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These late nights are daunting to say the least. I feel for him. His pain ramped up over the weekend and then kind of subsided today but here we are up late again with him on the heating pad. He told me last night he was worried. Worried his tumor was already growing since he’s off treatment. The pain has always been a tell tale sign that there’s growth so why wouldn’t he worry?? Why wouldn’t I worry?? And I am. I don’t think the worry ever goes away. Ever. Especially when you come home with no treatment, pain management left up to me after they disappointedly couldn’t help Adler again and the watch and wait portion of this cancer journey truly sucks. It’s rather terrifying actually. He does have an appointment with a local pain doc tomorrow and I do hope he’s got some ideas for my boy who’s suffering. I’m not sure how long I can just let this go on??? Calls will be made as his new oncologist needs to know what’s happening with him. The wait and the weight continue……..

by | Mar 16, 2021 | From The Road

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by | Mar 11, 2021 | From The Road

from Life with our little Super Hero Adler Bear https://ift.tt/3qGp7Ix

by | Mar 11, 2021 | From The Road

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A week off treatment today. He had pain last night. A lot. And the fatigue has not let up. So. We watched Disney videos on YouTube together while he sat alternating legs on the heating pad. Boris sat with us and we tried our best to distract our minds. But the pain remained and he wanted to sleep with me. He got some guys and his pillow and we watched some Chopped in bed until 1am. I didn’t fall asleep until after 3am thanks to period insomnia. Girls know what I’m saying. And when I woke after 8am, I turned and saw him laying there. I listened to him breathing in appreciation and wanted to cuddle him but I didn’t want to wake him. So. I stared at him for a bit. Took the picture and thought about how much his poor body has been through. And for how long. Fighting to stay alive. Living with pain. Missing his friends and feeling so lonely lately. Both of us tethered together in this life of pain. The tears will come today I’m sure as the exhaustion is ever present. I have things in place. Things locally. Things at Lurie and things at Nemours Children’s Hospital in Orlando. I don’t know if the stars will align or not but I’ve done my best and I just hope we can maintain and keep the faith in this new oncologist we’ll see in June after his MRI and in the meantime maintain here with physical therapy and maybe a local pain doc and if it all works, get him to the pain management program in Orlando. The one we were going to go to two years ago. It’s all set, here and there, but can all change. That’s how cancer works. I just had to have a plan. Just keep me where the light is and keep my cool and my sanity and as always Bold As Love and FUCK CANCER!!!!!!!! 🅰️⚓☯️🌈💙

by | Mar 10, 2021 | Updates From the Road

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