Day 186 – September 20, 2022

4:00 pm: Since our last update, we’ve had some wonderful time with our energetic, happy boy during downtime between his cancer treatment stages. Harvey wrapped up his interim maintenance stage on September 7th, and started chemotherapy to kickoff the delayed intensification stage yesterday morning at 7:45 am. Here’s where he’s at on his treatment roadmap:

Over the past 2 weeks, Harvey has thoroughly enjoyed his time away from the clinic and hospital playing with his brother and sister at home. The hot afternoons have been prime for water balloons and splashing in the pool, swinging (while being sprayed by sprinklers), and jumping on the trampoline (also with sprinklers on). Although Harvey won’t be able to return to school this year, he did start online pre-k classes on September 6th. Cue obligatory first-day-of-school pictures:

Being active and bruising easily from chemotherapy, people are often taken aback by pictures of Harv’s arms and legs. The treatments have really taken a toll on his body. He continues battling neuropathy in his legs, a direct side effect from the vincristine. He’s not steady on his feet and is having difficulty with fine motor skills, such as holding a crayon. His labs recently revealed that his creatinine levels are still higher than his baseline from March, likely indicative of kidney injury from the 4 high-dose methotrexate treatments. We’re hoping this resolves over time. One of my favorite things to see right now is Harvey’s full head of short, fluffy blonde hair! It will no doubt begin falling out again in the weeks to come (side effect of doxorubicin). Thankfully he’s just as happy being bald as he is with hair! And speaking of happy, he had a stretch of time where his port didn’t need to be accessed which allowed him to take his first bath since March! (He’s otherwise been taking showers.) We’ve had some really great moments these past two weeks.

Hattie & Henry have enjoyed their first month of first grade. They’ve been active, happy, and healthy. Hattie, who is always overflowing with energy, is enrolled in swimming lessons on Sunday mornings and has been asking to also play another sport. She picked hockey. So we now have a hockey player (and a whole bag full of hockey equipment) in our household. She’s currently learning to skate and is getting quite good at it, too! She’s been an amazing big sister and has helped us and Harvey around the house during some pretty chaotic times these past 6 months.

Wow. 6 months. It’s now been half a year (March 18th) since Harvey’s initial cancer diagnosis. It sure feels longer than that as a parent. I can’t imagine what it feels like for Harvey. We are so happy to have spent a few fun, active weeks with our fighter. He’s back on a full regimen of harsh medications, including steroids. It’s been a little over 24 hours since round 4 of treatment started, and we’re already seeing the struggles of a cancer patient return. He’s both restless and exhausted. His wild cravings have returned. Yet, he’s throwing up food faster than he can eat it at the moment. The intramuscular shots of rylaze he’s receiving tend to make him very nauseous. I wish we could make it all go away for him. We stand ready to do whatever possible to make him as comfortable as possible.

We’ll post more updates as we navigate the ups and downs of this delayed intensification stage. This will undoubtedly be one of the more difficult stages for him. He’ll have at least 3 clinic appointments a week for the next month. We aim to keep him healthy and hopefully out of the hospital. We have such enormous gratitude for these past two weeks together as a family and are so thankful for all your love and support. More to come.