It is possible to love someone you never even met. It is possible to have your heart broken by perfect strangers. It’s just how the story goes if you are a childhood cancer advocate, or any advocate, for that matter. Everyone has their heart broken at least once or twice in their lifetime. When we feel something so deeply, when it is as personal as the fight for childhood cancer awareness and advocating for cures is for me, we can’t help but have our hearts broken over and over. I have said before on here that every single day, my heart breaks. My heart breaks for the children lost, for the parents, and the families, for the world as a whole, because the world will never again be touched physically by a particular child ever again.
A couple of years ago, I read this book, “Notes Left Behind” by Brooke and Keith Desserich, and was introduced to the horror that is Diffuse Intrinsic Pontine Glioma (DIPG). DIPG is a brain stem tumor, and because of the delicate location, it literally has a zero percent cure rate. It is difficult to treat. Before I picked up this book, I had no idea what it was. My experience with cancer before reading it was regulated to neuroblastoma, which I had, and reading books about characters with leukemia. This book opened my eyes to a lot of things when I read it in 2009, but it wasn’t until two years later that I really began advocating for pediatric cancer (more on that later this month).
This book was written about a little girl named Elena, who had this awful tumor. I have mentioned her before on this blog, but I have never really talked about who she is. Today, if she was still here, she would have been 12 years old. I look at her picture now, and my heart breaks all over again for her family, for the world as a whole. She was and is so beautiful.
Elena… There are no words, and yet there are ALL the words (and tears) for her. At five years old, she was diagnosed with DIPG, and during her 9 month battle with the disease, she hid hundreds of love notes between throughout her house and the houses of relatives. They were in between pages of books, in cupboards, in bags, even tucked in with clothes stashed away for winter. Each one is like a hug from their little girl. Her parents did not tell her that she wasn’t going to make it through this because they did not want to focus on the cancer, but rather on being a family and on doing the things that Elena wanted to do. Despite having radiation (chemotherapy does not have any effect on this cancer), Elena deteriorated rapidly, losing her ability to speak and eventually becoming paralyzed. But this brilliant, brave little girl refused to be silenced. She continued to write love notes for her family, including her grandparents and her favorite dog, who belonged to her aunt. Her parents found the first note a few days after Elena passed away in August 2007.
The book was their way of preserving Elena’s memory for her younger sister, Gracie, who was just 5 years old when Elena died. I read it and cried over it, and fell in love with this precious little girl, whose dreamed of being a mother and a teacher. She was, and is still, so amazing. She was the first person I thought of this morning when I opened my eyes. These days, I often wake up long before my alarm goes off. I am unsure about what wakes me up. I fall asleep exhausted but I don’t stay asleep for long, and I know it’s because of the children… Childhood cancer is the NUMBER ONE cause of death by disease in children. Every 4 hours a child dies from one form or another. Pediatric brain cancer is the most deadliest form, and DIPG, well, just look at the statistics. Zero percent cure rate.
It’s the first day of May, which is National Brain Cancer Awareness Month. Please do what you can to spread the word… Wear gray. Buy “Notes Left Behind” and educate yourself and others. And most of all, in the words of 12 year old Jessica Joy Rees, who also had DIPG and passed away less than a year and a half ago, NEGU (Never Ever Give Up). The children are waiting…