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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.

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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!!!!!

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

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!!!!!

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Through out this journey I have peered in on him while he sleeps. Through his door at home standing stoic with tears in my eyes in the hallway. Quietly from beside him in hotels before we had the condo or from my own bed when he’s slept with me. Appreciating his peace, his breathing, his soft face not wincing in pain, his growing body so weak craving this sleep but because of pain he doesn’t often get. Rest is coveted in the cancer life. The body and mind so weary and drained. Life lost even though we are living as it’s passed us by, especially him. Stolen by pain caused by his cancer. A few more minutes and I will wake him for some breakfast before his appointment. A PTSD induced routine we are all accustomed to but never used to. Accepted with no choice. A freedom from pain and disease begged for in reality but only achieved in slumber.

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

Through out this journey I have peered in on him while he sleeps. Through his door at home standing stoic with tears in my eyes in the hallway. Quietly from beside him in hotels before we had the condo or from my own bed when he’s slept with me. Appreciating his peace, his breathing, his soft face not wincing in pain, his growing body so weak craving this sleep but because of pain he doesn’t often get. Rest is coveted in the cancer life. The body and mind so weary and drained. Life lost even though we are living as it’s passed us by, especially him. Stolen by pain caused by his cancer. A few more minutes and I will wake him for some breakfast before his appointment. A PTSD induced routine we are all accustomed to but never used to. Accepted with no choice. A freedom from pain and disease begged for in reality but only achieved in slumber.

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

Wellllll……as soon as he feels better……. we’ll head out. Poor kid. Damn pain. Very interested to see what the new oncologist has to say tomorrow. 😞😞😞😞

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