Patient Voices: Kat becomes titanium girl, makes a difference for future cancer patients

Hello my name is Kat Tiscornia and up until March of 2013 I was your typical 8th grader. I loved horseback riding, eventing to be more specific, skiing and spending time with friends and family. Then it all changed. I went to the doctor to have a large bump on my thigh checked out.  I was told what I thought might be a bad bruise had a high probability of being cancer.

After many tests, two biopsy surgeries for my lung and my leg, and a stressful couple of weeks, I was diagnosed with a rare form of bone cancer called Ewing sarcoma. There are approximately 200 new diagnoses of the disease in the U.S. each year.

My treatment included 30 weeks of chemotherapy and I spent nearly nine months in and out of the hospital. I’ve undergone surgery to remove the tumor and replace my femur with 5 inches of titanium and a new hip ball. I can now call myself the “titanium girl.”

I’ve had multiple MRIs, CT scans, PET scans and X-rays. I’ve also had multiple blood transfusions and have been poked so many times that I can’t remember how many. I’ve used a wheelchair, walker and crutches. I was also in a back and leg brace to set my hip for seven weeks straight, 24 hours a day.

But this isn’t about me. I want to talk about all of us kids at Seattle Children’s Hospital.

Finding my voice and hope at Seattle Children’s

At my 8th-grade graduation in June of 2013, I was asked to give a speech. I talked about what I had learned during middle school and about what having cancer has taught me. Afterwards, a teacher came up to me and told me that I have a voice and that not all kids with illnesses are heard. I didn’t understand what she meant at first. But after spending so much time this summer at the hospital I began to understand. I started to look around and noticed all the kids receiving different treatments at Children’s.

Being at the hospital you hear many different languages and see kids of all ages – from the tiniest of babies to all the teenagers. Some have a similar diagnosis to me and others are very different.  Some have no hair, some have difficulty walking, some have huge scars on their heads and some have difficulty speaking.

I guess the one thing we all at Children’s have in common is that we are all unlucky and lucky at the same time. Unlucky that we all have diseases, such as cancer, that we had no chance of preventing. Some of us were born with our diseases and some of us have gotten sick along the way. Sometimes even the doctors can’t tell us why we’re so sick. We haven’t had the chance to smoke too much or exercise too little. We’re just kids. But, we’re lucky that we have Children’s to give us hope for the future.

My two primary doctors are Dr. Douglas Hawkins, who is one of the leading oncologists for sarcomas in the U.S., and Dr. Chappie Conrad who is quite possibly the world’s best orthopedic surgeon for removing bone tumors and rebuilding bones. Both of them are at Children’s, not to mention all the other amazing doctors.

Making a difference for future cancer patients

I asked my mom to add up all my medical bills so far associated with my cancer. The total came to $725,000 and I’m not even done. This cost includes chemo drugs, operating rooms, hospital rooms and much more. I’m lucky my parents have health insurance, but even with health insurance my parents have paid thousands of dollars out of their own pocket. I’m lucky again because they were able to afford to pay. Unfortunately, so many of the kids at Children’s can’t. Did you know that Children’s is one of only a few children’s hospitals in the country that will accept a patient regardless of their ability to pay?

Kat 4I believe that raising money for research is important. It’s so important to me that I created my own fundraising site called Kat’s Crew to support bone cancer research. But that is research for the future and doesn’t solve the immediate problems of today. What every kid and teenager wants at Children’s is a chance to live for the future, to just be a kid, to play and hang out with friends. And that’s possible for many of us with the current available treatments at the hospital. But treatments and surgeries are expensive. I can’t imagine having to miss just one of my chemo sessions because my family couldn’t afford it. Or having to choose what treatments I could have or not.

There’s an amazing organization called Make-A-Wish. It grants wishes to kids like myself who are really sick. I know some kids have wished for being able to walk on the field for the coin flip at Husky Stadium or meeting someone famous. But at the end of the day all of us kids at Children’s have the same wish – whether it is to throw a ball, to ride a bike, to paint a picture in kindergarten, to hit a homerun, to participate in chess club, to go on a field trip to the aquarium in 3rd grade, to ski, to experience all the craziness of middle school, to act in a play, to score the winning goal, and for me personally, to attend high school, to ride my horse again, go to a dance, attend college and follow my passions. We all want our wishes to come true.

Hopefully someday Seattle Children’s will be a memory for me, but I’ll never forget all the kids there.  I’ve been at the hospital for too long to completely erase it from my memory and I don’t want to. I have spent a lot of time thinking about why cancer happened to me. Ultimately the only answer that makes any sense is so that I can make a difference for kids like me who are sick. It’s important to me that these kids are not forgotten about – that they have a voice and are heard.  Raising money so that every kid can get their best available treatment helps me to know that my struggle is worthwhile and that I can make a difference in the world.  Please help me by making a donation because together we can make a difference.

Visit Kat’s Crew to make a donation to support sarcoma research at Seattle Children’s.