Quad Cities, Iowa/Ill. (KWQC) – Some of the worst news a parent can get is hearing your child has cancer. Ewing’s Sarcoma is a rare and aggressive bone cancer that typically strikes children and young adults. While there are only a few hundred cases across the country each year, there are several families in the Quad Cities area dealing with the disease.
She and her husband Brian know all about taking it one day at a time. It’s been five years since they lost their son Nick to complications of Ewing’s Sarcoma. At age 29, he had battled the rare bone cancer for the better part of five years.
“He never would complain, that was the thing. You never really knew how much pain he was in,” added Nancy.
What they did know for sure was a desire to share Nick’s story and help his memory live on. Through the Nick Teddy Foundation and annual 5-K race in Port Byron the family hopes to give others more of a fighting chance.
“Only four percent of all funds raised nationally go to research pediatric and adolescent cancers,” said Holly Larson, Nick Strub’ sister-in-law.
It’s not near enough in their eyes, considering research for Ewing’s Sarcoma specifically gets only a fraction of that. Plus, even though it’s rare across the country, it doesn’t seem to be as rare in Quad Cities area.
The Strubs have since connected with several kids battling the same disease, like Parker Kress of Bettendorf. He was diagnosed at age 13 when doctors found a tumor in his right tibia area.
“All these big words and stuff, I didn’t konw what they meant. But the simplest you can put it, it’s a rare bone cancer. You hear the word cancer and it’s scary,” said Kress.
“After you come to terms with things you get sad then you get angry and it’s a range of emotions. It’s a rollercoaster,” said Kristin Dumser, Parker’s mother.
While fighting to live she says her son always looked for the light at the end of the tunnel. The Nick Teddy Foundation has been another shining light. During Parker’s treatment the organization pitched in on medical and transportation expenses. They offered moral support to the family and helped ease their burden in any way possible.
Parker is now 15 and says he’s cancer free. After the experience of a lifetime as kid captain at an Iowa Hawkeye game this fall, he’s now focused on school and sharing his story. Parker hopes to raise awareness and help others who are fighting for a chance.
“I just want him to live his dreams,” said Dumser.
Dawn and Eddie Vogel wanted the same for their daughter, Tori. She had a love for art and anime and was also 13 when she got the scary news.
“I knew something was wrong. Mother, you know, mom’s intuition is never wrong. I knew something was wrong with her from the moment I found the bump,” said Dawn.
They were another local family faced with the diagnosis. But their spunky teen responded well to the treatment.
“We did know that when Tori was diagnosed, because of the treatment, she had a one percent chance of getting Leukemia 5 to 20 years down the road,” added Dawn.
Then, with just a handful of chemotherapy sessions to go, that slim chance of leukemia on top of Ewing’s Sarcoma became real.
“She just continued to get worse,” they said. “From diagnosis it took six days. She passed away the same day she would have finished 8th grade.”
“I was just so angry. You know, she’s not here, and just so afraid she was going to be forgotten,” said Dawn.
Seeing their daughter’s life cut short and left with that void, the Vogels also wanted to make a difference. They turned Tori’s love of art into something special for other children fighting cancer. The Vogels now fill boxes full of drawing and craft supplies for a program they call Tori’s Art of Hope. They’ve made dozens for children at the University of Iowa Children’s Hospital as well as other young Ewing’s Sarcoma patients across the country. They make sure to share a little about Tori’s journey with each delivery.
“We want to bring cheer and the love of art back to the kids and keep continuing her honor.”
The Vogel’s also share the goal of more awareness and research just like other local families impacted by Ewing’s Sarcoma. They want the future to be filled with more hope for those battling the rare disease.
For more information on the Nick Teddy Foundation, CLICK HERE.
For more information on Ewing’s Sarcoma from St. Jude Children’s Research Hospital, CLICK HERE.