February 04, 2015

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!


  1. These are astonishing statistics. Thanks for letting us know about this and how to help.

  2. Thanks for writing about this, Melanie. I'd heard that childhood cancer receives the least funding, but I didn't know the numbers. And I didn't know the rate in children was so high! Terrifying.


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