NIB 4.1 with a narrative symposium focused on Parenting Children with Pediatric Brain Tumors is coming out soon. Here is a story we couldn't include in the journal but wanted to share with our readers.
Story By Gary Painter
Our daughter was diagnosed with a brain tumor (glioblastoma multiforme) while we were on vacation in August 2005. As with all parents facing this horrible situation, we felt like were thrust into the front lines of battle for which we had no training. We relied on the doctors in that hospital to tell us what was the best course of action through initial brain surgery and recovery. When our daughter had recovered well enough to go home, we were recommended a protocol of treatment that may not have been in the best interest of her or our family, but at that time, we did not know what other options were available. Fortunately, our insurance company did not want to pay out of network and brought us to Children’s Hospital Los Angeles and the best neuro oncologist in the country.
Shortly after arriving back home, our daughter required a shunt surgery to alleviate fluid build-up in the brain. While in ICU, we met Kathy Riley from WeCan. It hard to put into words what it meant to speak to someone that knew what we were going through, and then could provide us with information to help us judge what were our options both within the medical world and outside the hospital environment (school options, etc.). We then were able to connect to other families in our same situation. We spent time getting to know them at a wonderful family camp, and then walked with them in the hospital and clinic visits for the next 15 months.
Unfortunately, our journey ended with the tragic death of our daughter. Fortunately, our support did not evaporate at that point. WeCan continued to provide a lifeline. Over the next two years, WeCan developed a bereavement program to help families like ours. Nothing can take away the pain of losing a child, but having a community with people provides an environment where healing can begin.