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He’s been in pain most of the day and last night was pretty bad. He was so uncomfortable and we didn’t go to bed until nearly 2am. His pain is changing and increasing and due to that I called his new oncologist. I spoke to the nurse and explained everything and said he needed to be seen. She was going to reach out to the team and call me back. The nurse practitioner called me back this evening and Adler will be evaluated by Dr. Waanders this Tuesday. I already like her since she’s taking this seriously. I will explain this all to his pain doc here too since we liked him as well. Man we have a busy week next week. Appointments for him and for me all week. Goodness. Gotta get feeling better for Disney!!!!

by | Mar 18, 2021 | Updates From the Road

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

So many things and feels about this picture sent to me by his teacher. I was holding coats and stuff so I’m glad he got one. And to most people/parents it’s “normal” for their kid or a kid to be participating in gym class type activities. Not so much for Adler. 1. He’s using his arms. Remember he couldn’t uses them after his biopsy surgery in 2019 and it took over a year for him to regain them??!! 2. His pain and fatigue was minimal enough to be able to attend last night’s fun at his school. It’s literally one day at a time for him. 3. He’s in a mask because that’s how it goes now. But during flu season, I would have made him wear one anyway. A fun disposable one because pre pandemic they didn’t have cool ones. And be dousing him with hand sanitizer before there were stations all over. 4. He walked walked into the gym. And all over the school. And even did and obstacle course a few times!!! Many many many times, uncountable times, his pain hindered or even prevented him from walking around. Not running or jumping or playing for him when he hurt so much. NOW, with that being said, he did have a late night with pain After all the fun but I am sure he thought it was worth it!!!! 5. He doesn’t look sick here. Right here cancer isn’t on his mind. Unfortunately, it’s always on mine but he just wanted to have fun. And he did. He’s not his disease. But unfortunately it does take the fun out of his life, more so than not. Normal kid stuff was stolen long ago. So last night was more special to us than to most. And we’ll take it!!!! And we take absolutely NONE of it for granted. Thanks for a great time Trinity Lutheran School!! Adler needed it!!!!

by | Mar 17, 2021 | Updates From the Road

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

Game night at Trinity. He felt good enough to go. Let’s hope he feels good tomorrow too!!! And. I think we found a good one in Dr. Landrum at Cutting Edge Integrative Pain Centers: Orlando Landrum, MD We saw him today. And for the first visit, I was very impressed!!!! Adler and I both liked him. We’ll see how it goes!!! Cutting Edge Integrative Pain Centers: Orlando Landrum, MD

by | Mar 17, 2021 | Updates From the Road

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

These late nights are daunting to say the least. I feel for him. His pain ramped up over the weekend and then kind of subsided today but here we are up late again with him on the heating pad. He told me last night he was worried. Worried his tumor was already growing since he’s off treatment. The pain has always been a tell tale sign that there’s growth so why wouldn’t he worry?? Why wouldn’t I worry?? And I am. I don’t think the worry ever goes away. Ever. Especially when you come home with no treatment, pain management left up to me after they disappointedly couldn’t help Adler again and the watch and wait portion of this cancer journey truly sucks. It’s rather terrifying actually. He does have an appointment with a local pain doc tomorrow and I do hope he’s got some ideas for my boy who’s suffering. I’m not sure how long I can just let this go on??? Calls will be made as his new oncologist needs to know what’s happening with him. The wait and the weight continue……..

by | Mar 16, 2021 | Updates From the Road

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