Hello, my name is Rachel

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At home on April 28, Rachel rubs her head on her 2 1/2-year-old chocolate lab and coon hound mix Cocoa Chanel. (Elizabeth Robertson / Staff Photographer)

Hello, my name is Rachel. I am 11 years old. I am a competitive swimmer, a figure skater, a jazz dancer, and now I am also a cancer patient at Children's Hospital Of Philadelphia (CHOP). I have a rare bone cancer called Ewing's Sarcoma. My parents brought me to CHOP, even though we live two hours away in Highlands, NJ, because they wanted me to have the best possible care there is.

Around Thanksgiving, I was having pain in my right knee. My parents took me to an orthopaedic physician - a bone specialist - who initially thought this was tendonitis from training with my swim team. He told me not to train with fins for a few days, take a pain reliever, and things should be fine - and they were for a few weeks.

Just after Christmas, my knee started to hurt again and my parents made an appointment to go back to the bone doctor. This time my right thigh was swelling up and the pain was getting so bad that I had trouble sleeping. When we went to the doctor, he took more x-rays and really didn't see anything. But after seeing the swelling in my thigh, he said that I needed an MRI to get a better idea what was going on in my leg.

My MRI was scheduled for Thursday, Jan. 20. The next morning, while I was at school, the orthopaedist called my parents and told them there was a "mass" in my leg and he thought it could be Ewing's sarcoma, a rare form of bone cancer that strikes children and teenagers. My parents rushed to the doctor's office. He showed them the MRI films and pointed out what he thought was the tumor.

My parents later told me that this was a very difficult thing to hear. But when I came home from school that day, my mother didn't say anything until I said, "So, did you hear anything about the MRI?" We talked for a few minutes and she was obviously trying not to alarm me. Finally, I asked whether it might be cancer. She admitted it might be.

Fortunately, my bone specialist used to work with Dr. John Dormans, the head of orthopaedic surgery at CHOP. I was able to get in to see Dr. Dormans first thing on Monday. I later came to know this was a really good thing because every day counts when you're fighting a cancer that grows as fast as mine.

Dr. Dormans told me that I would need a biopsy to get a good diagnosis of whether it was cancer in my leg. I felt like my heart was going to sink right out of my body and into the center of the earth. Even though I knew it might be cancer, when I heard it from the doctor, it became real. I was crying too much to listen carefully to everything he said.

Dr. Dormans did the biopsy on my leg later that week and confirmed that what I have is Ewing's sarcoma. I had lots of other tests to see whether the cancer had spread. Even though it was only in my leg, my doctors said I would still need chemotherapy to kill any cancer cells they couldn't see. So from February until two weeks ago, I had chemotherapy every other week. Chemo makes me much more tired than usual, and it made my hair fall out, but otherwise, the side effects haven't been too bad.

I feel really good about the team working with me at CHOP. The oncology team actually wrote the treatment protocol that's used around the world to treat Ewing's. The team developed a roadmap of my treatment plan that lays out every step and schedules every test, every medication, every treatment.

My surgery is tomorrow. I'm scared, but optimistic.

Over the next few months, I plan to share the rest of this journey with you as I see it happen.


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Click HERE to read Marie McCullough's article introducing Rachel Kovachs and her blog.

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