September is Pediatric Cancer Awareness Month, represented by the color gold. Did you know that? We didn’t until two years ago, when we were at the hospital for Elizabeth’s treatment and the staff was giving out small gold ribbons. Why is it that we know pink ribbons stand for breast cancer but are ignorant about gold ribbons? Why is it that we parents, our children’s best advocates, have failed to create greater awareness and urgency for funding of new treatments for our children, who have decades of potential and contributions ahead of them? It’s not because we aren’t trying. It’s because the subject matter is raw and unpleasant. Pediatric cancer is on emotional par with torture, rape, incest, abuse, and poverty — subjects we would prefer not to discuss. It’s also a topic that makes us feel like failures. Thousands of children die and suffer each as a result of cancer. We feel helpless to stop the random killing of about 50 children each week (the equivalent of two classrooms) by a relentless serial murderer.
Pediatric cancer was not even on our radar screen three years ago. Sometimes we wish it weren’t now. Each time we hear of a child with a new diagnosis, we are knifed in the heart and relive Elizabeth’s nightmare. We would love to be innocent again, but we will never be.
Pediatric cancer is bad, but a rare inoperable brain tumor has to among the worst diagnoses. “Inoperable brain cancer” really means “pray for a miracle.” “Rare” means there is no treatment protocol and few clinical trials. A tumor in the brain means that the patient will be robbed of their physical, emotional, and intellectual abilities. Inoperable brain cancer is more than an inconvenient or painful disease.
Thus we continue the work of Elizabeth’s Hope, our daughter’s dream of a cure for rare and inoperable brain cancers. Elizabeth was admitted into hospice in October 2012, just 9 months after her diagnosis. We were told that she had a few months to live at most. She had started work on Elizabeth’s Hope in June, and we were anxious to launch the fund while she was still present. We launched in mid-November 2012. Elizabeth hung on. Dr. Greenfield paid her a bedside visit over the Christmas /New Year’s holidays. It was an important visit, but Elizabeth was sad when he left our home. She was disappointed because she’d had the innocent hope that he would come with the cure that very day that would free her from her steady decline.
In this day and age, it is shocking to us that the only hope for so many patients is a miracle. We know we can do better. We eradicated polio, got a man to the moon, made AIDS a chronic disease. A cure is possible. It’s about focus. We can do more for our innocent kids. So our task is to remain engaged in the effort, raising dollars for research and creating awareness.
Thank you all for supporting Elizabeth’s Hope. The fund has raised nearly $900,000 for the Children’s Brain Tumor Project research effort for rare and inoperable brain cancer. The team at the Children’s Brain Tumor Project, led by Drs. Souweidane and Greenfield, are focused, passionate, and making progress. (Read more about their work here).
We dream of the day when there is no need for a CBTP. Until then, however, we will continue to raise dollars to support those devoting their lives to helping these innocent victims.
Elizabeth’s Hope owes its success to you. Thanks again for caring.
Read the Fall 2013 Children’s Brain Tumor Project lab update from Dr. Greenfield.