My first problems were in my left leg beside the knee; this caused my leg to lock up all the time for no reason. This troubled me greatly so mum took me to the doctor and sure enough it was the MHE. So I waited and waited for my surgery, but this wasn't fast and I would come home crying almost every day so we had to keep going to the doctor to see if we were any closer to the surgery. I started to fall behind in my work at school. I waited four years for my surgery and I was 11 by then. By now the tumor was quite big. You could easily see it.
The surgery went fine and I was back to normal again, but then to find more and more bumps! I wasn't happy when I found the same bumpy bone on the right leg that was removed on the left, and all the same problems happened. My legs locked a lot worse this time, though, and I would have to go to the emergency centre each time to get it straightened out with laughing gas. It didn't help that my teacher didn't understand and wasn't very nice, either. Then we all noticed a large bump growing on my ankle and my finger was bending outwards more and more, causing pain to write and move it.
So, with all this pain, I had no option but to go onto crutches. I didn't like this at all because of my very sore finger. I hurt to waddle around putting all my weight on to my hand. So I tried a wheelchair, and it was much easier for me and all my friends loved to push me around. I was in a wheelchair for six or more months and the muscles in my legs were wasting away and my legs got very thin. The doctors didn't like this and told me I needed to walk, so I tried but this was very hard, as my legs were so weak. But I kept at it and finally went back to crutches for awhile. Then, when it was all looking up, I was blessed with the letter I had been waiting for, for so long. I got my operation and had a slow recovery because I got very sick from the sleeping gas and it was very sore because I had all three places operated on.
Then I was my bubbly self again. I had been sore breathing lately but just thought it was a stitch, when my dad was rubbing my back and he felt a big lump on my ribs and then I thought that it must be why it was hurting to breath.
So we went to the doctor and sure enough it was. He took my X-ray and said I was not to run, walk, jog, or do any physical activity because the growth was close to my lungs and heart and could puncture my lungs. I had to go to Dunedin for this one to a special heart surgeon. This took about 6 months and was the shortest surgery yet. It went fine, but I had very high blood pressure.
Now after my long wait I'm happy to be my happy self and if you are waiting for an operation right now, hang in there! Also, the teacher I have now is very nice and that helps alot!
I know how you feel, and if you would like to talk to me, I'd love to hear from you. Send me an email to Susan Wynn at mheandme@yahoo.com, and write "For Mercy" in the subject. Susan will send your email to me.
