Tony Colton still manages to smile.
He walked into one of Moffitt Cancer Center's labs Wednesday wearing a grin and a yellow t-shirt that said "FORTUNE FAVORS THE BALD."
Tony, who's 13 and from Sarasota, knows a lot about why his hair is gone. He'll tell you about the clear-cell sarcoma he started fighting in 2007. He'll tell you how it's back, and how he's fighting it again.
"Only about 20 kids a year are diagnosed with it," Tony said.
It is a frustrating and emotional process for the children and their families who go through the pain and heartache of battling cancers of the brain and sarcomas like Tony's, which impact bones and muscles.
"There's no protocol to treat them and they're living 5 years, 6 years and that's it," said Connie Colton, Tony's mother. "It's not right. That's not long enough for a child. Our children are being treated by therapies that have been programmed to help adults and it's being passed down to our children."
Now, a new trial announced Wednesday by the Pediatric Cancer Foundation based in Tampa is aimed at giving new hope to children like Tony.
The new research trial is called Pediatric Total Cancer Care. Moffitt will help coordinate it while collecting blood and tissue from children from all across the country. Researchers can freeze the material, and study it. The hope is to eventually figure out treatments that work better for children; ones that are less toxic, and are more targeted for young bodies.
"We might just find the reason why people get really rare cancers," said Dr. Damon Reed, a pediatric oncologist who practices at Moffitt and All Children's Hospital.
Dr. Reed is leading the Sunshine Project, as it's called, which will collect samples from children at All Children's in St. Petersburg, MD Anderson in Orlando, Children's Hospital of Los Angeles, and eight other hospitals across the country.
"Over a million samples could fit in this long freezer," said Dr. Damon Reed as he pointed back to a massive white freezer in the M2GEN lab, which stands for Moffitt Second Generation.
Nancy Crane, executive director of the Pediatric Cancer Foundation, said the group's goal is to fund $1 million in research between 2013-14.
"To fund research for cancers we don't have answers for," Crane said. "Being able to look at the tissue and compare that with other people who have a similar disease and then work on new therapies and combinations… and that's what we're doing. We don't have to have 18 children to go through a phase one trial to find out if this drug is safe or this combination of therapies is safe so that we'll be able to have smaller trials so we can get through faster."
Dr. Reed said it will come at no cost to the patient or the hospital.
"I do think we can find genes that are changed in a way, mutated, that sometimes we have the right treatment for that we can just match the right treatment to the right patient," he said. "It's complicated though. With all of the different genes and with limited drugs right now, especially with children, it's complicated to find that perfect match but we think it's worth trying."
Tony hopes it is. Dr. Reed is his doctor.
"Really it's going to make a great difference for the kids who have to battle cancer like I have," Tony said.
Fitting, his mom says, that this is National Childhood Cancer Awareness month.
"This is what we've been waiting for … for our children," she said about the trial.
The Pediatric Cancer Foundation currently has three other clinic trials open: one for relapsed acute lymphoblastic leukemia and two for relapsed or refractory solid tumors.
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