Two years ago I set about the task of writing Donna’s Cancer Story, a blog series devoted to my daughter’s cancer treatment. After being diagnosed with papillary meningioma, an aggressive brain tumor, Donna had 31 months of treatment before she died on October 19, 2009.
When I thought about how I could use my blog platform to raise awareness about childhood cancer in September (Childhood Cancer Awareness Month), the communion of 30 days in September and 31 months of treatment clicked. Light bulb. Each day in September 2011 I wrote about one month of Donna’s treatment.
It was a lot harder than I imagined it would be. In some ways, I am still reeling from the experience, as Donna’s story has defined me as a blogger and social media presence. Towards the end of the month, I started posting not first thing in the morning, but at 4 or 5 in the afternoon, and simply felt numb, as the reading and the writing and the reliving had become overwhelming. I wrote about the experience here.
My strategy about raising awareness for childhood cancer has not changed. I firmly believe that people respond and relate better to stories than statistics. When you know a child with cancer, everything changes. The realities of how poorly funded research is are a punch in the gut to any Cancer Parent (and governmental funding for childhood cancer research was lowered this year, thanks to Congress and sequestration measures). Other stats of significance focus on how archaic treatment modalities are, or how alarmingly high death rates are for certain cancers.
There is a false belief that with a 94% cure rate for the most common childhood cancer, leukemia (ALL specifically), this whole childhood cancer thing is a done deal. Tell that to the 6% of families who will lose their child to ALL. Or the 50% of families who will lose their child to a brain tumor. Or the 100% of families who will lose their child to DIPG, a particularly insidious form of brain cancer that targets children.
More children will die from cancer than any other childhood disease. That is fact. Despite that, the American Cancer Society will maintain that the numbers are not statistically relevant, as does the National Cancer Institute:
In the United States in 2007, approximately 10,400 children under age 15 were diagnosed with cancer and about 1,545 children will die from the disease (1). Although this makes cancer the leading cause of death by disease among U.S. children 1 to 14 years of age, cancer is still relatively rare in this age group. On average, 1 to 2 children develop the disease each year for every 10,000 children in the United States (2).
So 1-2 kids out of 10K are expendable, not worthy of the care, concern, or dollars of governmental cancer research entities. And that, my friends, is why I tell Donna’s story and why so many other Cancer Parents I know tell the stories of their children, both living and deceased. If we don’t tell then, who will?
Our children are not statistically insignificant.
Our children are just like yours, except they were unlucky enough to be diagnosed with a disease that does not rate high enough to merit research dollars or the attention of pharmaceutical companies looking to profit from the R and D of new treatment modalities. That is the stone cold truth, harsh as it is. And so, I tell Donna’s story, and in September, am humbled to host a month of other children’s stories told by their parents.
Please join me every day in September as I share Piper and Silas and Abby and Mia and Ryan and Cal and so many other children, 22 to be exact. Reading the posts, as they came into my in box, I was blown away. These are beautiful children, beautiful families. I know it is cliche, but I really did laugh and cry. I think you will, too. And like Donna did in 2011, these kids will teach you so much about life, and sometimes, about death.
And this is the part where I ask for a favor, or two to be exact. One is that you subscribe to my blog. By doing that, you won’t miss a single post, a single story, a single tear, or a single opportunity to be changed. You can subscribe here, and I promise no spam, just great and important content — stories, cause we all know they are more important than stats. It’s easy. Just enter your email address in the top box, then click the “Create Subscription” box below it. 1-2-3.
Secondly, I will offer a hug and kiss (virtual only, yo) to each and every one of you that pledges to share these stories. The reason Donna’s Cancer Story had such a profound impact is because of the generosity of the share and the “LIKE.” You did that, not me. By sharing the stories of these children and their families, with a literal click of a button, you are helping to raise awareness. There is a well known formula in cancer circles:
Awareness + funding = cure.
We gots to be aware before the funding will come, and there is no cure without funding.
Thanks for your time today, this Friday of Labor Day weekend. I know you have barbecues and road trips or just a lot of Real Housewives of It Doesn’t Even Matter on your mind, so I really appreciate your time. Join me starting Sunday and you will be introduced to some kids that will change your life. I promise.
xox, Mary Tyler Mom
Filed under: Pediatric Cancer