I can’t tell you how often people are dumbfounded on how I can so enjoy working with a pediatric brain cancer foundation, especially one focused on post-mortem tissue donation. I guess they imagine the sadness and loss that these families endure and assume it permeates their lives and my work. That couldn’t be further from the truth. Now that I have been in the community for several years, I assure you that it isn’t loss and sadness that permeates this community. It is hope and compassion mixed with anger and determination. Because of “what I do” I have met the most inspiring people you can ever imagine.
This community is made up of families taking action where action is needed. It has been decades since any new drugs have been developed to primarily treat pediatric brain cancer. Only 4 cents of every public dollar spent on cancer research goes towards pediatric research and only a portion of that to brain tumors. Families are stepping up to fill the void in funding, resources and support. They have chosen to make a difference. They have turned their loss and grief into action.
My friend Amanda H. spent last Mother’s Day alone in Washington D.C. It was the anniversary of the day she lost her son to brain cancer. A day of grief compounded by the fact that she was alone, halfway across the country from home on Mother’s Day. But she was there to honor her son. She was there because the next day she would be with thought leaders and influencers who were gathering to discuss how to improve the logistics of pediatric brain cancer research and Amanda is a constant voice of progress in that arena. As I sat beside her, she inspired me to speak up, stay focused, and remember why we “do what we do”.
I never had the opportunity to meet Michael Gustafson; Mikey to friends and family. Still, he is my immediate answer for who I would like to sit on a bench and talk with. I work with Mikey’s family and friends. Each and everyone of them (literally EVERY ONE OF THEM) is making a focused impact on the world. When I see what he has inspired by his example and actions, I want the opportunity to talk with him and understand how he “did what he did”. One of my greatest life’s blessings is being part of Mikey’s community. You just need to browse through the website and blog of the Swifty Foundation to see all his family and friends have accomplished in his memory.
In April 2019 I was at a conference in Phoenix. Another gathering within the pediatric cancer community. As I sat at my conference table I was struck by the magnitude of resilience of spirit in the room. More than 50 tables were being manned by families and friends who had lost a child. They were there taking a stand, making a difference and determined to offer something that would be supportive for those who, in the future, will face what they had faced. Each one had something different. Something that had touched their family in a meaningful and supportive way. Now, in honor of their child they were bringing that touchstone to the greater community.
In December 2018 I helped to host gathering of families who had lost a child to brain cancer. Not your typical holiday celebration. 15 families from across the country gathered on a dreary weekend in Philadelphia. As they shared their stories, their children, they brought sunshine and hope to a room that I expected to be filled with loss. They astounded me with their strength. The strength to rise above their grief and take action. Their unselfish desire to make it better for the next family and work towards the goal of there never being a next family. Those 15 families who helped mold the message and plan for Gift from a Child are why “I do what I do” because I don’t know if I could “do what they do”.
Sitting in that meeting were Charlie’s parents. Charlie is the only child (teenager) I have actually met and lost to brain cancer. Their loss was very recent but they were there because Charlie would have been. I remember meeting Charlie, just once, at pediatric brain cancer gathering. He was already defying the odds and had survived his original prognosis, but he knew survival was not an option. Still, he was there inspiring and fighting for the next family. Charlie, smiled and brightened the room and in spite of the difficulties walked the room on his own terms and enjoyed every moment and experience he faced. Charlie and his parents inspire me.
I could tell you stories about so many more families who have collectively inspired me to be a better me. This community of families who have survived the unimaginable loss of a child is a testament to the good in people. It is a testament to the strength of hope to pull us out of our darkest moments and inspire compassion to rescue others. I am honored to “do what I do” I don’t merely survive it; I have grown and flourished because I have the privilege of working with and meeting true heroes each and every day. For that I am thankful.
I encourage you to join me and help this community do what needs to be done so that their numbers stop growing and they happily become a VERY exclusive community. My hope is that I can inspire a fire in others, just like Mikey, Amanda, Charlie, his parents, and all the families who work to bring hope to those who come after them.