Saying 'You're cured' is not enough
Addressing the needs of childhood brain tumor survivors
By Richard Saltus
Christopher Turner, MD (left), shows brain scans to Chris Johnson, who was successfully treated for a childhood brain tumor.
She's a model of hard work and diligence, yet for Arianne Del Rios, a petite, soft-spoken 7th grader at Trottier Middle School in Southboro, Mass., daily lessons are a struggle. She reads aloud beautifully, her mother says, but she may not grasp the main points. She excels in math and art, but has trouble with verbal matter. "If I'm studying for a test," Del Rios observes, "the information goes right through my brain and I don't remember it." Her frustrating learning difficulties stem from damage to certain areas of her brain caused by eight weeks of radiation treatment for a tumor when she was 4 years old. Surgery and radiation destroyed the dangerous tumor, and for that she and her parents are forever grateful.
But now, Del Rios and her family are confronting the steep costs of medical success, as are many other families of childhood brain tumor survivors. Children are being cured more often than in the past, at a success rate averaging 50 percent. Yet in the years that follow, patients may experience mild to severe memory loss, learning disabilities, lowered IQ, behavioral and personality problems, seizures, slow growth, weight gain, and sterility.
To meet these challenges, Dana-Farber has launched a new research program to assess the quality of life for pediatric brain tumor survivors and test different strategies for helping them cope.
"We're hearing from parents that they are very appreciative of what's been done for them here, but now they're trying to find a way for their children to have meaningful lives," says Tony Meyer, PsyD, the program's assistant director of quality-of-life research.
The side effects of brain tumor treatment have been apparent for some time, but in the past parents and doctors alike were mainly concerned with saving young lives. Now, survivors and their families want help overcoming obstacles to their life journeys. "It's a club you don't want to belong to," attests Maria Ternullo, whose son, Justin, is battling complications from brain tumor treatment nine years ago.
"Saying 'You're cured' is not enough," says Christopher Turner, MD, director of outcomes research for Pediatric Neuro-Oncology at Dana-Farber. "There are a host of issues and needs not being met among survivors of pediatric brain tumors. Dana-Farber is now focusing on these needs."
A pediatric neuro-oncologist, Turner was recruited to DFCI by Mark Kieran, MD, PhD, to lead the quality-of-life program. Kieran heads the Stop & Shop Family Pediatric Brain Tumor Clinic, a partnership between the Institute and Children's Hospital Boston that bears the name of the supermarket chain that has long supported it.
Dana-Farber has launched a new research program to assess the quality of life for pediatric brain tumor survivors and test different strategies for helping them cope.
Parents of these young patients have told DFCI researchers that their children need more help managing school, regulating their behavior, getting jobs, and generally becoming rehabilitated so they can be productive members of society.
The new effort is an extension of programs already in place at Dana-Farber for young brain tumor patients. These include a weekly multidisciplinary clinic, psychological consultation services, and the Bernon Family School Liaison Program, which helps teachers and school administrators better accommodate such patients (see related article, School Liaison Program offers critical lessons).
In the works is a new clinic for brain tumor survivors who are several years past treatment. To be located in the Jimmy Fund Clinic after its upcoming renovation, the program is modeled after — and was developed with help from — the Institute's David B. Perini, Jr. Quality of Life Clinic, which serves survivors of all childhood cancers.
Staffing the new clinic will be an interdisciplinary team of neuro-oncology physicians, psychiatrists, psychologists, social workers, physical therapists, resource specialists, complementary medicine specialists, and others.
- Next: Refining the treatments
- Page: 1 | 2 | 3
