September is Pediatric Cancer Awareness Month. At PCFLV, we are committed to spreading the GOLD all year long. However, in September, we truly make it our mission. 30 Days, 30 Stories celebrates the children we know and love and the brave battles they fight and have fought, with their families by their sides. In celebrating these beautiful children and their stories, we hope to inspire you to join us in our mission to SPREAD THE GOLD in September and all year long!
My story begins in 1991. Back then, there was no internet, no smart phones, no WebMD. Only a thirty-year-old mom (and dad) and a spunky little first-grader. One morning, my son, the innocent, impish, freckled faced light-of-my life, woke up, rubbing his eyes and complaining about seeing double. He lay on the couch with his "Kitty", a ragtag stuffed animal which he carried with him since birth who was just getting ready to be retired to the "beeboo" shelf, a shelf which ran the length of his bedroom lined with stuffed animals, all retired as Christopher was graduating to action figures and video games. As I picked up the phone to call his pediatrician, I knew Kitty was not going to be retiring soon.
Life picked up speed fast that day, July 1st, 1991, when we went from the pediatrician's office to an eye specialist, then to NYC where we met the doctors who would save his life. No one would say what was wrong with my son, only hushed conversations, and more doctors coming in to look at him. HMOs were new to the medical field so I needed to pick up a paper referral for the doctors in New York. The words "brain tumor" were on the referral and I couldn't repeat the diagnosis to anyone. I stared at his MRI films as I waited for the doctor's call, searching for a brain tumor. His eye looked funny on the films. I was a thirty-year-old woman who didn't even know what malignant meant. When the call finally came, my world changed as only a parent affected by pediatric cancer would know, the beginning of life which can only be described as entering the Twilight Zone. "We believe your son has Rhabdomyosarcoma, a malignant tumor behind his right eye, we have scheduled his surgery for July 3rd (my husband's birthday)." And so our 18-month-journey, our lifetime journey, began.
Today, my son is grown. He wears the battle scars of his own personal war on pediatric cancer, suffering the consequences of 18 months of an aggressive chemotherapy treatment and six weeks of daily radiation to his eye. I remember the radiation burn on his eye and the exit burn on the back of his bald head. Horrifying times indeed. Kitty didn't retire that year or for several years, she stayed by his side through every treatment, every procedure, every injection, every infusion, every day, every night. Dare I repeat the conversation I had one day with my seven-year-old as he lay in his own bed with Kitty? "Mom, if I die, I want Kitty to be right here (next to his heart) when you bury me." Did I just have that conversation with my son?
Fast forward to 2017. Christopher is a happy, healthy young man, married to a beautiful, nurturing woman, and still has "Kitty" except this kitty is alive and her name is Scullybear.
Now, as the universe continues to unfold as it is intended, I work for PCFLV trying to help children and families in their own Twilight Zone. And I still have Kitty, one eye missing, somewhat symbolic of my son's journey as he is blind in one eye, safely tucked away in a cedar chest, having lived a noble life battling cancer with my son.
-written by Lori, Christopher's mom