Carson is a five-year-old boy who fights for his best life every day and was a born a true warrior. At 10 months his family was delivered the most devastating news: Carson had brain cancer. The cancer was so aggressive that in four months, it went from absent to completely blocking all spinal fluid flow through the fourth ventricle. The next day Carson had surgery for an external drain to relieve some pressure and his port placed. Two days after diagnosis, he had his tumor removal surgery (they only felt comfortable removing about 50% of it). After a week of recovery in the hospital, we were sent home for about two more weeks of recovery before chemotherapy began. Carson completed 3 three-week induction chemo cycles, which all ended up inpatient for neutropenia. Carson’s stem cells were collected and harvested and then he completed three more rounds of high dose chemotherapy followed by stem cell transplants to help his counts recover. We spent a total of 5 months in the hospital. He was so sick that they had to give him nutrition through IV. During this trying time, we received devastating news that Carson had a genetic mutation that caused many of the issues, including the cancer. This diagnosis of Gorlin’s Syndrome is frightening as it can cause many other health issues and a future full of possible cancers. We need to be very cautious with any radiation exposure and are unsure of what the repercussions are for the next step of Carson’s cancer journey. Two days after Christmas, we traveled to Philadelphia for a second resection (they got it all! and all cells were dead!). We were sent home to recover for two weeks, then we returned to Philadelphia for six weeks of proton radiation. Since then, he is considered stable!
We are finally two years post treatment, but we worry every day. Carson continues to work hard to battle all that life has thrown at him all day, every day. Because his low tone, he has scoliosis and very poor posture. He has high frequency hearing loss in both ears due to side effects from chemo. He has a high palate and doesn’t chew his food, so his diet is very limited. After two tongue-tie clippings, he is making some progress with feeding. He does feeding therapy twice a week. Carson goes to the IU classroom daily, where he participates in school and therapies. He also goes to outpatient therapy three days a week. He crawls to navigate around the home. He is learning to walk with a walker at therapy. He just started using his voice a few months ago, but it is difficult to understand because of the lack of mobility and navigation of his tongue. He also participates in speech therapy. Both his fine and gross motor skills are weak, so he uses adaptive tools in the classroom and participating in OT and PT twice a week.
He just wants to be like other kids – play and participate in activities as they do. He pushes and strives to be the best every minute of every day. He continues to fight to have as much of a normal life as possible.
