Tyler's Ordeal: A Year Long Battle with Cancer - A Story of Courage and Resilience
SKIING
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Our family was skiing at Stratton Mountain, Vermont, when I heard a blood-curdling scream. Turning around, I saw our son Tyler lying on the snow in agony. I found a member of the ski patrol, and a team quickly arrived and rushed Tyler to the mountain’s clinic, which was fortunately well-equipped and staffed with an orthopedic doctor. While anxiously waiting, I noticed the doctor place an X-ray on the light panel, cross himself, and motion for me to come over. My heart sank as I saw the X-ray—it revealed a mass on Tyler’s knee, at the point where his leg had snapped. The doctor told us it needed to be biopsied immediately, and we left the mountain with Tyler in a full leg cast.
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Tyler's future was uncertain
BIOPSY
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The year was 1995, before cell phones and high speed internet. We lived in the Catskills and chose SUNY Upstate Medical Hospital in Syracuse for his treatment. Dr. Timothy Damron performed the biopsy through a port on the side of the cast, which confirmed that Tyler had Ewing's sarcoma—a rare and aggressive form of cancer. To treat the cancer, Tyler’s knee and a portion of his leg bone had to be removed, leaving only a 3-inch stump to support a heavy prosthetic leg.
Dr. Damron explained the surgical options: a cadaver bone implant, a metal implant, a Van Ness rotationplasty, or complete amputation. The rotationplasty involved removing the cancerous knee joint, rotating the lower leg 180 degrees, and using the ankle joint to function as a knee. My wife and I were hesitant—it sounded extreme and disfiguring. ​
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The following year was a whirlwind of hospitals, surgeons, oncologists, prostheticians, and countless medical procedures.
Tyler being goofy while waiting for something to happen
RESEARCH
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Determined to make the best decision, we researched extensively, consulted doctors, and spoke with patients. Each option had complications. Bone grafts required a closely matched donor and carried risks of rejection. Metal implants, not well-developed in 1995, would necessitate multiple surgeries as Tyler grew and carried the risk of infection. Rotationplasty, while more functional than the other methods, came with its own risks, such as tissue necrosis or possible fracture, and the final appearance was difficult to accept.
The surgery scared all of us. We found strength in each other to help us through the tough times.
A NOT SO GOOD VISIT
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During our research, we visited a young patient who had undergone a rotationplasty at another hospital. Unfortunately, his surgery had complications, leaving visible necrotic tissue at the surgical site. On the drive home, Tyler began to cry, pleading, “Daddy, please don’t do that to my leg.” Heartbroken, we decided to pursue the cadaver bone implant instead and scheduled surgery with a leading orthopedic surgeon at Boston Children’s Hospital. However, on the morning of the surgery, the doctor informed us that no donor bone matched Tyler’s size. Devastated, we immediately called Dr. Damron, who reassured us that the rotationplasty was still an option. He scheduled the surgery for two weeks later.​
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Lots of boredom
SUCCESS!
The morning after the operation, Dr. Damron came into Tyler’s room and asked him to wiggle his big toe. Despite being groggy and under pain medication, Tyler immediately wiggled it—a small but powerful moment that gave us hope.
Back at home. The bump on Ty's chest is an injection port for IV chemo that had been inserted by Tyler's oncology doctor. Tyler might have been watching Scooby-Doo or his favorite show, "Teenage Mutant Ninja Turtles," which he affectionately called "Teenage Nujent Midget Turtles."
CHEMO
Tyler now faced a year of chemotherapy. The treatment was administered in weeklong segments every third week, during which he was hooked up to an IV drip. My wife and I took turns staying with him around the clock, sleeping in a recliner next to his bed. The room was small and shared with another child undergoing treatment. Often, there were two adults and two children in the room, with barely enough space for the two beds and recliners.
COATI
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Tyler's favorite stuffed animal was a coatimundi he named "Coati." Coati was by Tyler's side throughout the entire year of treatment, except for one heartbreaking period when she went missing at the hospital during a round of chemotherapy.
We searched desperately in the hospital room and hallways but couldn’t find her. After exhausting every option, Tyler had to go home without Coati. Determined to replace the beloved companion, we scoured stores and called toy retailers like FAO Schwarz and Toys "R" Us, only to discover that no one had even heard of a coatimundi.
