Diagnosed: September 2, 1999
Written by Laurel Simer
My Cancer story begins in 1999, when I was ten years old. At the end of August, my family went to a carnival at our school. My older brother and I were racing on an inflatable obstacle course when I tripped and hit my head on his knee. Over the next couple of days, I had headaches and we figured that I just had a concussion. But when a nurse at my school noticed that one of my eyes was more dilated than the other, she thought it would be best to get it checked out.
On September 2nd, 1999, I went in to get a CT scan. A couple hours later, we got a phone call that I needed to be rushed to St. Paul Children’s hospital to get an MRI. There, in a small examining room, we were told that I had a lemon-sized malignant tumor on my brain stem, three inches behind my right eye. To be honest, I didn’t really know what that meant, but when my mom started crying, I knew it couldn’t be good. My family was told that my tumor was a Diffuse Instrinsic Pontine Glioma, or DIPG, and that with all likelihood, I wouldn’t survive to see my 12th birthday.
My parents met with over 50 doctors and the consensus was the same: I would make it maybe nine months with treatment, six months without it. However, they were determined to not accept this answer. They kept searching and finally found a doctor who thought an experimental treatment might work. So, for the next 21 months, I took 27 pills a day, ranging from immune system boosters and green tea pills, to my main medicine, Accutane, which I was taking 50 times the normal dosage. Luckily, there was no tumor growth, and finally I was taken off the medicine, right after my 12th birthday, and have not had any treatment since then.
Since 2001, I have been monitored by the National Cancer Institute in Washington DC, which I visit annually to get an MRI and other tests done.
No one can explain why I’ve remained stable. However, over the years, I have learned the importance of sharing my story to raise awareness and help others. I have realized just how lucky I am. And I want to do everything I can to help other kids and other families, so that they do not have to go through what my family and I went through.
