Day 314 – January 26, 2023

2:45 pm: Today marks the beginning of another chapter for Harvey in his cancer fight. The last stage of planned cancer treatment, maintenance, started this morning at 7:45. (Mom is with Harvey at the cancer clinic as I type this.) This stage will be the longest by far, spanning at least 2.5 years and is expected to conclude in the middle of 2025. He’s completed 6 out of the 7 treatment stages over the past 10 months and has 30 months of maintenance to go. Concisely, he’s 25% done with cancer treatment. I’m reluctant to say only 25% to remain optimistic, but the reality is that maintenance has us feeling uneasy. Up until now, his body has been hit with cocktails of chemo and medications over shorter periods of time. Steroids for a few weeks here. Rylaze for a few weeks there. Intermittent doses of mercaptopurine (also called 6-MP). That all changes for the next 30 months beginning today. Harv will now have 6-MP every single day until the end of treatment. No planned breaks. And with possible side effects including liver injury, we’re anxious at best. His 6-MP will also be combined with intermittent doses of the steroid prednisone every single month, which will likely cause weight gain and irritability. Vincristine is also a part of the maintenance regimen, which previously induced serious side effects for him including neuropathy in his feet and very tight leg muscles (he wears uncomfortable leg braces to help with this). He’ll continue receiving his research study drug, ruxolitinib, and also methotrexate orally and intrathecally (he HATES how the “sleeping medicine,” propofol, makes him feel during this procedure). So even though he’s arrived at the last stage of treatment, it certainly doesn’t feel like it. But we’re so thankful for the progress he’s made and are incredibly proud of our cancer fighter! As of 9:45 a.m. he’s awake from his morning procedure but feeling pretty rough (especially nauseous).

Harvey’s hemoglobin has been running low from the last rounds of chemo, but not quite low enough for a blood transfusion. He’s therefore been fairly low-energy for the past two weeks, taking plenty of naps during the day. He’s tired, but healthy. COVID and the flu are spreading rampantly in the community, but thankfully we’ve all remained healthy. <knocking on wood while wearing masks> Since our last update, I (dad) was able to spend some quality time with Hattie & Henry last weekend at a winter camp that featured snow tubing, arts & crafts, sleigh rides, and plenty of indoor activities in their recreation center. Hattie has no fear and spent copious of time on the rock climbing wall and speeding down the biggest sledding hills they had to offer. The best part of our getaway was meeting up with close family friends that we haven’t seen in over a year! It was so fun to catch up with Tony & Ashley while Hattie and Henry played with their friends Lydia, Cole, and Grant. On Tuesday, Henry and I traveled to Rochester for an appointment which was a good reason to get a hotel room and go swimming. The kid spent hours in the pool and it was actually hard to wake him up the next morning to leave! Hattie continues to hit the ice for hockey practices and games regularly – She absolutely loves hockey. While this January isn’t likely as exciting as our January 2022 (if you ask our kids), Lindsey and I are trying to be more intentional about spending one-on-one time with our twins and getting out of the house with them more often. Everything they knew abruptly changed forever on March, 18th 2022 and they lost so much of the attention we were able to once give them.

That’s our update on day 314. Thank you so much for your continued love & support! We have so much to be grateful for and, while we don’t want to wish the time away, we long for post cancer treatment days. There’s still a long way to go, but it feels good to say “Harvey is in the last stage of cancer treatment” even if it is the longest stage.