9/26 – Timothy

Timothy was nine months old when the word cancer entered our lives. He had a routine MRI of his spine to rule out a tethered spinal cord as a cause for his motor delays. His spinal cord was fine, but a radiologist spotted a shadow on his liver. We were called immediately back to the hospital for an ultrasound and a second MRI was scheduled. We met his oncologist and the man who would become his primary surgeon at 7PM on a Friday night. We were told not to hope that the biopsy would be benign but to hope that it would be the more treatable of the pediatric liver cancers. Our baby played peek a boo with a fellow while we talked about surgery, chemo, and life expectancy. After the biopsy, that same fellow kept our sweet boy happy while we were told that the existing protocol for Stage III hepatoblastoma left his chances of survival grim at best. We enrolled him in a trial of what has now become the primary protocol for the disease. All four drugs were designed for adults. The list of possible immediate and long-term effects seemed endless.

The next six months were a constant barrage of treatments, side effects, complications, and desperate hope to see the next day. The trial study included drugs with possible late effects ranging from hearing loss to low bone density to an increase in risk for leukemias. Every day, we watched as these drugs were infused into his body by way of a central line. He underwent numerous surgeries, exploratory scopes, and radiology procedures. Before he was two years old, he had been under anesthesia more than forty times.

Now, Timothy is almost eight years old. He finished chemo six years ago. We have what we refer to as souvenirs from treatment. His bone density is low. At age four he fell on our carpeted floor and suffered a spiral femur fracture that led to an ambulance transport from our local hospital to his primary hospital. He spent six weeks in a cast from his toes to his chest. He has permanent hearing loss and wears hearing aids. He has a feeding tube that will be a part of him throughout his life. All of these are at least in part from the chemotherapy agents that saved his life as a baby.

He also carries with him a resiliency that defies explanation. Timothy is joyful. He is comfortable in places that most adults would find intimidating. I think that is the legacy living through cancer and continuing to live with the late effects has given Timothy. He knows that life is meant to be lived, and he lives it with joy and presence in each moment.

Timothy’s family became a part of our family while sharing the Ronald McDonald house together. Timothy’s experience as a baby, helped him to be compassionate to all around him. When he met Tillery, it was during the helmet months and he immediately dubbed her “Baby Hat”. Timothy and Tillery became good buddies at the RMH and they always pick right up where they left off when we see each other now. As Tillery’s parents, we love Timothy’s survivor story as it has always given us a ray of hope on stormy days.

#Timothy #BabyHat #tilleryisloved #TILfoundation #alexsmillionmile #GoGold2017

To support childhood cancer research in honor of kids like Timothy, make a donation to our team (TIL Foundation) with Alex’s Lemonade Stand Foundation. https://www.alexslemonade.org/mypage/1314958