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In Treatment

CBTF Family Newsletter

October 3, 2014
Children's Brain Tumor Foundations distributes an e-newsletter to our families to give updates on current happenings and to let you know about upcoming events and activities.  We also highlight patient, survivor and family accomplishments and blogs.  SEPTEMBER 2014Back to...

Camps and Wish Granting Organizations

July 16, 2014
The following are camps and wish granting resources that are offered to pediatric cancer survivors and their families.CampsCamp Mak-a-DreamCamp Mak-a-Dream offers a cost free, medically supervised retreat in Montana to children and families affected by cancer.  There are diagnosis and age...

Information and General Financial Aid Resources

May 8, 2014
The following is a list of organizations and government funded programs that offer information and support for families dealing with cancer.  They cover a wide range of needs including medical equipment coverage, costs of travel, utility assistance and more. Some of these are specific to...

Travel and Lodging

March 7, 2014
Air TransportationOccasionally children must travel great distances to receive appropriate, specialized medical care. Many airlines have courtesy fares for a child and accompanying parent. Social workers may assist you and provide this information, but it may be helpful to contact each individual...

More Specific Hints

February 28, 2014
Ask for unrestricted visiting hours for parents.Ask what accommodations the hospital provides for parents staying overnight, such as recliner chair-beds, toiletries and bathing facilities for caregivers, laundry facilities, meals for parents, and available refrigerator space.Take a proactive role...

Complementary Therapy and Healthy Eating

January 22, 2014
As a parent there may be times where you want more for your child than what is being offered by your child’s clinical team through standard medical care. When used in addition, or as a compliment to, traditional treatment and surgery, complimentary therapies and nutrition counseling may...

Legal Protection of Children’s Educational Rights

January 8, 2014
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.

Brain Tumor Survivor Late Effects Clinics

December 18, 2013
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...

JOURNALS

August 16, 2013
These publications are peer reviewed journals addressing various disciplines of clinical and psycho-social care of children and families, including those with brain tumors and cancer.  They are for both professionals and patient/caregiver audiences. Please note that most journals do not...

Support

August 14, 2013
The following are a list of supports by specific states and areas, as well as specific interenet support groups.

Parents, Marriage, and Family

April 10, 2013
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...

Siblings

April 10, 2013
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 emotional...

Advice for Dealing With Your Insurance Company

April 10, 2013
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 and how the...

Returning to School

April 10, 2013
“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...

Follow-Up Treatment and Rehabilitation

April 10, 2013
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...

Medical Expenses, Insurance, and Financial Assistance

April 10, 2013
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 all...

When to Call Your Child’s Doctors

April 10, 2013
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...

Preparation and Transition

April 10, 2013
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...

Nutrition

April 10, 2013
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.

Clinical Trials

April 10, 2013
Clinical Trials/ProtocolsYour 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...

Changes in Physical Appearance

April 10, 2013
For children (especially teenagers), self-esteem and self-confidence are often closely related to physical appearance. Changes in appearance may lead to an altered self-image.

The Parent as Advocate

April 10, 2013
An advocate is a person who speaks in support of, or pleads the cause of, someone else. You are the best advocate for your child. Sometimes your child’s voice will be heard only if you speak up.

Your Child's Medical Team

April 10, 2013
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...

Supporting Your Child

April 10, 2013
Just like their parents, children often feel emotionally stressed in the face of serious illness. Children’s—especially teens’—anxiety levels may already be high from whatever suffering the tumor has caused, from the loss of independence and physical ability, to pain or the...

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