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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!!!!

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

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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!!!!

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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!!!!

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

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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!!!!

from Life with our little Super Hero Adler Bear https://ift.tt/30QX7rd

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