In Need of Help : Parents of Young Cancer Patients Experience Feelings of Isolation

Two years ago Suzette Jimenez watched in frustration as her infant son suffered from severe fits of vomiting and dizziness that doctors were unable to accurately diagnose.

Finally, Jimenez took 18-month-old Al to the Pediatric Diagnostic Clinic at Ventura County Medical Center, where physicians confirmed her worst fears. Her son had a cancerous brain tumor and little chance of survival.

“I was devastated,” she said. “I felt betrayed and totally alone. One doctor had told me that babies don’t get tumors. It was horribly traumatic.”

Jimenez’s sense of isolation is echoed by other Ventura County parents whose children have cancer. They say the scarcity of support services and comprehensive care for their children makes life difficult in a county without a single pediatric cancer specialist.

“It can get stressful because our car breaks down a lot and we end up stranded,” said Maria Andrade, who must drive her 9-year-old daughter Edlin from Oxnard to Los Angeles for leukemia treatments. “There isn’t any easy way to get my child the help she needs.”

An estimated 250 Ventura County children suffer from cancer. Leukemia, which attacks bone marrow, is the most common type, followed by brain tumors and cancer of the lymph system. After the cancer is discovered and removed, a child must undergo two to five years of close follow-up care before the cancer is considered to be in remission. About a quarter of all children with cancer die from the disease.

As Ventura County continues to grow and survival rates improve, the number of children requiring cancer-related treatment grows as well.

“Ten years ago many of these childhood cancers were not survivable illnesses,” said Chris Landon, head physician at the pediatric clinic in Ventura. “Now we’re looking at more and more kids who are making it who need quite a bit of support and medical attention.”

Among those who have survived is Jimenez’s son. After undergoing surgery to remove the tumor, Al’s condition is closely monitored by physicians in Ventura and Los Angeles.

On a recent visit to the clinic, the cheerful toddler with peach-fuzz hair roamed the hallways handing out crayons, a finger-sized lump on the back of his head the only evidence of the excised tumor that has kept him in the hospital half of his life.

“Every day I feel blessed,” Jimenez said as the nurse examined her son for any sign of infection. “And every day I wonder how we’re going to make it through the simplest things, like getting to our appointments on time.”

Across the hall Jose Salgado coaxed his 7-year-old son Enrique to cough so doctors could gauge the flow of air through his windpipe, which until last summer was blocked by a tumor the size of a silver dollar.

The tiny, shy boy stared intently at his black cowboy boots with silver spurs and coughed meekly.

Salgado said that when doctors told him his son had cancer, he decided not to tell his wife. “I didn’t know anybody else who had this problem, so I didn’t have any good advice,” Salgado said. “I was afraid of how she would take it.”

Eventually, with the help of physicians and social workers, Salgado broke the news to his wife. “She was hysterical,” he said. “She needed a lot of help in dealing with it.”

Physicians from Childrens Hospital in Los Angeles, who were at the clinic for their monthly visit, were supportive. But the Salgados and many other parents regularly travel to Los Angeles hospitals for chemotherapy, support groups and other treatment for their children.

“There are enough kids here where we should be taking care of our own,” said Myra Saltoun-Moran, a psychologist who recently started a local bilingual support group called Parents Against Cancer, also known as Padres Contra el Cancer. “Slowly but surely we’re moving in that direction.”

Children’s Medical Services, which is funded by the state, offers financial assistance for low-income families. The local chapter of the American Cancer Society helps pay gas expenses for trips to Los Angeles and has 25 volunteer drivers who provide transportation within the county.

And Saltoun-Moran, who spends one day a week at the cancer clinic, is working with Landon to raise funds for a monthly support group for children with cancer and their parents. The clinic also arranges trips to Camp Good Times in Malibu, a free camp that draws cancer patients from throughout Southern California.

“The kids here are so isolated that the camp gives them a chance to meet other kids with cancer in a positive environment,” Saltoun-Moran said.

In the east county, Westlake Medical Center is planning to open its Comprehensive Cancer Center in September.

Although there will be no pediatric oncologists on staff, the center will specialize in bone marrow transplants, which leukemia patients often require. Children with other types of cancer will be referred to Cedars-Sinai Hospital in Los Angeles.

In some cases, parents who can’t find the local support they need seek it on their own.

Annie Luftenburg of Ojai needed money for a liver transplant for her 14-year-old son Aaron Clement, so she contacted a national liver transplant organization.

The group helped Luftenburg organize a local fund-raising drive that amassed more than $100,000 in donations. When a suitable liver was found in February, the funds paid for Aaron’s surgery and her son’s cancer-ridden liver was replaced with a healthy one.

“When my son was sick I didn’t think about county lines or any other type of boundary,” Luftenburg said. “All I knew was that I needed to help him and I was willing to do whatever had to be done to make that happen.”