A single mum has opened up about the subtle signs that lead to her daughter’s terminal brain tumour diagnosis.
Sydney mum Huyen Tran noticed her daughter Zoe was walking abnormally at the end of April last year.
The one-year-old had only been walking for six-months when her mum spotted her right foot would turn inwards as she tried to take a step.
‘I asked my mum, my friends if they could see anything weird so I started videoing her when she walks,’ Ms Tran told Daily Mail Australia.
Sydney mum Huyen Tran noticed her daughter Zoe begin to walk strangely in April last year (pictured)
The unusual gait lasted for a few months until Zoe’s walk became more unstable, causing her to fall over at daycare and become extremely fatigued.
Immediately Ms Tran had a gut instinct something was wrong.
In June she took her daughter to the GP who suggested she would grow out of it, then to an orthopaedic doctor who said there was nothing wrong with her physically.
Ms Tran then took her daughter to a paediatrician who suspected it was something neurological, suggesting an MRI but was hesitant due to Zoe’s young age.
Ms Tran took Zoe to see a GP and orthopaedic doctor who couldn’t find anything physically wrong with her (pictured)
While waiting to see a neurologist for a second opinion, Zoe’s condition worsened.
‘She deteriorated badly, she couldn’t walk without falling much she was exhausted, her speech started to slur too,’ she said.
‘The symptoms they would come and go…It was so subtle.’
Ms Tran described the wait between appointments as ‘haunting’, eventually taking her daughter to the emergency room to receive a CT scan.
Zoe (pictured) would stumble and suffer from extreme exhaustion on and off leaving Ms Tran to suspect something was wrong
The next day doctor’s informed Ms Tran that Zoe had a DIPG (diffuse intrinsic pontine glioma) – a terminal brain tumour.
‘I could never ever think it could be a brain tumour,’ Ms Tran said.
‘No way on earth.’
DIPG is an aggressive type of childhood cancer that occurs in an area of the brain stem, most children only have two years to live from diagnosis.
‘There was no time to process all of that her mutation was the worst its classified as grade 4,’ she said.
With her tumour inoperable Zoe’s only option was to undergo 25 sessions of palliative radiation therapy across five weeks that would give her 12-months to live.
Ms Tran says after the treatment her daughter was able to regain all of her functions and live life as a normal three-year-old.
Ms Tran was waiting to see a Neurologist but took Zoe to the emergency room when she noticed her condition deteriorate
She also treats her daughter with natural therapies including Chinese herbal medicine and acupuncture.
In July an MRI scan detected the tumour had grown by one centimetre indicating the cancer is progressing.
‘My heart just broke again and again,’ Ms Tran said.
Doctors revealed Zoe had DIPG (diffuse intrinsic pontine glioma) – a terminal brain tumour
‘It’s really hard as a single parent for a sick child, I would not be able to do it with out support from friends, I can’t work or rely on anybody.’
Ms Tran says since Covid she hasn’t seen her parents, who live in Vietnam, in almost three years after she planned to return there in May.
Her daughter is also missing out on going to her favourite places like the aquarium and the zoo.
DIPG is an aggressive type of childhood cancer that occurs in an area of the brainstem, most children only have two years to live from diagnosis
But Ms Tran says she is grateful for her support from Westmead’s Bear Cottage who host the pair and other family’s going through DIPTG for 4 weeks a year, providing 24/7 care from nurses and doctors.
‘I just focus one moment at a time I need to be happy for her, I have to carry all of that and do that by myself,’ she said.
The three-year-old is now taking part in a clinical drug trial, taking ten capsules of the trial medicine a day with Ms Tran quitting her job to care for Zoe full-time.
Ms Tran is hopeful it will improve Zoe’s outcome and extend their time together.
‘She’s good she’s active living the life of a normal toddler,’ she said.
Ms Tran is adamant she doesn’t want to take any of the time the pair have left for granted while documenting Zoe’s journey on the Facebook page My Brave Zoe.
After a long road to diagnosis and treatment Ms Tran says she doesn’t believe earlier detection would have changed the outcome but urges parents not to ignore the signs.
‘Always trust your gut instinct, it’s worth it to go with what you feel so you don’t regret it earlier.’