The girl behind the Fiona Elsey cancer centre

A SILVER mug takes pride of place on oncologist Dr George Kannourakis' desk.

The mug is engraved: "Dear George. Thank You. Love Fee. 6-10-91."

The present was from cancer patient Fiona Elsey, the thank you was for promising to continue his vital cancer research in Ballarat and the date is the day she died.

Fiona was only 14 when she passed away but on her deathbed she made both Dr Kannourakis and her mother Gail vow to continue the fight against cancer so no-one would have to suffer like she did.

Twenty years later, Fiona's dream has become an internationally-recognised cancer research institute, conducting the only worldwide trial into personalised chemotherapy treatments. 

But who exactly was Fiona Elsey. And why was she such a visionary at such a young age?

Fiona Louise Elsey was born on September 26, 1977 at St John of God Hospital to doting parents Gail and Greg and adoring older brothers Mark and David.

A happy, content baby, she grew into a strong-willed and compassionate little girl.

"She always showed a lot of empathy. She was never one for pretence," Gail said.

At Delacombe Kindergarten, Fiona loved drawing and playing games.

She was also an expert card sharp who enjoyed games of euchre with her grandfather. 

"She cracked it if anyone beat her. She was a very competitive card player. And she hated anyone cheating."

Fiona's birth card from St John of God Hospital.

Fiona attended first Delacombe and then Alfredton primary schools where her sunny nature made her lots of friends.

"She loved sleepovers, all the girly things. When she was nine, she was really into make-up.

"She picked her own clothes and they were always very bright. She was a very loving girl. It was always kiss, kiss, kiss."

In February, 1990, she started year seven at Ballarat High School.

"She was so excited, she couldn't wait. She couldn't get there quick enough."

Fiona also loved sport, particularly squash, tennis, swimming and bike riding.

On May 31, 1990, Gail took Fiona to the doctor with severe back pain. She was put into hospital for tests, with her GP Dr Kiernan Halliburton calling Gail and Greg for a meeting about 7pm.

"Little did we know Kiernan's walk to the nurse's station to talk to us would change our lives forever."

Fiona had a mass in her stomach wall and was sent to the Royal Children's Hospital where she first met Dr Kannourakis.

"Seven days later they told us she had Ewing's Sarcoma. It took a week but it felt like a year.

"When we found out I couldn't feel my legs I was in such shock."

Fiona screamed and cried when told the news.

"She started to fight back. Her strong will became an asset."

"She went from an innocent child into a world of not knowing what lay ahead. She was a normal, healthy little girl who spiralled into a world where she saw death around her constantly.

"She saw other children not winning the battle and faced her own mortality every day."

Due to the solid bone tumours' size, which actually stretched across her spine and rib, Fiona was only given a 10 per cent chance of total recovery.

"At first she was angry and shocked. She just wanted her life back. 

"Then she came to the realisation of what she was facing and she started to fight back. Her strong will became an asset."

When she began her treatment, Fiona was in so much pain she couldn't walk.

But gradually the chemotherapy shrank the tumour, with the Elsey family hopeful she had turned a major corner.

"Between the chemotherapy and the stubbornness to get better, she could walk again and the original (spinal) tumour had died."

Fiona was then operated on to remove the rib tumour but, devastatingly, another tumour was found on her aorta, forcing surgeons to collapse her lungs to remove it and putting her in intensive care.

Fiona fought back to face six weeks of radiotherapy before she was finally allowed home on December 12, excited to be with family and friends for Christmas.

On December 26, she was readmitted with an infection that kept her in hospital until April.

During her stay in the RCH, Fiona loved to help feed the babies, doted on the younger children and met her "soulmate" Mark, with the pair attending heavy metal concerts together.

Fiona with a poster of heavy metal band Skid Row.

In June, 1990, Fiona's beloved grandfather died. And in July, doctors told the Elsey's there was nothing more they could do for Fiona.

"She just screamed: 'I'll do anything. I don't want to die'. Greg just sobbed but I never said a word. It was like someone had run a knife through my heart."

In August, Fiona's grandmother also died suddenly in her sleep, just two months after her husband and leaving Gail facing the death of both parents and the imminent passing of her daughter.

