Day 20 – April 7, 2022

10:30 pm: I will never forget March 25, 2021. We lived in Rochester, MN. 8:00 pm. I had just put Hattie to bed, and I was now in Harvey’s bedroom reading him a bedtime story. We heard what sounded like fireworks. I paused reading mid-sentence. Forget the bedtime story! Down the stairs we went and outside to the backyard. We were greeted by an ongoing fireworks show up the hill from us!

This wasn’t just any fireworks display. This was a part of a bigger celebration: March 25th, 2021 was Nathan Herber’s day! Nathan was, at the time, a 6-year-old neighbor boy who had just completed his last cancer treatment. This alone made that moment so incredibly special and meaningful. He was diagnosed with non-Hodgkin lymphoma at the age of 4. Some 900 days after Nathan’s diagnosis, Harvey and I stood side-by-side on our backyard deck witnessing a huge milestone for him and his family. I never would’ve imagined, in that moment, that just a year later my heart would long for the day that we can do the very same thing for Harvey. I would give anything to be past this and celebrating Harvey Goldade’s day. You’re an inspiration, Nathan & Herber family.

Visit Nathan Herber’s CaringBridge site and watch his story that aired on ABC News.

As I reflect on the difficulties of the past 20 days, I can’t ignore my awareness that Harvey likely has at least 900 more. I don’t truly believe I’ve accepted or comprehend this yet. I’m aware of it, yes. But reading the words I’m typing somehow takes my thoughts that feel imaginary, like a bad dream, and makes this entire situation real. Everything has changed. I will forever cherish the moment in time that Harvey and I shared together late evening of March, 25th, 2021.

Day 20 was certainly more emotional and frustrating for Harvey as he’s realizing the physical limitations his body is imposing on him. He’s not steady on his feet. Not able to jump. Not able to run. Told that he needs help doing things that are simple, even trivial, for a 4 year old boy. Yet, they’re not so simple now. He knows this. It’s disheartening to watch. Reminding him that he needs our help getting out of bed and walking across the room brings him irately to tears.

Tonight is the first night he is disconnected from all IV lines. He is free to tumble and turn as much as he wants in bed without fear of waking up hog-tied in medical tubing. After the nurses removed his port-a-cath connection, he looked down and studied his marks and incision site. We talked through everything he was seeing and feeling, both physically and emotionally. We also started the switch over to oral medications this evening in preparation for taking them at home. He’s not a big fan of the new medicine routine, but can be persuaded into hesitant compliance. …with a snack. 🙂

Tomorrow will bring the next round of chemotherapy into his veins. I plead for this to work. Please let this induction therapy shut down the source of the issue in his bone marrow. I’ve done too much research and know that only 30-40% of pediatric cases with his diagnosis have the induction therapy outcome I’m longing for. I again force myself to remember that I need to take this a day at a time. I know this. I promise I do. But I can’t stop thinking ahead to Harvey’s celebration in the future. I wonder what kind of fireworks he’ll want?

12:00 pm: Harvey had an active morning. He was just wrapping up physical therapy as I arrived back on the floor for my lunch break from work. He’s still very weak with reduced energy, so we’ll be focused on getting him involved in as many short, but frequent activities as possible. He became frustrated after tripping/falling during a jumping activity saying, “I told you I couldn’t do that!” His awareness of the physical weakness caused from cancer treatments is evident. He also recognizes that his treatments are causing the side effects he’s experiencing, such as another emesis this morning. Yesterday, he told the “cancer in his tummy to stop making him sick so he can eat!” We’re just grateful he continues to have an appetite. Speaking of appetite, his macaroni and cheese lunch is on its way.

We’re enjoying his energy today. It will no doubt disappear again after tomorrow’s chemotherapy treatment. I’m heading back to work hoping that both Lindsey and Harvey will sneak in a nap and some more fun activities. More to come this evening. Thanks for checking in!

9:00 am: Good morning! Harvey had an amazing night of sleep. His care team didn’t have to wake him for infusions of sugary drinks. Harv’s glucose was at 60 this morning, the lowest allowed value to be considered normal. We continue to trend up! We just returned from our first walk of the day. He is (im)patiently awaiting his breakfast of pancakes, eggs, and juice. While we wait, he’s in comedian mode. Here’s one of his finest jokes this morning: