Day 75 – June 1, 2022

9:00 pm: Here we are on the eve of the next round of consolidation chemotherapy. On Tuesday, Harvey’s labs were drawn and the results show his immune system, while still very weak, is strong enough to continue the next round of aggressive treatment. This next round begins tomorrow morning at 10 am, is 4 weeks in length, and will end with another bone marrow biopsy to determine if Harvey is in remission. Please, please let him be in remission. Nothing else seems important right now. We’re anxious to begin treatment, but are also thankful for the break he’s had over the past 2 weeks. It’s amazing how full of life he is when not full of poison, yet so sad and disheartening to see the damage that has already been done by chemotherapy. Today, Harvey had an appointment to get measured for AFOs (leg braces) to help compensate for the muscle deterioration in his legs, ankles, and feet. The braces are custom created with a design of his choosing: A blue colored train pattern. We’ll need to get him new shoes that will fit his AFOs. He’ll have new kicks and a whole new look from the knees down in a few weeks.

Harvey selecting a color and pattern for his AFOs.

We were excited to share with Harvey that he’ll have one wish granted by the Make-A-Wish foundation! We explained that this is his very own wish, gave him example wishes that have been granted to other brave kids (without trying to influence his decision), and gave him the task of thinking about ideas for his wish. With a smile on his face, he’s been randomly reminding us that he has his very own wish and that he has “some big decisions to make!” 🙂 We’re so excited to see what he comes up with and so very grateful for this opportunity. ❤️

With so much care needed for Harvey, it’s been a challenge balancing our time and energy equally with Hattie and Henry, too. This has been so hard on them. Henry has been acting out a lot in ways that we’ve never seen before. Hattie has had many disappointments, knowing that many of our spring/summer plans won’t be happening. We’re making any adjustments we can to keep them active, happy, and busy. Next week on Monday, we’ll have a surprise for them in the backyard. Clue: It’s the shape and color of a trampoline. 😉 Hattie lost another baby tooth this week and had her first tick plucked off her this morning. Henry received a new iPad with a better warranty after smashing the screen of his previous. Lesson learned.

We’re gearing up for a busy month of appointments and chemotherapy, so expect regular updates from us. Thank you so much for all your love and support! We’re living one day at a time, flying by the seat of our pants, and making it up as we go. From my perspective, it’s very apparent!

Sunshine + Playground = Happiness
Spending their iPad time together.
Henry not impressed with the food service around here. ⭐☆☆☆☆ 1 star review -Would not recommend.
The tooth fairy made another visit to our home.

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