Gratitude Amidst the Battle

The Birth of Band of Parents
Shortly after Nick relapsed I had the privilege of being a part of forming a grassroots organization that now has successfully funded a new, less toxic treatment at Memorial Sloan-Kettering and several other grants adding up to several million dollars thus far! This part is important to share because it demonstrates that even during tragedy and despair you must search for a pin hole of light that can guide you to brighter times. Becoming actively involved in acts of hope not only continues to help me, but now hundreds of children benefit.

Oct. 2007 Gratitude amidst the battle
Sometimes I feel like we live in a war movie… The official name of our fundraising organization is Band of Parents… a spin off from Band of Brothers. This much I know. We not only are fighting to save our children, we are now an organization with a very large job to do. On top of the stress, worry and strain of treatment a small group of parents has found the strength to navigate this organization. Sometimes in the midst of battle one can discover they can do superhuman things. You never get used to fighting the battle. Your comrades were strangers just hours, week, or months ago. Now you know them under the most intimate of circumstances. Bound together by fear, hope and a common understanding, you march together through the war that is cancer. You lean on each other, you cry with each other, you silently whisper with your eyes- “I know how you feel right now”. You get the same “battle plan” you get the same “camp” to live in. You charge forward together with hope and a surreal new sense of purpose. You live in close quarters, separated by curtains at the hospital and thin walls at the Ronald McDonald house. You are bound by your desire to survive. You never forget your first experience losing one of your own friends on the battlefield. You freeze, paralyzed with the knowledge that a person could be right there one day and gone the next. In the same frozen moment you realize your child could be next. You reach out to help but there is nothing more to do. Your connection will last forever bound by the experience. Your only choice is to get back up and keep fighting, in hopes you find a safe haven before the next victim of this insidious war is your child.
I try to always frame my life with gratitude. It isn’t always easy. The sadness that overshadows every single part of my being sometimes makes it hard to be grateful, but it is something I strive for. Even on the very best of days there is an undercurrent, always rumbling. Gratitude helps to quiet the rumble, snuff out the sadness and somehow we go about living this life, mostly like everyone else does.
One thing that is very different from normal life is the sense of urgency for change. It is easy to float along when crisis isn’t in your face. My commitment to be on the fundraising team to drive the antibody project to fruition is not something I take lightly. I don’t think I have ever felt so empowered to be in a position to truly make a difference in how Neuroblastoma will be treated in the future. Through treatment and tragedy we are persevering. Our communities back home and our community of warrior families empowers us. A small group of parents are planting the seeds of great hope and change.