Daffodil Day: Marking 20 years since diagnosis

After six weeks of experiencing severe knee pain, she consulted a doctor and, after many visits and tests, it was revealed she had a large mass at the base of her spine.

Kristy hopes she can share her story as part of Daffodil Day to help spread awareness for cancer research.

Kristy was told her tumour was considered inoperable but she needed to have immediate surgery to remove pressure off her spinal cord.

An MRI showed a tumour the size of a house brick located at the end of her spinal cord, pressing on the nerve ends.

"I was told that because of the location of the tumour there were many risks, one being I would not be able to walk," Kristy said. "Although this was scary, I had no choice."

After the surgery, Kristy, from Bendigo in central Victoria, had physiotherapy to build up her muscles so she could get back on her feet.

This highlight was short-lived.

"I will never forget when a team of six doctors walked into my room to give me results from the biopsy they had taken of the tumour," Kristy said.

"My tumour was diagnosed as Ewing's sarcoma, a soft tissue cancer.

"I was devastated. I thought that cancer was something that happened to others and that it would never happen to me."

Not long after, near the end of August, Kristy learnt she would be moved to Melbourne's Peter MacCallum Cancer Institute to begin chemotherapy.

Her 21st birthday was just two days away.

IN OTHER NEWS:

"On my birthday they discovered that, while trying to insert a port to administer my chemo, my lung had been punctured so I required a chest tube and was put on oxygen," Kristy said.

"It was not exactly how I pictured my 21st.

"My chemo had to be put off until my lung healed. My veins were skinny and deep which made them hard to access, so when my lung healed the doctors decided to try to insert another kind of port.

"While inserting this port my other lung was punctured and they had to insert a chest tube to repair it.

"This time I developed pneumonia and was moved to the critical care unit."

After five days, Kristy was sent home for two weeks to recover.

"The year was long and intense. I started off with chemo then moved onto six weeks of radiation five days a week," she said.

"After my radiation treatment was complete I had an MRI scan of my spine. I was so excited to learn that my tumour had decreased in size dramatically. The treatment I was having was working."

The doctors allowed Kristy to go on a holiday to the beach before her next lot of chemotherapy.

"I was so excited to be getting a bit of freedom. I would get time to be normal for a change," she said.

"Little did I know what was ahead for me."

On her way home from the beach, Kristy was involved in a car accident, which left her with multiple facial fractures.

Her remaining chemo had to be delayed while the doctors waited for swelling to go down to assess if she needed facial reconstruction.

"Still a little bruised and battered, I was back 10 days later having chemo," she said.

Kristy continued chemotherapy for another five months, then had tests every three months. She was in remission for about one year.

"I had started back at work in my chosen career as a childcare worker and apart from going through the tests and waiting for the answer, I had put my experiences with cancer to the back of my mind," Kristy said. "I then started to get persistent slight headaches. This didn't cause me great concern as they weren't very painful and disappeared with Panadol."

It wasn't until she experienced a major headache that she went to see a doctor.

"The doctor in casualty diagnosed it as a migraine so I was treated and sent home," she said.

"After being home for a short while my headache returned more painful than before. It was unbearable."

After returning to see a doctor, Kristy was sent for a CT scan, which showed a bleed in her brain.

"The doctor was actually excited to have found the cause of my problem, but for me it was heartache and disbelief," she said.

"I shook all over ... things moved fast. Unsure if the bleed had stopped I was taken to St Vincent's Hospital Melbourne by helicopter."

On arrival, Kristy was seen by a neurosurgeon, who suspected a tumour.

"The bleed had caused pressure and swelling of the brain so I was sedated and admitted to the neuro ward. It was the waiting game all over again," she said.

"In the days that followed the pain subsided and another MRI had shown only what seemed to be blood, so I was sent home on the condition that they keep a very close eye on me with follow-up MRIs every month."

All the monthly MRIs showed no sign of a tumour and she started back at work.

But then Kristy's headaches started once again.

"I became worried but knew my MRI was coming up in a few weeks and decided to wait... Again the pain became so intense I thought best to go up to see a doctor.

"This time because of my history I was seen straight away and within a short time had a CT. This confirmed a growth."

Kristy said she was devastated.

"I remember thinking, 'I beat it the first time but I can't go through this again. I am not that strong'," she said.

"And what's more, I didn't want to put my family through the pain again."

An ambulance took Kristy to St Vincent's, where she went straight into brain surgery.

"The tumour had grown in the fluid of my right ventricle. It had grown five centimetres since the last scan just three weeks earlier," she said.

"My biggest fear was that I would not be the same when I came back from surgery. I didn't want to be a burden for my family. I remember wanting to say goodbye to each member of my family just in case things went wrong.

"After my surgery I was relieved to hear that the doctors felt they had been able to remove the tumour."

Days later, Kristy was told the type of cancer she had had been misdiagnosed originally. She had a fast-growing cancer called primitive neuroectodermal tumour, or PNET.

"I remember crying and then just totally shutting down. I couldn't bear the pain I felt within, let alone deal with what I had just heard," she said.

"A week later I was sent home just long enough to recover, but not too long as this cancer was fast-growing and they wanted to start treatment as soon as possible.

"There was no time to dwell on it. I was back at St Vincent's to have a port placed in my head so they could administer the chemo directly into the brain fluid.

"Nothing ever seemed normal about me as when they took me into theatre to place the port in my head they couldn't find the right spot. They had to staple my head up, came out and do a CT, then take me back into theatre again with the films to guide them."

Kristy returned to Peter Mac where a team of doctors informed her of the treatment plan: high-dose chemotherapy, a stem cell transplant, and possibly radiation to the brain and spine.

In the following weeks, Kristy's body reacted severely to the high-dose chemotherapy and she was moved to the critical care unit.

"It was touch and go for five days, during which I remember very little," she said.

"On the fifth day the doctor said to my family, 'I am one step short of astounded, Kristy's body is starting to heal without white cells to promote the healing'."

After completing her treatment, Kristy was in remission for nearly a year.

But then, after waking up in intense pain, she was flown to St Vincent's Hospital once again.

"Bacteria had entered through a small stitch left in the port in my head. The port had to come out," she said.

"At midnight I was taken into theatre. Doctors told my parents that the bacteria may not be treatable and that I could haemorrhage when the port was taken out."

After five days, Kristy had a MRI which showed swelling in the brain - but there was no sign of cancer.

"I have been in remission for 14 years now," Kristy says.

"My journey with cancer has been long and hard and there have been times where I have felt that I couldn't do it anymore. But from my experiences I have found that life is precious."

Kristy is grateful for the love and support she received from her family, friends and the people she met along the way.

"Without those people I wouldn't be where I am today," she said.

"Finally I have realised you can't dwell on the past or the future - it is the now that is of the greatest importance.

"Appreciate the gift of life."