Fighting cancer, as a patient and a lobbyist

WASHINGTON -- Wyatt Rech didn't know he was different from anyone else until this summer. The 6-year-old from Montgomery, Minn., just figured doctor appointments, cancer scans and blood tests were a constant routine for every kid.

When he was running around shirtless this summer, Wyatt realized most other kids don't have surgical scars -- or "zippers," as he calls them.

Wyatt, who was born with a birth defect that made him predisposed to certain cancers, was screened every three months to look for masses. In February 2004, when he was 2, doctors found a rare tumor on his kidney called a Wilms tumor.

Wyatt's parents have been active ever since in promoting awareness of childhood cancer, which is the No. 1 killer of children in the United States. In Minnesota, about 160 children are diagnosed with cancer each year, and about 25 die.

On Nov. 14, the Rechs celebrated Wyatt's 6th birthday and a significant victory. That day, the U.S. Senate Health, Education, Labor and Pensions Committee approved the Conquer Childhood Cancer Act, which would provide $30 million per year until 2012 to expand childhood cancer research.

Republican Sen. Norm Coleman co-authored the measure. Sen. Amy Klobuchar, a Democrat, is a co-sponsor.

"It has a lot of meaning that it passed out of committee today, because we've worked on it for three years," said Wyatt's mom, Kris Rech, in an interview last week. "Wyatt doesn't understand the meaning of the bill or what Sen. Coleman is doing other than the fact that he's helping families and kids who have cancer. Sen. Coleman is his friend."

Coleman said he has been active in issues about childhood illnesses since two of his children died in infancy from a rare genetic disease. He got involved with the childhood cancer cause after Wyatt visited his office in June 2005.

"I think it's fair to say that in the case of young Wyatt, he just lights up the room," Coleman said. "Sometimes in this business you develop a special relationship. Wyatt is my friend. If you met him, you'd get it right away."

The politics of cancer research

Kris Rech said while she has been overwhelmed by the support Coleman has given her family, she has been "infuriated" by the lack of support from Republican Rep. John Kline, who represents her district.

Only two of Minnesota's eight House members have signed on as co-sponsors of the House version of the bill --Keith Ellison and Collin Peterson, both Democrats -- but Kris Rech said Kline's reluctance to do the same is upsetting.

Kline said he doesn't support disease-specific funding, preferring to leave decisions on how much funding each field of research should receive to the National Institutes of Health.

He did co-sponsor a nonbinding resolution this year stating that Congress should support public and private investment for childhood cancer research.

"I don't think politicians are in a very good place to make determinations on how we divide these health care resources," Kline said. "I recognize that childhood cancer is an awful, awful thing, but you could say the same thing about juvenile diabetes. When politicians decide to pay more money to one thing over another, they could in fact be doing harm they didn't intend to do."

Research dollars declining

Funding for the Children's Oncology Group, which is made up of more than 200 institutions around the country and treats 90 percent of children with cancer, has declined steadily in recent years, said Stacy Haller, executive director of the childhood cancer fundraising institution CureSearch.

"Over the last five years, all the cooperative groups have experienced a steady decline in the resources available," Haller said. "In this last year, they were forced to put 20 studies on hold, and 400 children weren't able to participate."

If the legislation were signed into law, the money would fund biomedical research programs to prevent and cure pediatric cancers and create a national database to track children throughout their treatment.

Wyatt "is experiencing growth of his kidney, and there isn't anyone to compare him to because there's no database," Kris Rech said. "The only way we could find out that information is going to other doctors and asking if they've treated someone similar who we could see."

In addition to aiding research, Haller said, the legislation would work wonders for raising awareness of childhood cancer.

"It is the No. 1 cause of death for children, and unless you've been touched by cancer you don't know it," she said. "Children don't have a voice. They don't vote and their parents are in crisis."

Kris Rech said childhood cancers don't get nearly the same attention as forms more common in adults.

"You look at breast cancer, and in the month of October, there's pink everywhere," Kris Rech said. "September was Childhood Cancer Month, and there was no gold to be seen. We've met so many families through this journey that we've come to know and love and we've had so many die of [a] Wilms tumor. Without the research there can be no cure."

Nina Petersen-Perlman • 202-408-2723

Nina Petersen-perlman • nperlman@startribune.com