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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.

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

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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.

from Life with our little Super Hero Adler Bear https://ift.tt/39Uvkvm

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Welp. We tried to go to school. We drove all the way there even. But the nausea got worse on the way and he was lightheaded and kinda dizzy. So after a sad deliberation in the car, we came back home. He’s missed the whole week and was looking forward to cozy comfy day thanks to his classmates winning it at the auction last year. So, we’re here. Hanging on the couch and I am keeping an eye on him. Poor kid. 😔

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

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

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

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from Life with our little Super Hero Adler Bear https://ift.tt/3oPLt9p

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Well. Why not make this post on World Cancer Day?? After this month, Adler will stop the trial. Adler’s oncologist who is unfortunately leaving Lurie Children’s Hospital, doesn’t feel it’s working as it should anymore. There are other targeted therapy drugs to try but needless to say we are pretty devastated to know this one didn’t and we are concerned about Adler’s future with treatment. Adler’s pain and increased side effect symptoms are what’s lead to this decision and to worry about possible tumor growth. Pain management and physical therapy for Adler are necessary so that’s the next step. He will be enrolled in the pain clinic at Lurie Children’s Hospital and he will be evaluated here for new-ish physical therapy and he will most likely be evaluated by the head of pediatric physical therapy at the Shirley Ryan Ability Lab in Chicago as well. Then after his next months MRI we’ll most likely stop this med especially if there’s been new growth and begin another targeted therapy drug. There’s lots of factors here but he listened to all of our concerns yesterday and we have a the basics of a plan. A new plan of which we will know more about the direction of said plan in a month. There will also be new oncologists in place for Adler’s continued care at Lurie Children’s Hospital. We are all upset about this. This trial gave us hope and now it’s not working as it was told to us that it would. He had the biopsy that he lost his arms for this trial drug to see if he qualifed. Regaining the use of his arms was unbelievably hard and daunting for him. He then had to have fusion and decompression surgery because of the biopsy surgery. We are disheartened from all of this. We are scared too. We feel like we’ve gone in circles and not in a good way. And along the way, so much pain. And was it necessary?? We don’t know because we had to try. We are thankful there are other options but the longer we are on this journey hope begins to thin. You can’t help but lose some of that along the way. Not all is lost but we do feel pretty lost ourselves today. So. We ask for your prayers, good vibes, love and light and continued support as we venture into unknown but sadly known territory again with Adler. It’s about quality of life and living not just existing with cancer for him. And to continue to hope that the next treatment works as it should to stop, slow and decrease his tumors. He said “I don’t care if I have nausea, diarrhea, my hair falls out and rashes, I just don’t want pain”. So that’s the goal, no more pain. The reality of cancer is very very real today. And on this cold winter day things again, look and feel a little different.

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