I Beat Ewing Sarcoma To The Ground!

I was ten years old when I was diagnosed with Ewing Sarcoma in 2000. My prognosis was rather well, a 75% chance of survival. I was fortunate enough not to need any radiation therapy, but I did have rounds of chemotherapy periodically for nearly two years. I also had a surgery called the Winklemens Procedure, which was a spin-off of the Van Nes rotation (for more information on what the Van Nes is [since none seems to exist for the Winklemens] follow this link: http://www.amputee-coalition.org/inmotion/mar_apr_05/rotationplasty.html). The only difference between the two is that in the Winklemens, you don't keep your hip joint and instead your knee replaces it, when in the Van Nes your tiba would be fused to the remaining femur bone and the knee discarded. I was the third person and first female to get this surgery done in the province I lived in. For the most part the surgery went well, excluding some minor complications (lead poisoning from the staples, the area wouldn't close properly,I got an infection as a result, and they forgot to take out the growth plate so the leg grew longer then it was supposed to). I have been cancer free for eight years now and plan to continue that way for the rest of my life.

KibblesNBits KibblesNBits
26-30, F
2 Responses Feb 23, 2010

hey! thank you very much for the answer ,the info is very useful, unfortunately, Roua, the little girl, is currently in the hospital, not much school in the last year, we will keep an ear open to her cravings when they appear, and i am glad you've mention about the Ensure type of food,and the fact that you didn't like it but you took it anyways,your story will help her i am sure as i am planning on sending it to her,may God bless your health and have a wonderful day,Monica

hello to you, lucky one ! congratulation on your recovery, i know a sweet little girl, 12 years of age that is battling right now this disease, i was wondering how did you cope with the loss of appetite and nausea due to the chemotherapy regimen,any advice?

Unfortunately there isn't much a person can do other than just move through it. It's was a constant struggle, because not only did you not feel well enough to eat, but the food itself smelled oddly and tasted worse due to the influence of the drugs. The only thing I have to offer here would be to start taking up Ensure to keep her weight up (I drank that stuff, and it tastes awful but because I was diligent I never went on a feeding tube) and to also eat foods that aren't too acidic, as that will not help with an upset stomach. Pizza was always a favorite of mine, and for the most part I didn't have too much trouble keeping it down and I found that the smell and taste weren't too different from what it normally was compared to other foods that tasted drastically different. If she's like me she'll also get cravings for certain food, so I guess just be sure to listen to what she wants and try to have it on hand at the time. I would also talk with her teachers and explain to them that she should be allowed to have snacks during class hours, so that way if she even feels remotely hungry she can eat right then and there. The appetite for food is fleeting at best and very random in its onset. My parents did this for me and it worked out well. In terms of the nausea the only thing I can say for that is gravel becomes your best friend. Not much you can do about it, but maybe check into a natural health food store to see if they have any suggestions. That's all the advice I have in terms of those two issues, because for the most part it's completely out of your control. My number one suggestion to her is to listen to what her body is saying, and try to work around it. If it's upset, then obviously eating something spicy and heavy wouldn't be in your best interest, when compared to say a light soup with some bread. Best of luck, if you have any further questions don't hesitate to contact me again!