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Day 15. One more week. We are exhausted. Home sick for sure. I have hives. Adler has a rash. Aaron’s “fine”. We’re staying in a place with one couch. No chairs but the table and chairs. Idk many families let alone humans that could do that for a month. That’s my best example of the close proximity we’ve been in. Only by ourselves to use the bathroom or shower. Living in a space that’s meant for a vacation not to live in for 30+ days. But. I have done my best to make it a temporary home. I did go to the store alone 2 times though!!! I knew this would be hard. Especially for Adler who’s doing the work. Kicking ass at it. But man are we tired. Planning for the take home and hoping our lil Disney trip at the end is a safe and fun one. We are in a Covid red state. The mind is a beautiful and terrible thing to be stuck in and also to examine whilst way out of your comfort zone. So. Here we are on day 15 of his program and day 21 of being in Florida. 11 more until we head back home. His pain is better. It’s being managed by his actions and by the team of experts here. It’s all worth it. Nothing in this cancer life is or has been easy but we’re living it, HE’S living it, and that’s a statement in itself!!!

by | Jul 30, 2021 | Updates From the Road

from Life with our little Super Hero Adler Bear https://ift.tt/3aDpcoP

Last night after dinner. A headache and some leg pain tonight but he wanted to see the fireworks after our dinner. I hugged him a bunch again during the fireworks. Disney and it’s music have been such a part of our lives. Singing him songs to sleep as a baby and then bringing the magic home after his Make A Wish only to get hooked and go again and again and again……and as many times as we can because it makes HIM happy. And us too. Countless movies watched over and over again are the most fun too when the songs come on from our favorites!!! Yes we are here for pain management and he’s getting stronger and we, especially him, are focused and motivated to do whatever it takes to get the most out of being here for why we are here. But damn it all we’re gonna throw some fun in and gather all the pixie dust and magical moments that we can because he absolutely deserves it. Every bit of it. 💙💙💙💙

by | Jul 29, 2021 | Updates From the Road

from Life with our little Super Hero Adler Bear https://ift.tt/3aDpcoP
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