Jas, Rhabdomyosarcoma by Charmaine Lyons

Scar Stories Jas Rhabdomyosarcoma by Charmaine Lyons

My mother fell pregnant with me late in life, and it wasn't long after I was born that we hit our first obstacle in life. My mother had a major stroke which left her partly paralysed down here left side. She had to learn how to do everything again including how to walk and talk. This is no mean feat for anyone, but especially for a woman who had just had a baby and was still breastfeeding. With the help of our family mum got better and was able to walk again. She even beat me to walking by one day.

It wasn't long after that we hit our next obstacle. At 2 ½ years old I was diagnosed with Rhabdomyosarcoma, which is cancer of the muscle. The doctors told my parents that I would more than likely not live past my 3rd birthday. We then went through countless operations, treatments and hospital visits. We were still living in Mackay and most of our treatments were in Brisbane which meant that we had to travel back and forth between hospitals. I don’t really remember too much of this but I do remember that my family would try and make it a fun experience for me even though I was in a lot of pain. We would have wheelchair races around the hospital and even have picnics in the wards. One of the things that stood out for me was the cubby house in the court yard. I would spend so much time in there before and after treatments and even after the appointments. I guess for me it was an escape. So thanks to my parents, who wrote to the Make-A-Wish Foundation and asked them for a cubby house for me, I was thrown a big 3rd birthday party and surprised with my very own exact replica of the one in the hospital.

It was only a few months after that I was cleared, well so we thought. It was only a week or two later we were back at the hospital only to find out that the cancer was once again back. This time even worse. I had some large doses of chemotherapy as well as radium and stem cells. Though all of this I lost all my hair and I wouldn't eat. My body thought that a grain of rice was enough.

For me, my body has scars but they tell a story of a young child that has not only survived cancer but has kicked its butt.

 

...my body has scars but they tell a story of a young child that has not only survived cancer but has kicked its butt.

We moved on with our lives after that. I was at school and mum was doing her things, and on the weekends we would go out on day trips and do all different types of fun activities. But then once again disaster hit. In 2002 mum found a small lump next to her left eye. She had a CSS skin cancer on her face, and it was heart breaking. She went through numerous operations and then treatments of radium.  After a few months she was finally in the clear…or once again so we thought. Like me, mum had relapsed with her cancer and had to go in for more operations. But this time it was from behind her left ear down to her shoulder then under her neck. After the operation I wouldn't let her look into a mirror. When she was finally able to see the scar that was left she wouldn't leave the house. It took me many months to get mum out of the house, and when I finally did, people would just stare and for mum, that hurt.

Years on and believe it or not life couldn't be any better. Last year on the 27th of November my partner and I found out that we would be adding to our family as I was six weeks pregnant with our first child. This was a surprise but a happy one, as the doctors told my parents that after all the treatments I had been through that I would possibly never have children. I was over the moon. It was the one thing I had always wished for and for it to be coming true is a miracle.

So for my mother and me, life has been hard but we have pulled through it together, which has left a bond so tight that nothing could break it. Everyone has their ups and downs but it makes us who we are. I may not have had a normal life by other people’s standards but to me this is my normal life. We care for each other as family as well as friends. We don’t want people to feel sorry for us or even pity us, as our experiences and our scars have made us who we are.

They are our story.

Scar Stories Jas Sue by Charmaine Lyons