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Adler didn’t make it to school today. We got up. Got ready but his back, neck and shoulder pain was just too much. He got nauseous while he was eating his bagel for breakfast too. He was bummed out that he didn’t feel up to going. I called his oncologist today and he has a telehealth appointment with her next week. I also sent his pain management doctor a message and I am waiting to hear back from her. And he has an appointment with his therapist tomorrow. I did all the things. I called and contacted all the people. I check all the goddamn boxes all the time but the pain remains. I hate it. He hates it. I could go into a big long heartbreaking and heartfelt emotionally rolled out red carpet to the shit show that is cancer but I will just leave it at…….FUCK CANCER. 🖕🖕🖕🖕🖕🖕

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Adler didn’t make it to school today. We got up. Got ready but his back, neck and shoulder pain was just too much. He got nauseous while he was eating his bagel for breakfast too. He was bummed out that he didn’t feel up to going. I called his oncologist today and he has a telehealth appointment with her next week. I also sent his pain management doctor a message and I am waiting to hear back from her. And he has an appointment with his therapist tomorrow. I did all the things. I called and contacted all the people. I check all the goddamn boxes all the time but the pain remains. I hate it. He hates it. I could go into a big long heartbreaking and heartfelt emotionally rolled out red carpet to the shit show that is cancer but I will just leave it at…….FUCK CANCER. 🖕🖕🖕🖕🖕🖕

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Welp. More testing to be done but as of right now there’s no specific signs of arthritis which is good. The positive test of the gene for ankylosing spondylitis doesn’t mean a diagnosis of it. I’m glad she did a thorough exam and some more explaining of it all. He will have an MRI of his pelvis just to be sure there isn’t some inflammation. He will need custom orthotics for his shoes to help with his flat feet and maybe that will help with some of his pain in his lower back and hips. She discussed his hyperbobility (double jointedness) and his tight muscles in his legs as a culprit to his pain as well but, we already knew that. Adler is a complex case for sure. His oncologist said we can’t blame the tumor for everything….um…..I think we can!!! It’s the “mechanics” of Adler and everything he’s been through. Especially with the trauma it has caused his body. The cervical spinal tumor and the cancerous sludge at the base of his spine. (The brain tumors don’t necessarily apply here but yeah, they are still assholes) You can’t expect that to live in there and not cause issues. It’s NOT supposed to be there. So yes it’s caused trauma like an injury. And the fusion as well. Though necessary it’s been traumatic to his spine. And the chemotherapy and it’s long lasting side effects. Again necessary but traumatic. So we will set up the MRI and he will have appointments for the orthotics. Then a follow up the end of December after his 3 month full brain and spine MRI and oncology check up. We’ll be bringing in the new year with all that stuff!! Exhausted to say the least.

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Welp. More testing to be done but as of right now there’s no specific signs of arthritis which is good. The positive test of the gene for ankylosing spondylitis doesn’t mean a diagnosis of it. I’m glad she did a thorough exam and some more explaining of it all. He will have an MRI of his pelvis just to be sure there isn’t some inflammation. He will need custom orthotics for his shoes to help with his flat feet and maybe that will help with some of his pain in his lower back and hips. She discussed his hyperbobility (double jointedness) and his tight muscles in his legs as a culprit to his pain as well but, we already knew that. Adler is a complex case for sure. His oncologist said we can’t blame the tumor for everything….um…..I think we can!!! It’s the “mechanics” of Adler and everything he’s been through. Especially with the trauma it has caused his body. The cervical spinal tumor and the cancerous sludge at the base of his spine. (The brain tumors don’t necessarily apply here but yeah, they are still assholes) You can’t expect that to live in there and not cause issues. It’s NOT supposed to be there. So yes it’s caused trauma like an injury. And the fusion as well. Though necessary it’s been traumatic to his spine. And the chemotherapy and it’s long lasting side effects. Again necessary but traumatic. So we will set up the MRI and he will have appointments for the orthotics. Then a follow up the end of December after his 3 month full brain and spine MRI and oncology check up. We’ll be bringing in the new year with all that stuff!! Exhausted to say the least.

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New doc. Here we go.

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Same room different angle 7 years apart. Both tired. Both not hungry. One during treatment the other 7 months off the second treatment. One with a fentynal patch for pain. The other 5 weeks post pain management program. One with hair. One without. Both with cancer. Inoperable metastasized pilomyxoid astrocytoma brain cancer. To the unknown eye only one will be seen with cancer because it looks obvious. The other “he looks great” is the common theme. Sure. He does. But it’s only a look. It’s only on the outside. The cancer still remains on the inside with no end in sight. Metal and screws added to the mix. PTSD. Depression. Anxiety. All hanging out too. The pain still there everyday. The fatigue plaguing him to the point he feels like a zombie. The side effects of nausea, stomach pain, muscle weakness, headaches and more are still there too. Lasting for who knows how long?? September is Childhood Cancer Awareness Month and though Adler may not look the part of a cancer kid, he is. He sure is. Living with it. Just because he doesn’t look like it doesn’t mean it’s not there.

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Reading The Jungle Book on the way to school today. He has been and was so sore today. His shoulders, neck and back. Let’s hope the rheumatologist can shed some much needed light on this.

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

Reading The Jungle Book on the way to school today. He has been and was so sore today. His shoulders, neck and back. Let’s hope the rheumatologist can shed some much needed light on this.

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