As a society, people tend to focus on things that are out of the norm, trends or large numbers of something. The most or largest of something tends to get a lot of attention. Ironically, there is a statistic that should get a lot of attention, but does not: Worldwide, nearly 250 children die from pediatric cancer every single day.
Cancer is the number one disease that kills children. It is the second leading killer of children, second only to accidents. Pediatric cancers kill more kids each year than asthma, cystic fibrosis, diabetes and pediatric AIDS combined. In America over 15,000 new cases of cancer are diagnosed each year. However, when it comes to funding for research or clinical trials, childhood cancers rank near the bottom. A few years ago the National Cancer Institute gave merely $26 million for clinical trials and research of pediatric cancers, as opposed to $254 million for AIDS related cancers and $584 million for breast cancer.
Breast cancer survivors have done an excellent job with awareness and marketing. There are many foundations, walks, runs, colleges and the NFL who have joined the efforts to help find a cure. Their reach has gone as far as high school sports teams and elementary schools that are in on this massive marketing effort.
“It is a bit strange to me that high school and elementary students are talking about breast cancer,” said Stephen Havertz, LCSW, Grief Counselor and author of the new book, Dragonfly Wings for Emmalee. “Children should be focused on issues that are more age specific. I get it. Breast cancer affects the whole family and there are teachers or PTA members who are passionate about breast cancer, but maybe it is time for a shift in focus.”
It seems that many foundations and charities these days are spending more money on administrative costs than actual research or clinical trials. When a CEO of a foundation makes over $2 million, it warrants investigation as to where the funds are really being spent. According to a Huffington Post article dated May 19, 2015, four charitable organizations were under investigation for misleading donors and stealing nearly $200 million. These four charities are the Cancer Fund of America, Cancer Support Services Inc., Children’s Cancer Fund of America and The Breast Cancer Society Inc.
Last week in the news, the nation saw the tragic images of a young refugee boy’s body being pulled out of the ocean on a Turkish beach by a police officer. As heart-breaking as it was to see, this scene plays out over and over every single day in hospitals or homes as parents and families watch their children die from this horrible disease.
In 2009, Stephen Havertz lived out a nightmare as he sat helplessly on the sofa in his home as his little 9-year-old daughter, Emmalee, took her last breath. The year prior to that, he and his wife watched Emmalee go through multiple rounds of chemo therapy, emergency surgery resulting from the chemo eating holes in her intestines, long hospital stays, countless visits to the doctor and other horrors. His story is outlined in his new book entitled, Dragonfly Wings for Emmalee.
The book, Dragonfly Wings for Emmalee, is much more than just a synopsis of her life and death. It is a combination of storytelling and therapy. “I am a mental health therapist and I add my personal and professional insights into this disease process, along with grief and loss issues in the book,” says Havertz. “People who read it find it healing.”
“Children who have cancer, and families who have suffered along with them, need to know that we don’t just talk about this disease with tenuous strained speech. We need to be shouting on our housetops that we demand a cure. We need to demand that instead of spending millions on political campaigns we should be funneling that money into finding a cure for pediatric cancers. If we had taken pediatric cancers seriously 20 years ago my Emmalee might still be alive. We have eradicated polio, measles and many other diseases. It is time to get rid of cancer,” proclaimed Havertz.
It is time to make childhood cancers a bigger priority. Spending on childhood cancers must increase from the measly $26 million. “We plead with all of those people who care about children to make their voices heard. Please contact your local representatives and ask that they make pediatric cancers a top priority,” stated Havertz. “After all, children are the future of this great nation. They deserve more.”
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