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Adler Bear Carris is 11 years old battling inoperable pilomyxoid astrocytoma metastasized brain cancer. He has been battling since he was 4 years old.
He also has hydrocephalus and he suffers with daily chronic pain as well.
This never ending journey had been going for 7 years now.
The most recent part of our journey:
Adler had a biopsy of his cervical spine to test for a specific mutation that would allow him to participate in a trail at Lurie Children's Hospital in 2019. He tested positive for the mutation but unfortunately the 5+ hour surgery caused him to lose the use of his arms. He spent the next year and a half in rehabilitation to regain the use of his arms again. During that time Adler began the 26 month daily oral treatment under the care of his team in Chicago. We went monthly for med pick up and labs. He also had frequent MRI's to monitor his tumors along with echocardiograms to monitor his heart while on the trial drug. The constant back and forth was grueling and taxing on us all. Another unfortunate issue after the biopsy surgery was that Adler developed kyphosis in his cervical spine. It was curving the wrong way. It became critical as it was compressing his spinal cord so spinal fusion and decompression surgery was necessary. Adler had that surgery in October of 2020 and was in a neck brace 24/7 for over 3 months. He is now out of the neck brace and doing well post op.
But.
He also has hydrocephalus and he suffers with daily chronic pain as well.
This never ending journey had been going for 7 years now.
The most recent part of our journey:
Adler had a biopsy of his cervical spine to test for a specific mutation that would allow him to participate in a trail at Lurie Children's Hospital in 2019. He tested positive for the mutation but unfortunately the 5+ hour surgery caused him to lose the use of his arms. He spent the next year and a half in rehabilitation to regain the use of his arms again. During that time Adler began the 26 month daily oral treatment under the care of his team in Chicago. We went monthly for med pick up and labs. He also had frequent MRI's to monitor his tumors along with echocardiograms to monitor his heart while on the trial drug. The constant back and forth was grueling and taxing on us all. Another unfortunate issue after the biopsy surgery was that Adler developed kyphosis in his cervical spine. It was curving the wrong way. It became critical as it was compressing his spinal cord so spinal fusion and decompression surgery was necessary. Adler had that surgery in October of 2020 and was in a neck brace 24/7 for over 3 months. He is now out of the neck brace and doing well post op.
But.
They feel like the treatment that he went through all of this for isn't working as they had hoped. His pain has increased and his all over quality of life isn't great. There are still options but they are beginning to thin. A new oncologist is coming on as his is leaving and palliative care is being brought on board for pain. Hope and faith and love are what we are holding onto now.
The current plan for his pain is to get him to Nemours Children's Hospital in Orlando Florida for their pain management program. We attempted this exact process 2 years ago but since his tumor had grown and he needed the biopsy, we didn't go.
It's a month long program and we'll need to live there for the 4-5 weeks. It's necessary to retrain his brain with the help of doctors, physical therapists, occupational therapists and pain psychologists to aide in his learning to live with chronic pain. It's the best thing for him with this specialized care. Now to get him there!!!
The current plan for his pain is to get him to Nemours Children's Hospital in Orlando Florida for their pain management program. We attempted this exact process 2 years ago but since his tumor had grown and he needed the biopsy, we didn't go.
It's a month long program and we'll need to live there for the 4-5 weeks. It's necessary to retrain his brain with the help of doctors, physical therapists, occupational therapists and pain psychologists to aide in his learning to live with chronic pain. It's the best thing for him with this specialized care. Now to get him there!!!
His strength is endless and his love and light are contagious but this journey has been long, taxing and just absolutely exhausting. Physically, emotionally and financially. The travel to and from Chicago is still repetitive and never ending so it seems.
During this time of uncertainty we look for joy in the good times we can have as a family. We revel in the good and appreciate the life he has. As we have always looked for the light and the joy even in his short lived stability. There is a finish line....we hope.....it's just hard to see.
Then it's as we say, Bold As Love, and we'll do all we can to give Adler wonderful memories and beautiful experiences along the way so his quality of life is as full as it can be!!
We appreciate the continued love and support. Thank you.
fb.com/adlerbear
During this time of uncertainty we look for joy in the good times we can have as a family. We revel in the good and appreciate the life he has. As we have always looked for the light and the joy even in his short lived stability. There is a finish line....we hope.....it's just hard to see.
Then it's as we say, Bold As Love, and we'll do all we can to give Adler wonderful memories and beautiful experiences along the way so his quality of life is as full as it can be!!
We appreciate the continued love and support. Thank you.
fb.com/adlerbear
Organizer
Elizabeth Carris
Organizer
Elkhart, IN
