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In Treatment

National Association for Proton Therapy

October 20, 2011
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...

Brain Tumor Survivor Late Effects Clinics

September 1, 2011
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...

Medulloblastomas Defined

August 22, 2011
What is a Medullablastoma?

Craniopharyngioma Defined

August 22, 2011
What is a Craniopharyngioma?

Optic Nerve Glioma Defined

August 22, 2011
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...

Brain Stem Gliomas Defined

August 22, 2011
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,...

Ependymomas Defined

April 18, 2011
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...

End to Rescission, and More Good News

May 5, 2010
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...

Information and Financial Aid Resources

April 14, 2010
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...

Follow-Up Treatment and Rehabilitation

December 3, 2009
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...

Siblings

December 2, 2009
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...

Legal Protection of Children’s Educational Rights

December 2, 2009
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.

When to Call Your Child’s Doctors

December 2, 2009
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...

Your Child's Medical Team

December 2, 2009
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...

Advice for Dealing With Your Insurance Company

December 2, 2009
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...

Outline from Elizabeth Klein - 2004

November 17, 2009
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...

Returning to School

November 12, 2009
“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...

Education

November 12, 2009
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.

Parents, Marriage, and Family

November 10, 2009
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...

Going Home

November 10, 2009
Preparation and Transition When to Call Your Child’s Doctors Medical Expenses, Insurance, and Financial Assistance Nutrition Changes in Physical Ap

Nutrition

November 10, 2009
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.

Medical Expenses, Insurance, and Financial Assistance

November 10, 2009
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...

Preparation and Transition

November 10, 2009
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

November 10, 2009
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...
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