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“Now Back” That’s what he wrote on his new white board!! Give him Disney for his happy place but school……school is truly his happiest place. It had been since preschool. He absolutely couldn’t wait to go. And then kindergarten, well, that was such a big deal because it was all day everyday. He was ecstatic. But chemo days and pain limited his time there. First grade was his only “normal” year. It wasn’t without a few hospital stays, his routine MRI’s and an ambulance run but for the most part, about as normal as WE could get. Second grad started out pretty normal. Then the pain returned and full days turned into half days and missed days and many pick ups due to pain so I pulled him out towards the end of the year. Always with the want to participate, he attended the special days and things if he could. Third grade went about the same. Half days and missed days and most days with pain. Never without pain. Then. Then. Tumor growth recognized, biopsy and loss of his arms. That was into 4th grade and he began treatment then as well. The trial began in September of 2019 just about 2 months aftet the biopsy. So. Focus was on his arms. School missed a lot because of it. Then the pandemic hit. Everyone got sidelined then. 5th grade was supposed to be his year. His comeback……but……cancer changed that too. Pain, fatigue and another neck surgery, and more pain caused him to miss out again. I pulled him in March. He needed a break. We thought time for his body to regain his strength since we stopped treatment. That’s unfortunately not what happened. The pain increased and we’re trying to get it managed now. So. Why now?? Why even go back for a few weeks?? Because why not?? He’s desperate for interaction. He misses it so much. He has barely had a taste of fifth grade. He’s barely had much time there at all in the last 3 years. So. Today he began again. With pain. No treatment plan in place. No neck brace. In a mask with social distancing still. Me crying as I walked to my car. Just a lil bit of something good. Let him feel that. Let him be a kid. Let him play outside today aftet lunch. Let him feel that. Let him be Adler Carris at school not at home on the heating pad. Let me not mess up car line since I’ve done it once since Covid. Let us both feel good. Just good. Not spectacular. Just good. Let us breathe. Just breathe a lil bit of something else. He’s at school. He’s at school.

by | May 4, 2021 | Updates From the Road

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

“I think it’s getting worse” Adler “You think what is worse?” I ask. “My pain.” As he’s pacing the room late last night. I ask why he thinks that and we discuss it. No matter the answer, no matter the why behind his explanation we both know why. We both know the cause. And we both hate it. Soon after the meds that he took that he said didn’t help much and the compound pain cream that he said he thinks needs to be heightened (I’m calling about that today) dulled it just enough he asked if he could sleep with me. I said of course and I knew right then he needed that extra comfort just to fall asleep. He’ll begin school again tomorrow, if he’s up to it. They had a make up day today from last week so tomorrow it is. We hope. Pain has taken so much from him. Too much. And many days like today I wonder if I have done everything I can to give just a little back to him that cancer and pain have stolen. The depression has drown me many times but yet I have somehow adapted and learned how to breathe underwater. That doesn’t mean it’s easy or healthy or even settling. My mind is never settled. Ever. The down holds hands with the up and anxiety/panic are the downs best friend. It has taken a tole on us that is immeasurable and often indescribable but trudge on we do. We have to. And hope is all we have. I will make all my calls today and try to remember to eat and to rest and to breathe and to drink my water and to appreciate and to be present in the suck. A lil day dreaming in there too!! That’s necessary. A survival technique of sorts. So as I embrace the suck today I will think of his precious breathing that I listened to this morning as he rolled over. I hugged Big Monkey good morning and told him to sleep more, that I was getting up and I’d see him in a bit. A morning in the life of us. The Elizabeth and Adler show brought to you by inoperable metastasized pilomyxoid astrocytoma brain cancer. Cheers to Monday, may you be so lucky to only complain about that!!!!

by | May 3, 2021 | Updates From the Road

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

Today I put stuff back in his backpack to take back to school. He is going to try to finish out the year at least. He’ll definitely have some catching up to do because he’s missed so much. In the past 3 years he’s missed so much school. Too much. From pain. It’s all been from pain. Do you know how many times we have thought that he’d go back, that he’d be able to make it one day and then he can’t because he hurts or was too tired??? Or. Or. He went and I had to pick him up because he hurt. Half days. Ever other day. We’ve tried everything just to keep him there anyway we could. Just like we’ve tried our best to keep him alive and comfortable. Most people don’t like to talk about that part but it is in fact part of it. The “it” that is cancer. Most kids can’t wait for summer. Most parents too so they can have a break from their responsibilities with their kid’s school. Not us. Not here. We just want a tiny taste of the one year….ONE year…..that was pretty normal. He misses it. So much. I miss it for him. And this isn’t Covid, this is cancer. All fucking cancer. Hoping he can enjoy what little time is left of this year. ❣❣❣❣

by | May 2, 2021 | Updates From the Road

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