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There are many ways you can help children and their families get the care they need.
Specific treatment to cure ependymoma will be determined by your child's physician based on:
There are a number of treatments that your child's physician may recommend. Some of them help to treat the tumor while others are intended to complications of the disease or side effects of the treatment.
Treatment approaches include:
Surgery is usually performed first in order to remove as much of the tumor as possible. One of our experienced pediatric neurosurgeons will perform the operation and remove as much of the tumor as possible.
Endoscopic Third Ventriculostomy (ETV) or Ventriculo-peritoneal shunt (VP shunt)
When a tumor causes blockage of cerebral spinal fluid (CSF) flow, our surgeons may perform one of two procedures in order to relieve symptoms of hydrocephalus, the build up of fluid inside the skull.
Precisely targeted and dosed radiation therapy is used to kill cancer cells left behind after surgery. Your child may receive this treatment in order to control the local growth of the tumor. If an ependymoma has spread, your child's physician may recommend radiation to the whole brain and spinal cord.
Chemotherapy is a group of drugs that interfere with the cancer cell's ability to grow or reproduce. Chemotherapy before surgery may help shrink the tumor, making it possible to remove. The role of anti-tumor medications in treating ependymoma is actively being studied. New therapies are currently under investigation.
While chemotherapy can be quite effective in treating certain cancers, the drugs cannot differentiate healthy cells from cancer cells. Because of this, there can be side effects during treatment. Being able to anticipate these side effects can help the care team, parents, and child prepare, and, in some cases, prevent these symptoms from occurring.
Chemotherapy is systemic treatment, meaning it is introduced to the bloodstream and travels throughout the body to kill cancer cells. Your child may be given chemotherapy:
Ependymoma of the brain treated with complete tumor removal and radiation therapy to the tumor area can result in about a 50 percent cure rate. Spinal cord ependymomas are often easier to treat, and have an excellent prognosis. Metastatic, progressive or recurrent ependymomas are more difficult to cure.
Within the brain and posterior fossa, outcomes are best when the tumor can be completely removed surgically, and if high dose focal radiation therapy is given. For spinal cord ependymomas, a similar approach is used, sometimes with lower radiation doses. An ependymoma that has spread, or metastasized, may require additional whole brain and spine radiation therapy, depending on the age of your child.
Children treated for an ependymoma should visit a survivorship clinic every year:
A typical follow-up visit may include some or all of the following:
Through the Stop and Shop Neuro-Oncology Outcomes Clinic as Dana-Farber Cancer Institute, your child will meet with their pediatric neuro-oncologist and neurologist at the same follow-up visit.
We understand that you may have a lot of questions if your child is diagnosed with a brain tumor. Will it affect my child long term? What do we do next? We've tried to provide some answers to those questions in the following pages, but there are also a number of other resources to help you and your family through this difficult time.
Patient education: From the first visit through follow-up care, our nurses will be on hand to walk you through your child's treatment and help answer any questions you may have — How long will my child be in the hospital? How often will my child require follow-up? They will also reach out to you by phone, continuing the care and support you received while at Children's.
Parent to parent: Want to talk with someone whose child has been treated for a pediatric brain tumor? We can put you in touch with other families who have been through the same experience that you and your child are facing, and share with you their experience at Children's.
Faith-based support: If you are in need of spiritual support, we will help connect you with the Children's chaplaincy. Our program includes nearly a dozen clergy representing Episcopal, Jewish, Lutheran, Muslim, Roman Catholic, Unitarian and United Church of Christ traditions who will listen to you, pray with you and help you observe your own faith practices during your hospital experience.
Social work: Our clinical social workers have helped many other families in your situation. Your social worker can offer counseling and assistance with issues such as coping with your child's diagnosis, stresses relating to coping with illness and dealing with financial difficulties.
Click here for more information on our pediatric support services.
The majority of children and adolescents diagnosed with pediatric brain tumors will survive into adulthood. However, many of them will face physical, psychological, social and intellectual challenges related to their treatment and will require ongoing assessment and specialized care.
To address the needs of this growing community of brain tumor survivors, Dana-Farber/Boston Children’s Cancer and Blood Disorders Center established the Stop & Shop Family Pediatric Neuro-Oncology Outcomes Clinic.
Today, more than 900 pediatric brain tumor survivors of all ages are followed by the Outcomes Clinic, a multi-disciplinary program designed to address long-term health and social issues for families and survivors of childhood brain tumors. Some of the post-treatment services provided by the Outcomes Clinic include:
As a result of treatment, children may experience changes in intellectual and motor function. Among several programs addressing these needs are the School Liaison and Back to School Programs, which provide individualized services to ease children's return to school and maximize their ability to learn.
In addition to providing thorough and compassionate care, our Outcomes Clinic specialists conduct innovative survivorship research and provide continuing education for staff, patients and families.
To learn more about our services or to schedule an appointment, please click here or call us at 617-632-2680.
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”