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from Life with our little Super Hero Adler Bear https://ift.tt/3fWv4h6

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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 11 year old son. Adler is battling inoperable metastasized brain cancer and has hydrocephalus and has chronic pain. 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 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 after a lower lumbar biopsy shortly after the hydrocephalus was addressed and managed. He has pilomyxoid astrocytoma brain cancer. He has two spots that house several small tumors in his brain, one larger tumor in his cervical spinal 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 returned that was nearly gone after treatment and required daily meds twice a day that barely kept it at bay and, basically sitting on his heating pad all day and many late nights as he couldn’t sleep when it hurt. He’s been suffering with this pain for over 7 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 that 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 did rigorous physical occupational therapy to regain the use of his arms. It took over a year and still has some minor issues with his hands and strength in his arms. 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 was enrolled in a trial study taking a drug that targets the tumor. With that we went to Lurie Children’s Hospital in Chicago every month. He was on the drug for just over a year when we decided along with his doctors to stop treatment. It wasn’t working as they had hoped. During that time of treatment and after his cervical spinal biopsy, while he was regaining the use of his arms, Adler developed kyphosis. Kyphosis is where your neck begins to curve the wrong way. It got to a critical point and surgery was required. Adler had spinal fusion and decompression surgery last October. He was in a neck brace 24/7 for 4 months. The surgery was a success but now hinders keeping an eye on his tumor as it’s hard to see on the MRIs. Also. The pain in his legs has not let up and unfortunately has increased. Again Lurie Children’s Hospital was unable to aide in such chronic pain so again we will be heading to Nemours Children’s Hospital in Orlando Florida for an evaluation for their pain management program. It’s a 5 day a week month long program and we truly hope this will help Adler and get him more comfortable. Quality of life is where we are now. 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!!!

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

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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 11 year old son. Adler is battling inoperable metastasized brain cancer and has hydrocephalus and has chronic pain. 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 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 after a lower lumbar biopsy shortly after the hydrocephalus was addressed and managed. He has pilomyxoid astrocytoma brain cancer. He has two spots that house several small tumors in his brain, one larger tumor in his cervical spinal 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 returned that was nearly gone after treatment and required daily meds twice a day that barely kept it at bay and, basically sitting on his heating pad all day and many late nights as he couldn’t sleep when it hurt. He’s been suffering with this pain for over 7 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 that 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 did rigorous physical occupational therapy to regain the use of his arms. It took over a year and still has some minor issues with his hands and strength in his arms. 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 was enrolled in a trial study taking a drug that targets the tumor. With that we went to Lurie Children’s Hospital in Chicago every month. He was on the drug for just over a year when we decided along with his doctors to stop treatment. It wasn’t working as they had hoped. During that time of treatment and after his cervical spinal biopsy, while he was regaining the use of his arms, Adler developed kyphosis. Kyphosis is where your neck begins to curve the wrong way. It got to a critical point and surgery was required. Adler had spinal fusion and decompression surgery last October. He was in a neck brace 24/7 for 4 months. The surgery was a success but now hinders keeping an eye on his tumor as it’s hard to see on the MRIs. Also. The pain in his legs has not let up and unfortunately has increased. Again Lurie Children’s Hospital was unable to aide in such chronic pain so again we will be heading to Nemours Children’s Hospital in Orlando Florida for an evaluation for their pain management program. It’s a 5 day a week month long program and we truly hope this will help Adler and get him more comfortable. Quality of life is where we are now. 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!!!

from Life with our little Super Hero Adler Bear https://ift.tt/3p5aAa9

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

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from Life with our little Super Hero Adler Bear https://ift.tt/3wP5ba1

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Unexpected good news!! Stable!!!! Another MRI in 3 months. Focus on the pain management program and getting Adler comfortable. His doc does expect it to grow eventually. It’s the nature of these types of tumors. It’s what they do. It’s now scan by scan. A wait and see. And keep an eye on the increased pain. So. Florida is next for the evaluation in June. If insurance approves it quickly and no one takes one of 2 spots he can go July 12th. Next spot open after that is August 9th. We are all hoping for July. The program is 5 days a week for 4 weeks. This will be one hell of an adventure for us. A very necessary piece in this cancer puzzle. Stable is good yes. Especially since if he needed to begin treatment now or soon, on top of the pain management program, it would be very hard to manage both and unknown side effects and how his body would react would be difficult especially from afar. So. We will take this as good alignment of the stars and run with it as long as we can!!

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

read more

Unexpected good news!! Stable!!!! Another MRI in 3 months. Focus on the pain management program and getting Adler comfortable. His doc does expect it to grow eventually. It’s the nature of these types of tumors. It’s what they do. It’s now scan by scan. A wait and see. And keep an eye on the increased pain. So. Florida is next for the evaluation in June. If insurance approves it quickly and no one takes one of 2 spots he can go July 12th. Next spot open after that is August 9th. We are all hoping for July. The program is 5 days a week for 4 weeks. This will be one hell of an adventure for us. A very necessary piece in this cancer puzzle. Stable is good yes. Especially since if he needed to begin treatment now or soon, on top of the pain management program, it would be very hard to manage both and unknown side effects and how his body would react would be difficult especially from afar. So. We will take this as good alignment of the stars and run with it as long as we can!!

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

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