NOTE: On June 19-20, the Children's Hospital Association will be holding our ninth annual Family Advocacy Day in Washington, DC. Leading up to the event, we'll be posting stories by the amazing moms and dads of some of our attending children. Today's story is about Rachel Edwards by her dad, Gary.
There has always been a certain comfort for parents that live in a community that is fortunate enough to have a hospital dedicated to children. But despite that comfort, most of us never really consider that our children or grandchildren will ever be patients. In our case, MUSC Children’s Hospital, located near the center of Historic Charleston, was such a place - one for other children and for other families. We never even once pondered that we could be facing a life threatening disease with our child. That only happened to other people.
But in January 2007, that all changed when our 10 year-old blonde haired, blue eyed angel, Rachel Jean, was diagnosed with osteosarcoma, better known as a solid tumor bone cancer to most of us. From the moment of the initial diagnosis, our lives changed in a profound way as we immersed ourselves into membership of a select club. We were a cancer family. And we were headed to that place for other people – MUSC Children’s Hospital.
Each member of that club can still remember the words, “your child has cancer.” The words that immediately follow, most of us cannot remember. A blissful life has been interrupted.
Rachel has been a special joy. And we wanted to become indignant that she could have cancer. If we are honest, we probably wanted to be angry. And we understood fear in whole new way. But there was really no time because our MUSC Children’s Hospital team moved quickly, even as the air became too thin for us to catch full, deep breath.
We learned the value of a hospital dedicated to children’s health through the past six years of three recurrences after the initial diagnosis, ten surgeries including limb salvage surgery, a thoracotomy, a lobectomy, more than eight chemotherapies, three radiation protocols, and immunotherapy. It became apparent that we were in a special place with a passion for excellence, a passion for children and, in fact, a passion for the entire family. To house a child inpatient for more than 150 nights through the first three years of our journey requires a unique skillset and unparalleled facilities for children. Unlike the adult hospitals that treat children like mini-adults, our MUSC Children’s Hospital gave us the best chance for success medically and emotionally.
It also became apparent to us as we learned more about the disease that progress has been slow in many pediatric cancers. In fact, overall spending for pediatric cancer research is small. And seeking the cure of pediatric cancer and other pediatric diseases presents an opportunity for those in positions of authority to make a meaningful impact in the lives of families in our country.
Rachel, now 17, sits at the sweet intersection of answered prayer and great science with the perseverance of four doctors, in particular, who simply did not have an ounce of quit in them. And neither did Rachel. Despite being told frankly that solutions to her illness seemed elusive, Rachel always had a view of a long future with herself in it. And today we are thankful for the community that rallied around us at MUSC Children’s Hospital and walked with us every step of the way. We are ever grateful for Drs. Kraveka, Hudspeth, Jenrette, and Anderson, and the legions of staff that walk with children everyday.
Today, Rachel is 15 months in full remission and we live with thanks that many years ago, our community leaders decided strategically to make children’s health a priority. And they have done it exceedingly well.
And Rachel gave us many lessons along the way. She lived Romans 5:3-4 nearly every single day: “Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.”