IN a heartbreaking start to the new year, a Newcastle family is coming to terms with the news of their young daughter's aggressive brain cancer.
Imogen Rea was diagnosed at just nine days-old on Christmas Eve 2020 with congential glioblastoma multiforme grade four, a rare form of brain cancer with minimal research.
An MRI on New Year's Eve showed the cancer has since spread to her spine, leaving the four-year-old in a quadriplegic state.
Her parents Christie and Brad, and her four sisters were given the shattering news by her oncologist and neurosurgeon that she "probably does not have long to live."
"We are absolutely in shock, devastated and heartbroken," an update on the family's GoFundMe campaign read.
"Then telling our other children the news has added to the heartbreak."
It has been a draining and shattering journey for the family who have spent countless hours in and out of hospital, watching Imogen undergo multiple surgeries and praying for a miracle.
Mrs Rea gave birth to Imogen on December 11, 2020. The horror started when she woke to feed her around 7am on December, 19 and she was unresponsive, cold and barely breathing.
They were rushed to John Hunter Hospital, where doctors identified a mass on Imogen's brain and placed her in a humidicrib.
Doctors would later tell the family it was likely a cherry-sized tumour had started bleeding and pushing on Imogen's brain stem.
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.
Imogen started chemotherapy on December 30 and underwent surgery the following June to remove 95 per cent of a tumour and fix a shunt that regulates the build up of fluid in her brain.
Surgeons used a drug - Gliolan - which helps them see the tumour more clearly while operating, and had only been used on babies once before.
Over the course of four years Imogen has had many highs and lows and last year's Christmas was again spent in hospital.
Her recent diagnosis followed on from Christmas Eve when she had an inconclusive MRI scan.
It displayed something putting pressure on the nerves going to her left arm - either an infection, bleed or cancer regrowth - and she was taken to surgery for a debulking.
"We prayed for a successful debulking and removal of pressure to her spinal nerves, restoration of use of arm and leg, no permanent damage, removal of pain and no cancer growth," the family wrote in an update.
But to their dismay it was the worst possible outcome leaving them in disbelief and heartache.
"The MRI from that morning (NYE) had shown the mass on Imogen's upper spine was tumour. It had grown very rapidly in the previous week and was causing nerve compression and damage."
John Hunter Hospital oncologist Dr Frank Alvaro delivered Imogen's initial diagnosis back in 2020 and said most of the country's hospitals had never treated it.
He said it was one of the worst, most aggressive cancers known to mankind.
The Rea family have continued to thank the medical team at John Hunter Hospital and the support of Macquarie College, Wallsend Adventist Church where Mr Rea is a chaplain and their friends.
Throughout Imogen's cancer journey updates have been shared on the Pray for Imogen Facebok page and the GoFundMe page where people have donated a total of $124,088 to assist the family in a difficult time.
