After reading so many of the survivor stories, I’m compelled to share mine also.
I was diagnosed with amelanotic melanoma with an unknown primary site on November 10, 1974, at the age of 12 years, 2 months. A tumor was removed from my left cervical region, just above my collarbone. It had first been noticed by my mother a few weeks earlier. The tumor was growing rapidly. The surgery and pathology follow-up were both done in Oklahoma City. My father asked the surgeon what to expect and his reply was, “Take the young man home and enjoy him this Christmas.” The initial diagnosis was questioned due to my age and the rare nature of that diagnosis in a child. The Mayo Clinic and St. Jude (Memphis) were both asked to do an evaluation and both reached the same diagnosis. Though we were living in Oklahoma City at the time, our family physician was a very close family friend who lived in North Little Rock, Arkansas. He had served as a resident at St. Jude in the 1960’s and recommended that we go to Memphis.
I was first admitted to St. Jude on November 24, 1974, and quickly underwent a full battery of tests, none of which showed any additional signs of cancer. Believe me, the medical staff gave it their best shot! I was poked, prodded, scoped, and biopsied in about every way imaginable, but no signs of additional cancer were found. On December 9 the doctors recommended to my parents that I undergo a radical neck dissection to remove the majority of the lymph nodes on my left side. The result would have been, at best, 50% use of my left arm, in addition the disfigurement of a young boy with the typical concerns and self-consciousness.
My parents are people of tremendous faith. My father has been a minister for the church of Christ since 1958 and still preaches today (2013). Upon hearing the recommendations of the St. Jude staff, my mother said, “He will live or he will die. But, he will do so ‘whole.'” Ironically, the Oklahoma surgeon and our Arkansas-based family doctor used the exact same phrase in advising my parents: “Don’t let them butcher the boy.” I don’t use that term lightly, nor did my doctors. They meant NO disrespect to the staff at St. Jude who were simply trying to save my life using the only tactics that they knew, regardless of how brutal those tactics may have been. So, nothing was done. I returned home to Oklahoma, underwent routine monthly checkups for several years, and have lived cancer-free since 1974.
I returned to St. Jude for a Survivor’s Day in 1991. It was my first visit since February 1975. As I was speaking to the Alumni Director she asked my file number. I told her that I had no idea. She looked the number up in her records and said, “You are file (xxxx).” The director of the hospital, Dr. Joseph Simone, was standing nearby and exclaimed, “You’re the one! You’re file (xxxx)!” My father was quite amused at my startled reaction. Dr. Simone related that my case is reviewed occasionally due to the rare nature of the diagnosis and the fact that I survived without treatment.
Later that day as we drove back to central Arkansas my Dad told me, for the first time, many of the facts that I have shared here. He and my mother made the decision not to tell me the grave nature of the illness and the seemingly hopeless diagnosis that they had been given. By the time I learned these facts I had lived a full adolescence, had been a very successful athlete and student, had married and become the father of two beautiful girls. As of 2013, I have been married almost 30 years, have officiated at the marriage ceremonies of both my daughters, and have 3 beautiful grandchildren.
On that day in 1991, Dr. Simone told my father and I, “Sometimes we doctors need a case such as this one to let us know who is really in charge.” There is no medical explanation for my being alive today. I trust in a God who was gracious to me beyond my ability to understand.
I contacted St. Jude for follow-up when I reached my 30-year anniversary in 2004. They asked at that time if I would be amenable to a re-diagnosis to ensure that the original pathology was correct. They believed that with better technology that perhaps they would find that a misdiagnosis occurred in 1974. A week later they informed me that it was correct.
I share my story for two reasons: 1.) Trust in God above all and thank Him daily for the wonderful medical professionals who serve you; and 2.) Don’t be ashamed of being a survivor. Having childhood cancer in 1974 was very different than it is today. Those circumstances left me with huge case of “survivor’s guilt” that I could not address until more than 20 years later. Share your story. Educate your children. Be the source of sunscreen for your golf partners. Inspire others. And live every day as if it is a gift from God.