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After Treatment and Survivorship

CBTF Family Newsletter

December 23, 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.  DECEMBER 2014CBTF Holiday...

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...

Driving Information

January 8, 2014
Whether you drove before you had a brain tumor or are getting ready to drive for the first time, you want to be sure you are ready. There are adaptations which can be made for vision impairments and there may be circumstances in which you are better off not being on the road. Sometimes, you 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...

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...

Educational Late Effects

April 10, 2013
Unfortunately, survivors of childhood brain tumors frequently develop problems in the areas of intellectual ability, academic achievement, memory, and attention. Although many different factors are probably responsible for these changes, including tumor location and surgery, age (younger than 7...

Medical Late Effects

April 10, 2013
Late effects span a spectrum from mild and easily treatable problems (such as an underactive thyroid) to, on rare occasions, serious and life-threatening problems (a second, new cancer).  One way to determine your risk for late effects is through the Oncolink Web site.  On the site, a...

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...

Utility Assistance

December 6, 2012
The following is a list of resources that can help with utlility assistance for certain low-income families. Campaign for Low Income Energy AssistanceProvides national assistance for energy needsNational Energy Assistance Director's Association: State Energy Assistance Directors...

2000 Teleconference: Returning to School after Treatment for Childhood Cancer

July 24, 2012
If you would like to hear a replay of the teleconference, click on the link at the bottom of this article. On Friday, December 8, 2000, CBTF collaborated with The Children's Cause and Cancer Care, Inc. on this topic.This seminar addressed the how tos of: 1) working with your school to get...

December 3, 2003 Teleconference Childhood Brain Tumors: An Update on Survivorship Question and Answers

July 24, 2012
December 3, 2003 Teleconference Childhood Brain Tumors: An Update on Survivorship Question and Answers Question: Can you comment on the issues related to seizure/anti-epileptic drug effects in regards to these cognitive (learning/processing) and school issues? How can you separate seizure/meds from...

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...

Survivors of Childhood Cancers Four Times More Likely to Develop Post-Traumatic Stress Disorder

May 5, 2010
The study focused on 6,542 childhood cancer survivors over 18 who were diagnosed with cancer between 1970 and 1986 and 368 of their siblings as a control group. The study found that 589 survivors, or 9 percent, reported significant functional impairment and clinical distress as well as symptoms...

Survivor

December 3, 2009
Who is a survivor? A person and their family are considered survivors is a survivor from the day of diagnosis.

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.

What Are Late Effects, and What Should You Know for the Future?

November 11, 2009
Late effects are new problems that can occur months to years after therapy has ended. Whether or not a child will develop a late effect depends on a number of factors. The most important of these factors include the type and amount of treatment an individual received (for example, radiation...

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