neuroblastoma - Melanie Conklin

Ever heard of Neuroblastoma?

The story in Counting Thyme centers on a family whose youngest child is in the midst of treatment for neuroblastoma. Seeing as today is #WorldCancerDay, I thought I would share some information on what the heck that means, for anyone who is curious.

First of all, childhood cancer is far more prevalent than you might think. According to Band of Parents (highly recommended reading!), one in 330 kids will develop cancer by age 20. That number sure shocked me. In the case of neuroblastoma, which is the most common cancer in children under 2 years of age, the numbers are even worse. NB is cancer of the nervous system. It has a five-year survival rate of just 30%.

I first learned about NB about eight years ago, when we were living in Brooklyn, NY. There was a family in our Park Slope neighborhood whose son was diagnosed with NB. New to parenthood at that time, I followed their blog closely, crying way more often than not. I had no idea that this was what parents went through for their children. I had no idea that the world could be so cruel.

Neuroblastoma is devastating because it is often not found until it is Stage IV, and it has such a high relapse rate that patients often develop secondary cancers and conditions from all of the chemotherapy. The hope for NB patients is that medicine will continue to develop new theraputics, like the immunotherapies currently in trial stages. Unfortunately, the funding landscape doesn’t reflect this need. The National Cancer Institute’s funded research portfolio in 2010 was $3 billion. Of that, breast cancer received 21%, prostate cancer received 10% and ALL 12 major groups of pediatric cancers combined received less than 3%.

Less than 3%!

To put that in perspective, each child in the U.S. diagnosed with cancer receives approximately one sixth of the federal research support allocated to each patient afflicted with AIDS, even though cancer accounts for the greatest number of deaths of children in the U.S. and kills more children per year than cystic fibrosis, muscular dystrophy, asthma and AIDS combined.

The good news is, funding is something we can CHANGE.

The Band of Parents that I mentioned earlier includes the parents I came to know in Brookyln. Their non-profit group accepts donations to support research efforts.

Cookies for Kids Cancer is an incredible group that raises funds for NB research. These Good Cookies sprung up right around the time that I became aware of the NB community in Brooklyn. I cherish my memories of baking cookies in a half-broken rented oven off of Flatbush Avenue, and later at the French Culinary Institute. Since 2008, support from Good Cookies like YOU has helped Cookies for Kids’ Cancer fund nearly 6 DOZEN childhood cancer research grants, leading to 11 promising new treatments now in clinical trial, available to children fighting cancer TODAY.

There are many great organizations out there raising funds for many worthy causes. These are just two groups that happen to mean a lot to me. Thanks for reading about them!

On Truth in Fiction

As fiction writers, we strive to create truth on the page. We invent characters and settings, plot twists and mysteries, all the while hoping that our readers will believe the beautiful lies we have spun–because truth is what touches us. Truth taps into our emotions, allowing us to relate and learn. Truth unites us, readers and authors alike.

What’s interesting is that sometimes, the fictions we create are so painfully real that we question the propriety of truth in fiction–we question whether or not Tris should have been sexually assaulted in Divergent. We question Amy’s near-rape in Across the Universe. These moments are hard for readers, but they are hard for authors, too.

As authors, we are drawn to the darkest moments of our character’s lives. We want to see and hear and feel what they feel, but we also want to share those experiences with respect. Because the stories we weave are not fiction for everyone. For some readers, what we have written is their truth.

I’ve always thought it was appropriate and important to portray dramatic circumstances from real life. I support authors who take on the tough moments and show them with passion and respect. I just didn’t realize that I am one of those authors, not until this week.

For those of you who don’t know the story behind my first novel for middle grade, the plot centers around a girl whose little brother is battling cancer–neuroblastoma, to be exact. My life was first touched by NB five years ago in Brooklyn, when a neighbor friend of mine disclosed that her son had the deadly disease. Through their family, I became involved in Cookies for Kid’s Cancer, helping launch the initial year of fundraising (NB occurs in such a low % of the population it is not a lucrative field for pharma and relies on donations).

This week I learned that my 4yo’s classmate has been diagnosed with the disease. This is shocking and terrible and heart-breaking news. This child is only three years old. She doesn’t deserve this. And even though I know how random and sudden this disease can be from my book research, I was stunned by the news.

At first I felt something like guilt, for having written a novel that portrays this real person’s circumstances. But then I went back and read the book. And I saw that the story I told is true, but it is also kind and respectful and hopeful–and I felt a renewed sense of obligation as a writer to share these stories with the world. Even when it hurts to do so.

Neuroblastoma came into my life five years ago, and it has come again, so I am taking the hint from the universe. I remain dedicated to helping discover new and better treatments for NB and childhood cancers. If you want to learn how to help, too, just follow the link. And hug your kids today. Then hug them again.

Want to support children’s cancer research? Buy a book! Help save young lives.