AT JUST four years old, Bailon Johnson has endured more than any person should in a lifetime.
For the past 14 months, little Bailon and his dad Randy have been holed-up in Newcastle’s John Hunter Hospital, their fate alternating between hope and despair.
Hope floated last month when Bailon, who was diagnosed with a malignant tumour in his abdomen last October, was told he was in remission. But in the cruellest imaginable twist, doctors have now discovered a new tumour and give Bailon only a 10 per cent chance of survival.
Mr Johnson, a single father-of-four from Tamworth, is now pinning his hopes on a revolutionary new form of treatment to save his son.
“When they found the new tumour in his groin, I asked them what they thought and they were just going to send him home to be comfortable before he died,” Mr Johnson said.
“But I questioned them about a new trial that was starting and they said we could give it a go.
“We’re going to fight this until the end.”
The trial will last for 12 months and will see Bailon travel regularly between the Sydney Children’s Hospital and John Hunter.
A fresh round of scans will commence on June 21.
“Bailon doesn’t really understand what’s happening,” Mr Johnson said.
“He’s changed a lot in the last few weeks though.
“The pain of the new tumour is making him cranky and he’s having a lot of mood swings.”
Mr Johnson said he was “eternally grateful” to the people who had supported him while he has kept a bedside vigil at John Hunter.
A number of fundraising events are planned for the coming months.
To donate to the family, deposit funds through the Commonwealth Bank’s Bailon Kai Johnson account, BSB: 062 124, account number: 11182085.