Dear Vice President Biden
First I want to say how deeply sorry I am for the loss of your son, Beau. I know there are no words that can take away the pain of his absence from your life. I understand how deeply painful that absence is. I lost my son, Sam, several years ago also to a brain tumor. Sam was diagnosed with DIPG, Diffuse Intrinsic Pontine Glioma, in Feb 2011 and passed away 9 months later at age 20.
DIPG is a pediatric brain tumor that predominately affects younger children (on average 5–9 years old); however even younger children and teens and young adults are also being diagnosed with this devastating tumor. The average survival is 10 months with a 2 year survival rate at around 10% and a 3 year survival rate of just 3%. There are NO effective treatments. It’s only been in the past few years that researchers have even had access to tumor tissue to use for much needed research. Because it is both a “rare” tumor and a pediatric tumor it gets little funding from the NCI. The NCI allocates only 4% of its budget to ALL pediatric cancer and VERY little of that goes to pediatric brain tumor research.
Most DIPG research is funded by private foundations that are started by parents who have lost a child to this horrific disease. These parents are driven to help fund research so other children will someday have a fighting chance when given this diagnosis. But shouldn’t our government be more concerned about the health of our children? Why should this work fall in the laps of parents who are already suffering the unimaginable loss of their child? According to the National Brain Tumor Society, ”malignant brain tumors are the leading cause of cancer-related death for children under 14 years old and second leading cause of cancer-related death in all children under 20 years old. Unfortunately, little progress has been made in improving survival rates for the most deadly of pediatric brain tumors, including high-grade gliomas, in the past four decades”. We simply NEED to make this a priority and end this disease!
DIPG is a particularly cruel way for a child to die. After the initial diagnosis, radiation will sometimes either shrink the tumor or at least stop it from growing for awhile…..a short while….measured in months not years! Sam’s tumor remained stable after radiation for 4 months. When it started growing again it grew rapidly. He lost the ability to walk, he lost the ability to use his hands and arms, he had double vision and could not close one eye, and it became difficult to swallow and speak. Towards the end my beautiful sweet son could not move, speak, or swallow……and yet he still had total function of his mind and thoughts. He knew exactly what was happening to his body. While other brain tumors often affect personality, memory, or thought processes DIPG, because it is in the brainstem, does not. Sam was fully aware of what was happening to him until the very end. Sam lost his life to this disease, I lost my only child, and the world lost a beautiful soul. This is what children with DIPG and their family’s experience. It is horrifying and totally unacceptable.
I applaud you for your commitment and am grateful you are making this your life’s work. I have hope you will be able to help facilitate much needed collaboration among researchers and institutions not only in this country but worldwide. And while we definitely need more funds going to research I think we also need to look at how that money is being allocated and how it is being awarded to researchers. The current system of awarding grants is flawed in part by not encouraging bright young researchers to think creatively. If you have not already done so I would recommend a book written by Clifton Leaf, “The Truth in Small Doses: Why We’re Losing the War on Cancer — and How to Win It”. The author does a good job at looking at some of the problems and issues with the way government funds research and the “war on cancer” in general.
Sam was the light of my life…now he is the light that inspires me to work in whatever way I can in this quest for a cure! I am truly sorry you have suffered the pain of such devastating loss. It would be easy to retreat or avoid but you have chosen to fight….I thank you for that from the bottom of my heart!