Watching their youngest child Archie battle aggressive cancer for the past six months has shattered the once picture- perfect life of Floreat couple Claire and Richard Caldow.
They have had to hold the three-year-old's hand during gruelling chemotherapy treatment, then hug him through bouts of nausea and gather up the discarded blond locks from his pillowcase.
For at least 120 of those days, Mrs Caldow has slept the night curled in a rocking chair in Archie's room at Princess Margaret Hospital, too anxious to leave him overnight.
She has spent any spare moment writing a blog detailing the rollercoaster of success and failure that has marked Archie's treatment since he was diagnosed with aggressive neuroblastoma, a cancer that attacks nerve cells.
An entry in August is just one small insight into a mother's dilemma as she tries to stay positive while explaining to Archie why the "blue bag medicine" - chemotherapy - makes his hair fall out.
The family's nightmare worsened this week when they were told Archie has to go to Sydney's Westmead Hospital for the next stage of treatment, radiation therapy, because WA's only paediatric radiation oncologist will be on holiday.
Apart from the toll on Archie, it is likely to cost the tight-knit family thousands of dollars next month.
The Health Department will cover the travel costs of Archie and his primary carer but the Caldows say they cannot take away one of the few moments of happiness Archie gets each day when he sees siblings Olivia, 12, Charlie, 10 and Remi, 8.
Likewise, their children are refusing to stay in Perth while their seriously ill little brother goes interstate.
Mr Caldow said there was no other option but for the whole family to leave their support network of relatives and friends, who nightly drop meals on their doorstep.
"They've told us that if everything goes to plan, Archie could be home on Christmas Eve, but nothing has gone according to plan with his treatment and he's had every possible complication, so we're resigned to not getting home for Christmas," Mr Caldow said yesterday.
"He needs to be there four to six weeks so we have to uproot the family for that time and most of it will be at our cost."
Until early this year, Archie was full of life.
Photos show him splashing around in the pool, poking out his tongue and bouncing on the family's trampoline.
But a biopsy in March found a big tumour in his abdomen and doctors gave him just a 30 per cent chance of survival.
Within days he started a relentless cycle of scans, surgery, chemotherapy and stemcell transplants and his treatment is far from over.
This week, Mr Caldow was handed the letter from PMH he had been dreading.
Apologetic and sympathetic, it confirmed Archie would have to go to Sydney for his radiation therapy.
"When we found out we were shattered," he said. "I'm resigned to it now but I still found it incomprehensible that this was not planned for and there was no plan B.
"What if this doctor was incapacitated in some way?
"This isn't about trying to raise money for us because we're lucky that we can afford this unexpected cost.
"But other families would not be that fortunate."
Mrs Caldow said she still felt numb after hoping she would be able to live back in the family home while she took Archie for his hour of radiation therapy each day.
"I just wanted to be able to bring him home each day and tuck him into his bed so we could be together at home as a family," she said.
"My kids are like ducklings and just want to be together."
Mr Caldow said that despite his poor prognosis, Archie had shown improvement and the family had only praise for the dedicated staff at PMH.
"We have a long way to go but even with this setback about going to Sydney, we are staying positive," he said.
"Given what he's been through, Archie's the real hero and we all just love him and want him home."