Program to Target Young Cancer Victims : Counseling: The free support group, to begin in January at the Wellness Community, will serve patients ages 14 to 20. It is the first of its kind on the Westside.

Diagnosed with leukemia and cancer of the blood (T-cell lymphoma) two years ago, 14-year-old Sandor Bodo has become a kind of involuntary expert on pain management.

“Spinal taps aren’t painful for me anymore, because I learned this relaxation technique from a friend who taught me to put a pillow at my stomach and curl your body around it,” said Bodo, whose cancer is in remission. “Then you can’t even feel it. My friend Nada was afraid of getting a spinal tap, so I helped her go through it because I know how it feels. She came out after her spinal tap and she was smiling. It makes me happy that I can help.”

Hard-won words from the prematurely wise.

The exchange of support between Bodo and his young friends diagnosed with cancer is an example of the type of peer support that the creators of the Young People’s Participant Group hope to inspire.

The effort to establish the pilot program for adolescents at the Wellness Community-Westside began when a $143,000 grant was donated by the Weingart Foundation to Wellness Community-National, a nonprofit organization that offers support groups run by licensed psychotherapists for cancer patients and their families, said center founder Harold H. Benjamin.

The foray into free psychosocial services for non-adults represents a shift in the type of programming that the decade-old center offers, an adjustment that has required considerable preparation and training for Wellness Community therapists under the aegis of UCLA child psychiatric specialists.

Benjamin said the Wellness Community-National had wanted to start a program for young adults since its inception, but the undertaking was too expensive. He was encouraged to launch a program last year after Sol Price, the founder and owner of the Price Club, suggested he go to the Weingart Foundation for funding.

He “called me and asked me to come visit him,” said Benjamin, who recently sold 20,000 copies of his book “From Victim To Victor” to Cerenex, a pharmaceutical company that distributes the book to cancer patients free of charge through oncologists and other physicians. “He had a grandson who was 11 that died of cancer and wanted to know why we didn’t have any programs for kids. He is on the board of trustees for the Weingart Foundation and suggested we go to them for funding to start a program.”

The Weingart Foundation is a private philanthropic organization in Los Angeles geared toward funding projects that benefit children. The foundation’s grant is a one-time-only start-up donation.

Although there already are two participant groups in the area for youths with cancer--Teen Impact at Childrens Hospital in Los Angeles and Vital Options in Studio City--the pilot program at Wellness Community would be the first “community of ongoing psychosocial care” for teen-agers who have cancer or have survived cancer. It will also be the first participant group for cancer-stricken teen-agers available on the Westside.

Young participants will also be invited to take part in an array of seminars available at the Wellness Community, including classes on techniques in relaxation, visualization and nutrition along with social events such as potlucks, joke-fests and holiday celebrations.

Scheduled to start in January with two groups of 12 teen-agers aged 14 to 20, the Young People’s Participant Group will convene weekly for about a year, Benjamin said. There will also be groups for parents.

At the year’s end, the pilot program will be evaluated by Margaret Stuber, an assistant professor of child psychiatry at UCLA who specializes in treating children with catastrophic illness. Benjamin said it will then be fine-tuned before being implemented at 14 Wellness Communities nationwide, including centers in the San Fernando Valley, Redondo Beach and Pasadena.

Undoubtedly, coming of age can be tumultuous for many youths. Stuber says that having cancer during this stage creates a kind of Gordian knot, where the adolescent struggle to separate from parents is exacerbated by the parents’ simultaneous instinct to protect their child.

“The adolescents feel like they are too old to have parents making decisions for them, yet they are too young to make medical decisions,” said Stuber, who is a consultant on the project. “Hopefully, the parents work with their children on that. And it’s a problem for the parents too, because they have to decide how much to be involved with their child’s body, and it might not be appropriate.

“Sometimes a doctor looks at the parents when asking the adolescents how often their bowels moved, something parents haven’t dealt with since their child was 3. It’s important for parents to have some distance.”

The group is based on similar support programs for adults. Stuber said it is primarily aimed at giving young patients the opportunity to be part of a group in which others their age are dealing with the same problems.

Stuber added: “Adolescents don’t like to listen to adults if they don’t have to, so this gives them a chance to compare notes on how to deal with their cancer or how to deal with your hair falling out or how to deal with gaining weight from steroids. How do you dress, what do you wear on your head, and also what have you done about telling people about your illness at school? How do you catch up on your schoolwork when you fall behind?”

Those are questions that plague Bodo, who is undeniably more mature than his 14 years because of his illness, but who still wrestles with the concerns particular to his age group.

“My hair didn’t all fall out during treatment,” said Bodo, who would like to join the Wellness Community group. “You know how Homer Simpson has a few hairs on his head? It’s exactly like that. I told everybody that I cut my hair often.

“This girl in one of my classes said, ‘When you cut your hair last time, you got some bald spots.’ What do I tell her? Do I lie? I’m afraid to tell another friend because I am afraid that he might not be my friend anymore or that he might ask me why I didn’t tell him before. It’s horrible.”

Undoubtedly, the difficulties posed by living with cancer are compounded by adolescence.

“Adolescence is hopefully a time when you try to make the world a better place, thinking that the adults screwed it up,” Stuber said. “Having cancer at that age can make you feel powerless, and it’s (the stage) when you should be defining your role in life and how you want to fit in.”

A big question for adolescents with cancer, she said, is “Am I going to be alive?”

Stuber’s research based on the pilot group will examine whether or not the group helps youths with cancer improve the quality of their lives, enhance recovery and make traditional life choices their peers make. She added that recent research has found that survivors of childhood cancer choose to live their lives differently from their peers.

Kathleen Ruccione, a nurse at Childrens Hospital in Los Angeles and a public health expert, has completed some of the most recent research on children with cancer. She found that childhood cancer survivors are less likely to marry and have children than their peers and that they worry that their children might not be healthy. Ruccione also found that four of 10 survivors reported physical or emotional problems because of their cancer histories. Six of 10 reported they asked the question “Why me?”

That is a question that Bodo concedes he has wrestled with. And like many cancer survivors who subscribe to the Wellness Community philosophy, Bodo, an Encino resident who attends Santa Monica High School to be closer to UCLA Medical Center, where he receives treatment, has found his silver lining.

“I understand why (God) gave it to me,” he said. “It was that hurricane in Kauai.”

His family had made a down payment on a house on the island but had to back off from the purchase when Bodo was diagnosed.

“We might have been there when that disaster hit.”