Double Duty

When Dr. Stuart Siegel led the effort to found the innovative Ronald McDonald House near Childrens Hospital in Los Angeles in the late 1970s, it combined his responsibilities as director of the hospital’s cancer program with off-hours charity efforts to provide additional services for children with cancer.

Two decades later, Siegel, part-time doctor, part-time fund-raiser--although some say he works around the clock at both--is still the director of what is now called the hospital’s Center for Cancer and Blood Diseases, the second-largest center in the country, and a pretty important place for families touched by childhood cancer.

At Childrens Hospital, Siegel--who also has traveled to Russia, China and Brazil to improve childhood cancer treatment in those countries--administers a diverse collection of scientific and social programs that have been the model for the “full treatment” of children. Such treatment combines medical care with a variety of programs, ranging from those that provide psychological counseling to those that ease the return to school--all designed to improve the quality of life for children living with the disease.

Away from the hospital, Siegel has helped raise funds--through government grants and charitable donations--for additional services such as temporary housing for patients’ families at the Ronald McDonald House, and recreation trips for cancer patients to Camp Ronald McDonald in Idyllwild.

Of the center’s budget, 25% comes from charity. The rest comes from grants and patient payments.

“I’ve seen him out supporting the Ronald McDonald Charities,” said Chris Hoefflin, who founded the Michael Hoefflin Foundation, after his son died of cancer, to help fund brain cancer research at the center. “I’m in awe at how giving he is, especially in his position.”

For Siegel, a career in cancer treatment has been satisfying because no other field of medicine has seen the kind of progress that’s been made in childhood cancer during the last four decades, he said.

“Yes, kids still die. And it’s terrible and depressing, frustrating,” he said. “But, boy, there are also some incredible days . . . when that kid comes in that no one had cured before and you try something new and that kid comes in 10 years later with his family. Try replacing that one.”

But three decades of working to better the lives of children with cancer, of the emotional drain of watching families suffer, and the demands of after-hours fund-raising events have also taken a toll on Siegel’s personal life.

“I have to be honest and say that I probably shortchanged my son and family,” said Siegel, 56, of Arcadia, whose son, Joshua, is now grown. “I am now separated from my wife. . . . I can’t say that the career didn’t take its toll on that relationship.”

Cancer is still an elusive disease--the leading killer, after accidents, of children. Incidents of childhood cancer have been rising at the rate of 1% a year, Siegel said. Still, it is relatively rare, with about 8,000 new cases involving children younger than 14 nationwide every year--300 of which are diagnosed and treated at the Childrens Hospital center.

But their prognosis is so much different now, Siegel says.

In the 1950s and ‘60s, virtually all children diagnosed with a form of cancer died. Now, the survival rate is 75%, he said. The center staff takes pride in having improved the national survival rate, because some of the research and techniques used nationwide originated here.

Childrens Hospital has offered some form of a cancer program since 1951. Indeed, it was the first on the West Coast and on this side of the Mississippi to use chemotherapy to treat leukemia. (Chemotherapy was first used this way in Boston.)

In the late 1960s, Childrens Hospital’s cancer program became the division of hematology/oncology; Siegel became its director in 1976. In 1995, the hospital created the Center for Cancer and Blood Diseases from existing cancer programs, and Siegel was named director.

In the last two decades, the center has become known for its “bench to bedside” approach to treatment, said Patrick Reynolds, head of the hospital’s developmental therapeutics section. That means that some of the same pediatric cancer specialists caring for the kids are also working in the hospital’s numerous labs, coming up with new treatments they can rush to the children as soon as possible.

Among its many advances, the center pioneered limb-salvage techniques to save the legs of children with tumors of the pelvic bones, Siegel said.

Certain drugs and drug combinations such as melphalan and buthionine sulfoximine, commonly used to treat various cancers, were also developed here, Reynolds said.

This fall the New England Journal of Medicine published a study on neuroblastoma--tumors that grow near the nervous system--that originated at the center in 1991 and involved doctors and patients from throughout the country. The treatment, using bone marrow transplant and follow-up therapy with high doses of the drug Accutane, brought the three-year survival rate up to 55%. The survival rate for those not in the study is about 10%.

Chase Wilson, 10, was a neuroblastoma patient who almost certainly would have died but for his participation in the study seven years ago.

“I think I’m a miracle,” said the giggly boy at his grandmother’s La Puente home.

In all, about 70% of the center’s patients at any given time are involved in some sort of innovative study, Siegel said.

It’s not easy putting together a healthy budget for a children’s facility in California, where the state’s insurance reimbursement for pediatric care lags behind many on the East Coast, Reynolds said. So Siegel turned to fund-raising.

“I figured out pretty quickly, particularly after I became division head [of hematology-oncology] in ‘76, that in order to assure stability in a program, you had to have funding from a number of sources,” he said.

In 1977, he organized a group of McDonald’s restaurant operators, people associated with the Los Angeles Rams as well as parents, and started Southern California Children’s Cancer Services. That fund-raising organization opened the Ronald McDonald House on Fountain Avenue, near the hospital, in 1980.

Two years later, Siegel and another member of the organization, Pepper Edmiston, co-founded (along with actor Dustin Hoffman) Camp Ronald McDonald for Good Times in Idyllwild. Southern California Children’s Cancer Services also established Ronald McDonald houses in Loma Linda and Orange. A few years ago it changed its name to Southern California Ronald McDonald Charities and retained Siegel as its president.

Siegel sees that aspect of his work simply as an extension of medical care.

“The therapy was getting more and more complicated. The kids had to be at the hospital more, and parents had no place to stay,” he said.

Among the center’s extended services, for example, are psychologists and staffers who counsel children and their families through their treatment, and visit schools to explain to teachers and students what has happened to a cancer patient who will be returning to the classroom.

“A lot of people get confused.” said Ernest Katz, director of the center’s behavioral sciences section. “ ‘Why is a hospital involved in education?’ But we really see this as the interface between all the elements of society. The schools don’t know medically what’s going on with the kids, and the hospital doesn’t know what’s happening academically and socially with the kids at school.”

But kids and parents know well how drugs and radiation, with their side effects of balding and swelling, can affect their social life.

“When I walk on the street and don’t have my hat on, the kids laugh at me,” said Sara Diaz, 8.

Her mother, Rosa, tells of the neighborhood kids who would call her daughter names like “baldie.”

Balbina Taracena, 6, who recently stayed in the germ-free “bubble room,” where kids await bone marrow transplants, hoped that while she was there being treated for leukemia, her hair would grow back and she would “get skinny” before going home.

“The hospital helps the whole family,” said Balbina’s mother, Maricela. The parents particularly appreciate the information on such things as requesting that a teacher come to their homes while children can’t attend school.

“We like that a lot,” Maricela Taracena said.

Because neither private nor government insurance pays for anything other than medical treatment, the center relies mostly on donations and grants to fund such programs, Siegel said.

Funding comes from such organizations as the T.J. Martelle Foundation, the Children’s Cancer Research Fund as well as such unexpected sources as the national Delta Delta Delta sorority, where Siegel has contacts.

Still, Siegel manages to stay more than an administrator and fund-raiser. He has a long list of patients because he continues accepting new ones and keeps in touch with old ones.

“He could have just gone on and been an academic physician,” said Fran Wiley, president of Camp Ronald McDonald’s board of trustees. “But all this other stuff is as a volunteer, including taking his own vacation to go be a doctor at the camp.”

Jose Cardenas can be reached at jose.cardenas@latimes.com.