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The Oncologist, the Patient and CKN — Sharing Knowledge

Surviving Childhood Cancer: A 20 year reflection Part 4

TedSibley2by Ted Sibley, MD
Truman Medical Centers Emergency Services
UMKC Clinical Assistant Professor Emergency Medicine Department
UMKC Adjunct Clinical Assistant Professor Master of Medical Science Physician Assistant Program

Read Part One
Read Part Two
Read Part Three

Part Four

Childhood cancer survival rates are on the rise. Current estimates are that there are more than 325,000 children, teens, and adults living in the United States who are survivors of childhood cancer, and each of us has a story to tell. We can tell you about life before, and after, cancer. We can tell you about the years of our childhood that we missed. We can even tell you the names of our nurses and oncologists who became a part of our families during our treatments. If we were too young to understand what was going on, our parents could tell you about the struggles they went through — the worries and tears they cried for us when we were too young and weak. Some of us have made it into adulthood, and we can tell you how cancer is something we carry with us. We are part of a collective group that faced death at a young age and now are living life in a newfound light.

But, we are the lucky ones. For every story like mine there are countless children who lost their fights with cancer:

• children who had bright futures, energizing smiles, and did nothing wrong to have lost their lives so soon

• children who should have grown up, graduated high school, attended college, and changed the world

• families who are left with memories of these children

• parents and siblings who can tell you the brave fight their child or sibling fought and how sad they feel about their vacancy in the world

Much like me, they can tell you exactly when and where they were when they discovered that their young loved one had cancer. And they can tell you about their life before and after cancer crept its way into their world and changed them forever.

During my time as a nursing assistant, I had the pleasure of telling my story to patients and their families, but I also got to see firsthand the loss of a child taken from the world too soon.  Late one December, a young boy undergoing chemotherapy spent Christmas in the hospital because his blood counts were too low to go home. I spent time in his room talking with his mother about how my roommates and I had had a very small Charlie Brown-esque tree on our table years before, but we did not have a star to place on the top. The young boy made arts and crafts to pass the time that evening, and the next day I came to work, his mother handed me a gift. He had made a star for the top of our tree. I thanked him and promised that this would be on my tree for years to come. This little boy lost his fight with cancer within a couple of months, but his small balsa wood star with yellow paint and gold trim sits atop our tree every year. It is one of the most precious things I own and reminds me of those who have lost their fight with a terrible disease.

The impact of being a cancer survivor has changed my life since the day I was diagnosed. The life I lead now is correlated to the experiences and person that I had become after undergoing treatment. Since my wife and I adopted our first son, we have finished medical school and residency, and I am now a practicing emergency medicine physician. I have had the opportunity to become a father two more times since our first adoption;  my wife and I are parents to an Ethiopian boy along with another Colombian child making an incredibly busy (but wonderful) family. I have become very involved in international medical work and am the medical director for a team that provides medical care to the indigenous people of the Amazon River. I have been able to travel extensively throughout Central and South America to work in various hospitals and clinics. I also have been allowed the opportunity to extend my medical services to countries throughout Africa and use the medical knowledge I’ve received through my training to help others on an international scale. I would be doing none of this if it were not for my history of cancer leading me to the career and life focus that I have now.

My wife also has been affected deeply by cancer. Though she was not directly involved in the initial effects of my therapy, she has experienced the ripple effects of my treatment. She has had to change the way she saw our marriage together after my diagnosis of infertility. She has now become a mother who has embraced our adopted children and focused her heart and mind to be a champion for international and domestic orphan rights. She has led numerous teams to work throughout Haiti in orphanages, and works endlessly for homeless children in our current city. She has volunteered our home a designated “Safe Families” house for homeless children. We provide temporary placement for various children from our area while their parents secure housing and job opportunities. We now have three sets of bunk beds in our home, countless extra sets of shoes and clothing for boys and girls, and we are just a phone call away from getting additional children who need a temporary place to stay. All of this has developed because of the effect of cancer treatment twenty years ago. She has taken the hurt and anger that cancer had given her and turned into love for her own children, as well as any child who needs her.

Sometimes I worry that my past will come back again and strike when I least expect it. I find myself wondering if any new stomach ache or chest pain could be a new tumor growing inside of me. I try to not let my thoughts dwell on such small things. But, on more than one occasion, I have taken myself in for a CT scan — just to make sure. Because germ cell cancer secretes the same hormone as a pregnant female, I will occasionally purchase a pregnancy test at the store and test my own urine. (The last time it turned out I actually just had gastric reflux.) But, with every mundane cough, body ache, or pain that I experience, the thought that cancer could recur remains in the back of my mind.

This year, I turned 33 years old and reflected on what 20 years of cancer survivorship has meant to me. I wonder what type of person I would have been without cancer. What type of people would my parents and siblings have been if they had not been there to experience all the hospitalizations, surgeries, treatments, and rehabilitation? What type of person would my wife have been if I had not had the emotional and physical scars from my treatment? Would I have become a physician? Would I have excelled more in athletics? Would I have internationally adopted children and become a medical director of a team in the Amazon River? The answer is most likely not. I believe that cancer has changed me, and those around me, forever. Be it for better or worse, my interaction with childhood cancer has had substantial effects on countless lives that I could never imagine. I am a different person today because of May 18, 1995. To my wife, I am a husband. To my parents, I am their son. I am called friend, dad, brother, and physician. But to those who know my history, I also am proud to be called a cancer survivor.

 

 

 

 

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One Response to Surviving Childhood Cancer: A 20 year reflection Part 4

  1. bernadette boris says:

    Thank you so very much for writing about this journey you are on. I very much enjoyed reading all four parts of the story. I now feel I have a better and different understsnding of what my 6 year old son had gone through and will continue to go through as a cancer patient. Finally I would like to thank you for getting the word out that only those of us on the inside know to be true; you are never the same after surviving cancer.

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