This week’s People I Find focuses on someone who has been a longtime friend of mine. I can distinctly remember the day I met him. We were at Riverglen Junior High and I saw him walking in the hall. When I saw him, I realized something very different about him. As others noticed the limp, or the hair, I noticed the survivor in him. Shortly after, we became friends. We both enjoyed golfing and so we would occasionally golf together, and he would always kick my butt. I soon learned that Trevor was a cancer survivor. We lost touch after graduation but I have been following him on Facebook, I know totally creepy. I was pleased to see that he taken something hard in his past and is using it for good. Trevor wrote a book and is helping to implement better laws for children’s health. I am so amazed at what he has accomplished and the good he is doing int he world.
My name is Trevor Schaefer. In November of 2002 at the age of 13 I heard three words no child ever wants to hear; “you have cancer”. My body went numb; like a news real, memories of my 13 years of existence began flashing before my eyes for what I was certain would be one of my last reflections. The only time I had ever heard the word cancer was when a well-known public figure was diagnosed with it. In most of those cases the patient died, so I automatically associated cancer with death. In fact, when the doctor told me the horrifying news the first words out of my mouth were; “Am I going to die?” The doctor didn’t really know how to respond; but would you if a frightened, innocent 13-year-old looked you in the eyes begging for reassurance that you could not honestly give?
The road to recovery was long and arduous. Following my eight-hour surgery to remove a golf ball sized tumor from the base of my brain I spent eight days recovering in the hospital. The first couple of days I spent in the intensive care unit. I could barely open my eyes. I had tubes running down my throat which made talking impossible. I was released from the hospital the day before Thanksgiving. For most kids the end of Thanksgiving marks the return to school. But for me, it marked the return to the hospital for the start of my cancer treatment. Radiation therapy left me bald, weak and pale. I felt like a mama bird feeding her young; every meal came right back up. Every day after treatment I hovered over the toilet, vomiting while my mom rubbed my back telling me everything was going to be okay.
During my visits to the hospital for chemotherapy treatment I saw many other children battling this bully we call cancer. Most of them were younger than me and had a more severe diagnosis and treatment regimen. I began to think if pediatric cancer the epidemic of the 21st century? In my research I found that 46 children a day are diagnosed with cancer in the United States, brain cancer being the second most common cancer in children. This alarming statistic made me question; “Why are so many children getting cancer?” This question bolstered my desire to want to help others and inspired the introduction of Senate Bill 50 (formerly S.76), the Strengthening Protections for Children and Communities from Disease Clusters Act, also known as Trevor’s Law. This bi-partisan bill was introduced by Senator Barbara Boxer (D-CA) and co-sponsored by Senator Mike Crapo (R-ID). Hopefully we can stop playing politics with children’s lives and bill S.50 will be enacted.
It has been over 10 years since my brain cancer diagnosis and I am proud to say I am a survivor. But winning this battle does not come without its consequences. I found that contrary to popular belief; once a cancer victim, always a cancer victim. There are late and long-term side effects from both the initial disease and from the cumulative aspects of curative treatment. The quality of life issues that young cancer patients will forever have to cope with range from interruption of school, low self-esteem, uncertainty about their future and some young patients struggle with concerns about dating and relationships with friends. I can relate to the aftermath of cancer; each morning I wake up with a distinct ringing in my ears which never fades, I have problems with my vision, my memory and I may never be able to have children of my own. How ironic that I fought so hard for my own life, yet now I may never be able to give life. Mental and emotional problems arise from cancer and treatment with symptoms similar to post traumatic stress disorder (PTSD). Through my cancer experience I have come to realize that children who have had cancer are brave warriors too. Although they have never set foot on a battlefield they are still casualties of war; their enemy, cancer.
My story of growth, battle with cancer and journey to the introduction of Trevor’s Law have been written about in a recently published book entitled “The Boy on the Lake” with the goal of sharing my experiences to provide inspiration, encouragement and motivation to others who face life-altering challenges.
Trevor’s Trek Foundation