- When Frankie was eight months old he developed strange rashes and fevers
- After rushing him to hospital, his parents learned he had a stage 4 neuroblastoma
- But after two years of treatment, Frankie is cancer-free and full of joy
Here Hannah Standish, 28, Brisbane, Qld, tells the story in her own words
‘He’s beautiful,’ my partner Farron wept, cradling our baby boy for the first time.
It was January 2021, and little Frankie was already three months old.
At four months pregnant, I’d flown from Queensland to New Zealand to visit my parents – then Covid hit, closing the borders.
Farron, 26, was stuck in Australia and couldn’t be there for the birth. My dad stood in as my support person, as Farron watched the birth on a live stream.
When the borders finally reopened, Frankie and I flew to Brisbane, Qld.
At the airport, Farron tearfully scooped our bub into his arms.
It was wonderful to be together at last, but when Frankie was eight months old, he began developing strange rashes and fevers.
Multiple GP visits led to medications, but nothing helped. At nine months, his beautiful hazel eyes began to cross. He was referred to an eye specialist, but before the appointment, he became so lethargic we rushed him to hospital.
‘If it’s nothing, they’ll send us home,’ I said to Farron.
But Frankie was admitted and given fluids, a lumbar puncture, blood tests, and scans. During an ultrasound, I stared at the screen in confusion.
‘Where are his kidneys?’ I whispered.
All I could see was a big white mass.
Alarm bells rang.
We were transferred to Queensland Children’s Hospital – on Father’s Day, Farron’s first. Instead of enjoying giggles and snuggles in bed, we received shattering news.
‘I’m 95 per cent sure Frankie has neuroblastoma,’ said our oncologist, Dr Wayne Nicholls. ‘It’s a rare neurological cancer, mostly found in kids under five.’
It explained the fevers and rashes – his tiny body had been trying to fight it.
‘We need to run tests to confirm the diagnosis,’ Dr Nicholls said. ‘But he’s young. That gives us a good chance.’
Farron and I sobbed. We’d just become a family, and now we were facing a nightmare.
Frankie underwent biopsies and an MRI. The results were worse than imagined.
‘I’m sorry, it’s stage 4 neuroblastoma with MYCN amplification, a genetic mutation making it more aggressive,’ Dr Nicholls said. ‘The cancer is in his spine, his skull and his abdomen. The main tumour is wrapped around his vital organs. That’s why we couldn’t see his kidneys.’
WHAT IS NEUROBLASTOMA?
Neuroblastoma is a cancer in types of cell nerve tissue called neuroblasts – young nerve cells mostly found in:
- Adrenal glands (near the kidneys)
- Tissues around the spinal cord in the neck, chest, abdomen and pelvis.
SYMPTOMS- Lump or swelling in the belly, neck or chest, or under the skin
- Loss of appetite, stomach pain, weight loss
- Swelling in arms or legs
- Issues going to the toilet
- Bulging eyes, or dark circles around the eyes
- Jerky, uncontrolled eye movements
- Bone pain
- Weakness or paralysis
- Issues breathing or swallowing
canceraustralia.gov.au
Our baby had just a 20 per cent chance of survival. We were distraught.
The next day, chemo began, but it came too late to save his sight. A tumour pressing on his skull suffocated the optic nerve, and just two days later, Frankie went blind.
‘He’s not going to remember what we look like,’ I wept to Farron.
Watching his body swell, his skin turn grey, and his fluids become toxic was horrific.
We moved into the hospital, staring at the monitors on Frankie’s vitals throughout the night as he slept, worried sick we’d lose him.
Frankie underwent five rounds of intensive chemo, countless transfusions, four surgeries, bone marrow transplant isolation, radiation, immunotherapy, and more.
At 18 months, he took his first steps in the hospital corridor. His first and second birthdays were spent in a hospital bed.
In 2023, after almost two years, he was declared cancer-free, and at two and a half he was allowed home. We were over the moon.
Today, Frankie is four and a half and full of joy. He walks confidently with a white cane and attends a school for the visually impaired. He’s learning Braille, helps me chop vegetables, and hammers nails with his dad.
He loves music, is teaching himself keyboard and drums, and adores the band Queen, belting out ‘Bohemian Rhapsody’ with rock star flair!
‘I was born to perform!’ Frankie tells us, quoting his hero, Freddie Mercury!
We’re so lucky he survived. But had he been diagnosed earlier, he might still have his sight.
That’s why we’re joining Run2Cure Brisbane in August.
Farron and I will do the 10km, while Frankie will walk 3km with a nanny. Our 30-strong team of friends and family are running to raise funds and awareness.
Early diagnosis saves lives and sight, and hopefully, we can one day even find a cure.
Support Run2Cure Brisbane at run2cure.org.au
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