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Kyle had been sick off-and-on for about a month, beginning in early February 2021. Headaches and nausea would come and go. One day he’d be totally fine and the next he couldn’t go to work or school. Several visits to his pediatrician and a few COVID tests later, we decided it was time for him to have an MRI. The soonest we were able to get him scheduled for an MRI was late March.
Ironically, Kyle also had a routine eye appointment scheduled for March 11th where the ophthalmologist noticed he had a slight elevation in both of his optic nerves, and they would want to see him back in a month to reevaluate. At that point they didn’t see it as an emergency. The next morning, he got sick again and his vision was blurry, and he was seeing double. We called our pediatrician again and she immediately told us to take him to the ER.
On March 12th, 2021 we took Kyle to the emergency room at Golisano Children's Hospital in Rochester, NY, thinking we would leave with migraine medicine. Within a few hours we were given the devastating news that Kyle had a malignant non-germinomatous germ cell tumor on his pineal gland in his brain and would need surgery to relieve the pressure. This is a kid who has never been sick or had to be in the hospital for any reason prior. This day was something no child or parent should have to go through.
Things moved very quickly from this point forward. Kyle had a shunt placed on March 15 to relieve the pressure put on his brain and on March 22nd he had a port placed in his chest and began chemotherapy that same day. His treatment will involve 6 cycles of chemotherapy taking us into late summer followed by radiation. His twice weekly labs show that he is responding well to the treatment and we are optimistic for a full cure and recovery. The doctors and nurses at Golisano Children’s Hospital are truly angels on earth and they save lives every day. The caring staff and support teams are equally incredible, and we know we are in good hands.
Kyle has played hockey since he was three years old and hasn’t missed a season. He loves being part of a team and his strongest friendships are with his hockey teammates. His position of left wing for the Rochester Junior Amerks was short this year due to COVID and his diagnosis, but he still felt like part of the team even when he couldn’t be there. He also began working out regularly at our local gym and became a stronger, more confident player.
When Kyle started to get sick, he still tried to go to the gym, but eventually had to put these visits on pause and workout from home. During our stays at the hospital, he would say how much he’d like a gym to work out in. He wanted a place to go to exercise and release the insane amount of stress that had built up over the past several weeks. Kyle thought parents and caregivers of children who were receiving treatment at Golisano would also benefit from a gym facility and so it became his mission to develop a fund raiser to help build one. With the support of hospital administration, board members, friends, and family, “Kyle’s Slap Shot Challenge” was born.
Kyle completed all treatment and the MRI scans are looking good. The radiation is still doing it's job and we're still very optimistic that'll he'll be completely cured. He started back to in-person school this week and has been enjoying time with friends, skiing and being a teenager again. Kyle will be attending Nazareth College in the Fall! There are so many exciting things on the horizon for him and he has so much to be proud of. He's such an amazing kid!
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