Day 100 – June 26, 2022

7:00 pm: 100 days. It’s been 100 days since Harvey’s cancer diagnosis. It feels longer than that. Yet, it also feels like no time at all compared to the road that lies ahead. I’m glancing at Harvey as I type these words. He’s across the room playing with his train set. His cute, bald head, pale skin, bruises, and leg braces all a testament to the reality of his first 100 days. Only the first 100 days… We received 5 pieces of paper a little over a week ago that have the details of Harvey’s cancer treatment for at least the next 200 days. It’s sobering, quite honestly, and casts a shadow over the ground he’s already covered these first 3 months. We’re going to make it. I know deep down we are. Some days it just feels like we aren’t.

I must look sad (crying is the new smiling around here). Harvey just came over and gave me a hug and kiss. As I was trying to find the words to convey how much he’s loved, I pitched my laptop into the couch and rushed to his side. I found him hunched over his puke bucket retching. This poor kid. He’s in the fight of his life. Whoever said being a parent isn’t a spectator sport clearly never had a child with leukemia. He has our never-ending love and support, but it’s devastating not being able to do more. It feels like all we’re able to do is monitor everything in real time. We are so incredibly proud of Harv – he has battled through so much during the past 100 days. I know he has the fight in him needed to overcome this: It really hurts to know that he’ll need it out of necessity.

Harvey has completed the first stage of cancer treatment called induction and has nearly completed the second stage, consolidation. These first two stages comprised the first 100ish days of his treatment. Harvey’s immune system will need to recover, then he will begin the next stage of treatment. So what comes next? Here’s what the 5 pages of treatment entail:

Interim Maintenance 1: This is the next 63-day stage of treatment that will likely cover July and August, possibly even into early September 2022. Harvey will be admitted to the hospital for at least part of this stage. It includes 2 procedures to inject chemotherapy intrathecally (into the space between the layers of tissue which cover the spinal cord), intermittent IV chemotherapy, bone marrow testing, and nearly daily oral chemotherapy. This stage thankfully doesn’t include any steroids or rylaze shots. After this stage is completed and Harvey’s immune system recovers, he then moves on to…

Delayed Intensification (Part 1): A 28-day stage of treatment that will likely take place from September into early October 2022. This stage includes daily steroids (ugh!), intermittent chemotherapy, a procedure to inject chemotherapy intrathecally, and another round of rylaze (8 intramuscular shots). Harvey will also receive an echocardiogram. After this stage is completed and Harvey’s immune system recovers, he then moves on to…

Delayed Intensification (Part 2): A 28-day stage of treatment that will likely take place from late October through November 2022. There are no steroids in this stage – Hallelujah! The first 14 days includes daily oral and IV chemotherapy followed by intermittent chemotherapy for the following 14 days. Another round of rylaze (8 intramuscular shots) and 2 procedures to inject chemotherapy intrathecally will also occur. After this stage is completed and Harvey’s immune system recovers, he then moves on to…

Interim Maintenance 2: A 56-day stage of treatment that will likely begin December 2022 and last into January/February 2023. This stage includes intermittent IV chemotherapy, 2 rounds of rylaze (16 intramuscular shots), and 2 procedures to inject chemotherapy intrathecally. After this stage is completed and Harvey’s immune system recovers, he then moves on to…

Maintenance: An 84-day stage that repeats indefinitely with the first round likely to begin in late winter/early spring of 2023. This stage includes intermittent rounds of steroids, daily oral chemotherapy, intermittent IV chemotherapy, and 2 procedures to inject chemotherapy intrathecally. There are no rylaze intramuscular shots in this stage, thankfully. After this stage is completed and Harvey’s immune system recovers, he then begins the maintenance stage all over again. This will continue over the next year (2023-2024).

It’s overwhelming to see the details of each upcoming stage laid out on a single page. I can’t comprehend or predict the implications this will have for Harvey. I’m really sad. I don’t know why I thought 100 days in would be any easier than the first day. It’s not. Come what may, we are going to do whatever it takes to get our boy his life back. I know this is what a success story in the making looks like. But it’s hard. So very, very hard. For now, he surrenders years of childhood to cancer treatment in return for decades of better times.