Cynthia Van Lenten and Stephen Crowley say there are two ways of dealing with tragedy.
The Cleveland Heights couple’s 10-year-old daughter, Olivia, lost a three-year battle with cancer in 2005. The family saw specialists in Cleveland and as far as New York and Memphis, searching for the best care for their little girl.
“You don’t necessarily want to get back into the world of childhood cancer because it’s so frustrating and such a bad memory, and I think people who have children who survive probably want to get as far away from it as possible,” Van Lenten said. “And you can understand why people who’ve lost a child don’t want to go back there and want to move on.”
That was one way they could have coped, and no one would blame them.
“One way of dealing with a tragedy like this is to close the door and not look back on it, and for whatever reason, I think that’s hard for us to do,” Crowley said. “We weren’t able to save her, but we thought we might be able to keep other families from having to go through this. That’s what motivates us.”
Crowley and Van Lenten are now in their third year of co-chairing The Northeast Ohio CureSearch Walk, an event that helps raise money for research into childhood cancer treatments and medicine.
The 2012 walk starts at 10 a.m. Sept. 29 at Wade Oval Park. Families can sign up online or register the day of the event starting at 9 a.m. The walk is around Wade Oval, so children can participate. The event will include snacks, drinks, face-painting music and dancing.
The walk, which is also organized by Cleveland Heights resident Stacey Brown-Walker, whose son had cancer, has raised $50,000 each year and attracted an estimated 400 people. They’ve already raised more than $33,000 this year, and hope to hit their goal of $60,000.
“It’s empowering to do something positive because there’s not anything obviously positive about (childhood cancer),” Van Lenten said. “The only people who are going to shed light on the issue are people who have been there.”
And the people who are most invested are the families who know the startling statistics about childhood cancer. Crowley said an article in the New Yorker put it best.
“It was talking about children’s health issues generally, but it said when it comes to children’s health, the lifeboat principle gets reversed. Children come last.”
In the past 20 years, the FDA has initially approved only one anti-cancer drug specifically for children, according to CureSearch.
Dr. Greg Plautz, Chair of the pediatric research center at Cleveland Clinic’s Children’s Hospital, also helps organize the CureSearch Walk and supports the organization because of its efforts to pay for collaborative research into childhood cancer.
“The only way to really make progress was combine resources and start national cooperative groups to perform clinical trials, and so this is evolved and now the national organization that runs these clinical trials is called the Children’s Oncology Group … and CureSearch is the philanthropic arm for the Children’s Oncology Group,” said Plautz, a Shaker Heights resident.
The Children’s Oncology Group represents more than 200 hospitals nationwide that treat more than 90 percent of children with cancer in the country. Rainbow Babies and Children’s Hospital, The Cleveland Clinic and Akron Children’s Hospital are part of the group and The Northeast Ohio CureSearch Walk.
About 13,500 kids are diagnosed with cancer each year.
“So it’s a very small market compared to a lot of the adult types of cancer, so it’s been difficult for pharmaceutical companies to develop drugs specifically useful for the pediatric oncology population,” he said. For example, Olivia was diagnosed with Ewing’s Sarcoma, a cancer that afflicts 250 to 300 children in the U.S. each year. “So drug development and drug testing has mainly been using drugs that have been developed for adult cancers but not children’s cancer.”
But Plautz said there is some good news. Survival rates have increased sharply. According to CureSearch, about 78 percent of children survive, up from 10 percent in the 1970s.
In addition to helping raise money into research, Crowley, Van Lenten and even their daughter Anna, 14, have lobbied Congress to appropriate more money into childhood cancer research and treatments through the National Cancer Institute.
"(Anna's) gone to Congress and she’s spoken to congressmen and senators and she’s said, very sweetly, my sister is very sick and basically you guys have to do something and give money to childhood cancer. She had everybody in the room crying," Van Lenten said, adding that she spoke when she was 12. "But this is her life. She’s a happy kid, she’s smart, she also writes. She wrote a story actually, a fictional account about a boy with cancer, so writing has been a real release for her."
Van Lenten took down two photos of Anna and Olivia displayed on a piano in the living room.
"Anna has been to all of those hospitals. We lived at St. Jude's for months while she got a bone marrow transplant. We lived at the Ronald McDonald House in New York City while she was at Sloan-Kettering. So she’s lived with this for a long time, and she had a small window where we had a normal family, until she was 3 when Olivia was diagnosed," Van Lenten said.
Though the walk is difficult for the family, Van Lenten said it is also empowering.
"Sometimes you can tell they’re sick or they have a bald head, and I think it makes them feel good to be recognized and honored…. Because it is this quiet, small world. You’re not going to really talk about it, you’re not going to celebrate, so you don’t have an outlet. The day of is actually not sad."
Crowley chimed in.
"A couple of years ago we saw this girl in a wheelchair who looked like she was on death’s door, and now she just graduated from high school, and she went to her senior prom and she looks great. So those sorts of things inspire us."