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This image of Alec Oughton will be put on the recreational vehicle carrying the fathers The Oughtons--Crystal, Alec and children Grace and Landon--gathered for a portrait in between treatments. |
The first time he learned his 18-month-0ld daughter had cancer, Alec Oughton cried himself to sleep every night for two months.
The second time, he cried for a day.
The third, he decided to go to the top of a mountain.
When it comes to fighting Grace's neuroblastoma, Alec went back to something he learned after 14 years fighting fires: Take action.
"If you go to a fire and there's people hanging out of the window of a burning building, standing and crying won't get them out of the building," he said. "Me panicking won't help them."
But getting a ladder, putting it on the house, climbing up and bringing the people down from the fire will help.
It's a system. A logical, step-by-step system.
Surely there had to be a system that would save his now 3-year-old daughter.
There has to be a way to keep her alive for more of the good days, times when she wants to get out of bed and play with her baby dolls or eat strawberry waffles. Or get on the phone and say, "I love you, Daddy."
Doctors told Alec and his wife, Crystal, something could help. It wouldn't cure the aggressive cancer attacking Grace's body, the kind they thought she had beaten twice.
But this treatment could keep the cancer at bay and allow her to lead a more normal life.
"Or about as normal a life as you can lead with a terminal cancer," Alec said.
The treatment--3F8--is a mouse antibody that attacks a protein associated with neuroblastoma.
It kills the neuroblastoma cells without many of the harsher side effects of chemotherapy.
The mouse antibody isn't a cure, but a humanized version could help more kids, including Grace.
It would cost nearly $5 million to develop. And another $2 million each year to keep it going.
"To me, a fireman who makes $60,000 a year, it's an astronomical amount of money," Alec said. "But if 10 million people have 50 cents then we're done."
He and other dads at Memorial Sloan-Kettering Cancer Center in New York City wondered how they could get that many people's attention.
"You can only have so many barbecues and so many bake sales," said Kevin Sims, who learned his daughter Syndey had neuroblastoma in 2004.
The fathers came up with the idea of a cross-country bicycle ride to tell people about the cancer, which affects about 600 kids each year in the United States.
"We have to essentially ride from town to town and tell people that kids die every year and there is no funding for cutting-edge research," Alec said. "We're going to the top of a mountain and yell and make people aware of it."
Seven fathers will ride in a relay style for 3,700 miles from Sacramento, Calif., to Washington, D.C., starting Sept. 10.
One rider will always be pedaling, while the other fathers will be in an RV.
Two of the dads are alternates, because their children are on chemo, and they might have to return to New York, Alec said.
Crystal will be in New York while Grace finishes a round of radiation and then moves on to chemo. Grace's big brother, Landon, will be home in Virginia with relatives and going to kindergarten.
Crystal says being a single parent for three weeks is worth it.
"This could potentially save our kid's life plus a lot of her friends," she said.
The dads dubbed the campaign The Loneliest Road after the stretch of U.S. 50 in Nevada.
It also describes fatherhood and neuroblastoma, Alec said. The insurance companies don't understand the treatments, few places actually treat it and the research money is scarce.
Sometimes, Alec said, you feel completely invisible. Like you're screaming for people to notice your dying child and no one does.
That's why you have to bike to the top of a mountain, he said.
"We have to do something like this to get people to take notice."
Alec was not an avid bicyclist before, but he did ride in the Pan-Massachusetts bike challenge to raise money for the Dana-Farber Cancer Institute, where Grace once received treatment. He practices on an exercise bike at the fire station in Henrico County where he works.
In between taking care of Grace and her older brother, it's hard to find time for much more practice, he said.
Alec wants to collect $2 million by the time the fathers roll into Washington.
"If we had $2 million of our own, we would give it," Alec said. "We believe in this that much. We don't have it. But we have our legs and our hearts and our determination and our drive. And our kids are our heroes, and we're going to try and be like them and do whatever we can to raise the money."
Amy Flowers Umble: 540/735-1973| To donate: savegrace.com or loneliestroad.org |
