We often hear questions pertaining to proton therapy and therefore we wanted to provide members of the CBTF community with a resource to provide you with additional information on proton therapy. The National Association for Proton Therapy (NAPT) is a non-profit organization supported by...
The following is a list of comprehensive late effects clinics. These clinics follow the Children’s Oncology Group (COG) long-term guidelines for survivors of childhood, adolescent and young adult cancer. They address the medical, educational, and quality of life issues faced by brain tumor...
What is Optic Nerve Glioma?A glioma is a tumor that grows from glial cells, which are supportive cells in the brain. Optic nerve glioma grow specifically in the optic nerve which is the part of the brain that connects the eye to the visual center of the brain. Optic nerve glioma can...
What is a Brain Stem Glioma?A glioma is a tumor that grows from glial cells, a supportive cell in the brain. Brain stem glioma grows specifically in the brain stem which is the part of the brain that controls many of the body’s basic functions, such as motor skills, sensory activity,...
What is an Ependymoma?Ependymoma belongs to a group of brain tumors called gliomas. A glioma is a tumor that grows from a glial cell, which is a supportive cell in the brain. Ependymoma can occur in any part of the brain or spine, but most commonly occurs in the cerebrum, the largest part of the...
Americans are already starting to see the benefits of health care reform. The new law requires health insurance companies — starting in September — to end their most indefensible practice: rescinding coverage after a policyholder gets sick. In recent days insurers and their trade...
American Cancer Society
Phone: 800-ACS-2345
www.cancer.org
Association of Cancer Online Resources
www.acor.org
Brain & Neuro Surgery Information Center
www.brain-surgery.com
Cancer Care, Inc.
Phone: 800-813-HOPE
www.cancercare.org...
Initially, you or your child will be making regularly scheduled visits to the neurosurgeon or other specialists to follow up on his or her progress. Professionals affiliated with support services may be monitoring you at home to provide help, but there are still other experts who may have to be...
Parents whose child has a tumor are easily overwhelmed by everything that needs to be handled. They may be physically and emotionally drained from extended hospital stays and the intensity of caring for their sick child. Other children in the family may have unavoidably been deprived of...
There are laws to protect the rights of children who are left with learning disabilities, physical or health limitations that keep them from participating in regular educational programs.
It will help if you discuss ahead of time with your child’s doctors (and write down in your notebook) what signs and symptoms you might normally expect to see during your child’s recovery period. Collect prescriptions for all medicines you might possibly need. Ask the doctor what...
After the initial diagnosis of a brain or spinal cord tumor is made, you may need to consult other specialists and doctors, depending on the type of tumor and the treatments recommended. Together with you, these professionals will take a team approach and map out a general plan of care for your...
Educate yourself. Know about your child’s illness and why referrals to specialists are needed. You will sound knowledgeable and thus will be more likely to quickly get the assistance you need.
Get a copy of your policy and review it carefully. See exactly what services are covered...
Psychosocial Impact and Community Reintegration
Presented by Libby Klein
General concepts.
There are 26,000 brain tumor survivors in the USA today (CBTRUS)
According to the IOM report on childhood cancer survivorship “cognitive impairments such as learning disorders...
“Back to normal” means “back to school” for most older children. When your child returns to school, you want him or her to be treated as normally as possible. You will need the cooperation of both the school and the health care professionals working with your child. It is...
Cranial radiation, brain surgery, and some chemotherapeutic agents can compromise cognitive and/or sensory functions and may result in learning difficulties. Special education services may be appropriate for children whose brain tumor treatment seriously interferes with education and learning.
The tasks, obligations, and emotions related to having a child with a serious illness can strain even a strong marriage and family. If parents are divorced or separated, they will need to try to put their personal differences aside to help their child. Single parents may need even more support from...
Good nutrition is an important part of your child’s treatment. Try to deviate as little as possible from your child’s normal diet. Your child’s body needs to heal and gain strength in order to resume normal activities and undergo any treatments that may be planned.
Bills add up rapidly. Even if you have good insurance coverage, there will be nonmedical expenses such as phone calls, extra gas, tolls, meals away from home, child care, and lost wages. (Keep receipts—some of these expenses may be tax deductible.) It will be important that you receive...
Going home can be exciting and joyous for the whole family. It can also be a hectic, fearful, and anxiety-filled period. Both you and your child may feel apprehensive when leaving the security of familiar doctors and nurses, even though they are only a phone call away. All of these emotions are...
Clinical Trials/Protocols
Your child’s doctor or treatment team may recommend that you enroll your child in a clinical trial. This is a research study of new therapies (or experimental drugs and treatments). By studying a larger collected group of children in a protocol with very exact...
