A reminder of Adler’s story on this last day of May. It’s brain cancer awareness month. Don’t forget tomorrow!!!! This is Adler Bear Carris, our 10 year old son. Adler is battling inoperable metastasized brain cancer and has hydrocephalus and adrenal insufficiency. He was diagnosed at age 4 at Lurie Children’s Hospital after months of severe agonizing and debilitating pain in his buttocks. His mobility was compromised from the pain. He could hardly walk, run or play like a little boy should. It was awful to witness. Devastating. He unfortunately was misdiagnosed and treated with heavy steroids for pain which ended up causing the adrenal insufficiency. The hydrocephalus also went undetected until he was near death with three times the normal amount of water on his brain. His brain was beginning to absorb it. He had emergency shunt surgery and it is now managed with a VP programmable shunt. His brain cancer was diagnosed shortly after the hydrocephalus was addressed and managed. He has pilomyxoid astrocytoma brain cancer. He has several small tumors in his brain, one larger tumor in his spinal column and his lower lumbar spine is thick with the same material as his tumors which is what could possibly have caused all his severe pain. He went through 15 months of weekly chemo treatments. He had two types of chemo each time and now he is considered stable. Adler would go to Lurie Children’s Hospital every three months for MRIs and appointment during that time. Unfortunately, the pain has returned that was nearly gone after treatment and required daily meds twice a day that barely keep it at bay and, basically sitting on his heating pad all day and many late nights as he can’t sleep when it hurt. It’s been suffering with this pain for over 5 years now and with many trips to Lurie Children’s Hospital, they unfortunately told us there was nothing more they could do for his chronic pain so we had to look elsewhere. I was relentless trying to find somewhere to get him to and I did. Nemour’s Children’s Hospital in Orlando had a pain management program that we were going to take him to until his MRI last June did infact show that the tumor in his cervical spine had grown. It had been slowly growing for nearly two years. They were keeping an eye on it but it was time to do something as the pain was an indicator of the necessary to treat him. Adler had a very invasive and risky biopsy on the tumor that unfortunately left him without the full use of his arms. He’s been in rigorous physical occupational therapy since. He’s regained most of his right arm and some of his left but his hands and motor function of his hands and arms is hindered. It was yet another blow to us all especially him during this journey. Cancer has taken so much from him. The tumor was tested for a specific mutation called a BRAF mutation in which he could be enrolled in a trial study taking a drug that targets the tumor. He is now on that treatment. He will be on it for 26 months. With that we go to Lurie Children’s Hospital in Chicago every month. So far so good. The pain is better but his neck may require more surgery in the future. The battle is never over. His life has been debilitated by pain, by cancer yet he has a lust for life and is a rainbow where ever he goes. He brings love and light and his personality is electric!! His laugh is contagious and his heart as big as the sky. He never gave up and he has fought so hard and he still does. Smiling through the pain. He is as we call him after his theme song Bold As Love!!! (By Jimi Hendrix). His fight isn’t over and we cherish all the good times and try to remain as positive as we can. He loves his iPad, video games, music and dancing!!!! He loves​ YouTube and superheros!!! He could challenge the great Stan Lee on his super hero knowledge and he loves movies and his dog Boris. And he’s my best friend in life, his words as a three year old. Adler is his own superhero!! He’s the amazing Adler Bear!!!! Living with cancer is hard and it hurts but this kid, our son, is a warrior!!!

by | May 31, 2020 | From The Road

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

by | May 30, 2020 | From The Road

from Life with our little Super Hero Adler Bear https://ift.tt/36KBTx6

by | May 30, 2020 | From The Road

from Life with our little Super Hero Adler Bear https://ift.tt/2Xdm5zS

by | May 30, 2020 | From The Road

from Life with our little Super Hero Adler Bear https://ift.tt/3c9Mcw0
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