s done! Harvey was scheduled to have a bone marrow biopsy yesterday, July 8th, but his immune system and body remain too weak. He is getting a much needed break right now and he’s tentatively scheduled to have a bone marrow biopsy, then be admitted to the hospital to begin the next round of treatment on July 14th. This is all dependent on his immune system recovering before then.

We’ve come to a fork in the road for Harvey’s treatment plan. If his bone marrow results show no measurable cancer cells from his upcoming biopsy, he will officially be in remission and declared to be MRD (minimal residual disease) negative. He would then continue working through numerous rounds of treatment (described in the previous post) over the next years to keep him in remission. This is the path forward we’re hoping for, the lesser of two evils. However, if cancer cells are still detected and he is not in remission (MRD positive), the next steps would include a bone marrow transplant. We’re hoping to not need this option as it would introduce much more risk for Harvey. So we anxiously await his bone marrow biopsy and the results in the coming weeks.

We had a not so eventful, but memorable, holiday weekend. We watched neighborhood fireworks from our driveway, made s’mores, and played outside as much as possible (Harvey slept through some of the festivities). The kids received a care package of toys and activities from our Mayo Clinic family (thank you so much!!) and have spent many hours outside enjoying them! Speaking of Mayo Clinic, we took a day trip down to Rochester, MN on Wednesday, July 6th, to visit with oncology and discuss Harvey’s care plan. If Harvey needs to have a bone marrow transplant, we’ll likely transfer down to Mayo Clinic for the procedure and recovery. We’ve received wonderful care at Children’s Minnesota in Minneapolis, but we’d have more of a support system in the Rochester area if we need to stay in the hospital for months at a time. Harvey was so excited to drive through “his” Rochester neighborhood, look at his first home, and drive by the houses of family friends (even got to say hi to a few – it was wonderful to briefly see the Friedle & Bisbey families!).

Harvey is doing well this evening. He’s slowly regaining energy and appetite, and has been much more playful and active today. He even helped clean up around the house this afternoon, my big helper! Yesterday, we noticed Henry had a rash on his face that was spreading. He was diagnosed with Parvovirus B19 which lead to fifth disease. It’s about as serious as the common cold, thankfully. Nonetheless, our poor guy is covered in bumpy, swollen, itchy rashes, but we’re relieved knowing this will pass in the upcoming week. However, it would be life-threatening if it spread to Harvey. So Lindsey, Henry, and Hattie have vacated the house for awhile and all our possessions have been met with a Clorox wipe and/or Lysol. It’s been stressful, tiring, and a bit chaotic, but we made it through another week, albeit not under the same roof.

We’ll promptly post updates as Harvey’s immune system recovers and we prepare for his next procedures. Thank you so much for all your love & support! I hope to type the words “He’s in remission!” in the weeks to come…