Resources and information for parents of children with cancer . . . by parents of children with cancer.

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Activism/Advocacy

Watching your child undergo treatment for childhood cancer is not easy. One reaction of many parents is: we have to do something about this awful disease!

What can we do?

As the editor of these pages, I realize that each parent will be inclined or able to help to a different degree and with different abilities. Whatever anyone can contribute in whatever manner will help, and remember, sometimes just sharing your experiences with other people will help, by making another person aware that childhood cancer does happen and is a real problem.

2014 update: Childhood cancer support/awareness groups have formed alliances. Great news!

Alliance for Childhood Cancer and its listing of member organizations

Coalition Against Childhood Cancer (CAC2) and its listing of member organizations

Awareness. Childhood cancer is not all that uncommon. The public needs to be aware that childhood cancer occurs in 1 in every 330 children by the age of 19, and that childhood cancer has not yet been "cured". Awareness will hopefully lead to increased private donations as well as increased governmental funding of childhood cancer research. For your own information and if you need this information to include in the literature you are preparing for an awareness event or fundraiser, I've gathered childhood cancer statistics (and links to references) on a ped-onc page:

Legislation. Be aware of legislation and write our representatives when appropriate. (CureSearch and ACCO, both below, often alert us when issues are at hand.)

Donations. If you want to know something about the financial situation of a charity, go to:

Causes of cancer. Work with etiologists to determine the environmental causes of childhood cancer. Take part in and encourage surveys and childhood cancer registries. Recognize clusters of childhood cancer that should be investigated.

Early diagnosis. Most childhood cancers will be more easily treated and cured if it is diagnosed early. But early diagnosis is not always the case. When I first signed on to the Ped Onc listserve, I was amazed by the diagnosis stories as new members signed on and introduced themselves. I realized that my own son's swift diagnosis was rare. I read story after story of cancer, misdiagnosed and instead attributed to a common childhood complaint or behavioral problem. These parents were told by their physicians: "She loses her balance because she has a sinus infection"; "He's pale because it's winter"; "If she's irritable and not eating you must improve your parenting"; "It's just an ear infection, I'll write a prescription for antibiotics." Instead of receiving treatment, these children were sent home while the cancer in their bodies divided and grew. By the time they were correctly diagnosed, often the children were desperately ill and rushed to the hospital. The treatments began even though it was difficult for their bodies to tolerate the essential chemotherapy demanded by their illnesses.

I was so affected by these stories that I gathered the writings of many parents into the "Signs of Childhood Cancer". If enough interest is generated, these "signs" could be produced as a small booklet. A short list of the signs is available as a printed business cards. Also in the works is a poster which would be distributed to pediatricians' offices.

Cooperation. Work cooperatively with and be aware of all childhood cancer interest groups. The next section includes a list of childhood cancer organizations.

Awareness Organizations

There is a plethora of organizations, small and large, that work to raise awareness for childhood cancer and to advocate for children who have or had cancer. Most of these organizations also help cancer families in one way or another. ACCO is another large and influential awareness group; it is founded and run by parents of children who have or had cancer. Two other noteworthy organizations are Alex's Lemonade Stand and PAC2.

The next link takes you to my grand listing of all organizations that are concerned with childhood cancer. Listed are professional societies, as well as support and fundraising organizations.

A Plethora of Childhood Cancer Awareness Projects

General Disclaimer

These pages are intended for informational purposes only and are not intended to render medical advice. The information provided on Ped Onc Resource Center should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you suspect your child has a health problem, you should consult your health care provider.

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