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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 | From The Road

from Life with our little Super Hero Adler Bear https://ift.tt/3enF3wQ

Well. We said goodbye to Dr. Goldman today. He’s been a great doctor and was a wonderful asset to Lurie Children’s Hospital and he will be greatly missed!! That part aside, Adler has stopped treatment. Not because he’s done with the 26 month trial but because it wasn’t successful. It’s disappointing and we felt very odd leaving with out pills or a concrete plan of the next time treatment. He will be closely monitored with definite concern from Dr. Goldman while on this “break” with MRI’s every other month and under the care of his new doctor, who we also met today, and we liked her. She was ready to be tagged in today! And, I will watching him too and any changes I will definitely be in touch with his team. It’s a watch and wait process now. Which is hard to even digest at this moment. Another time where the sightlines shift a little. Focus and direction changes make things look a little different. Again. We spent nearly 2 hours with the palliative care team discussing his pain and the chronic pain team will reach out to us soon to aide in his continued care. They will work with us on a pain management plan as well. The focus here is quality of life. On or off treatment we just want him comfortable and to resemble some form of a “normal” 11 year old boy. He just happens to have cancer and chronic pain, one caused by the other. And there is no magic pill as they said to fix or cure his cancer or his pain. That has been made unfortunately clear on this trial. There are options for the future and that was also made clear for both treatment and pain management which we will hold on to, tightly as we go ahead. However long this “break” is we are going to try our hardest to enjoy life and continue to surround him with even more love and light as we just keep going……keep going always!!! Bold As Love and yes, FUCK CANCER!!!!!! 🅰️🌈⚓💙☯️

by | Mar 3, 2021 | Updates From the Road

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

by | Mar 3, 2021 | From The Road

from Life with our little Super Hero Adler Bear https://ift.tt/3e7AAOw
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