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Cleaning up the kitchen like any normal Mom would after getting her son a snack and then I see this. No big deal right?? Music playing. The screen door allowing the winds of spring to blow in, appreciating the sunshine……and then I see this. These three drink containers I bought special for him because for those few weeks he actually got to attend school post op and post Covid, he needed something that didn’t leak and that he could open. His hands don’t work like they used to. You know, after losing the use of his arms and all. So I got these for him. And here they sit now. Dusty and waiting. So much fucking waiting. On calls back, on test results, on appointment times, on someone to get it that he’s absolutely miserable and needs help…..again, on the tumor to grow because it will not on treatment…… and all this was uninvited. People say they can’t imagine, but you can, just take 20 seconds and close your eyes and think what it would be like to be sitting in a room with a doctor who says your child has cancer. Imagine holding them while they cry from it, puke from it, shit themselves from it, have rashes and mouth sores and lose their hair that’s in clumps in your own hands because they were so little they didn’t shower by themselves yet so you washed their hair still. Slathering creams on his rash and blister covered skin. Putting gloves on for the pills he swallowed but I couldn’t touch twice a day being reminded each time why I was giving them to him. And that was from the treatment to save them. Save their life. Their life!!! Just imagine that!!! He was barely alive before diagnosis at 4 and the pain at 3!!!! Imagine staying up nights with them doing everything in your existence to ease their ever present pain because that’s how the monster showed himself, through pain. Agonizing pain. Pain for nearly 8 years!!!!! And the research never seems so stop. Ever. Constantly looking for something to help him. And now. Now it’s ripped a gaping hole in your heart, family and life that can’t be fixed with a fucking walk in the sunshine because that hurts his legs. There’s no catching up on sleep because every night is interrupted by my own unsettled mind. And all the while he’s laying in his recliner in the other room covered in a blanket he got for Christmas that he opened while wearing his neck brace from a spinal fusion that happened from kyphosis from the biopsy surgery that he lost the use of his arms and worked his ass off to regain all for the purpose of finding out if he tested positive for the BRAF mutation to qualify for the trial that he’s not on anymore because it didn’t work how they had hoped, so yeah, we smiled as he was able to open the gifts. God, It’s all SO fucked up. A daily emotional rollercoaster cocktail shaken up just by seeing three drink containers resting on the windowsill. Damn. If I could just lick normal to get a taste I probably wouldn’t even remember the flavor but, I bet it’s delicious.

by | Mar 30, 2021 | Updates From the Road

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Another after 1am late night with pain. He went from room to room. Needing to “walk it out”. Me reminded of all the times he’s paced in pain. Sadness and anger and exhaustion setting in as I could see the pain in his walking and him just wishing for it to subside so we could go to bed. We saw the pain doc yesterday and left with a few options from him and an appointment in a month. His oncologist also called last night with a specific question about the trial drug we stopped and since I had her on the phone, we discussed the options of which only one of the four she was “ok” with. Sooooo…… I’ll keep on the search. No rest for the weary. And today I have an upper endoscopy this afternoon. The joys of stress. So in the quiet of the morning with only the hum of the heat and the birds who sang for the sun still happy outside, I sit with a Disney blanket and my ever running thoughts. Maybe that medically induced nap this afternoon won’t be so bad.

by | Mar 25, 2021 | Updates From the Road

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His evaluation with the new oncologist went pretty good!!!! She’s no nonsense, direct and is getting involved in his care in a way that I appreciated very much. Took me a minute to adjust to that but, she will be getting in touch with the local pain doc, his general practitioner and calling Nemours Children’s Hospital about the pain management program that we have the evaluation set up in June. She wants to be involved and make sure everyone is on the same page and she wants to make sure everything is in Adler’s best benefit. That’s what I appreciated. It’s something kind of foreign to me and I wasn’t sure how to take it at first but realized it was a good thing. I’ve had to do SO much on my own for him that for her to step in and step up was a bit shocking. All in a good way though!!!! But my control freak side was like ummmmm, hang on, I got this. But again, it’s all for the good of Adler and I like that!!! A lot!!!! Now there’s no magic pills or anything and she made that clear and we knew that. Been down that road already. She’s all for alternative treatment and learning ways for Adler do deal with and live with his unfortunately unique to him due to his cancer chronic pain. So those avenues will be looked at. Some already known and possibly revisited. Along with her kind of being the hub for all of it between docs and hospitals. His next MRI will be in May and once that’s tucked away, if all is good, we can focus on that appointment in June at Nemours in Orlando and getting that piece all situated. Mannnnnn. Disney is in 20 days. And do we ever need that magic!!!!!

by | Mar 23, 2021 | Updates From the Road

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