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When kids are on chemo University team helps cancer victims returning to the classroom
April 27, 2006 Anthony Persaud, a cancer patient at Stony Brook University Hospital , reads James Bounces Back with author Debra Giugliano, left, and her colleague, Paulette Walter. The pair are founders of the hospital's school re-entry program for pediatric oncology patients. A school quiz calling for words that start with "c" might generate "cat," "capital" or "courage." But not "cancer." That word can be just as unreal to students who, like adults, are often afraid to talk about it. For seventh-grader Anthony Persaud, a diagnosis of lymphoma halted the ordinary. But his remedies include the rigors of cancer treatment, along with an active plan to return to school. By the time he returns, his waiting classmates and teachers will have been educated about his illness and recovery, thanks to a school re-entry program. School — for children with cancer — is like spring. It comes after harsh months of hospitalization, and more months of outpatient treatment. Medicine, needles, scans, injections, chemotherapy and radiation are routine, rather than classmates, cafeteria buddies and the latest school news buzz. Persaud's caregivers understand the importance of a place at school. A team of higher education health care professionals at the State University of New York's Stony Brook University Hospital on Long Island operate a School Re-entry Program. They specialize in pediatric oncology and hematology, and helping children cope. "We follow 400 patients in our practice," said Debra Giugliano. A pediatric nurse-practitioner, she is a member of United University Professions, which represents academic and professional faculty at the State University of New York. Inspired by a similar re-entry program at SUNY's Upstate Medical Center in Syracuse , Giugliano and colleague Paulette Walter decided to help young patients at the hospital whose lives have been interrupted by cancer. Students with cancer have to deal with that giant "first day of school" all over again — only this time with some alterations. Walter, a child life specialist and UUP member, notes that students worry about body image, which can include puffiness and hair loss. "Kids on chemo are on meds that can affect their handwriting, cause fatigue and nausea," said Giugliano. At one school, a bald, chemo-treated student was "devastated" when forced to remove his hat to comply with a 'no-hats' policy. That's where this hospital team comes in swinging. Job one is educating the educators. "With all pediatric cancers, the cure rate is close to 80 percent, so it's essential they can get plugged back into school so they don't fall behind and face additional challenges," said Giugliano. A personal meeting at school is held with classroom teachers, art teachers, phys ed teachers, the school nurse, psychologist and the principal. They're informed about the returning student's medical, psycho-social and emotional needs. "We're the medical team; now they're the school team," said hospital liaison and child life specialist Nicole Gutman, a research foundation employee. Gutman notifies the school of the need to set up tutoring once a child is diagnosed with cancer. She is also the one who calls teachers to begin preparing them for a student's return. "We work with the medical team, school staff and contact family to try to coordinate that big day," she said. Educators learn that students can have delayed effects from cancer treatment years later. A student might not be able to remember a math concept, may lose the ability to concentrate and may not be able to process information well. Helping older students For cancer patients heading off to college, these specialists provide the same services by telephone through a contact person on campus. Documention is provided for medical treatment, allowable activities and needs. When the K-12 cancer patient returns to school, the hospital team shows up in class to roll out lively, informational presentations, take questions and clear the air about the kid with cancer. Among the common misconceptions, classmates often think they can catch cancer, so they won't drink from the same water fountain or invite the patient to parties. Classmates learn about cells, cancer and side effects. They laugh over pictures of patients who have created funky hairdos to deal with hair loss. Then Walter gives them an art project. "We focus on what they think a hero is," said the former teacher. She has students draw portraits of heroes. Walter shows them another one when she pins a "My Hero" medal on the returning student. — Liza Frenette |
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