Bobby Whitfield - 33 years and Counting
Dad was diagnosed with a Rhabdomyosarcoma when I was just 12 years old. I remember at the time, it was the scariest thing that could happen to our family. My father was admitted to NIH in Bethesda MD for a clinical trial. During the same time, another family from our hometown was getting the same scary diagnosis. He also attended NIH on the same protocol. My dad always had a deep dislike of doctors, he always told me, “They call it practicing medicine for a reason.” A few months later the other gentleman was beaten by Rhabdomyosarcoma. Dad’s treatment by no means was easy. He was administered chemotherapy and radiation. Being raised Jehovah’s Witness, he also tried many herbal remedies and teas. I do not recall how long my father was treated, but I do remember the day he celebrated the word remission.
Bobby and Father
May 1989, I graduated high school and was set for college. Our family doctor who had previously diagnosed my dad, scheduled a hernia operation for myself. I lifted a lot of weights during football practice and apparently pushed it. June 19th, I awoke after surgery. All I remember is a couple of doctors looking for moles on my body and discussing my surgery with concern. Due to my father being an NIH patient I was put on a plane.
Within a few days I was given my LMS diagnosis. I was also informed that it had spread to my lungs; I had 24 tumors in them. I recall sitting in a conference room with several doctors. There’s a whole new level of scared when told you have possibly 3 months left of your life, and this was the best outcome… unless I wanted to start an intense treatment of chemotherapy. Everything I had watched my father endure was now my only hope.
I kept a journal of everything that was administered to myself and every test that was done. I used that as a catalyst to how I was going to feel. I remember a couple of the names of the chemotherapy treatments, because they really left an impression. Adriamycin and Cytoxan, combined every 13 days. It always felt like death. It would put me out for a couple of days. I flew back home to Kentucky in between treatments. I pretty much was taken straight from the airport to our local hospital and admitted. I would receive blood, platelets as well as a mild chemotherapy. After 4 months, NIH had not seen the results from the chemo they desired. I was then put on a chemo/radiation protocol. This lasted for 3 months. Luckily for myself and my family, NIH opened The Children’s Inn. I was amongst the 1st group of kids to stay there with my family. Most days I received radiation and then toured around Washington, DC. We took some of the family trips the hospital offered, with my chemo pump constantly going.
I will never say the road was easy. In fact, it was nothing but that. There was a social worker that I talked to that offered me the opportunity to donate semen in case I would like to have kids. “Why would I want to put my kid though this?” My kidneys had shut down from all the chemo at least twice. In 15 months, I spent 396 days in a hospital and had 169 blood transfusions. In the early 80’s AIDS had become a pandemic. Luckily, I only contacted Hepatitis C.
I never finished all my chemo treatments. I believe I had 3 left, when the doctors discovered a dormant tumor lodged in my left lung. The doctors wanted to remove some of the lungs and tissue around them. This was probably the biggest decision my father ever let me make in my life. Dad asked me what I wanted to do. I was done with chemo. Mentally and physically.
There are a lot of factors that contribute to 33 years of being LMS free. I attribute a lot of this to my family and knowing that a diagnosis of cancer does not mean death. I thank NIH for allowing myself to be a pediatric patient. When you see children that are younger than yourself struggling to walk down the hallway with their IV tree, or infants clinging to their mothers because they are scared, it changes you. Many doctors and nurses consulted and comforted myself as well as my hospital counselor. I wish I remembered more of their names; they would be proud to see me now. The biggest factor is my attitude. When given the decision to either lay down and die or stand up and fight. I choose the fight. As a survivor, I will guarantee that nobody else, understands your body like yourself. You are your biggest advocate.
I am now 51 years old. I do have complications from chemotherapy and radiation to this day. I have been treated for Hepatitis C and cured. Like everyone else that has been diagnosed with cancer, I constantly check for knots, bumps or anything else that is questionable. I am happily married with 2 stepchildren. My wife and I decided in 2019 to find a simpler life and moved to a rural area of Georgia and live on a lake.
I have volunteered for several fundraisers, as well as being available to talk through organizations such as the LMS Lifeline Buddy and Inmerman Angels. All those fighting LMS before me are an inspiration and a miracle. Nobody fights alone. We will get to the cure.
If you are a 7+ year survivor of LMS, please share your story! Contact us at info@LMSDR.org