Children’s Cancer Research Lags Behind on Funding

By Isabel Torres
Co-Founder, Executive Director
Gabriella’s Smile Foundation
www.strongerthandipg.org

#MoreThan4 is a hashtag I frequently use and mostly during Childhood Cancer Awareness Month in September. I lost my daughter after seven and a half months of battling a terminal brain tumor, DIPG. Diffuse Intrinsic Pontine Glioma is what the doctors told my husband and me. “Don’t google it,” they said. I googled it. What I found would make any mother sick to her stomach. Dating back to 1962 when Neil Armstrong lost his two-and-a-half-year-old daughter to DIPG, there have been no real advancements in the treatment for this tumor.

We were given the option of radiation to shrink the tumor and hopefully get our daughter to a “honeymoon stage,” where all would be almost normal, but only until the monster tumor would start growing again. She also took an oral chemotherapy drug that is commonly given to adults with glioblastoma. Again, this would give us a few more months with our daughter, but the doctor assured us that she would not likely survive through the end of the year. That was in 2015.

#MoreThan4 refers to the funding all childhood cancer research gets from the National Cancer Institute (NCI). So for every dollar NCI gets from the government, only four cents goes toward childhood cancer research. This was the case in 2015 when Gabriella died and is the case today, almost two years later. So two years later, are we any closer to finding a cure for DIPG? Researchers have learned much more about the tumor but it’s been because of the selfless tumor donations from parents who lose their child to DIPG and monetary donations from private childhood cancer foundations dedicated to funding research. Out of the four cents of every dollar NCI gives to childhood cancer research, not much goes toward DIPG research. Most of these private foundations are created by parents who lost a child to DIPG. So it’s up to parents like us, to sell cookies and lemonade, organize a garage sale, a car wash, a 5K walk/run, a gala, and other creative ways to raise money to advance DIPG research.

According to the nonprofit group Kids v Cancer, Americans spend 20 times more on potato chips than on pediatric cancer research. Potato chips over the life of my daughter. Yes, I have spent more money on potato chips than giving to pediatric cancer research. I had no idea.

This is why I say my daughter deserved #morethan4. And frankly, so does yours! So do my surviving children. You just never know until it is your child. Don’t wait until it is, because being sorry isn’t good enough when it comes to kids fighting cancer. We need action and it all starts with awareness today!

As the executive director for Gabriella’s Smile Foundation, our mission is to help families, find research and raise awareness. This is why in September we shift our focus to bringing awareness to all childhood cancers. Our wish is for no other parent to have to bury their child. We want to leave behind a better world for our children and their children, a world where children can be children. Sadly, Gabriella did not have that same opportunity. She was one of seven children who died from cancer on November 7, 2015.