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“It’s not until you lose everything that you can truly appreciate everything ” – Belle The Carris Disney shirts!!! Mint, turquoise, poppy and lilac. Adler chosen. The quote and the colors. Thank you Sara Butler, again!! They are perfect!!! And yes, we hope this trip amazing, because it has to be. Cancer is a living nightmare and we are taking that darkness to the sunshine state and to the happiest place on earth. Bring on on magic because we are ready!!!!

by | Apr 8, 2021 | Updates From the Road

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

This was how he helped me pack. He said he was tired. So. He and Boris supervised. He was pretty tired all day. He had a telehealth check in with his oncologist today. Nothing much to report other than she is hopeful for the pain management program at Nemours Children’s Hospital in Orlando. His next MRI is in May. It’s actually on my birthday. The 25th. Then we have the evaluation on June 10th in Orlando. We hope he will be able to start soon after but it’s a rollover process. Gotta wait for a spot to open once another child leaves. Just get us to Disney, that’s what I’m trying to concentrate on, although, it’s hard not worry about everything after. And. We hope he’s feeling up to all the magic headed our way!! Bold As Love!! 💙💙💙💙💙

by | Apr 8, 2021 | Updates From the Road

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

Adler was in excruciating pain here. He’d thrown up so much that day. Gabapentin was making him vomit which hurt his butt, where the pain was, and he had a vicious headache. We had no idea he had hydrocephalus at this time. Or cancer. We still thought he had arachnoiditis. It would get much worse before it got better. To near death. He was declining rapidly at this time and we had no idea why. Tough memories. Soon he would be fainting and soon we would rush him to Chicago with the worst fear coming to life soon. God it’s been one hell of a journey.

by | Apr 5, 2021 | Updates From the Road

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