Weeks later, during another chemo session at the same hospital, my wife stopped by the hospital gift shop. To her astonishment, sitting on the shelf was another coatimundi—an exact match for the one we thought was gone forever.
Tyler showed incredible courage, putting on a brave face after undergoing the remarkable rotationplasty surgery.
Tyler was faced with a lifetime of frequent trips to prosthetists. We struggled to find one that was familiar with crafting a prosthesis suited to Tyler's unique surgical needs. The first prosthetist asked my wife and me for our opinions, but we suggested he consult Tyler instead. Tyler was not impressed with the first temporary leg, and we were equally unimpressed with the prosthetist.
Tyler learning to walk again with his new prosthesis
Tyler struck this pose in my photo studio entirely unprompted
The next prosthetist for Ty's second leg was much more attentive to his preferences. Tyler was pleased with this new leg, which featured a camouflage pattern he had requested and included a carbon fiber "flex foot" for improved functionality.
Grandparents were an important part of the healing process.
Grandma could be relied upon to provide relief from the drama.
THE ICE CREAM RUN
Raymond Seyforth was the founder, President, and CEO of The Motorcycle Ice Cream Run for Kid’s Sake. For 18 years, he worked tirelessly to raise funds for local hospitals and children facing life-threatening illnesses. As part of his efforts, Raymond organized a special Ice Cream Run dedicated to Tyler. The event drew over 100 bikers from across the Catskills, led by a New York State Highway Patrol car with Tyler proudly riding in the front seat.
The ride began in our small hometown, winding through several towns across the Catskills. Along the way, it attracted large crowds and featured raffles and fundraising events in each location. The event culminated back in our hometown, where Raymond tallied the proceeds and presented Tyler with a check for $3,600.
MAKE A WISH
That same year, Tyler participated in several other unique experiences. The Make-A-Wish Foundation generously granted our family an all-expenses-paid trip to Disney World. During our stay, we were treated to a VIP apartment on the property and escorted to the front of every line, making the trip truly magical.
After Tyler’s chemotherapy was completed and his surgery had healed, we embarked on another adventure to Colorado. There, Tyler had the remarkable opportunity to ski with the U.S. Paralympic Alpine Ski Team.
HOLE IN THE WALL GANG
Tyler was also invited to attend Paul Newman’s Hole in the Wall Gang Camp in Connecticut. The camp provided him with the chance to connect with other children in a supportive environment.
THE PRESENT
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Today, Tyler is 37 years old, cancer-free, and thriving. He’s happily married, and they both have successful careers. They are able to work remotely and recently moved back to the Catskills after 10 years in Brooklyn. He’s told us he doesn’t experience phantom limb pain, though he occasionally gets an itch that’s hard to reach. When wearing long pants, his walk looks almost normal—only a slight difference in his step hints at the surgery. Looking back, we’re deeply grateful for Dr. Damron's advice and our final decision, as it gave Tyler the mobility and quality of life he enjoys today.
POSTSCRIPT
It has been 30 years since these events occurred. I have spent a great deal of time reflecting on those times and everything that has happened since. So many questions remain: did my wife and I make the right decisions? Did our final decision leave our son wishing it had been different? Do we all carry varying degrees of PTSD from the cancer and subsequent surgery? Is Tyler as well off as anyone could be, given the long odds that we all faced?
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I still harbor feelings of guilt and will likely never know if what I did, what we did as a family, was the best thing for our son. I live in North Carolina, and my son is in upstate New York, so face-to-face conversations are rare. I hope that when we are together in the future, we can talk about these questions that continue to weigh on me. The year of the cancer was the hardest year I have ever endured, and no doubt it was for Tyler as well. One could assume that the entire family, including our daughter, who was three at the time, was altered forever by the events of that year. What kind of pain did our daughter suffer with the family so focused on her brother? Tyler lost his childhood during that year. He survived, but he became a different person on the other side of the trauma—reserved and more serious. Looking back, the cancer took something from my daughter as well. She was suddenly no longer the center of attention and acted out at times in ways that were most likely a result of the trauma she was privately enduring.
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The good news is that Tyler survived—we all survived.