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Trevor Johnson of Barrie, ON

My name is Trevor Johnson, I live in Barrie, Ontario and I’m a grade twelve student at St Joseph High School. I am also a cancer survivor. I would like to tell my story about what it is like to be a cancer patient.

At the age of four I was diagnosed with leukemia cancer of the blood. At this age how is a kid suppose to understand what cancer is and words like chemotherapy or radiation. I quickly realized that it was not something good and that I had to fight the disease. I was on treatment for three years. I could not go to the hospital in Barrie so I had to travel more than a 100 km to have treatments at Toronto Sick Kids hospital. After having chemo and driving back home I often felt nauseated. For the initial 2 months I stayed in the hospital. For the next three years I went back and forth to Toronto for monthly treatments. The treatments consisted of chemotherapy, radiation and lumbar punctures.

At age seven I completed treatments and my cancer was thought to be in remission. I was fortunate to have my first experience with camp Oochigeas. This was an overnight camp for children with cancer. The camps motto is "you have only failed if you have failed to try". I have attended this camp for ten years and I have started training to become a counselor in the future.
At age nine I relapsed with the leukemia. For the next three years I had intensified treatment. Eventually I ended up on a specialized protocol because of a life threatening reaction to one of the chemo drugs, which almost cost me my life.

At the age of twelve I finally finished my second course of treatment and have been in remission ever since. I am now a full time student at St. Joseph’s high school and have made the honour role every year. I am very involved in running; I belong to a competitive track club that runs all year round. I am also very involved in my school as a member of the student and athletic council.

As a result of six years of treatment I am dealing with some long-term effects. I have some educational issues because of missed schooling, effects of chemo drugs and cranial radiation. I have ongoing tutoring to help make up for these losses. The treatments have caused problems with my growth and back mobilization. I receive a monthly needle for growth and hormones and I work with a physiotherapist to improve muscle strength and function in my back.

Cancer is a disease that not only affects the patient but also impacts the whole family. My Mom had to stop working to be with me for treatments and follow-up. She looked to the local community for emotional support but found none. So she started a parent support group in Barrie. Then she became involved with Candlelighters Canada, which is an organization that helps families of children with cancer. My Dad had to work hard to support the family financially and he became a regular blood donor. The cancer affected both my brother and sister. They have benefited from camp Trillium, a cancer camp that also includes siblings. My older sister has been a counselor at this camp for three years.

This year I will be 18 and transferred to an adult hospital. I have received wonderful care at Sick Kids hospital and I hope my care will be just as good in the adult system. I need to be followed up for life to ensure that I remain healthy and prevent a second cancer from developing. These issues are common to all cancer survivors.

I was once given an autographed $100.00 bill from super star Shaquille O’Neal that said, "Never give up". This is my motto for life. I am determined to enjoy life to the fullest not knowing what challenges may cross my path.