Hi , my name is Jordan and I am 15 years old . My life before a brain tumour was great. I had an active life in sports and out with my friends. I was 9 years old when I was first diagnosed with a brain tumour. When I was 2 I had a few seizures and was hospitalized. I never back then had an MRI or cat scan done to rule anything out. My mom kept insisted but the doctors never took my mom serious and thought she was just being and over-protective-mom. I always complained of constipation, stomach upsets but the doctors never went any farther with it.
When I turned 9, I started having headaches, stomach upsets more frequently, my energy level started to drop and I felt tired a lot. My family switched family doctors and my mom voiced her concerns to the new family doctor .The family doctor suggested let’s do a cat scan to check everything out. Within days my parents were called in the office to be told there was a cloudy figure on your son’s brain and were told to take me to McMaster for an MRI.
After the MRI it was confirmed it was a brain tumour and we had to operate immediately to remove it. Apparently I was born with the brain tumour. The blood vessels were wrapped all around this brain tumour. It was a very risky operation and they really didn’t know what the outcome was going to be. I remember watching my parents both cry in the doctor’s office. I really didn’t know too much or understand, so I wasn’t scared. My biopsy was scheduled Feb 22 to determine what type of tumour it was.
We really had no time to think or worry. The results confirmed it was a Germinoma-Teratoma and it was in the Pineal part of my brain. A month later it was removed after an eight-hour surgery. I stayed in the hospital for 2 weeks and had to have physio to help with my walking, balance, dressing, eating, I was in a lot of pain. I couldn’t move my neck due to the pain I was in. I had a scar at the top of my head from the biopsy and a big scar going down from the top of my head to my neck.
I never had to have chemo or radiation because apparently they got it all. I will never forget that feeling. I remember saying to my mom I could have died. I remember her looking down at me with tears in her eyes and say but you didn’t. After about three weeks I was back to school and back in the classroom but I was able to leave to take rest periods because it was too much to sit in my desk all day. I would go to the health room and rest. My teacher at the time was very nice and even had the bed put in my classroom so I wouldn’t miss out on any school work. I continued to do great and continued with physio.
On my three year anniversary we went to Florida to celebrate 3 years tumour free. So my whole family went to Florida to celebrate my great fortune. I was scheduled for a routine check-up a week after we got back to make sure everything was great. After a few days my results were in and we had to go to the office for the results. My results were that my tumour was back and I had to go and have a biopsy done to check if it was malignant or not. I will never forget when the doctors told us the news. My mom and Dad were crying. It was back and malignant … I was scared. I remembered all the pain I had from the last one and now I have cancer. I was scheduled for chemo and radiation because they couldn’t remove it this time. I started to think positive thoughts that I beat it last time and I will this time.
My treatments started and I lost all my hair, got very sick from the treatments, missed 1 1/2 years of school. My balance was affected .My mom had to help with my baths, my memory was affected, I became very tired all the time, my friends deserted me, all I had was my family. My mom was my caregiver and she always made sure I drank all healthy drinks, food and took vitamins. She made smoothies for me made with lots of fruit that gave me a lot of antioxidants.
I am in remission today.
My memory has improved but I still have short term memory loss. I spend my days in my room or with my family because I am still too tired to keep up with my peer group. My friends have all moved on so I find things to keep me busy. I am still having stomach issues since treatment but we continue going back and forth to the doctors hoping for some answers.
Overall I am very happy to have my life and I want to be a child life counselor when I get older so I can help other children. I go for check-ups every four months. I try to think very positive and give hope to a lot of people.
I even made a rap up about my life.
I enjoy telling my story because it helps me while helping others.