December 01, 2010 - Ryan Kennedy sat at the dining room table drawing and writing - behind the creative mind is a soul of a survivor.
|The Kennedy family, from left to right, Cookie, McKenzie, Nathan, Ryan and Kimberly. Photo by Wendi Reardon (click for larger version)|
The North Sashabaw Elementary third-grader had his fifth surgery to remove his fifth brain tumor this time from his brain stem on Nov. 20.
"Every time this happens he beats cancer," said mom, Kimberly. "He doesn't give up. He takes it in stride."
Ryan has Ependymomas, a rare brain cancer in 6-12 percent of children under the age of 18 with brain tumors.
He had two tumors removed from his brain stem, one from his lateral ventricle, one from his auditory canal and one from his brain stem since he was first diagnosed in March 2007.
"Ependymomas is like a weed," Kimberly explained. "When you pull it, it could grow somewhere else."
They don't know the next spot it will form or what causes it.
"Brain cancer is a cancer that has no cure," said Kimberly, trying to spread more awareness. "You are shooting in the dark of how you are going to treat it and resolve it."
Ryan was four-years-old when he began throwing up every morning at the same time, he would react to bright lights, was in extreme pain, had a headache and would walk into walls.
He was initially diagnosed with a double ear infection and was given antibiotics in 2007. Then, the next diagnosis was he had a viral infection.
"As a parent you don't know better," Kimberly said.
One day Ryan kept falling off his bike and Kimberly had tears rolling down her cheek.
"Something is not right with him," she said and called her primary care giver who scheduled a CAT scan on March 29, 2007.
Two hours after Ryan was scanned, Kimberly received a call to go home to pack a bag for her and Ryan and get to the hospital - he had a brain tumor.
While he was in the intensive care unit he continued to have more symptoms and squinted one eye to watch the television.
Within a three week span he had gone from the initial symptoms to his next one - hydrocephalus causing swelling in the brain.
"He was angry laying there," Kimberly remembered. "He didn't know what was going on. He was hungry because he couldn't eat before the CAT scan. He had loss of appetite so when he did eat, he ate very little."
The next day the golf ball sized tumor was removed. Then, the healing began. Ryan began a six month chemotherapy in June 2007 and had six weeks of radiation following the chemo.
Ryan had a follow up at the end of November 2007 and another tumor was found in the same spot. Kimberly attempted a clinical trial in Chicago but after hearing it would be more radiation she opted out to prevent Ryan from any learning disabilities.
She scheduled a surgery and Ryan had the second tumor removed on January 16, 2008.
Every three months Ryan had MRIs to see if any tumors had come back. By the end of April 2009 the third one was found.
"We decided to try something," said Kimberly. "We switched hospitals. Then, we tried a five drug protocol from October 2009 to April 2010. We stopped when he kept having bad headaches."
He went through another set of scans in August and Kimberly wasn't settled on the clean results.
"They scheduled the 'peace of mind' scans for me," she said. "From that we found out there was another tumor."
While Ryan has undergone tests and surgeries he has found support from his older siblings, sister, McKenzie and, brother, Nathan, as well as his teachers and classmates at North Sashabaw Elementary.
He has also found more supporters through the Friends of Jaclyn Foundation - the Oakland University Baseball team visits and plays ball with Ryan.
As Ryan heals from his most recent surgery, the plans for the future remain the same to continue the scans and work with his oncologist to find a trial they can use.
"What do we have to lose," Kimberly questioned. "We don't have anything to lose but we do have everything to gain by saying 'let's try this and this.' If it does work, then we continue doing it because what it gives us is time. The more time we have, the closer we come to them finding a cure. That's how we have to approach it."
As several foundations, including Pediatric Brain Cancer Foundation, look for a cure, Kimberly spreads the word and supports them in their endeavors to help Ryan and all the other children living with brain cancer.
"It's not as uncommon as you think," she said. "It is a cancer that needs a cure."
Kimberly has created a link on Pediatric Brain Tumor Foundation's website for donations in Ryan's name, www.firstgiving.com/kimberlykennedy2.
For more information on Ryan and how he is doing, check www.carepages.com/RyanKennedy052402.
Wendi graduated from the University of Michigan-Flint with a degree in communications. She wrote for the Michigan Times college paper and Grand Blanc View before joining The Clarkston News in October 2007.