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Importance of Support Services

By Wade Iwata
Friday, April 6, 2012

In a recent study in the New England Journal of Medicine, a Swedish study showed that people who were diagnosed with cancer were more likely to die from suicide or heart attack then people who are not diagnosed with cancer.  While these risks returned to normal levels a year after diagnosis, this research indicates a need for support services and programs for people who are newly diagnosed with cancer or other life threatening illnesses. 

When a family hears their child has a brain tumor, many emotions run through everyone’s mind.  What is the prognosis?  Are there treatments to cure this illness?  Will the child survive?  How will this affect the child?  Many other questions are also asked and for the most part, many of these questions and concerns are answered and attended to by the medical team treating the child.  However, for many families facing a pediatric brain tumor diagnosis, isolation, fear, and anxiety are all common concerns and areas that can be left unaddressed.   Reaching out to support organizations, hospital staff, and friends and family can help to address the emotional needs that often go by the wayside in the beginning phases of treatment.  Below are some tools to help ensure your needs and the needs of others affected by a pediatric brain tumor are being addressed.

1. Ask to speak with a social worker at the treatment facility.  Social workers are available at most treatment facilities and are available to talk to you and your family about any concerns or issues that may be surfacing following the diagnosis. 

2.  Connect with another parent or family who has experienced something similar.  This can be done by calling CBTF at 866.228.4673.  We have a large network of trained parent, survivor, and bereaved mentors who are able to talk to families and offer a perspective that only another person in a similar situation can offer. 

3. Seek information and resources that are reliable.  CBTF offers our Resource Guide, which has recently been updated and is available free of charge.  Please contact us to request your copy.  Additionally, many families seek information from a variety of other sources, and while some go online, many of the stories and information that is found there can be unreliable and scary.  Here are some reputable websites for online information:  National Cancer Institute –  CureSearch –  Children’s Brain Tumor Foundation –

4. Ask for help.  By reaching out for whatever support you may need at this time, does not make you “weak” or “a burden” to others.  Supporting yourself helps to ensure you can be there to help others.  CBTF social workers are available to address a variety of needs and concerns.

For more information on CBTF services or to reach a CBTF social worker, please contact us at info@cbtf.orgor 866.228.4673.

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