Clayton Trysla, Primitive Neuroectodermal Tumor (PNET)

Six Months Old at Diagnosis

Clayton TryslaClayton Robert Trysla was born on January 25, 2007 a beautiful, healthy baby boy. My husband and I, along with Clayton’s two older sisters, Tatum and Cimone (ages 5 and 3 at the time) were thrilled with his arrival.

When Clayton was six months old a few things began to concern me, and we were spending a great amount of time visiting the pediatrician and different specialists. Clayton was sleeping too much. Not only would he sleep through the night, but he would want to take a nap after being awake for only a couple of hours. He was having a difficult time adjusting to baby cereal and seemed to be very light sensitive. The week before Clayton was diagnosed he was going downhill fast. He seemed to be uncomfortable almost all of the time, and the most disturbing symptom that he displayed was that all of a sudden he stopped using his left arm. After being misdiagnosed once again by a pediatrician (the doctor said he had “nurses maid elbow”), Clayton began vomiting. At this point, my husband and I immediately took him to our local children’s hospital ER desperate for answers. That is when a CAT scan was ordered, and we received the devastating diagnosis that Clayton had a brain tumor.

After having emergency surgery at our children’s hospital in Kansas City, we received the pathology report stating that Clayton had stage IV brain cancer…a primitive neuroectodermal tumor (PNET). When learning how aggressive and rare this type of tumor was, we realized that, to give Clayton a fighting chance, we needed to find the absolute best doctor and best hospital for Clayton. After a great deal of research (my husband used his brother’s connections to the Center for Medicare and Medicaid Services in the Bush Administration) we were able to locate the top pediatric neuro-oncologists in the country, including Dr. Amar Gajjar at St. Jude Children’s Research Hospital in Memphis, TN. All pediatric neuro-oncologists gave the input that they felt the best place for Clayton would be at St. Jude.

In addition to researching the best options, our family turned heavily to prayer, as faith has always been an important part of our lives. Knowing that we had to make a decision in treatment quickly, I remember praying and pleading for a “sign” that St. Jude was the best place for Clayton. The following day, after saying this prayer the night before, a dear friend of mine from Des Moines, IA, felt compelled to bring me a gift. She drove the three hours to give me a medallion – a St. Jude medallion that had an inscription on the back from Rosemary Thomas, the wife of St. Jude founder Danny Thomas. This was the confirmation that I needed, knowing that St. Jude was place for Clayton to undergo treatment.

Today Clayton is five years old and returns to St. Jude every six months for an MRI of the brain and spine along with visits to all of his doctors and therapists. September of this year will mark Clayton’s five year mark since diagnosis.

Clayton has participated in thousands of hours of therapy including: physical therapy, occupational therapy, speech therapy, aqua therapy, sensory integration therapy, and integrated listening therapy. If you were to see Clayton today, you would never guess that this little boy had been to “hell and back.” Clayton is a very happy little boy who is very active. His favorite things include swimming, jumping on our trampoline with his sisters, playing doctor, and reading books. The last time Clayton returned to St. Jude, his reading level was assessed at the 1st grade seven month level – not bad for a little guy who is still in preschool. Clayton attends a mainstream preschool with an occupational therapist who assists him for part of his day.

Our family couldn’t be more grateful for the past five years we’ve had with our Clayton. Even though this journey has been extremely difficult, Clayton brings our family so much joy. We couldn’t imagine life without him. In this flawed world, many say there is no such thing as perfection. Clayton has been blessed to have two amazing sisters who truly couldn’t be more “perfect” for him. They love him unconditionally and are his fierce and wise protectors. Our family treasures each and every day that we have with Clayton. While his future is uncertain, we hope, pray and believe that his days of battling cancer are over.

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