Shock diagnosis led Roma family on emotional rollercoaster
WHAT started as a suspicious small lump on Bailey Hockey's hand turned into a battle with rare form of cancer.
The 13-year-old Roma girl first noticed the lump on her right hand last year and at first the family thought it was from an infected prickle.
But Bailey's mum, Fiona Nelms, trusted her motherly instinct and had it checked out by a doctor in August 2019.
The doctor wanted a biopsy of Bailey's hand and the sample had to be studied at five different labs before a result came through.
"They had to retest it," Mrs Nelms said about the start of the ordeal.
"If they treat it for the wrong one it's absolutely deadly to her."
The results came back with the diagnosis of Epithelioid Sarcoma, an extremely rare form of cancer, so rare that many of Bailey's doctors had never treated it before.
"We were referred to the specialist I guess, we didn't get there until February," Mrs Nelms said.
"We spent more or less the first three months in Brisbane, back and forth...
"The first two months we estimated it was about $15,000 we spent down there."
This form of scarcoma is one of the hardest cancers to treat due to its rarity and how little research has been done on it.
There was only one thing that could be done to remove the tumour and prevent the spread.
"Over a quarter of her hand was amputated because of the way the cancer breaks down," Mrs Nelms said.
"Lungs are clear at this stage, but they could miss tiny modules for up to 12 months."
If any traces of cancer were found beyond her finger, her entire arm below the elbow would have had to be amputated.
For the next 20 years Bailey will require scans to check if it's spread to other parts of the body, particularly lymph nodes and lungs, as the rate of recurrence is up to 85 per cent.
All in this together
CONFRONTING a cancer diagnosis is difficult for anyone, but frequently seeing specialistis 500km away in Brisbane has not only been stressful, but brought the family together.
"We've made the commitment that we all go together," Mrs Nelms said.
"It's been hard, I think too with our youngest daughter we've taken her with us."
Mrs Nelms' younger daughter is 9-years-old and stayed home for the first trip, but has been by their side ever since.
"It's been a hell of a lot of trips back and forward," Mrs Nelms said.
"First three months we would have spent more or less here."
The family has been blown away by Bailey's incredible bravery and hasn't let the diagnosis get her down.
"She's just so positive; it's just changed her for the better at the moment."
Easier to Bear
The family was hesitant to make the diagnosis public at first, but Mrs Nelms, who owns Hair FX, needed to tell her staff that had to have time off work.
Now, the Roma community has gotten word and is trying to assist the family during this trying time.
Bailey's classmate Rhawry 'Bear' Mayes was one member of the community who wanted to help out, so he floated the idea of a fundraiser to his parents Michael and Celeste, who own The Tasting Co and Bear and Luca cafe.
"They did that football fundraiser at the start of the year that just lifted her spirits emotionally," Mrs Nelms said.
"Celeste contacted me because Rhawry was in her class and it's good to know she had support in her class network as well.
"I think it's the emotional side of all these things that really helps her through."
The two cafes will be donating $1 from every coffee sold to the family on July 24 and 25 and raffle tickets are currently being sold for $2 each for a signed Broncos jersey.
Bailey and her 9-year-old sister will join Bear to draw the winning ticket this Saturday, July 25.
"A 'thank you' to Bear and Luca, Celeste and Michael, especially Rhawry," Mrs Nelms said.
"I told Bailey she can go down there and wash the dishes up."