Back in the stone ages- Or the late 1980’s I was busy being a second grader and rocking a pretty fierce side pony. On Halloween night in 1988 I was dressed as Cleopatra and loving it. My Mom had gotten me my first official costume from a costume shop in the mall. It was made of real fabric and not plastic that left it impossible to breathe. I have always had long dark hair so Cleopatra made the most sense. Plus, I think I was really into the idea of being an Egyptologist for about a minute.
That Halloween night happened to be pretty disgusting, weather wise. It had rained earlier that day so the grass and ground was still all sorts of wet. And my tennis shoes (which I’d protested because they didn’t go with my outfit) had horrible traction. I walked into my daycare center for the Halloween Carnival and almost immediately my legs flew out from under me and I hit the hard ground with a very graceful thud. I couldn’t stand on my leg. And I’d most definitely heard a snap when I’d hit the ground. My Aunt Brenda took me back home where my parents decided to take me to the local ER.
Once at our county hospital I had x-rays done that confirmed that I had indeed broken a bone. I’d snapped my femur in half. Just think about that for a moment. All I had done was slipped and fell. And that broke my femur in half. My ortho said there was a “small cyst” but informed my parents that it didn’t need to be biopsied. He said, “I see these in kids all the time and they’re always benign.” I was given a pretty great dose of propofol and this new doctor shoved a rod through my shin so I could be kept in traction for the next three and half weeks while my femur bone knit itself back together.
So, we waited. And waited. I got out of the hospital on Thanksgiving day. I was able to be at home with my family for the first time in nearly a month. My families life resumed. It was a new normal. In February, after the holidays, I started physical therapy. I was still being seen by the same ortho that declared I still had a cyst, but it’d go away. My new physical therapist was a bitch. I mean it. She was mean and awful and I’m pretty sure she didn’t like anyone, forget a kid. And I was scared and starting to feel pain in my leg. We were not fond of each other.
After a rather rough physical therapy session one Friday I went home for a long weekend. I felt like crap. My whole body was starting to ache and my leg now throbbed. I’d been assured several times over that it was just new muscle from where my leg was getting ready to walk again. I wasn’t so sure. That weekend I stayed in bed, hardly ate, and watched bad Nickelodeon TV movies.
Tuesday morning I got up and my Mom tried to squeeze my leg back into the brace I’d been wearing for four months. It barely closed. I went to school and therapy. My Dad had to beg for the Physical Therapist to do an x-ray. She just kept telling him I was being “a baby” and that I was “whiney.” Finally, we got an x-ray and then went to wait in one of the exam rooms where we waited on the Ortho. I remember that when the doctor came into the exam room he was pale. So pale that it seemed like you could see his beard growing under his chin and neck. He calmly explained to my Dad that I needed to see a new ortho over at Emory and gave us the name David Monson. I was to see him the next morning.
There are parts of this that are hazy and there are parts that are so vivid in my brain that it’s like a movie. I don’t remember Dr. Monson actually telling my parents that I had a large and aggressive tumor on my leg. I do remember my the way my mom’s face crumpled as she cried. I remember getting mad at this doctor because he’d made my mom cry. I remember having what felt like every medical test under the sun. I got out of the brace and they put me in a body cast that went up around my waist. It was white and big.
The next week we came back to the hospital for a biopsy. My tumor had been shown to be pretty localized. As long as a football and as round as a basketball. It encompassed my whole femur and had trails up into my hip. The biopsy was supposed to be short, 30 minutes to an hour at most. A night in the hospital and then home. My tumor was hooked into my femoral artery. When Dr. Monson tried to get just enough of my tumor for a pathology report, I’d lost massive amounts of blood. Four hours, and nearly an entire blood volume later, I was out of surgery.
Weeks went by. We met Dr. Roger Vega at Egelston Children’s Hospital (now part of Children’s Healthcare of Atlanta). We were told I had Ewing’s Sarcoma. A relatively rare form of bone cancer, especially for an eight-year-old girl. I was given a chemo protocol and we started chemotherapy. Chemo sucked. This was in the days before there were really great anti-nausea medications, so I was just sick. And I mean, really sick.
Like every good chemo kid, my hair fell out pretty quickly. I think I’d had one round of chemo when my mom found the first few strands of long hair on the back of my nightgown. I was actually pretty excited about it. Because I was eight and it sounded like fun.
I had three rounds of chemo when they did scans again to see how I had responded to chemo. It was also when Dr. Monson gave me the surgical options that he thought would be the best. His suggestion was to either have a limb salvage procedure where he would use an artificial bone to replace my damaged one. He explained this came with some complications. I would have to have repeated surgeries as I grew to lengthen the artificial bone because it wouldn’t grow as I did. I would also need to have radiation which came with its own set of complications. The other option was an amputation. My amputation level would be rare, a hip disarticulation, which means I would have a hip socket, but nothing in it. This makes it difficult to fit a prosthesis and most amputees at this level choose not to wear one.
I decided to go with the amputation. Yep. Me. On May 25, 1989 my left leg was amputated at the hip. I had fifteen more rounds of chemo after this. It was relatively uneventful for chemo. I made friends at the hospital. We found a new normal. I never thought about dying or not getting off of chemo. I never thought about relapsing or not going back to school.
In 1990 I went to my first summer of Camp Sunshine for the first time. I was in Cabin One with 12 other girls my age. We all had cancer. Some of us had hair, a few of us didn’t. Several of us were missing legs. None of it mattered.
On July 5, 1990 I had my last dose of chemo. In August I had my first set of post-chemo scans and was declared officially No Evidence of Disease (NED). In October I had my port-a-cath removed. I never looked back.
Thanks for sharing your story,Kati. You’ve told me bits and pieces before,but I really enjoyed reading your words as you told it. And seeing the pictures 🙂
Wow. Thank you for sharing. You are a strong and amazing woman. What a wonderful example you are for your beautiful daughters.
Thanks for sharing your story. Loved seeing the pictures of little Kati. Lots of love to you and yours <3
Thank you for sharing your story. What an example of strength you are for Eleanor and Kennedy!
Saw your book deal in PW Children’s Bookshelf and ended up checking out your website. 🙂 Congrats! My first book came out in 2015, so I’m a new author too. Hugs!
Thanks so much, Jackie!
Thank you for sharing this with us. I read your book “finding balance” and it really thrilled me and teached me a lot and made me more sensitiv.
I don’t know much about cancer, but my grandma just got it. That’s a whole different situation, but it’s still cancer and it still sucks.
Your book helps me to get along with this new situation and also helps me finding my new balance.
Thanks again for everything, you are a great writer!