Helping find cancer cure gives grieving parents purpose
Nine years after losing his nine-year old son Killian to leukemia in 2003, Clay Owen, a media spokesman at AT&T, still has trouble getting through an interview about childhood cancer without becoming emotional.
Clay and his wife, Grainne, are among thousands of parents whose lives took a dramatic turn the day they were told one of their children had been diagnosed with cancer.
While there is no cure for grief over the loss of a child, some parents, like the Owens, find purpose and solace in helping find a cure for childhood cancer.
A year after losing Killian, the Owens created Coaches Curing Kids Cancer (CCKC), a foundation devoted to raising funds for childhood cancer research. Since then, CCKC has grown in size and scope and by now has raised $2 million, in the process helping fund important research.
Childhood cancer statistics
According to the National Cancer Institute, the number of children diagnosed with cancer between the ages of 0 and 14 increased from 11.5 cases per 100,000 children in 1975 to 15.9 in 2009.
The upward trend may be a result of diagnostic methods—such as CT, MRI, and PET scans—evolving rapidly between 1975 and 1995, according to Dr. D. John Bergsagel, M.D., assistant professor of pediatrics, Leukemia/Lymphoma Service, AFLAC Cancer Center & Blood Disorders Service and Emory University School of Medicine in Atlanta, Ga.
During this same time, however, death rates declined dramatically and survival rates increased for most childhood cancers.
“The five-year survival rate is above 80 percent,” said Owen. “Technically, it has gone from a death sentence to a five-year survival rate of between 80 and 90 percent.”
The challenge now is to get medical research to make the final step toward 100 percent survival. But, for that, research funding is needed.
“The treatments being used today have gone as far as they can go. Many of the drugs they are using are 40 to 50 years old,” said Owen, adding that children are treated with the same drugs being used to treat adults, only using different doses. “The reason why the cure rate is better is because they have been able to adjust the amounts of what they give you and introduce a few other drugs into the mix.”
According to Dr. Bergsagel, “Some more recent drugs, such as Taxol, Taxotere, Avastin, etc., have a small but important role for some pediatric cancers. In leukemia, only two new drugs have been introduced in last 20 years.”
BL22 is one of those two drugs, and Killian was the first child in the world to be treated with it. While the dosage he received was not large enough to kill his cancer, his cells are helping with research–and other children—even to this date, said Dr. Alan Wayne, the director of pediatric oncology at the National Cancer Institute who treated Killian, as reported by the Los Angeles Times.
According to Bergsagel, “These drugs have been very promising in heavily treated, relapsed patients, such as Clay and Grainne’s son, Killian. Thanks in part to CCKC, these therapies are being moved up in therapy to patients before they relapse to see if they can help prevent relapse.”
Enter the parents
“Now the real focus is on targeted therapies, and that is where we are very excited about our efforts in raising money,” said Owen.
That’s where the Owens and the foundations created by many other bereaved and survival parents come in.
“Very big organizations were started by bereaved parents,” said Owen. “Even the Leukemia and Lymphoma Society, one of the biggest in the world, was founded by bereaved parents. Alex’s Lemonade Stand, same thing. Alex’s parents started that foundation.”
With Coaches Curing Kids Cancer the Owens created a mechanism for people to buy a more meaningful gift for school coaches while supporting childhood cancer.
“When teachers heard about it, they came to us and said, ‘we would love for you to do the same thing for teachers.’ And so we set it up for teachers, as well as following exactly the same concept: kids can show their appreciation for their teachers and support the fight against childhood cancer at the same time.”
The coaches and teachers programs are among the various methods by which the Owens have been able to contribute $2 million to childhood cancer research.
“We’re fortunate to have a number of active programs, a successful golf tournament, new ideas coming in to raise money, new people to help us,” Owen said. “We’re very excited.”
Café Racers, an international motorcycle group, built and auctioned two bikes, donating about $90,000 in proceeds to CCKC. A third bike is being built for the same purpose. And then there is the annual golf tournament.
Owen’s employer, AT&T, has partnered with CCKC in hosting the AT&T Curing Kids Cancer Golf Tournament. The seventh annual tournament will take place May 14.
“The first year we raised $50,000; this year we will raise more than $250,000 with that golf tournament,” said Owen. “That means this year we will surpass the $1-million mark total raised since its inception.
“The tournament has taken on a life of its own,” he noted. “Now we have a number of celebrities who take part in it, which is wonderful. ESPN sports commentator Lee Corsoserves as honorary chairman and has been involved with us for a number of years.”
This year, Atlanta Braves’ closing pitcher Craig Kimbrel became involved with CCKC. “He’s going to be making donations based on how many saves and strikes he has this year and how many strike-outs he throws this year; so he’s going to be a big part of what we’re doing going forward,” said Owen.
It’s where the passion is
Creating a foundation to focus their energies on has been very helpful in maintaining the wellbeing of the Owens’ household despite such a heavy loss.
“We’re doing fine,” said Owen. “The family is plugging away. Time moves on. The other boys are doing fantastic, which was our biggest concern: that our other children would be able to get through all this.”
The oldest, Pierce, is a national merit scholar and a sophomore at the University of South Carolina. Garret, Killian’s twin, will be graduating from high school in May and will be going to USC, as well, having earned a couple of scholarships.
“It’s just shocking to think that Killian would have been this age,” reflects Owen. Their youngest child, Finnian, is a freshman in high school.
“Managing the foundation is a lot of work, but it’s where the passion is,” he added.