Today was the most important day of my life. I delivered my testimony to the senators on the EPW Committee. They were very receptive to me and my ideas. This is my testimony:
Trevor Schaefer’s Oral Testimony
U.S. Senate, EPW Committee
Oversight Hearing on Cancer Clusters
And Children’s Health
March 29, 2011
I want to thank Chair Barbara Boxer, Ranking Member James Inhofe, and my great senator, Mike Crapo, for taking on the subject of childhood cancer and cancer clusters and what they mean to our public health. I would like to thank all of the senators on the Environment and Public Works Committee for allowing me to address some of those issues today. And– I am so very proud to be able to state that I am here today as a witness for both the Majority and Minority committee members.
Most of you don’t know me other than I am associated with S.76, also known as Trevor’s Law. By the end of my testimony my hope is that you will not only know me, but that you will remember me as the voice of every child in this great nation.
As you have been told, I am a twenty-one-year-old brain cancer survivor. In November of 2002 at the age of thirteen, I was diagnosed with a highly malignant Medullablastoma.
Until that time, I was thriving in McCall, a small town nestled on the banks of a glacial lake in the beautiful mountains of Idaho. I really had a fairy tale life in paradise. But the carefree days of my childhood changed abruptly and dramatically after my cancer diagnosis.
Like a snap of the fingers, I was robbed of my childhood and my innocence. I was thrown into the antiseptic world of hospitals: an eight hour surgery, painful recovery followed by fourteen grueling months of radiation and chemotherapy treatment.
Unfortunately I wasn’t the only kid in my town with this pernicious disease. In the same year of my diagnosis there were four other brain cancers in our tiny resort community with a year-round permanent population of 1,700 residents. Over a ten year period there was an abnormally high number of cancer cases diagnosed there before and after I became ill.
What happened in my community continually repeats itself throughout this entire country, year in and year out. Nationally the statistics for childhood cancer are alarming. According to the CDC, forty-six children per day (two classrooms-full) are being diagnosed with cancers unrelated to genetics or family history. As Trevor’s Law states, “cancer is the second leading cause of death among children, exceeded only by accidents.”
Many of us young cancer survivors will forever face chronic health challenges resulting from the heroic medical measures used to save our lives. Children who have had cancer often experience confusion and embarrassment as they try to return to a so-called normal life and are dealing with the physical side effects related to their diagnosis and treatment. I can attest to that.
Several years ago when cancer struck me I fought so hard for my life. I endured the countless needle pricks, blood transfusions, nausea, vomiting and physical therapy so I could live to see the sunrise and the snowfall. I am so grateful to be alive. Still, the aftermath from the cancer treatments that I received have affected me in many disturbing ways: I wake up every day to a constant ringing in my ear which never stops; I have trouble with my memory; and I may never be able to have children of my own. How ironic that I battled so hard to save my own life, yet now I may never be able to give life. And…Senators, I am considered one of the success stories.
Although there has been a significant increase in the cure rate of childhood cancer, children still are getting sick at a steadily increasing rate. In small towns throughout our nation possible cancer clusters exist. Parents are trying to get authorities to investigate these clusters and to discern what caused the disease patterns. Scientist and health activists say the government’s current response to disease clusters ranges from piecemeal to non-existent. Some people are told that their small populations render them statistically insignificant. There is nothing insignificant about even one child becoming part of a cancer cluster then dying of that cancer without ever knowing why. Trevor’s Law seeks to rectify that by allowing people in small communities to have their voices heard and their concerns validated about the environmental impact on their children’s health.
Environmental toxin exposure is insidious in all instances, yet it affects our children in greater proportion than adults. Children are more vulnerable to chemical toxins than adults because they have faster metabolisms and less mature immune systems.
According to Dr. Sandra Steingraber, we are seeing more “…brain tumors in four-year-olds, ovarian cancer in adolescent girls, testicular cancer in adolescent boys. These cancers are rising rapidly, and of course children don’t smoke, drink or hold stressful jobs. We therefore can’t really evoke lifestyle explanations. There are no good familial links that we know of. We are beginning to recognize that not only pre-natal life but adolescent life is a time of great vulnerability to cancer causing chemicals, when the connection between health and the environment becomes even more important.” (Steingraber interview by Rita Dixit-Kubiak, Seacoast Spirit, Vol. I, No.5).
Toxins migrate right through geographical boundaries and across property lines. Cancer spares no ethnic group, no socio-economic group nor any geographical area. In its wake we are left with the burden of enormous personal and social loss.
I would also like to stress that childhood cancer doesn’t only attack the victim, it greatly impacts every member of the family. Siblings often experience concern, fear, jealousy, guilt, resentment and feelings of abandonment which can last long-term. Relationships between family members can become tense; there can be stress on a marriage, and frequently a family breaks up.
I vowed that if I survived I would dedicate my life to helping other children with cancer who otherwise would never be heard. I truly believe I have been given a second chance at life to convey to you on their behalf the urgency and importance of addressing the proliferation of childhood cancer clusters and the methods of reporting them. For them, I strongly encourage you support Trevor’s Law.
In closing, I would ask you to consider how much your child or grandchild’s life and well-being are worth? And while you’re doing that, please close your eyes for a brief moment and picture a world without children.
Thank you.