CHRISTIE Rea was with her newborn Imogen in the Neonatal Intensive Care Unit when she caught herself slipping into deep grief about her daughter's rare and aggressive brain cancer.
"I remember the conscious moment where I realised I was grieving as though I was going to lose her and I decided 'I'm not going to grieve a baby I still have'," Mrs Rea said.
"I have to fight for her. Even though I'm crying a lot, I have to smile at her because how else is she going to learn to smile? I want her to have as much love and happiness as if she was a healthy baby. I try to make her little world as happy as it can be."
Seven months after their lives were turned upside down, the Rea family has turned a corner, thanks to their entire "heroic" medical team and the support of Macquarie College, Wallsend Adventist Church and their friends.
The school, where Mrs Rea's husband Brad is a chaplain, has raised more than $11,500 for the Mark Hughes Foundation and will present the funds to Hughes on Monday.
"I'm so proud of those kids, they're just the best," Mr Rea said.
"To realise they can make a difference right now before they leave school is so meaningful. Research has been neglected for way too long. If we spend money on research we're going to get the discoveries eventually, but research costs money and these scientists need funding."
Mrs Rea gave birth to the couple's fifth daughter, Imogen, on December 11 last year. When Mrs Rea woke to feed Imogen around 7am on December 19 she was unresponsive, cold and barely breathing.
Doctors would later tell the family it was likely her cherry-sized tumour had started bleeding and pushing on her brain stem.
They were rushed to John Hunter Hospital, where doctors identified a mass on Imogen's brain and placed her in a humidicrib. She started to deteriorate the next day and was sent for emergency brain surgery with neurosurgeon Dr Mitch Hansen, who the couple credit with saving her life.
"She was shutting down and they told us afterwards that it was down to minutes when they took her into surgery," Mr Rea said.
"They told us she had a 30 to 40 per cent chance of dying in surgery, let alone afterwards, and that's if everything went to plan. They just said it's very, very, high risk. We could tell they did not think she was going to make it."
But Imogen defied expectations. Doctors took a small portion for a biopsy and relieved pressure on her brain.
Oncologist Dr Frank Alvaro delivered the diagnosis on Christmas Eve: it was cancer, congential glioblastoma multiforme grade four. It was so rare there was hardly any research available and most of the country's hospitals had never treated it.
"He said it was one of the worst, most aggressive cancers known to mankind," Mr Rea said.
The news was "life shattering" and "unfathomable". "We all hear about adults and children getting cancer, but you hardly ever hear about newborn babies getting cancer," Mrs Rea said.
Imogen started chemotherapy on December 30 and completed six rounds. It appeared to be working, before an MRI scan at the beginning of June showed the tumour had started to grow, indicating it could be resistant to one of the chemotherapy drugs.
Imogen underwent surgery on June 9 to remove 95 per cent of the tumour and fix a shunt that regulates the build up of fluid in her brain. Surgeons used drug Gliolan - which helps them see the tumour more clearly while operating - which had only been used on babies once before.
Imogen started a new chemotherapy regime about a fortnight later, which includes a much stronger agent and has more serious side effects.
"In the second week of chemo she cried for three days straight," Mr Rea said.
She is expected to continue to need some form of treatment until at least February, which could include more chemotherapy, depending on what her scans show and what the PRISM clinical trial for children's cancers finds.
Mrs Rea keeps a bag packed and stays with Imogen in hospital, while Mr Rea holds down the fort at home, which has been modified for Imogen's neutropenia and where their twin-tub washing machine runs almost non-stop.
"It's a marathon, we hit the ground running every single day and we don't know what the day is going to hold," she said.
Mr Rea brings their girls to hospital at least every two nights so they can have dinner in the car with their mum.
"Imogen might not make it, or she might go on to live a pretty normal life as an adult," Mr Rea said.
"This has not changed since day one. We just pray for her day and night. We have so many people praying for her, asking God for a miracle."
Did you know the Newcastle Herald offers breaking news alerts, daily email newsletters and more? Keep up to date with all the local news - sign up here