Studying the lingering effects
With its new clinic and research efforts in progress, the Dana-Farber team is gathering information on survivors' long-term mental and physical complications in a systematic way. Its goal is to help both patients and caregivers, now and into the future.
"We hope our work can become a model to guide development of comprehensive, multidisciplinary services for young survivors at other institutions as well."
— Tony Meyer, PsyD
"This may allow us to change our current therapy and avoid these problems," Turner predicts. For example, a clinical trial at DFCI is now evaluating the use of chemotherapy injected directly into the spinal fluid as an alternative to irradiating the entire brain and spine of young brain tumor patients. Adds Kieran, "By working to understand these issues, we hope to improve the quality of life for patients here, as well as around the world."
In some cases, the consequences of treatment are predictable, giving parents a head start on preparing for the difficulties ahead. Robin Plumer, mother of Arianne Del Rios, says she took steps to adjust to her daughter's likely disabilities. "I would break down instructions into small sentences that she could comprehend," says Plumer. "I knew what to watch for."
The aftereffects depend in part on the tumor's location and how much of the brain was treated with radiation. Justin Ternullo, 20, of Assonet, Mass., had surgery when he was 10 to remove a life-threatening tumor buried in his brainstem. He had been diagnosed after complaining of headaches and blurred vision. The surgeons couldn't remove the entire tumor, and when it quickly began growing again, the boy underwent whole-brain radiation that is largely responsible for the problems he battles today.
Physically, Ternullo is short for his age, and thyroid damage has caused him to gain 80 pounds in the past two years, says his mother, Maria. His cognitive challenges have an irregular pattern; he has great difficulty with math, but his memory for verbal information is excellent. When it comes to inferring a big picture from assorted details, Ternullo may stumble if it's too abstract. And "if you joke with him, he doesn't realize it," his mother adds. He is also painfully aware that he's on a more isolated track socially. "His friends are growing and moving on," she attests, "and he's staying the same."
According to Meyer, the children who were older when treated are more likely to recognize their deficits. "They remember how they were able to play baseball and now can't, or formerly made the honor roll but now have trouble processing basic information."
Ternullo, who is attending Boston College this fall, has received brief psychological counseling at Dana-Farber, as well as educational help through the Bernon Family School Liaison Program.
Justin Ternullo (right) gets an explanation from psychologist Tony Meyer, PsyD, about the long-term effects of his brain tumor treatment.
For longer-term treatment, psychosocial staff at the Institute can help families find resources in their own communities. Parents, says Meyer, often need to talk about their frustration and (sometimes) guilt prompted by the changes in their child brought on by tumors or medical care. "They feel they have fought so hard to get the young patient through the treatment," he observes, "and now they're facing a new dilemma: dealing with the medical, psychosocial, and neurocognitive consequences."
Despite all its efforts, Dana-Farber wants to do even more for these patients, and the expanded program is a big first step. As it develops, says Meyer, "We hope our work can become a model to guide development of comprehensive, multidisciplinary services for young survivors at other institutions as well."
