THE LILY LARUE FOUNDATION
Brian Anderson, Brady (Lily’s twin brother), Jasmine (Lily’s older sister), Lily LaRue and Barbara Anderson.
Through Books That Heal, I have the opportunity to speak to get to know and learn more about the families and children who face chronic illness. Recently, I had an opportunity to speak with Barbara Anderson, Lily La Rue Anderson’s mother, founder and champion for the Lily LaRue Foundation. Currently training for the New York City Marathon, Barbara also tirelessly raises money for brain cancer research and generously shares the wonderful story of Lily LaRue and their Foundation.
THE BEGINNING OF THEIR JOURNEY
Barbara, Lily’s mom, shares that “on May 3, 2014, we got the shock of our lives. While on a family trip to Hershey Park in Pennsylvania, Lily was found to have a brain tumor the size of a lemon on her brain stem. It was only through a freak accident at the hotel pool that Lily was taken to the hospital to check for injuries, given a scan and a non-active tumor was discovered. Prior to this, Lily surprisingly had no symptoms.”
Lily was officially diagnosed with Diffuse Intrinsic Pontine Glioma, commonly referred to as DIPG, an aggressive and inoperable form of brain cancer and one with virtually no survival rate. At the time of diagnosis, because of the size of the mass, the doctors gave Lily three months to live, six months if she was lucky. Lily lived and laughed another 11 months and 2 days. Not enough, ever. Time wasn’t on our side, but she and her family packed every single second with everything we had. Lily passed away on April 6, 2015. In her short time, she touched thousands of lives and through her foundation (Lily LaRue Foundation http://www.lilylaruefoundation.com/) her joy and light continue to bring hope to families facing childhood cancer.
Lily LaRue Foundation, a 501(c)(3) charity, is dedicated to helping other children and families afflicted with DIPG. The Foundation's mission is to increase awareness of DIPG, raise funds for research to eradicate it, and to help children and families who are battling DIPG and other pediatric cancers.
As Lily would have said “we will raise awareness of DIPG using our Yelly Voices!” Barbara shares “there are over 120 different pediatric brain cancers including DIPG. Combined, these cancers receive only 4% of the total funds dedicated to cancer research and because they are so rare, they simply do not get the funding or attention that research scientists need to find a cure.” Ultimately, it’s about creating hope.
The Anderson Family through the Lily LaRue Foundation helps raise funds for much needed research and to support families and children fighting cancer. Barbar shares that “back in 2014, there was no collaboration among doctors treating DIGP, even in clinical trials. We are still at the beginning and finally doctors are able to work together throughout biopsies and treatment. In addition to funding research, Lily LaRue Foundation and Barbara Anderson help families directly, whether it’s paying for a funeral, providing meals when there is no time to cook, watching children when parents need to meet with doctors and even paying for pediatric hospice care when it’s not covered by the state where the family lives.”
LOVE FOR LILY ANNUAL SUMMER EVENT
One of the most important fundraising events for the Lily LaRue Foundation is the Love for Lily Golf Outing held every summer and run by Lily’s father, Brian Anderson, since Lily was first diagnosed in 2014. Barbara shares that “within weeks of her diagnosis, friends organized a golf outing. No one knew what was going on. They just knew that we would need money for all the things not covered by insurance. Now, Brian has led the largest Love for Lily Golf Outing, the sixth since the start.” In this most recent event, Joe Girardi, New York Yankees Manager, recognized the Lily LaRue Foundation for its fundraising for childhood cancer research.
THE CHILDREN’S BRAIN TUMOR PROJECT (https://weillcornellbrainandspine.org/childrens-brain-tumor-project)
When Lily’s family was given the diagnosis, there was no treatment, no operation, no way to cure, no options. Barbara spoke about the difference research makes. “By supporting the Children’s Brain Tumor Project, we have the unprecedented ability to quickly identify a brain tumor. The data is critical and offers new hope to patients. Our hope is that through research, we will be able to identify alternative delivery methods and drugs that specifically target each child’s tumor.”
THE DIPG COLLABORATIVE ( dipg.org)
Lily LaRue Foundation also supports The DIPG Collaborative, a collection of foundations with the common interest of inspiring research into the cure for DIPG with the belief that through a cure for DIPG, significant advances in other cancer research will be made. With a goal of seeking the balance of research transparency, institutional collaboration and the elimination of duplication, the DIPG Collaborative funds both clinical and translational research worldwide.
LILY’S ENDURING MESSAGE
Barbara recalls “Lily was bossy. She was a fierce child from the very start. There came a time when there was nothing more that doctors could do. We had to tell Lily that her boo-boo - what she called her cancer - was not listening.” Lily’s response was to challenge me and say “if they are not listening, why not use your Yelly voice and make them listen!”
Barbara shares that “this was Lily. She was hysterical and fearless and it’s what she wanted to do with the time she had. Lily knew we had her back and she told us she wanted us to keep going. When it seems that no one is listening, it’s time to use your yelly voice.”
In spite of all that they have endured, Barbara has a unique perspective. She shares “people think they die when their child dies. You don’t and really what it does is change you. I don’t cater to things that don’t serve me or my family. We are still so hopeful. Just being able to talk about Lily is a beautiful thing. When it comes to joy we are all in.”
Thank you to Barbara and the entire Anderson family for sharing Lily LaRue’s story, for leading the Foundation and for the difference you make in families’ lives.