Just by looking at Ryan Cremeens, you wouldn't know that the fifth-grader at Boonesborough Elementary School has undergone more than his share of chemotherapy and radiation.
But Ryan is actually one of the 3% diagnosed with Rhabdomyosarcoma, a rare form of pediatric cancer. When Ryan was 8 years old, his parents began to notice little things that were off, but given that he was a growing boy, his symptoms were often overlooked when he went to the doctor.
At first, it was small things such as headaches and sinus issues, not uncommon considering Kentucky weather. Then Ryan started having jaw numbness, losing his baby teeth and grinding his adult ones when he slept.
But all of that turned into something more drastic one sunny afternoon while Ryan was golfing with his dad, Eric.
"He and I were out golfing, and it was such a nice, sunny day, and Ryan kept his left eye closed. I asked him about it, and he said the sun was bothering it," Eric said. "Later that day, we were watching baseball on TV, and he had his head turned almost parallel to TV. I had him look at me, and his left eye was turned inward toward his nose."
After a trip to a walk-in optometrist, which left the Cremeens' with no answers, they found themselves in the University of Kentucky Children's Hospital.
"They did run tests and neuroscans, and eventually they found a tumor that originated in sinus area," Eric said. "As it grew, it went through natural nerve openings, intracranial, and touched optic nerve, causing paralysis of the eye."
At first, Eric and Angie, Ryan's mom, tried not to use the word cancer when talking around Ryan, because even at 8 years old, he knew that cancer was bad.
But despite Ryan's diagnosis and his young age, he and his family began advocating for pediatric cancer research funding, in between chemo and radiation treatments.
At first, the Cremeens went to Frankfort for Pediatric Advocacy Day. While there, they got to meet with committee chairs to push for funding in the budget for childhood cancer research. Ryan and his father stood in the rotunda of the capital, where he told his story about living life with Rhabdomyosarcoma.
"Ryan likes putting on a suit and sharing his story," Eric said. "And we've done it every year since."
But last year came a trip to Washington, D.C., where they advocated for STAR Act, a comprehensive piece of legislation that, for the first time, would budget money that would go toward pediatric cancer research.
Along Ryan's journey, he and his family met 6th District Representative Congressman Andy Barr. The family appeared in a commercial featuring Ryan, his family and Barr's involvement in pediatric cancer research.
"He looks up to Andy Barr," Eric said. "He thinks it's pretty neat that a congressman that works in D.C. knows him, and he kinda wants to have everyone else be able to share that experience."
Barr, who not only pushed for the legislation, was a co-sponsor for the STAR Act. Prior to its passing, the National Institutes of Health focused roughly 97 percent of its research on adult cancer research, according to Eric, which is a problem because of the lack of work being made on childhood cancers, like the rare type Ryan has.
"One of his doctor's said to us, 'When you can cure a childhood cancer, you're saving a lifetime worth of a life,'" Eric said. "Ryan's going to get 60-80 years instead of 5-10. As adults, and as parents, the only thing we want to do is protect our children, because they can't do it themselves. It's up to the adults to recognize the need to do something. Something that my wife has said, pediatric cancer is rare until it happens to your child."
Barr and Ryan became friends not long after meeting, prompting Ryan to invite him to Boonesborough Elementary to talk to his friends, which Barr did on Monday morning. While there, Barr told the group of fifth-graders about Ryan's bravery, not only in his battle against Rhabdomyosarcoma, but for standing up and being an advocate for his cause.
"It was important because Ryan asked me to come. I have major respect for Ryan, he is a major inspiration to me, as well as others," Barr said.
After 42 weeks of chemotherapy and seven weeks of proton radiation, Ryan is in NED, or no evidence of disease. The further he gets away from diagnosis and end of treatment, Eric said, the less of a chance Ryan has of recurrence.
"It's indescribable, that anxiety of not proactively doing something, not doing treatment. The further we get away from it, and staying good, it just gives us more confidence," Eric said. "Right now, we're feeling good, but in three months, we will be making arrangements for his next scan. Then the scanxiety sets in."
To keep up with Ryan and his journey to recovery, follow him on his Facebook page at https://www.facebook.com/teamryan86.
Reach Kaitlyn Brooks at 624-6608; follow her on Twitter @kaitlynsbrooks.