My gist Story

I had a very normal childhood up until the 13th of March 2002 aged 11 when I fainted at school. My teachers and family presumed it had been because I had just done PE and was needing something to eat. However for the next month I was constantly fainting and being physically sick. I was so ill that it got to the point I could hardly stay awake. I slept for roughly 20 hours of each day.
Eventually on our final visit to the doctors, the doctor we seen took one look at my pale white face and said we needed to get to a hospital. The doctor we seen when we got there took some bloods so he could see if there was anything abnormal about them. I fell asleep and awoke when I heard the doctor come back in to the room. He looked very serious and said that I would need at least 12 pints of blood transfused into me as a result of a very low blood count. He also said that if left another day I would have gone into a coma.
A couple of days later I had an endoscopy to see if there was anything to show why my bloods were so low. This was when we found the tumors. None of the doctors could tell us what they were until one doctor suggested that they might be GISTs. No doctor in Scotland had seen this in any child before. I was the first one.
Little did we know just how these tumors would change our future. I had them removed in October 2002.Originally the doctors thought there were only 3 or 4 but I end up getting 13 removed. They varied in size from a few millimeters to a few centimeters. I was home 6 days after getting my operation which surprised everyone. However in February the following year they grew back. By this time I was under the care of a new specialist who recommended we wait and see if the grew. Unfortunately they did. In August 2005 I started on Glivec. My family and I were very optimistic and were lucky when I experienced no side effects at first. However as my body received more and more of it the side effects came also. At first it was only headaches and faint sore stomachs which then progressed onto sickness and extreme soreness in my stomach. Eventually the side effects eased and I was put onto a higher dose. However this made me very ill and I was taken off of it when scans and endoscopies showed no difference in the size of the tumors .It was decided that I would leave them and hope that they didn’t grow. I continued to get numerous scans, endoscopies and blood tests to make sure nothing changed. However they grew slowly and I decided that I wanted to have them removed. So on the 24th of June this year I had 8 tumors along with 50% of my stomach removed. I recovered much quicker than the doctors thought. I was expected to be in for about 10-14 days and came home after a week. I am recovering quicker than anyone imagined. One doctor I have seen said it looks like I haven’t even had anything done. I think that the reason that I recover so quickly is because I stay positive. Yeah I might have tumors that nobody knows a lot about but at least I get to find out about this crazy word. Yeah I might only have half a stomach and only eat tiny amounts but hey at least for the moment I only have one tumor which hasn’t grown in 5 years. I also think my family has a big part in my optimism. They don’t treat me differently from my sister or cousins. My sister and I still have arguments like sisters should and she doesn’t treat me like I have an illness. My parents don’t spend more time and pity me. This is what I want so it feels like I am the same as everyone one else. Which of course I am.

Posted on July 11th, 2008 by Stacey McAully
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