This is my story...Maddy
You can't climb a smooth rock

Dare to be proud


For thirteen years, I was just a regular kid. I loved sports, and theater, and hanging out with my friends. I did a lot of equestrian stuff, as well as playing softball, field hockey, doing track and field and learning to row! I also took a lot of drama and music classes.

I guess, really, that I was the classic, overcommitted, full of beans young teenager! So, when my left leg started to hurt in 1994, I didn't think much of it. Yeah, I thought, I've fallen over and bruised it, I hit it on a hurdle, or got it when a horse tossed me, or something. No biggie. And my doctor, thinking the same, gave me antibiotics and sent me home.

That went on for a week or so, with the pain getting worse instead of better. My leg was also swelling a lot. Then, one day, my mother came home from shopping to find me in tears from the pain. She bundled me up and took me to the 24 hour medical center. The doctor there gave me some painkillers and scheduled me for a bone scan the next day.

In a bone scan, they inject a special dye that makes the bones show up really well in an X-ray - especially tumors. It turned out I had a tumor the size of a small grapefruit on my left femur, or thighbone.

My doctor had already called in a specialist, who told me that my tumor might be benign, but it was probably malignant. Either way, it needed to be treated right away. I was dumbstruck. Cancer? I couldn't have cancer! Oh my goodness, what were they going to do to my leg?

We were told that I probably had either osteosarcoma or Ewings sarcoma, the two most common forms of childhood bone cancer. We should, the doc said, hope that it was osteosarcoma. The worst case scenario was that it would be Ewings.

It was Ewings.

I thought that this was the worst news!
An MRI showed that I had a number of secondary tumors in my lungs, which decreased my survival stats somewhat. I didn't want to hear about statistics, those other people weren't me, and I had a huge determination to beat this, even right at the beginning! I'd have to say, the doctors telling me that I didn't have a good chance probably made me more determined!

And so the climb began in earnest...

I started chemotherapy on June 15th, exactly two months before my fourteenth birthday. It was really hard for our family - my baby brother was eleven weeks old! So it was very hard for my mother to spend the amount of time she needed to with either of us. I really needed her, but then so did my brother, and hospitals aren't good places for tiny kids!

She had so many things to juggle!

Chemotherapy was rough - I threw up, lost my hair, got mouth ulcers, was VERY cranky and I was never so glad as when we stopped chemo to do surgery on my leg. During my chemo, I'd had several severe neutropenic episodes, where the white cell count drops dangerously low. During that time, the only visitors I could have had to wear gowns and masks!
Puffy face and fuzz hair from treatment

My leg surgery, although a relief, was still a challenge. There are usually two types of surgery for bone cancer - amputatory and limb sparing, if they can't save the bone itself cause the tumor is too big. I had limb sparing surgery (thank goodness), where they removed my entire thighbone, and replaced it with a titanium prosthesis, specially designed to do some growing with me. Later on, because I grew so much, I had to have a new one put in. 

During my surgery, a number of nerves were cut and some of my arteries were damaged trying to get my bone out. Apparently it was quite stubborn! As a result, when I came out of surgery, I was told that I would probably never regain full use of my leg again. I would be lucky to walk without two crutches.

Me and a Best Friend

Now, as far as I was concerned, that was unacceptable. I was going to walk again, and, in time, I was going to run, no matter what the doctors told me. And so I had to begin the arduous task of learning how to use my leg again. I had many more months of chemo ahead of me, but I went back to school part-time, fitting in chemo and physiotherapy around school and my friends, which wasn't easy.

For a long time, I could only walk with two crutches. I got so frustrated in those days, thinking I'd never walk again, that everything was too hard. Those times, I had to tell myself that I was tough enough to beat this, and to prove everyone wrong.

What an obstacle

Eventually, I graduated from two crutches to one crutch. At school, my nickname rapidly became Weaver, after Kerry Weaver on ER, who walks with a crutch. Sometimes, that bugs me. Everyone else has nicknames based on what they like or the things they do. Mine is based on what I can't do, on something beyond my control. And I hate being reminded of that. I just want to be normal. 

In short, I'm back at school, as a senior. I turned seventeen on August fifteenth, and, up to then, I hadn't had any recurrence of my cancer. As far as I was concerned, it was never coming back, and that was more that fine with me! 

Yippee!!!


It's strange, but I wouldn't go back and change things. I wouldn't make the decision NOT to have cancer. I've grown too much as a result - I don't take things for granted any more, and I think I have a greater appreciation of life. Now, I'm an active participant in my life. Before, I was just a spectator. 
 

Guess which is me!

There are a lot of things that bug me - my scars, for example. I have scars from surgeries on my leg - and they are HUGE. I have one rule about how I dress - I don't like for people I don't know really well to see my scars. I really hate to wear short shorts or swimsuits. I don't know how I'd get by without opaque tights! 

I get treated pretty oddly because I limp, and I still use one crutch sometimes - my leg gets too sore and tired without it. People I don't know see that, and assume I've had a knee reconstruction or a car accident or something. And they're fine with that. Very sympathetic, in fact. But when I tell them I had cancer, their entire attitude towards me changes. They move slightly away, without realising, and either spend the rest of the conversation telling me how brave I am, or treat me like a mental defective. 
 

Guess which is me!

I don't think I'm brave. I just did what I had to do, that's all. No one ever gave me a choice about it. You have to handle it, or else you go crazy. I chose to handle it. It helped that I had an amazingly supportive family. My sister Lucy, who's three years older than me, was wonderful. 

We'd never been close before, but when I was sick she brought me edible food, told me jokes and gossip from school, ran errands for me and made life just a bit more bearable. On top of that, she had to look after our house, basically bring up my brother Benjamin while my mother was busy with me, cook and clean AND graduate high school! When Luce got her license, the two of us went on a huge road trip, a la Thelma and Louise. Just brilliant. 

My family was there for me

My mother, of course, got me through everything. She sat up with me when the pain was so bad that I would just cry for hours. She'd take my abuse without comment when I was cranky, and did all those icky things - holding sick bowls, cleaning me up, sponging me off when I had a fever - that nurses can't do quite as well as your own mother, and that makes all the difference. My strongest memory of my illness is of my mother singing me softly to sleep, or singing to comfort me when I was crying... Russian folk songs, popular tunes, the melody of a classical piece. It invariably soothed me, calmed me down, and gave me strength to get through the worst times and to see another day. 

It's my ambition to go mountain climbing in Switzerland and Austria someday. I keep setting myself goals, and I've achieved a lot of them. I'm competing (and getting placed!) in equestrian events again. I'm doing some plays and acting work, which I find to be therapeutic as well as fun! I go for a walk, with or without crutch, every morning in the time when I used to jog. I swim all the time. I'm going to graduate high school with my class. So I have to keep setting myself bigger, better goals! 

Well, that was plenty long, wasn't it? I hope you enjoyed my story! 

Love Maddy

rope

    Sister's story     Imagery for brother   Interview with brother

Maddy's poems

So many choices...It's up to you!

Post Script

Joan Fleitas,Ed.D., R.N.
Associate Professor of Nursing, Lehman College, CUNY
Bronx, New York 10468

Last updated: April 25, 2006