After finishing up treatment, Colin went home to recover and resume the life of a little boy. That first year, in 2010, Colin started special education pre-K and then Head Start. He received therapy at school and much-needed interaction with other children.
Colin started using a gait trainer, which is like a walker but can also provide support for people who are unsteady and may fall or are unable to support their own weight. It allowed him to gain strength and endurance safely and have at least some independence.
In April, 2011, we permanently removed Colin’s trach and closed the old trach site surgically in August. Immediately after this, he passed a swallow study and was given the green light to eat and drink again! This was the most exciting milestone for him and the whole family. The next step, literally, was to begin walking independently, and he was ready to walk on his own to see Santa.
In August, 2012, we moved back to Ithaca, NY, where he started in the mainstream kindergarten classroom with the continued support of therapists and an aide in the classroom. Colin improved steadily through his years at Northeast Elementary, gradually shedding the gait trainer and learning how to climb the spiderweb climber in the playground.
During this time, we lived as if Colin were cured but always knew that this could change with one MRI. Settling into normal life looks different under these circumstances but gratitude is a worthy counterbalance to the stress.
We focused on supporting Colin’s recovery and improvements and also wanted him to have as normal a life as possible. We could never tell what the limit of his physical improvement was and we also had to grapple with cognitive differences that are common among children who have had radiation therapy. On top of this, the combination of chemo and radiation caused a rapid degradation of hearing in his left ear (he was already deaf in the right ear from the first surgery).
Colin started first grade with nominal reading skills and atypical reasons for the delay. By the end of the year, with a lot of hard work and many flash cards, he had nearly reached grade level and was a competent reader. His handwriting was slow, measured, and careful. Persistent weakness on the right forced him to use his left hand.
As Colin worked his way through elementary school, it was clear that it took a tremendous amount of effort for him to just make it through a normal day. However, he loved school and his friends there.
Throughout this time, we continued to participate in St. Jude fundraisers and Colin was the star at many galas. He was often the life of the party and he loved supporting the hospital. It was an incredible opportunity for us all to give back to the hospital, which continued to support Colin.
We also started going to Camp Sunshine in Casco, Maine, a family camp that has sessions for children with cancer diagnoses (they also support certain rare diseases and organ transplant patients). Unlike many other camps, Camp Sunshine is for the entire family, including siblings. Children are grouped according to age, so siblings and patients are interspersed among the campers. Caregivers can attend group sessions if they want and participate in competitions and the talent show. We developed many lasting friendships from our time at camp and are grateful for a place that makes kids with differences feel very much at home and loved.
At a winter session at Camp Sunshine, we spent an afternoon skiing and Colin was able to participate in the adaptive program using the monoski. This experience opened our eyes to the world of adaptive sports and encouraged us to join the adaptive program back at Greek Peak, in Ithaca. Colin’s dad, Ian, started instructing with the program and has never looked back.
Ironically enough, Colin learned to ski mostly in our backyard but did enter the program when he had gotten a little stronger. Eventually, he was able to ski on the magic carpet independently. He wasn’t a passionate skier, but he was proud of the accomplishment and he truly enjoyed the social aspect of the sport with his buddy Charles.
There is no doubt that Colin was on the upswing. At the same time, we started to wonder what his trajectory would be and what adolescence and adulthood would look like for him. We had every hope that he was cured until we got unexpected news at a routine scan when he was in third grade and our primary focus again shifted.
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