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He’s made it a whole week at school!!! Normal time. Normal drop off and pick up. But. Not without pain. Not without discomfort. Not without worry, mostly on my part. Even a message to his oncologist. But. It’s Friday and he’s at school!!! Today was a special dress day and in Adler Assemble fashion, he’s in his favorite colors red and blue and a Slinky Dog Dash t-shirt since it was summer vacation destination dress!! He said last night over dinner “I’m so so happy to be there it’s what everything we did was for and I’m there, it’s so great!!!” All said with the hugest smile on his face!!!! Happy Friday!! 🅰️⚓🌈💙

by | Sep 3, 2021 | From The Road

from Life with our little Super Hero Adler Bear https://ift.tt/3tcs46w

September is Childhood Cancer Awareness Month and Hydrocephalus Awareness Month. Adler has both. I remember when September really didn’t have a meaning. September first was the start of a long weekend. Now it signifies the beginning of Adler’s pain. His pain began in September of 2013 which lead to both his cancer and hydrocephalus diagnosis in 2014. But he also finished his treatment in September of 2015 and he began his second round of treatment in September 2019. The pain, the pain of cancer remains. His tumors are inoperable. Adler will never be in remission. And his most recent biopsy left him without the full use of his arms which took over a year to recover from that and regain the use. Unfortunately that surgery then caused him to have kyphosis of his cervical spine and he required yet another surgery. He had spinal fusion and decompression surgery where he wore a neck brace 24/7 for 4 months. And he suffers from other side effects from treatment and chronic pain. Chronic pain that lead us to Nemours Children’s Hospital in Orlando Florida where we relocated to for 40 days so Adler could attend their pain management program that was a month long. He worked his ass off every single day with one goal and that was to get back to school. And he did it. He’s not without pain but he now knows the tools to assist in his own management of it. And a headache is never just a headache for him. Hydrocephalus has no cure. The only way to fix it is brain surgery. Adler has a VP programable shunt to drain the excess water into his abdomen. He’s lucky he has never needed a revision of it as they can malfunction and need repair which can be deadly if not treated quickly and efficiently. So Go Gold for Adler and for all those that have fought and won, fought and lost or are in the fight now! Those kids need you to be their voice!!! 46 children will be diagnosed with cancer today and 7 will die today from cancer. And that’s everyday!!!!!! Show your love and support. Go Gold!!!!!! And Go Blue for hydrocephalus too!!!! 💙🎗️💛

by | Sep 1, 2021 | Updates From the Road

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

by | Sep 1, 2021 | From The Road

from Life with our little Super Hero Adler Bear https://ift.tt/2YbNvZX

by | Sep 1, 2021 | From The Road

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