Day 45 – May 2, 2022

11:30 pm: Happy May! Today marks the first full week of Harvey’s consolidation stage of cancer treatment. Each day has started to feel more monotonous than the next: Scheduled medications, personal care, appointments, and cold/rainy weather. We’ve been mindful of trying to introduce new activities, games, and ways to stay active to keep this all (somewhat) exciting for Harvey. But the biggest change we’ve encountered is the decrease in his energy level. Long daytime naps have found their way into his routine which has cut into our time playing trains and Uno. We’ve discovered both Harvey and Hattie have an absolute love for the card game Uno (and I have the losing streak to prove it!). Joy is happily watching my 4 year old acknowledge the last card in my possession, then immediately slap down a +4 card to ensure that I don’t win the game. This is one of the many things that has made the monotony of it all tolerable.

Our daily logs of Harvey’s medications and activity. He pooped today! 🙂

Tomorrow morning, Harvey will return to the clinic to receive his next dose of chemotherapy intrathecally (injection into his spine). He has quite an extensive list of medications. We were able to get one of his most needed medications, ruxolitinib, through an active research study. This means that our (lack of) insurance coverage isn’t an issue and he has all the medications needed for this round of treatment. We are eager to get his blood drawn tomorrow to see how he’s holding up to all the chemotherapy in his system. It’s likely he’ll need more blood transfusions in the near future. The first week of consolidation has been wonderfully boring! (Boring is actually exciting during cancer treatment!)

One of the more excited noises I’ve heard from Harvey came yesterday while he looked outside the window into the backyard. “Dad! Look!! Why is that squirrel white?” I did a real-life double take. “I don’t know! I’ve never seen one. It may be an albino squirrel?” I replied. We then spent some time on Google learning about different types of white squirrels, all of which are fairly rare (although not so much in the twin cities metro) and are considered to be a “harbinger of good luck and many open doors.” I’ll take it! In true internet research fashion, I closed my laptop and applauded my findings without studying their credibility. 🙂

We believe this is a gray squirrel with a gene mutation that makes the coat white.

Harvey continues to amaze us with his resilience, patience, grasp of reality, and ability to cope with the barriers put up by his leukemia. I’m so proud to hear his personal explanation of the situation with his opinion from experience baked in, yet incredibly sad that my sweet little boy has to use the word cancer to explain why he can’t go to school or play with friends. Yet, difficult times define us and shape the future versions of ourselves. I write this tonight so grateful that these times will eventually become history for Harvey and will shape the way he sees our world. He has a true appreciation of his amazing health care team and a deeper understanding of the work his mom does for a living. Some 30 years down the road, part of his story detailing how he arrived where he’s at will include the distant memories of overcoming childhood leukemia. And that’s amazingly powerful. Wonderful. Impactful. This doesn’t intend to underestimate the hardships right in front of us, but to serve as a reminder that we have so much to be thankful for.

We are thankful for you. We couldn’t manage this without you. With a mountain of thank-yous to ready on our side, we want you to know how much you mean to us. Your thoughts, love, and support that you’ve shown us is overwhelmingly inspiring. It’s one of the things that invokes tears for me when talking about it, or even thinking about it. We truly wake up some days not knowing how we’ll feel or what we’ll need, but somehow everything falls into place as we’re surrounded by the love of amazing people from our neighbors and co-workers to our friends and family hundreds, if not thousands, of miles away. It’s been such a powerful experience, even if unwanted, to be on the receiving side of a support system, and I’ve learned so, so much. Even though it’s nearly impossible to share with you the impact you’ve made on us in the moment it happens, we are looking forward to telling you all about it in the future!

I’ll post timely updates tomorrow after Harvey’s morning procedure. Thank you so much for checking in with us!

Hattie & the hotdog eating champ showing off new shirts (Thanks Kate, Jenn, & Friedle family!)
Not sure if Harvey was just opened or is about to be mailed.
These two missed each other: Hattie & Harvey happy to be reunited.
Backyard bubbles on a cool, windy day.

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