Kylie's Story

My story starts on Australia day 2006, I remember feeling fluey and things only seemed to get worse from there. I had aches and pains. I had to take two months off work to find out what was wrong; the doctors thought it was everything from pnemonia to asthma. It wasn't until I was rushed to the ER on March 27 that I found out. The cancer had caused my lung to collapse and fill with at least 6 litres of fluid, even pushing my heart to the opposite side of my body. The next day I was informed I'd have to go to Brisbane for a biopsy which revealed I have a rare cancer, called a neurosarcoma, and it was encasing my left diaphragm and the base of the left lung. It was a cancer which had grown off my nerves. It wasn't until I was in Brisbane that I told any friends - I guess I was hoping it was all a dream that I'd wake up and go to work. It was pretty much a blur for a bit, I remember waking up in the ICU, then next thing I knew I was on the ward. I remember my friends calling and asking again what hospital I was in... I thought nothing of it until 2 of them showed up in my room, with cards and bears and flowers from my other friends. I never knew they cared so much. I saw that, that day also I learnt who was really my friend. I was released mid-April for a weeks' rest, and to finish things up at work, making sure I had completed my traineeship. Only to go back in hospital to have a port put in and some of my ovaries removed so I would have a chance to have kids. That was the worst thing they told me that I would now be infertile and most likely sent into an early menopause.

I remember my first day of chemo sitting there thinking it's real now, I don't remember having emotion at all. The second day was harder, I had no idea what chemo did to you mentally and I wasn't yet half-way through. I had chemo going for over 120 hours. But my five-day stay in hospital turned into a month stay. I had bad reactions to chemo, with high fevers, a heart rate extremely high about 160 beats/min, and bad blood tests. Though I did make it home for my 20th birthday only to need another blood transfusion. My first 3 chemo treatments were like this. And my follow-up scan showed no improvement. By now it was September and I was so tired from the treatment, both physically and mentally. I bargained with my oncologist to allow me to have chemo at a hospital at home. He said yes providing I gained 6kg, cause he and I both believe my mere 39kg body wasn't healthy.

I was surprised by the difference being home made, I had more visitors than just my parents and cousins when they could. I don't remember feeling alone at the hospital, someone was always there. And there were no more fevers and no more blood transfusions. I even had more energy. And my next MRI was so much better, the tumour had shrunk 2cm which is huge for me. I remember being so excited to see the doc and tell my granddad when the doctor confirmed it. But unfortunately on the way to see the oncologist, we received the news that he'd passed away. There was so much going on it was nearly a year since it all started and now I'd lost him. The good news from the doc that day seemed bittersweet. It was the hardest appointment, I don't know what he thought of us, here he was giving us good news and we were upset. Though the scans were good I was put on more chemo for the following Monday and I had the funeral on Friday. That was the only time I didn't tell anyone I was in hospital. Except one friend I had known my whole life, she was my only visitor besides family.

I decided then it was time to do what I wanted now. Life is way too short, and watching The Ellen Show gave me the idea to write a life list. It's filled with all the stuff I want to do no matter how little. So I had 2 more cycles of chemo to get through now which wasn't so bad, I no longer felt nauseated from it and I had energy to do a little more. Although at times I did fake my energy just so I didn't look as bad. The time flew, I had my 21st in May of which I celebrated to the full. I had 2 parties, a holiday, a couple of dinners, and a trip to Seaworld. By the time my next scan had come up in late June, showing marginal decrease and increased necrosis (death in the cells). There was a great prospect of surgery, which meant a multitude of tests including a chest x-ray, CT scan, bone scan, lung capacity test, heart ultrasound, and of course the MRI, which all showed promising results. But it was all up to the PET scan to see how active it was. Unfortunately it was too active to operate on at this time. So I am currently on break from chemo and not sure when I will go back on. In the meantime I hope to fit in as much as possible.

Sadly Kylie lost her battle with cancer on 27 February 2008, aged 21 years.Her fight, courage, sense of humour, caring nature and positive spirit will always be remembered.Her commitment and enthusiasm for the mission of The Warwick Foundation is an inspiration. I was fortunate enough to have shared a friendship with her.

Deepest sympathy to her dear family and friends

Samantha Lehmann