He will be 12 in 3 days. He wasn’t suppose to see age 5. He’s been through treatment twice for inoperable metastasized brain cancer. Living through it with both brain and spinal tumors along with hydrocephalus. A cervical spinal biopsy that caused him to lose the use of his arms for well over a year needing vigorous rehab to get them back. It took over a year for him to be able to just put a shirt on. Spinal fusion and decompression surgery because he developed kyphosis in his cervical spine and it became dangerous and life threatening. He’s suffered in chronic pain for 8 years in his lower back, buttocks and legs. He could barely walk let alone run, jump or play at times because of the pain. Often needing a wheelchair if there was a lot of walking involved. The pain in his neck and shoulders has also increased over the years preventing him from activities. He spent a full month in a daily pain management program learning how to manage and live with chronic pain. That was just this past summer. *️⃣But look at him. Look at this miracle of a child here. *️⃣ He did the high ropes course at Bair Lake today on his middle school field trip. As he climbed the ladder and was able to do just that, the tears came. I couldn’t help it. All he’s overcome. All he’s been through. He is truly amazing. Proud doesn’t even describe how I felt. Honored to witness his pure strength and determination coming through in this activity that he was ABLE to do today. So amazing. So awesome. Adler Bear Carris. Our son.

by | Oct 1, 2021 | Updates From the Road

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

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. 🖕🖕🖕🖕🖕🖕

by | Sep 27, 2021 | Updates From the Road

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

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.

by | Sep 24, 2021 | Updates From the Road

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