Gail and Greg brought Fiona home and nursed her for seven weeks, with Dr Kannourakis, who worked at RCH but lived in Ballarat, bringing her morphine nightly on the train.

Fiona lay on a hospital bed in the loungeroom and Gail lay beside her, never leaving her side. 

Every morning at 5.30am, Fiona would wake and ask her "Pooch" (Gail) to open the curtains so she could see and hear the birds outside their Delacombe home.

But during her time at RCH, Fiona also became very interested in Dr Kannourakis' research.

"Fiona realised early on that research was so vital."

Gail said Fiona went from being a young girl of 13 to a girl with wisdom far beyond her experience.

"She became very passionate about helping others. She kept asking George 'why not Ballarat, why Melbourne?'."

Between stints in the hospital, Fiona helped fundraise for cancer research.

"We would knock on doors and they would slam the door in our face and Fee would just say 'let's go to the next one'.

"I promised her on her deathbed to never give up fighting, never to be ashamed, to beg for people with this cancer."

Fiona's mother Gail.

Fiona died in St John of God Hospital on October 6, 1990. Mark died just 10 days before her.

"I think I was so lucky. Our 14 years together were so precious. I may have lost her physical presence but her love is carried inside me.

"She was bubbly, happy, strong-willed. She had an electric smile and a contagious laugh. A cheeky laugh."

Dr Kannourakis, a paediatric oncologist and haematologist, first met Fiona when she came into his Royal Children's Hospital clinic.

"We both realised we were from Ballarat so the rapport was there. We had a lot in common and became buddies a bit," Dr Kannourakis said.

He said after it was decided nothing more could be done for Fiona, he helped the Elsey's nurse her at home.

"I started bringing supplies of morphine from RCH to Delacombe. It became a ritual every night and I got to know them pretty well."

He said Fiona often asked just for a quiet chat, with no-one else in the room.

"She knew she was dying and she knew what her wishes were. It was pretty clear she thought my research should happen in Ballarat.

"It sounded like a bit of a far-fetched thing but I said I would do it. 

"Even on her death bed, she had one last go at it and grabbed my hand and said remember what you promised me."

Dr Kannourakis said Fiona had amazing insight for a 14-year-old.

"She was one of the first to volunteer to trial an anti-nausea drug. She understood the concept of research at a very young age. She was a very courageous and insightful girl."

Shortly after her death, Gail rang Dr Kannourakis and asked how they could support his research work.

Oncologist Dr George Kannourakis.

A support group for Ewing's Sarcoma research was formed in Ballarat. Then Dr Kannourakis began working in Ballarat, retraining as an adult oncologist and haematologist. He is still the only doctor in Australia to qualify to treat both children and adults.

In 1994, Gail set up a meeting between Dr Kannourakis and then University of Ballarat vice-chancellor Professor David James to set up a collaboration.

St John of God Hospital donated a small paint shed for a research laboratory.

Dr Kannourakis left RCH, along with a part-time scientist paid only on a month by month basis.

Despite the early struggles, the Fiona Elsey Cancer Research Laboratory was opened in late February 1998.

In 2004, a board was formed after Bill Wood, whose wife Sue was battling cancer, literally knocked on the door and asked about their research.

He wrote them out a substantial cheque and became the centre's first board chairman.

More laboratories were opened, an upstairs auditorium was created and an office area was built over a disused boiler house.

It was eventually renamed the Ballarat Cancer Research Centre but last year it became the Fiona Elsey Cancer Research Institute to commemorate the 20th anniversary of Fiona's death.

"This is the legacy, this is Fiona's dream, what she left behind."

Among the research being undertaken are personalising chemotherapy treatments for patients, with a world first lung cancer trial currently underway.

They are also studying the role of immune cells in various cancers and a rare cancer of the immune system, Langerhans cell Histiocytosis, with a paper hopefully published this year.

The institute is also a tumour tissue bank, including Fiona's, to help support clinical trials.

"It's gratifying to see the place starting to buzz. It always reminds me of Fee.

"She would be very happy with the way it's working out."

Fiona Elsey was the driving force behind Ballarat's cancer research institute. PICTURE: SUPPLIED

Fiona Elsey was the driving force behind Ballarat's cancer research institute. PICTURE: SUPPLIED


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