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We have come full circle. Adler saw his new physical therapist today…..who evaluated him 7 years ago. He was 4 years old and in agony with buttock pain. His episodes of pain were so excruciating at times that he would be soaked in sweat and tears. He would vomit and fall to the floor. It was awful. He was misdiagnosed with arachnoiditis and began heavy steroids for pain and a couple other drugs that didn’t help at all and made him sick. He began physical therapy also. Here. And that bike. He rode the hell outta that little blue bike. We couldn’t believe they still has it!!! Now. He stands 5’5″ tall at 11 years old and here we go again. I’m not sure how to feel about it all. I’m happy to have her on our side again but it’s also so heartbreaking to see where we started and know at the root of it all was and is cancer. The good and the bad. The beautiful and the ugly. The love and hate. The appreciation and the why’s. Finding grace in the dark. Man, it’s a lot sometimes. I knew nothing then. And now I know too much. It’s about balance……in the balance room as it’s now called. Go figure!!!! ☯️🅰️💙🌈⚓

by | Feb 9, 2021 | Updates From the Road

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

There is beauty in every day. Even in the eye of the storm that is our life. Once again faced with fear filled uncertainty that smells and tastes just like 7 years ago and 3 years ago. Just. Look. It’s there. Beauty. Adler went to school today. Without his neck brace. Today is the last 7 hour day. Tomorrow starts 8 hours for 3 days and he can sleep without it. Then, he’s out of it for good. Another giant hurdle passed for him in the name of Adler living with and kicking cancer’s ass!!!!! He pushed for today. Pain kept us up late again but he wanted to go. And he’s there with no complaining. He simply wants to be there more than anything. More than pain and discomfort. Tomorrow may be different but hey, today is ok!!! He’s at his wonderful school with his friends and the amazing staff that not only gives him comfort but me as well!!!! I am truly thankful for that!!! He has his evaluation with a new physical therapist today too. Well, new but old. She evaluated him when he was 4. Pre proper cancer diagnosis. So. We’ll see!!! Onward. That’s what’s up!!!!

by | Feb 9, 2021 | Updates From the Road

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

Seriously. We are so tired. Especially Adler. Another late night with him and me bearing witness to his discomfort. It was after 1am when he said after well over and hour of pushing his leg down on the heating pad “Mom, I’m just so tired”. And he is. From treatment. From entirely too many late nights. From fighting for his life. I leaning over and touched him and did my best to reassure and comfort him. Me asking where do you hurt is on repeat and has been for so long now that the pain scale is irrelevant and he describes it in such a way that oddly impresses doctors and therapists and saddens me because he’s a pain pro. I cried putting him to bed as we adjusted the heating pad to where he needed it. I cried because I hate it for him. I cried because I can’t do anything other than what I do and have done for him to be supportive. I cried because my son is in pain and has been for so long now that it has become routine. I cried because I’m tired and fell asleep with him on the couch for like 7 minutes. He said I was breathing heavily and it wasn’t even 10 minutes but I still felt bad because I am his comfort. I will be calling tomorrow about the pain clinic making sure they remembered. I’d call today if I could but it’s Sunday. Which I actually forgot yesterday it was Saturday because most days all just feel the same. They have for years now. Those who are suffering from pandemic depression I am sorry you know what it feels like because caregivers like me who have been isolated due to their child’s pain and misery from their disease…..we’ve been knowing ALL about that for a long time now. Too long. But. You just keep going. He just keeps going. No choice in the matter. New treatment, new doctors, new therapies, and no finish line. Man was he bummed when he thought of changing treatment and does that mean he doesn’t get to ring the end of treatment bell?? He’s never gotten to do that. It’s the little things. So. If we get a break we’re taking a break in Disney World because he deserves it. We had it planned for Christmas last year and then pushed to Christmas this year but with all things considered, I think we will go when we can, if we can. Pain and all. He needs some happy. I want to witness that. Smiles and some joy. So unbelievably necessary.

by | Feb 7, 2021 | Updates From the Road

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