Stanford Medicine Newsletter Updates For the Local Community

 

H.E.A.L. helps children make the move back to school

Elle Billman

   

When Dawn Billman speaks of the leukemia that ravaged her 3-year-old daughter, she praises the medical care that saved her child’s life. A decade later, the cancer in remission, she credits an innovative program at Lucile Packard Children’s Hospital with fully integrating her daughter into a future she might not otherwise have had.

Elle Billman, now a straight-A student at Palo Alto’s Jordan Middle School, didn’t always have an easy time in academics, although initially neither she nor her parents understood why.

“In kindergarten, we could see she had all the precursors for reading,” said Billman. “But something was wrong; she wasn’t making the connections. I remember looking at her work and it hit me—she was getting worse. She had just finished chemotherapy, which had lasted two and a half years.”

During a routine checkup at Packard Children’s a few years later, Billman’s frustrations poured out. She told of the hours of tutoring, the private testing and the fruitless exchanges with teachers and school administrators in an effort to get her daughter help. By then, Billman had learned that, although each child is different, research on the effects of chemotherapy in young patients pointed to an often-deleterious effect on learning skills. Private tests had labeled Elle’s problem “acquired dyslexia,” a direct effect of chemotherapy drugs.

Billman was directed to Jeanne Kane, an education specialist who coordinates Packard Children’s H.E.A.L. program; Kane went to work explaining to the child’s teachers, guidance counselors and principal how they could help Elle learn best. She shared research findings about how the drug methotrexate, used in the treatment of leukemia, can affect developing young brains.

“Fifteen years ago, you didn’t send kids back to school who were on chemo,” said Kane. “But school is their normal. That’s where you want to place them.”

Today, more children are surviving life-threatening illness. Children who have survived or continue to battle a chronic illness often deal with the cognitive effects of their illness and treatment. H.E.A.L., which stands for Hospital Educational Advocacy Liaisons, is the only program of its kind in Northern California and one of only a handful in the country that specialize in helping children reenter the educational system after a hospital stay. Launched in 2003, the program is free and serves about 400 Packard Children’s families a year, working across all diagnoses and at every clinic in the hospital.

“It’s really family-centered health care,” said Dawn Billman. “What they’ve done for us is amazing.”

Kane’s duties range from speaking directly with educators and administrators to coordinating individual educational programs and arranging special diagnostic tests. She also collaborates with an educational specialist, a neuropsychologist and an administrator who work in the program on a part-time basis.

“This is as complex, if not more so, than the medical system,” Kane said. “So often nobody at school understands what is going on with these kids. Parents are tearing their hair out because it takes six hours to do homework.”

When he was 8, Ben Fulanovich had emergency surgery to remove a malignant tumor from the base of his brain following a year of vague, undefined symptoms. Through the radiation, chemotherapy, rounds of growth hormone therapy and surgery, Ben’s mother, Gloria Seid, said Kane was there, helping to set up an individualized education program, arranging diagnostic educational testing, speaking with teachers and being a friend.

“She’s all heart,” Seid said. “If it weren’t for her, I don’t know that we would be where we are.”

Ben, now 18, has just entered his freshman year at California State University of Monterey Bay, where he plans to study computer engineering. Elle Billman is now a member of the Santa Clara Aquamaids, the reigning national champion synchronized swim team.

“One family told us that we really do heal families,” said Kane. “We hope to continue this healing for a long time to come."

If you would like to help fund the H.E.A.L. program at Packard Children’s, please make your donation online at supportlpch.org.

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