Sile Bao

Growing up with GIST

15-year-old is a fighter determined to make the most out of her life

Editor's note: This article is part of a series on children and teens with GIST, written in their own words.

GIST — Gastrointestinal stromal tumor. To doctors, this is a rare tumor that is usually found in the stomach. To me, a 15- year-old girl, it is something that has changed my life in so many ways. Growing up, I was always a healthy girl. I never got the flu or even a cold. Whenever I even fell and scratched my knee, I would get right back up and put a Band-Aid on it.

One day I had to go to my pediatrician to get a yearly checkup. He noticed that I was abnormally pale and advised me to take a blood test. He asked me how I was doing physically and I told him that I was tired a lot but I did not really take it to heart. The next day my mom came to my school to pick me up and told me that I needed to go to the emergency room. I was alarmed and found out that it was because my hemoglobin had shown up to be only 5.2. At that time, I had no idea what that meant and all I remember was waiting for hours in the emergency room, feeling dizzy and tired. The doctor finally came and diagnosed me with iron-deficiency anemia.

After that, I resumed my normal activities, dancing four days a week and playing in piano competitions. Of course, I had to take iron pills, but other than that, life was good!

Soon after, my stomach started to hurt a lot. My mom and I talked to my doctor about it, but he insisted that it was the iron pills. Then we went away for Thanksgiving. That week, my stomach hurt so much. At first, I thought it was just the turkey and that I was suffering from I-ate-too-muchitis. However, the week following Thanksgiving, I was unable to eat anything. My doctor finally agreed that it was time to bring in another doctor. I went to visit a G.I. doctor and she performed an endoscopy on me.

At that point, the doctors should have realized that something was wrong. There was fresh blood on the site of my endoscopy and there were several masses around my stomach. However, the doctors believed that it was just swelling and ulcers.

I was put on antibiotics. Another couple of months passed and I was scheduled for another scope. That is when the doctors saw that I was still bleeding internally and the mass had grown. That week I was diagnosed with GIST and I was scheduled to have surgery to remove my 7- centimeter tumor.

Ever since my surgery, life has been very different. Last year I was unable to attend school. In the beginning of the year, it was due to the side effects of my surgery. My stomach was sore all the time and my body was very weak. However, in January, the cancer reoccurred and they found an almondsized tumor in my liver and cancer activity in my pelvis. Surgery this time was not an option so I was put on the miracle drug — Gleevec. This drug made my life even more difficult than I ever imagined. I could not sleep at night without pain medication because my joints hurt so much. I was not able to attend school anymore because of the pain, and thus I was put on home instruction. I was losing my friends because I could not see them at school. I was so unhappy.

Since then, I have been off the Gleevec because it was just too toxic for my body. Part of me feels scared because I do not know what will happen to the cancer activity inside me. However, every day I am a fighter.

The hardest part of having cancer is knowing that it is something that I will always have to fight. Because the chance of GIST reoccurrence is so high, it is often discouraging for me to know that I will have this disease for the rest of my life. However, I have come to the realization that this is and always will be part of my life. And you know what's amazing about that? I will never stop being a fighter, because as long as I have this disease, I will fight it. For some strange reason, that is very comforting to me.

When people ask me how I feel about having cancer, I tell them that it has been almost like a blessing in disguise. It has made me stronger in so many ways. I used to view life as a routine, as something that had structure. Now, life is something that I can enjoy and have fun with! As a result of my illness, I have become an active member of my church and closer to those people whom I consider to be my "real friends." I use the term "real friends" because this disease has really helped me recognize those who really care about me. When I was sick, there were certain people who always visited me and made sure I was feeling well. Other people just simply did not want to hear about my situation anymore. Thanks to my illness, I now have certain people I can count on.

These people keep me sane through those hard days. There are some days when I just want to yell and scream at the world because I feel yucky, and those loyal friends keep me grounded. They talk to me, take me out, make me laugh, and pray for me. I really do not know what I would do without my family and friends.

I guess this whole ordeal has been extremely hard on my family as well. Sometimes I tell my mom, "Why are you getting so upset? This is my illness and it has nothing to do with you." Then I realize how cruel I am in saying those words because everything that happens to me affects her in more ways than I will ever know. Yes, having cancer has broken this family up a bit but it has also made us so much stronger. I cannot help but feel that every time I get sick, it gets more and more frustrating for my parents.

Last year, I had no goals for myself and I just let GIST take over my life. However, this year I am determined to live a normal life. I have missed days of school but I will make them up and ace this year. My dream is to go to a good school and become like a person I met at the Cancer Institute of New Jersey. Her name is Christine and she fights for kids' rights at school and is also there for us to talk to her. She is my inspiration in so many ways and I would love to have a job like hers where I can help kids like me.

Now I am back in school enjoying every day. I consider myself to be a regular teenager who fights with her mom, does not clean her room, and does not do her homework (of course, only occasionally). Yes, I get sick occasionally, but I guess that just makes me a little more extraordinary than everyone else.

This article was reprinted from the November 2005 Life Raft Group newsletter.