Decade of pain: 'I'll fight to keep my little girl alive'
TAYLA Saunders is a beautiful young woman carrying a deeply sad secret.
Smart, funny and friendly, the 16-year-old's pretty eyes are gentle and tired while her body is exhausted and weak.
Tayla has spent close to 10 years fighting to survive an extremely rare cancer that's slowly consuming her organs and her bones.
At the age of seven, Tayla was diagnosed with atypical vascular lesion soft tissue sarcoma - a disease so rare that she is the only child in Australia with it.
"I was picking my daughter up from school when the doctor called," Tayla's mum Natalie said of the moment in 2007 when her world imploded.
"She was walking towards me as they told me she has cancer.
"It was extremely traumatic."
Surgeons removed the tumours but as they were non-responsive to chemotherapy, Tayla was sent home without further treatment.
"The best thing we could do was wait and watch," Natalie said.
"We'd go to Brisbane regularly for check-ups and she was getting the all-clear.
"As we neared the five-year anniversary, we had moved on with life and we were really happy."
But in October of 2012, something frightening happened, setting off a long and complex chain of events that transformed the young footy nut's life.
"She was in the shower coughing up blood," Natalie said.
"The next morning she did the same thing so we went to the hospital for chest x-rays.
"They came in and said to us that Tayla's lungs were riddled with tumours."
Natalie and Tayla headed to Brisbane for more tests including a lung biopsy that confirmed it was the same cancer.
"I just went numb," Natalie said.
This time around, the doctors decided to treat the tumours with chemotherapy but they held off for a few days so the little girl could see her favourite band, One Direction, in concert.
"There was evidence now that chemo would work so we decided she would have two doses," Natalie said.
On Christmas day, Tayla's weakened body suffered another blow as a staph infection took hold.
Her mother and sisters, Hayley and Skyla, watched helplessly as their loved one's temperature went through the roof.
"She had an uncontrollable heartbeat, her temperature was extremely high," Natalie said.
"We nearly lost her that day."
Tayla pulled through but it wasn't long before doctors realised the tumours had grown despite the chemotherapy.
"We were told to take her home and enjoy the time we had left with her," Natalie said of the devastating blow.
"These words just rang in my ears."
In January of 2014, Tayla lost her sight in one eye, leading to more tests that eventually revealed she had four tumours on her brain.
Her vision returned the next day as she was placed on a new round of treatment including radiation and steroids.
"That treatment is the reason why she is still here," Natalie said.
"You would never know this happened - the steroids were incredible."
About 13 months ago, Tayla started taking a new drug and she was travelling along quite well until scans at Lady Cilento Children's Hospital revealed some of the tumours had doubled in size
She had surgery to remove a growth from her cerebellum and doctors found a grapefruit-sized cancerous lump in her pelvis.
"She currently has three brain tumours and we've discovered one of the tumours in Tayla's lungs is suffocating and crushing her airways," Natalie said.
"It's been a real roller-coaster ride."
Surgeons removed the tumour from Tayla's pelvis but scans in September this year revealed a new growth in the same area.
"That ripped the guts right out of us," Natalie said.
"Plus they found spots in her arm bone."
Just a few weeks ago, Tyala had emergency brain surgery to reduce swelling in her head.
"In February, it will be 10 years since our official diagnosis," Natalie said.
"I don't know how we've held it together for so long.
"I don't have a choice but to keep going because she is my daughter.
"I'm going to fight tooth and nail to keep her alive."
While Natalie, Tayla and the Lady Cilento team refuse to give up, they are now coming to terms with knowing the young woman will "never be cured".
Instead of dwelling on this, the family prefers to ensure Tayla always has reason to show her "infectious smile" that lights up a room.
It's been an extremely hard decade for Tayla, but there have been plenty of times when she's been able to forget her illness for a while.
"We were lucky enough to go to the NRL grand final in Sydney this year and we were given State of Origin tickets," Natalie said.
"To be honest I could have just sat there all night and looked at the smile on her face."
Tayla is one of 1931 Gympie and Sunshine Coast residents treated at Lady Cilento last financial year.
The youngster is taking on a big challenge, helping to promote the annual Channel Nine Telethon supporting the Children's Hospital Foundation on Saturday (November 18)
The appeal aims to raise $11 million.
As well as supporting patients at LCCH, money raised during the telethon pays for vital medical equipment, research and a range of medical services at Lady Cilento and throughout regional Queensland and Northern NSW.
"It's things like having volunteers come to play games with her or to take her outside in sun," Natalie said.
"Because kids come from the regions they often don't have family to visit so the foundation volunteers can make a world of difference - it's not all just hospital, treatments and sterile stuff.
"They're not only there for the kids - they are there for the parents.
"They talk to you and take your mind off the reality for half an hour."
Natalie urged Queenslanders to dig deep during the telethon.
"Without Lady Cilento and the Children's Hospital Foundation, the lives of sick children would be so much harder and we'd be lost without them, so please just give a little amount," she said.
"A few dollars could make a huge difference to so many kids."
Tune in to TV to dial up support for sick kids
THIS year's Channel Nine Telethon organisers hope to dial up $11 million of support for our sick kids.
The star-studded annual event will be broadcast across Queensland and Northern NSW on Saturday (November 18).
It raises money for the Children's Hospital Foundation.
The foundation provides vital support for young patients attending Lady Cilento Children's Hospital, 60 per cent of whom come from regional Queensland and Northern NSW.
The telethon has raised about $32 million since 2014.
That money has been invested in life-saving medical research, vital pediatric equipment and for "comfort and entertainment" services for ill children and their families.
The foundation has committed $5 million to fund research into priority health areas including cystic fibrosis, childhood nutrition and brain cancer.
"The survival rates for brain cancer have not improved during the past 30 years and only 20 per cent of children with the disease will survive," foundation CEO Rosie Simpson said.
"And if they do survive, they face really chronic health issues throughout their lives."
The foundation offers a significant bright spot in the lives of children who stay at Lady Cilento.
It offers the in-house Juiced TV where kids get to star in their own television show.
It also provides the fun Clown Doctors, volunteers who entertain children with books, movies and games so parents can take a break, the Cuddle Carers program for babies, music therapy, pet therapy, special events and hospital visits by famous people.
"We also help pay for clothes for the kids, we offer travel grants for families to join their child in hospital and we fund the social work program so the families are supported," Ms Simpson said.
"The idea is to try to ensure the children have as normal a time as possible while they are in hospital."
The telethon starts at 7pm on Saturday and there will be a special documentary on the Lady Cilento and its patients from 5pm. - NewsRegional
Donate at 9telethon.com.au or by phoning 1800 909 900.