Day 216 – October 20, 2022

7:20 pm: It’s been an entire month since our last update: 30 days of ups and downs throughout the first round of Harvey’s delayed intensification stage of treatment. The oral steroids (dexamethasone) have been brutal. Harvey has been ravenous all hours of the day and night. Third lunches. Midnight feasts. No amount of food made our boy feel full. He gained 6 pounds over 3 days and is up 8 pounds total over the past 30 days. Most of his weight gain is attributed to fluid retention which is causing his skin to be stretched uncomfortably tight. His blood pressure has been very high at times (140s over 90s) and we’ve been working to keep it lowered. Thankfully, he’s remained at home and healthy, although extremely immunocompromised. His ANC (immune system) is currently as close to nil as it’s been since he started chemotherapy back in March. He has been very low energy, often taking frequent naps throughout the day. We “annoy him” with our reminders to move around and get exercise. Harv endured 8 more shots of rylaze (24 more to go) and we’re elated to report that his care team did a great job coming up with a new concoction of medications to keep his nausea symptoms minimized. He did it! He made it through the first stage of delayed intensification. As soon as his immune system and body recover, he’ll begin the second stage of delayed intensification which is scheduled to begin on Monday, October 24^th.

After a few months of blonde hairdos, we (again) said goodbye to Harvey’s newfound head of hair on October 12^th. He received 3 doses of doxorubicin this past month which, on October 10^th, caused his hair to start falling out. By the 12^th, he told us to shave it off. After our trimmer had covered every inch of the top, back, and sides of his scalp, he had a proud smile on his face and not a hair on his head. The next day, we watched a timeless episode of Peanuts called “Why, Charlie Brown, Why?” from 1990. Harvey watched intently and emotionally as Janice got her leukemia diagnosis in nearly the same way he did earlier this year. I’ll forever cherish this moment with Harv.

Out of the many difficult moments this past month, one in particular haunts us. We learned that his cancer treatments will not only continue through 2024, but well into 2025. Harvey will be nearly 8 years old when he’s finally finished with chemotherapy, assuming all goes to plan. And I honestly can’t bring myself to type the words that convey what “not according to plan” could mean. I hate this hell that he’s so bravely navigating. Our tearful words of love and concern for him are met with a reply of “I’ll never ever give up!” I still can’t fathom why a 4-year-old should ever have to face any of this. It’s robbery of innocent childhood. We’re no less heartbroken now than we were at diagnosis. Yet we’re so thankful for the accomplishments and progress he’s made.

Today, we’re just 10 days away from our warrior’s 5^th birthday. October 30^th will have a very different feel and meaning this year, but will continue to be Harvey centric with treats, presents, games, laughs, and love at home. Because we’ve been asked to by loving friends and family (and full disclosure: I did not want to), we created a Target birthday wish list of Harvey-picked items. (Link) Our boy has received so much love in so many different forms from everyone, there’s simply no way we could ask for anything more. Nothing is expected and we share this only out of respect for those asking for information about what Harvey likes. (You’ll notice there is no clothing on the list as we wait for his weight to stabilize.) He’s also looking forward to Halloween, and we plan to take him trick-or-treating (albeit a bit modified for his safety) if he’s feeling up to it. *fingers crossed*

Thank you so very much for thinking of and checking in on Harvey & our family as we enter month 7 of this journey. Your love & support has meant everything to us! We’ll have more frequent updates as we head into the next stage of treatment with new types of chemotherapy (but hopefully not new symptoms).