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This afternoon and into the evening he had pain in his legs. He’s determined to go to school tomorrow and to go on the field trip Friday. It’s outdoor education. Hiking and walking. He’ll do it too. In pain. And I will be with him. Just in case. A special case as parents aren’t supposed to go because of Covid. Do you know how badly I wish I didn’t have to?? That my worries and his teachers worry about him didn’t “matter”. But that’s not the case. No. It isn’t. And I’ll walk and hike with him because that’s what I do. My fat outta shape ass stuck on the couch in my own hell with my own health issues will do it with him. Damn right I will. Because I am his witness. In the thick bullshit of it all, I am his witness. No victims here. But damn those virtual hugs sure would be nice in person.

by | May 20, 2021 | Updates From the Road

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I woke him for online school today. He asked me to get him up instead of using his alarm. So. I set mine to make sure I was up in time because we were up until almost 1 am again with his pain. He came into the family room around 10:30 last night. I could tell in his walking that he was hurting. I had already given him meds for his shoulder pain. He paced around a bit and was talking with me about random things. That pacing and chatting lasted for well over an hour. Then he finally sat down with me and the conversation continued. No TV on. Just he and I talking. About allllll kinds of stuff. But in that all kinds of stuff were a few things that had quite a bit of depth not just distraction chit chat. We discussed his pain and what it’s evolved into. From the beginning to now. From the buttock pain then, when it came back and how it’s now the leg pain that the buttock pain changed to 3 years ago that plagues him still. We talked about how it feels. This is how he described it. “It’s like a weight. A heaviness that hangs off me. Like it pulls and rips and constricts. It just hurts” and as he said it he was making a twisting motion with his hands. He said “it’s a binding, heavy pain, which makes it hard to walk. I notice my walking now. I have to focus on it to make it work. And it’s every day now. Every single night it hurts like this ” And that’s what we talked about in the middle of YouTube, TikTok, movies and school chat. So. He’s really tired today. He got pretty nauseous this morning too after he got done with his online check in. We rescheduled an appointment for him today too. Next week is his MRI and oncology check up. As his pain increases and moves around him and nausea pops up, the worry builds but is so oddly familiar it’s damn near comforting because I’m so used to it and that’s fucked up. His effort to just BE on a daily basis is exhausting. School is all he wants but it’s hard with the pain and fatigue. To be 11 and as close to a kid as he can be is all he wants. But cancer has stolen so much of that from him. Joy is sought out and appreciated in a way that’s unexplainable as we sit with pain, depression, long lasting side effects sprinkled with anger because of cancer. And we sit with it every day. Yet we are thankful for these days amongst the sadness and grief. Navigating them as best as we can. Who knew living would be so fucking hard???

by | May 19, 2021 | Updates From the Road

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7 years ago today we took him to Lurie Children’s Hospital through the ER. We were told to do so or he would die. We gave him morphine before we left and it didn’t touch the pain. I took this video. I watched in desperation many times before this time. Many nights and days void with ease as he would pace and cry and scream and beg me to make it stop. He said it was like lightning hitting his buttocks. Like he was being punched 500 times be said. It. Was. Awful. And he had been suffering for months with it. I felt the video was necessary to show the truth. To show I wasn’t crazy. To show how awful it truly was. I got ridiculed for it. But even more I got supported for it. Soon. We would know why…..kind of. We would have a team of docs backing us up and taking care of him. Not just me searching relentlessly for help. Soon he would be in that 2.5 hour MRI and the results would not only change our lives forever but save his. Save his life with emergency shunt surgery and find the tumors in his brain and spine. Soon treatment would being along with pain management of heavy narcotics. Fear would sit with us as we waited for those results. And it has never left. Anger and sadness would grow inside me like it’s own tumor. 7 years. 7 years later here I am sitting up with him with esophageal spasms for me that are wicked painful and him with pain in his legs. The pain changed but still remains. For us all. 7 years since the beginning of our walk through hell. A living nightmare. This one is always hard.

by | May 17, 2021 | Updates From the Road

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

It’s not a big deal to most but to us it is. Adler wanted to go outside tonight for a bit. He didn’t go to school today because he had a lot of pain last night and this morning. He was tired from it so he and I decided rest was best so he went back to bed. He woke up just after 11am with a headache and more leg pain. So he took some meds and and we hung out. That was our day. He did get to play some Rocket League tonight on a live stream for the Pediatric Brain Tumor Foundation which was cool!!!! So about 8pm he wanted to go outside and walk around. Gladly, we did. His legs hurt but he wanted to play with a ball and the dog. There was a time he couldn’t even do that. He’s missed out on so much for so long that you damn betcha we’ll kick a ball around if he wants.

by | May 13, 2021 | Updates From the Road

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