First of all, I want to say that our hearts go out to all who are in pain from all of the hurtful events that have happened in America not only over the last few months, but especially the last few weeks. I apologize for not writing sooner, but I suppose I have just been processing like the rest of the world, and as an introvert, I process, and I process slowly and deeply. Many people have been wronged and hurt, and both my husband Trey and I hope that now that we are aware of this pain, we all will find ways to be open to learning, open to healing, and open to moving forward with love and acceptance at the forefront.
That being said, I have a job to do, one that Trey and I believe is now our purpose on this planet, and that is to support children with cancer and their families. Unfortunately, cancer is blind to cultures and color, so all are potential targets, and there is no method to its madness. Also, a child is a child is a child no matter the color, creed, or nationality. Initially, I was inspired to write when I was listening to a podcast earlier this week about a social worker named Elizabeth Shuman who was diagnosed with Cystic Fibrosis when she was seven years old. Cystic Fibrosis is a condition where mucous builds up in the lungs because of bacteria that grows, and the individual is never able to expel it. There are other complications with digestion and energy levels, and for people like Elizabeth, their daily lives are regimented life-saving routines of medicine and doctors’ visits that sometimes culminate into hospital stays. She spends two hours each day wearing a vest that shakes up the mucous, and she pays special attention to rest and nutrition. Everything is calculated, and she is constantly working to live life day to day. What should be ordinary, daily, mindless routines become major stressors requiring energy that she may or may not have. Much of what she was saying resonated with me, as cancer took a similar toll on our daughter Emilie, stealing what energy it could, making her miss out on swim sessions or school with her friends. At one point her medication was a job within itself. We were managing it all—different medications, different doses, all at different times, day and night. MRIs, blood draws, doctors’ visits, and hospital stays were her regular routine. BUT the similarities really struck home when Shuman said that the average age of survival for Cystic Fibrosis when she was diagnosed in the eighties was twelve years old. There is no cure for Cystic Fibrosis, just like there is no cure for DIPG. The truly amazing thing, though, is how far Cystic Fibrosis has come since the eighties. The average age of survival is now 38, and here is what really got me excited. She said that the money that helped advance research and that helped extend this survival rate was not from federal dollars. The research money that extended the lifespan of Cystic Fibrosis came from foundations and from people who were able to give ten dollars here and there. The idea that such huge strides adding 26 years to these people’s lives came from many, many donors giving up a coffee here and there and donating. These little donations turned hopelessness into hope and then into results to where a childhood disease is no longer just a childhood disease.
As of now, Diffuse Intrinsic Pontine Glioma (DIPG) is for all intense purposes, a childhood disease. The average lifespan is nine months after diagnosis, and the disease shuts down the child’s brain, interfering with all bodily functions, movement, and communication, and inevitably ends in death. It is a horrifying disease, one that I would like to see eradicated, but the only way we can do that is through research. The best way to ensure research is through donations, not only to advance DIPG research, but to advance the cure of all of the pediatric cancers that have taken innocent children’s lives. I feel so very strongly that my sweet, tough, and deeply insightful little girl is cheering us on, maybe even doing a little dance in celebration of every step we take to make a cure a reality. Elizabeth Shuman’s story has inspired me in that it has proven to me that a village can make a world of a difference with just a few dollars and some long term persistence. I also feel like in this time of turmoil when many of us feel powerless, what better way to be the good in the universe than contributing to ending pediatric cancer? Why not gather round in solidarity against pediatric cancer, making us one step closer to a cure?
Our fundraiser on Facebook for Emilie’s birthday (June 15th) is for the American Cancer Society’s “Fund the Mission” campaign. 100% of our donations will go straight to pediatric cancer research. So, when you donate to the Fight Like Emilie Foundation in this campaign, your dollars will go to fund the mission. ALSO, the Fight Like Emilie Foundation will be giving an additional $2,500 to their pediatric cancer research campaign. Please give Emilie an incredible 13th birthday by helping find a cure.
Click here to donate: Emilie’s Birthday Fundraiser for Pediatric Research
Author of the above post: Candice Gibson
For those who are big on sources, my references to Elizabeth Shuman come from Jonathan Singer’s Social Work Podcast.