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ANN CONWAY

Parents Driven to Give Kids With Cancer a Fighting Chance

July 06, 1999|ANN CONWAY

Steve Quackenbush wasn't looking to make history.

A supporter of the Pediatric Cancer Research Foundation in Irvine, he just wanted to spread the word about the need for funding.

But make history he did when Quackenbush and his 5-year-old son, Marshall--a cancer survivor--appeared before the Orange County Board of Supervisors in April with a precedent-setting request: declare a Cure Children's Cancer Week.

"We wanted a week that would heighten public awareness about children's cancer and the fact that it is one of the least-funded charities," explained Quackenbush, 42, of Corona del Mar. "There's quite a competition going on among all charities. And it's sad, but true."

They got their wish. During the week of July 12, the foundation will offer a variety of activities to mark the first Cure Children's Cancer Week in Orange County.

On the calendar:

* July 12. A kickoff celebration featuring a benefit Rod Carew Children's Cancer Golf Classic--chaired by Quackenbush--followed by a fund-raising dinner at Dove Canyon Country Club in Newport Beach.

* July 13. "Hope for the Millennium" Educational Forum, 8:30 a.m. to noon at UC Irvine.

Featured speakers and their topics: Dr. Mitchell Cairo, director of the Pediatric Cancer Research Foundation Laboratory at Georgetown University--"Discoveries in Research"; Dr. Marcio H. Malogolowkin of UCLA--"Discoveries in Treatment"; and Dr. Frank Meyskens of UCI's Chao Family Comprehensive Cancer Center--"Discoveries in Cancer Prevention."

* July 18. A five-kilometer walk and children's one-kilometer fun walk at a "Reaching for the Cure Walk-a-Thon" at Irvine Spectrum.

*

Quackenbush and his wife, Shirley, thought their 15-month-old son had the flu when they took him to the doctor three years ago.

But the diagnosis was far more serious: neuroblastoma, a childhood cancer that originates in the adrenal glands and spreads to the central nervous system.

"We came away from the doctor feeling like a bomb had been dropped on our family," said Steve Quackenbush, a shipping executive in Long Beach.

But after chemotherapy, radiation and a bone marrow transplant, Marshall is living a normal life.

"My wife and I don't want this to happen to anyone else--and we know that if enough money is raised, a cure will someday be found," Quackenbush said. "The foundation has raised more than $6 million for research since it was founded in 1982."

Without the research supported by the foundation, 5-year-old Eric Hernandez--diagnosed with leukemia when he was 3--might not be alive today, said his mother, Sandy, of Huntington Beach.

"My husband, Bernard, and I support the foundation because we feel that the people who were supporting it 10 years ago are the reason Eric is still here," she said.

*

Derek Kuhs of Laguna Hills was not so lucky. Diagnosed at 18 months with chronic granulomatous disease--a rare blood disorder that strikes one in a million--he died last October at age 6.

"Many of the cures that have come out of cancer research are helping hematology patients," said Derek's mother, Gloria, 42. "That has been the inspiration for my husband, Rick's and my involvement with the foundation." The Kuhs also have a son, Ryan, 4.

Derek faced his first life-threatening infection when he was 18 months old. "Sixty tests were run and Dr. Cairo heard about the case and diagnosed it immediately," Gloria Kuhs said. "That's how we were introduced to the foundation."

After several brushes with death, Derek sustained organ damage, his mother explained. "And he began to build up resistance toward the life-saving treatments available to him."

A deep faith in God--and their gratitude for the support of the foundation--help Rick and Gloria Kuhs face each day.

"Derek was the most spiritual person I've ever known," Rick Kuhs said. "He brought a spirituality to Gloria and I that was far more than we had as children.

"We didn't take him to church much; we tried to keep him away from situations where he might pick up an infection. But he acquired a closeness to God on his own, and he let us know that."

It was in November 1997, when Derek was critically ill, that his mother said she first noticed he was "having a conversation with God. It was so comforting and inspiring--awesome to witness," Gloria Kuhs said.

"As time went on, he told me about what God would tell him. I think he was very well prepared for his death, very much at peace, very excited about where he was going."

For information on Cure Cancer Week activities: (949) 727-7483.

Ann Conway's column is published on Tuesdays. Her e-mail address is ann.conway@latimes.com.

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