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He did a couple and then went back inside. I finished up but left a few small ones for him to plant later tonight. Besides Adler being very fair skinned, the drug he was on really messed with his skin. 100% dermatological side effects. Besides nasty rashes, being in the sun gives him what resembles sun poisoning. At Disney it was really bad. Welted and blistered and it was sore and itchy. Thanks chemo! So. He did what he could and went back inside. He was pretty excited for some flowers!! Thanks Ray Carris for rhe flower boxes. We love them. 💘 💘💘💘

by | Jun 4, 2021 | Updates From the Road

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He said his pain is like a manatee in a tank, you can look at it and it’s always there swimming around but it doesn’t really do anything, it just hurts. He said he’s made a special place for it in his mind. Hence the tank analogy. I both hate and appreciate his acceptance of his pain. He’s been consistently uncomfortable recently. Not much relief but great distractions with his friends helped today. 💙 🅰️⚓🌈

by | Jun 3, 2021 | Updates From the Road

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

Welp. I’m ready for the end of school blessings. It’s always emotional. Always. No matter his attendance, which wasn’t much this year. But. For us it’s different. He made it another year. He’s alive. And he sure did have to fight for it again this year. The pandemic, we got Covid, he had another life saving surgery and was on treatment that kicked his ass so much so we, along with his doctors, chose to stop it. His fatigue and increasing pain…… 5th grade is done today. On to 6th grade. But not before another part of our cancer journey as we head to Nemours Children’s Hospital next week for his pain management program evaluation. Let’s hope all that goes well and as planned and he can start the school year with the necessary skills to manage his pain and kick ass as a 6th grader. Wow. Middle school at Trinity. Wow. The boy who wasn’t supposed to see 5. So so many feels today. 💙💙💙

by | Jun 2, 2021 | Updates From the Road

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