Pediatric Brain Tumor Survivorship
The Stop & Shop Family Pediatric Neuro-Oncology Outcomes Clinic at Dana-Farber/Boston Children's Cancer and Blood Disorders Center helps patients manage the long-term effects of surviving a childhood brain or spinal cord tumor. It gives survivors and family members access to Dana-Farber's survivorship expertise, educational resources, and support groups. We offer a dedicated resource to address the unique needs of survivors of pediatric brain tumors.
When you visit the outcomes clinic, you can meet with specialists to address the medical, cognitive, and physical challenges of surviving a pediatric brain or spinal cord tumor. These challenges may include mild to severe memory loss, learning disabilities, difficulty with social adjustment, behavioral and emotional problems, seizures, slow growth, hormonal abnormalities, weight gain, and fertility issues, as well as a risk of second cancers.
You can be seen in the outcomes clinic if you were treated for a brain or spinal cord tumor at age 21 or younger, and you have been off treatment for at least two years. You do not need to have been treated at Dana-Farber/Boston Children's in order to be seen in the clinic.
Our Services
When you visit the outcomes clinic, our experts will work with you to learn about the challenges that you face, and find the resources and services that can help you overcome such challenges. At the end of your appointment, we'll give you a treatment plan, which is a summary of recommendations that can serve as a guide for living well and improving your quality of life. We offer:
- Access to a team of pediatric brain tumor specialists, including neuro-oncologists, neurologists, endocrinologists, psychologists, social workers, physical therapists, educators, genetic counselors, and more
- Education and support specifically designed for survivors of brain or spinal cord tumors
- Personalized information geared to adolescent and young adult survivors, including employment information, college resources, fertility experts, and help with relationships
- Support groups, opportunities to meet with other survivors and family members, and practical tools to help you transition to survivorship support
Research
The outcomes clinic puts a strong emphasis on research, using knowledge about past brain tumor care to minimize the consequences of current and future treatments. Our researchers are helping develop more effective treatments, while at the same time finding ways to combat the long-term side effects of cancer treatment. This is part of our overall effort to provide the best possible quality of life for all cancer patients — past, present, and future.
You may be eligible to participate in specific research studies, depending on your diagnosis and treatment. You can ask about such opportunities when you visit our clinic.
Education and Support
When you and your family members visit the outcomes clinic, you'll have access to a wide range of educational resources and support groups specifically designed for survivors of brain or spinal cord tumors. You'll also have the opportunity to meet with other individuals who face similar challenges. We cluster appointments together, so that survivors with similar diagnoses can visit us on the same day and have a chance to meet one another. If you wish, you can join in a group discussion about the challenges often faced by survivors of brain or spinal cord tumors.
Survivors of pediatric brain tumors can join our program called STEPS (Success Through Education, Psychosocial Support, and Socialization), which holds regular dinners where brain tumor survivors and their family members meet to discuss common challenges and strategies. We also host an annual symposium for patients and experts working to address common issues faced by brain tumor survivors as they transition from school to adulthood.
School Needs of Brain Tumor Survivors
Our School
Liaison Program supports the educational needs of children who’ve been
treated for brain tumors. It provides consultation regarding cognitive and
other late effects of treatment to help parents understand and advocate for
their child’s learning needs. The program also works with educators to help
them understand the late neuropsychological and other effects of treatment and
discuss services and strategies that help enable young patients to succeed in
school. School-age (K-12) patients who live within 60 miles of
Dana-Farber/Boston Children’s are eligible for services that include
psychologists’ attendance at school meetings. Telephone consultation is
available for patients living more than 60 miles from Dana-Farber/Boston
Children’s.
Webinar: In the one-hour webinar below, psychologists who lead Dana-Farber/Boston Children’s School Liaison Program discuss the special learning needs of children who’ve had brain tumors.