LITTLE Maddison Challen has endured more in the past year than most of us will experience in a lifetime.
Maddison's mother Vanessa says the Bundaberg five-year-old is a "really special and a very happy little munchkin" despite the pre-schooler being diagnosed with a soft tissue cancer called rhabdomyosarcoma in July.
Vanessa first suspected something was not quite right with her daughter when the youngster complained of a sore leg as the family was about to board a flight from New Zealand to Australia.
"We thought she'd fractured her leg because she's very active and plays with her brother," Vanessa said.
"She wouldn't eat or drink and she was lethargic.
"We knew something wasn't right."
As soon as the family arrived home from their holiday, they took Maddison to the doctor for a check-up, expecting to find nothing more than a small fracture.
The scans of her bones came back all clear, but doctors discovered a strange lump in her tummy.
"The doctors came into the room and said 'You are going down to Brisbane for an MRI'," Vanessa said.
"We knew as soon as they said that, that it wasn't a good sign - that something serious was wrong."
Twenty-four hours later Vanessa, Maddison, husband Glen and Maddison's brother Andrew were in Lady Cilento Children's Hospital in Brisbane where they found out the child had cancer.
Rhabdomyosarcoma impacts muscles, tendons, cartilage and bones and is one of the most common soft tissue sarcomas found in children.
"It was causing her so many issues - her bladder was enlarged, her kidneys were getting banked up because she couldn't pee, she was in pain because the tumour was pinching the nerves going down her legs and she was lethargic from being sick and having no nutrients," Vanessa said.
At this time, doctors are unable to remove the grapefruit-sized tumour because it has a blood supply and it's wrapped around her kidneys and her arteries.
The medical specialists hope radiation and chemotherapy will reduce the mass enough for it to be removed.
"The ideal would be removing it when it's small enough and if it's not in a position where it will compromise her health," Vanessa said.
"There's no guarantees for her future.
"It could impact her fertility, there could be relapses and the chemo itself could lead to further cancers."
While supporting a child with cancer would be hard for any parent, the struggle is extra tough for Vanessa and Glen who as nurses know very well the worst possible outcomes for kids in their daughter's situation.
"We know too much, it's not good," Vanessa said.
"It's been really hard - some days I'm good, but some days I just want to cry.
"It's hard to cope but I have to.
"Maddison doesn't like to see me upset.
"The hardest part is being away from my support networks back home."
When not in a ward at Lady Cilento, Vanessa and Maddison live rent-free at the Childhood Cancer Centre in nearby Herston.
Glen remains in Bundaberg to work and care for six-year-old son Andrew, but returns to Brisbane as much as possible.
Maddison and Vanessa will remain in Brisbane until May or June next year.
Their time at Lady Cilento will be made a lot easier with the help of the Children's Hospital Foundation.
From clown doctors to cuddle carers and music therapy, the foundation and its dedicated team of volunteers do their best to ensure Maddison is surrounded by fun and positivity, particularly when she is receiving treatment that can be traumatic and scary for the youngster.
"Maddison really loves her music therapy and bedside play," Vanessa said.
"It has really kept her engaged and helped to break up her long days in hospital and always cheers her up when she's having a hard time."
Maddison is one of 989 Wide Bay 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.
"Your donation might only seem little to you, but for people like us it means the world," Vanessa said.
"The foundation gives sick children with cancer a chance to be a child again."
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.
The entertainment line-up includes Leo Sayer, Pseudo Echo, The Voice 2017 winner Judah Kelly, Eurovision star Dami Im and rock band Dragon. - NewsRegional
Donate at 9telethon.com.au or by phoning 1800 909 900.
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