Even though childhood brain tumors are somewhat rare, when your child is diagnosed with a brain tumor it isn't rare at all and it is beyond devastating. You may be so confused and distraught that you can't even begin think about where to go for help. I can assure you though, that families going through this heartbreaking experience will want and need and probably crave plenty of helpful and supportive assistance.
Sadly, this time friends and relatives won't be equipped to provide all the help and support that will be needed.
In times like these, I cannot stress how important it is to take advantage of the hospital's social worker who can connect you to local agencies, assistance, and support groups that you never even knew existed because you never needed them before! Don't overlook local resources for fundraising in your own community like the Rotary Club, Kiwanis Club, and your neighorhood churches. You'll also find help, information, and support specifically set up to assist and inform families who have children with brain tumors online.
My three favorite online webites for finding support and resources are:
Pediatric Brain Tumor Foundation
According to their website, the The Pediatric Brain Tumor Foundation is the world's largest nonprofit funder of childhood brain tumor research. They serve the more than 28,000 children in the United States who are living with the diagnosis of a brain tumor. Their programs include free educational information about brain tumors, college scholarships, Ride for Kids motorcycle charity events and Starry Nightwalk/runs.
Children's Brain Tumor Foundation
The Children's Brain Tumor Foundation is a non-profit organization founded in 1988 by dedicated parents, physicians and friends. Their mission is: to improve the treatment, quality of life and the long term outlook for children with brain and spinal cord tumors through research, support, education, and advocacy to families and survivors.
The Childhood Brain Tumor Foundation
CBTF is an all-volunteer organization founded by families, friends and physicians of children with brain tumors. Their mission is to raise funds for (pediatric) scientific research, to heighten public awareness of this more devastating disease, and to improve prognosis and quality of life for those that are affected. They are determined to find a cure and offer hope to parents facing heartbreak. At these online resources you can:
• Connect with other families dealing with the same type of brain tumor.
• Read about other families' brain tumor stories and share your own story.
• Find out about events and fundraisers.
• Locate and apply for financial aid.
• Get medical information about your child's particular tumor.
• See what research is going on that may be of benefit to your child.
• Listen to webcasts and presentations.
• Locate support groups.
• Join online communities.
• Find social work support.
• Apply for college scholarships.
• Get hooked up to clinical trials.
Financial aid may be available from the following agencies:
• American Cancer Society
• Cancer Care
• National Children's Cancer Society
• Supplemental Security Income (SSI) In the US.
This is by no means an exhaustive list of helpful websites and resources. They are however, a great place to begin your own research. If your child is going through the devastating experience of battling with a brain tumor, I urge you to start searching and researching online for yourself. See what's available out there for you particular needs.
Research your options thoroughly and gather all the information, emotional support, and financial assistance that you can get your hands on.
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