The Emins, from rural WA, open up and share the gritty behind-the-scenes reality of what a child and family really go through once they've been told, 'your child has cancer'.
"Zoe’s cancer journey started on Monday 12 March 2012 when the doctors finally listened to us and discovered a tumour the size of a very large orange in her abdomen which had been causing her agonising pain for more than six weeks," said Alison, Zoe's mum.
"The doctors kept telling me that she was just teething, to go home and give her panadol," said Alison. "They finally did an ultrasound and found a mass. Then they said you will not be going home."
Two days later, on the Wednesday, Zoe was diagnosed with aggressive stage IV neuroblastoma, a form of cancer that is made up of cells that are found in nerve tissues of the body. Doctors gave her a 40 per cent chance of survival. She was just 14 months old.
The following day the baby girl started chemotherapy and her fight against childhood cancer began.
This is the harsh reality of childhood cancer.
Over the course of 18 months, little Zoe endured six rounds of chemotherapy and major surgery to remove 80 per cent of the primary tumour. She experienced a course of what her mum described as 'mega-therapy', an intensive chemotherapy, plus a stem cell transplant, 20 days of radiation and half a dozen rounds of immunotherapy.
Alison and Zoe in hospital. Photo courtesy of NJ Humphrey.
The diganosis had massive repercussions for the entire Emin family unit, not just personally, but on a business front as well.
The family had to relocate from their farm in rural Western Australia to Perth so Zoe could benefit from the intense treatment regime. Leaving Erin’s brother Adrian and wife Jasmine to run the family farm.
Zoe's older sister Georgia (aged four), and little brother Harvey (who was born just six weeks after Zoe’s diagnosis), travelled with mum and dad to Perth, moving into Ronal McDonald House while Zoe was treated at what was then known as the Princess Margaret Hospital for Children (now Perth Children’s Hospital) to be by her side all the way.
Alison and Erin vividly recall the trauma of their baby’s treatment, which affected everyone.
Baby Zoe’s treatment for neuroblasatoma
“Chemo was hard, especially on our four-year-old daughter, Georgia, who just could not understand what was happening," said Erin. "Our attention was on Zoe 100 per cent every day and night. Georgia’s spark was slipping away”.
“Zoe’s radiation was agonising as it had to happen under anaesthetic everyday for 20 days because she was so young,” said Alison. “She had to fast every night which took a toll on her weight and she would be extremely upset and irritable heading to hospital for radiation in the mornings but after a gourmet breakfast our sweet Zoe would be back.”
"Of all the treatments she had, immunotherapy sounds to be the easy part,” Alison recalled with a wry smile. “But it wasn’t easy for Zoe. It caused unbearable pain all over her body. Her face and body would swell twice the size of her weight and all we could do is hold her and sooth her."
“We would get two good weeks of enjoying our little Zoe being a toddler again; playing, eating, talking and enjoying time with her sister and little brother. We never had that when she was having chemo. But the week in hospital each month while she was having immunotherapy was very distressing and heart wrenching,” said Alison.
The stoic mum will never forget the various stages Zoe would go through as the life-saving treatment took hold.
Zoe's immunotherapy experience.
“For the first four hours, she would be happy, energetic and comfortable,” said Alison. “Then the pain would just hit like a ton of bricks.”
“It was agonising to watch her, to hold her. Even with all the pain relief there was no comfort; only that mummy and daddy are there. We had very long days and nights with constant monitoring and watching her oxygen levels.”
It takes a village
Thankfully, after all those months of treatment, Zoe’s regular scans and check-ups continue to reveal no evidence of disease. Despite this, the family fear relapse and the lack of treatment options available if that was to happen which is why they are active advocates for childhood cancer research.
“I had never heard of neuroblastoma until that day in March 2012,” said Alison. “Without awareness, there is no knowing. Without awareness, there is no funding and without funding, there is no research.”
Childhood cancer is a disease that affects whole communities and Zoe’s hometown of York, the oldest inland town in Western Australia, situated on the Avon River, 97 kilometres east of Perth, rallied like no other.
Happy Zoe and ted in the wild flowers.
Erin and Alison’s good friend Guydon Boyle helped them organise Zoe Rose’s Big Ride in their town of York which raised $100,000 and a community sheep-shearing day raised $6,000 in donations. It was all given to The Kids' Cancer Project, an independent national charity that invests in scientific research so that no other child or family will ever have to experience what they went through.
The Emin family also sell their beautiful King Proteas each year in September and October and have donated $6,000 to The Kids Cancer Project.
All who know Zoe are continually inspired by her, no one more so than her proud mum.
“Nothing has humbled me more than the fight shown throughout all of the pain and suffering by my beautiful little girl,” said Alison.
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