My name is Alice and I am almost 14 years old. 

I was just living the ordinary life of an 11 year old girl but the day after my birthday I was told that I had a Ewing sarcoma located on the jaw and that I would have to do a chemotherapy for 12 months. It was hard to believe until I started losing my hair. Doctors were saying “come on, that’s only hair” but for an 11 year old girl it’s quite hard to put things in perspective.

The second hard step was my surgery in New York. Why New York? Because Geneva told us that the operation was unusual on children and too complicated. There was a risk my face would be disfigured. They proposed to send me to Paris. Fortunately I have incredible parents who, in the meantime, had searched and found one of the best surgeons in the world. With the help of a second surgeon and their team, they saved my face and my life at the same time.  They reconstructed my right jaw using my left fibula. When I am 16, the surgery will be completed.

Days before the operation, I didn’t want to hear what was going to happen to me. Each time my parents or the doctors tried to tell me something, I did not want to hear. I realize today that for you, doctors and nurses, it is a tough situation. On the one hand, if a child doesn’t want to know, you can't force him. But on the other hand, he has to know because he will always hate you if he wakes up with a leg missing or with large scars on his face. A child will never let you enter his world if you try to force your way in. If you do so, he will pay you  back.

On the surgery table, I was terrified. I couldn’t relax. I mean you know, you really have to trust the doctors who are anesthetising you to feel relaxed. But how can you put your trust in perfect strangers? Surprisingly the surgeons told me that a member of my family could stay with me in the surgery room until I fell asleep. I chose my elder sister who has been more like a guardian angel to me ever since I was born. The surgeons decided to let her come despite the fact she was only sixteen years old. I felt safer because of her presence. As I fell in love with horses the first time I met one, my sister used my passion to take my mind off hospital. And I can still remember that she said something that made me laugh just before falling asleep.

I would like all the children in the world to be given the same privilege of being authorized to have someone they choose with them in the surgery room.

I had to have rehabilition for my mouth and leg and I wouldn’t have gone through all this without the help of my sister and my parents. The hospital personnel were so kind. I couldn’t eat because it was too painful and disgusting because I had to swallow liquid steak or spinach with a straw. As I hadn’t eaten for almost ten days, I was very weak. The doctors didn’t want to make a hole in my stomach to feed me so they sent me a nutritionist and together we found something that I liked.

As my leg was too painful, I didn’t dare to walk. Finally, the doctors told us to leave the hospital and so we had to handle the situation on our own. I think it was the best way to help us.

This trip to New York could have been my worst memory. But people were so kind and supported me so much, not only at the hospital but even in the streets… - I mean New York is a great city, but New Yorkers don't treat you like a different person even if you are in a wheel chair with a bandage full of blood. They help you and don't stare at you as though you were an oddity that had escaped from the Guggenheim museum.

I got another bad surprise after the treatment: I put on weight very quickly and I had never been informed about that possibility. I’m now trying very hard to return close to the shape I had before chemotherapy.

I also want to tell you that I never could understand why nurses wanted to wake me up at 7am every day. I mean you are not going to have a lot of things to do, so… Furthermore, at night, you can’t sleep because of the sounds of the machines, chemo treatment, checking temperature, blood pressure, etc… So, in the morning, I was so exhausted. But I had to fight with nurses who wanted to turn on the light or let the light come in.

We patients don’t have any privacy. Everybody comes in and goes out. You don’t have time for yourself. I don’t think that you want to have an audience when you are taking a shower.

I’ve just realised a few days ago that I might not have woken up one day. If I had thought just one moment that I could have passed away, I would have changed so many things in my way of thinking and of living my life. Instead of watching TV at the hospital, I would have made something of my days thinking that every one of them was much more precious. But during treatment I was just sure that it was just a bad time to handle and not that every day could have been counted.

Anyway, I’m just starting to realise that I was very lucky because sometimes parents can’t afford to go to another country to get better or different treatment. For example, last winter, we went to Singapore for an acupuncture treatment. The efficiency of this treatment is so obvious that I have decided that I want to study acupuncture to cure horses.

I don’t think that you realise how important every single sign of support is when you’re in hospital - even the simplest. For example, just as Dr. Pierre Wacker used to make me smile against my will when I was grumbling. People were very nice and brave…to put up with a girl like me. Seriously I must say a big thank you to everybody who took care of me, from nurses to doctors to everyone...

This experience has saved and changed my life for ever. I’ve grown up and I see so many things that people of my age cannot see. I think that before, during and after treatment are 3 really different lives. You don’t feel the same, think the same and live the same.