Tioni, 30, from Creswick Victoria is mum to Mason, 2, and Zarliah, 8 months. Her first days into being a mum of two started innocently enough.
And then the day came that changed everything.
Baby Zarliah (Zarli) had begun vomiting, but then it got worse and worse. Big brother Mason had a cold, so at first, Tioni put it down to that.
“But she couldn’t stop vomiting, and I was worried that she was getting dehydrated so I took her to Emergency,” Tioni tells Kidspot.
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Something wasn’t quite right
Doctors began running blood tests and took a chest x-ray, suspecting an infection. Zarli had tested positive for rhinovirus.
“I thought the vomiting might be caused by her body having a reaction to the extra mucus in her stomach,” says Tioni.
Zarli was continuing to decline, and Tioni realised there had to be something more going on.
Doctors and nurses were concerned too, and continued running tests to try to uncover what was making Zarli so unwell.
“There were a couple of really scary nights in hospital where her heart rate dropped quite low, she was struggling to breathe,” says Tioni.
“At one point she stopped breathing, she was choking on her own vomit.”
Tioni pressed the call button, and doctors flew into action, saving baby Zarli.
A horrible diagnosis
A CT scan was arranged, and Zarli was transported from a Ballarat hospital to a larger hospital in Melbourne.
There, a shocked Tioni was told her five-month-old baby had a mass inside her skull.
“Within 30 minutes of arriving, Zarli was rushed into emergency surgery to relieve the pressure on her brain,” Tioni recalls.
Two days later, surgeons operated to remove the mass, and in a lengthy procedure, they were able to take out two-thirds of the tumour, which measured a staggering 4.5 cms.
“It was massive for a five-month-old baby, it bled a huge amount during the surgery, the surgeon said it was too risky to remove it all,” explains Tioni.
The tumour kept growing
After the operation, the unthinkable happened.
The tumour just grew and grew and grew. Within two weeks, it was bigger than its original size. It was located in Zali’s posterior area at the back of her head.
Being positioned where it was, Tioni says it directly impacted on her heart rate, breathing, facial functions, swallowing and eye movement. The pressure on her brain was building.
“Our medical team literally told us that what happened next was in the hands of the gods,” says Tioni.
“But we had hope and trust that with god’s help, she would pull through.”
The biopsy results came in and Tioni and husband Jake were told Zarli had a very rare and very aggressive brain tumour, an Atypical Teratoid Rhabdoid Tumour (AT/RT). There was only a one in three chance that baby Zarli would survive.
The family was devastated. But Zarli was responding well to the chemotherapy, so there was hope.
“We were amazed at how well she was doing,” says Tioni. “Doctors had told us it was a miracle that she had made it through those two weeks.”
Then the unthinkable happened....
Just two weeks later, the tumour had shrunk miraculously to 20 percent of its original size.
“Doctors were shocked. “Are we looking at the right baby’s scans?” said one doctor to another.
Zarli had a second surgery and doctors were fairly certain that they had removed all of the tumour.
“They were confident they got it all – it was amazing, an optimal outcome from the surgery,” says Tioni.
“But we know this kind of tumour can have little crumbs left behind, and it only needs one live cell to continue to grow.”
Zarli’s treatment was intense.
Tioni says with every tumour treatment there are different recommended protocols. This one had the best results when combining surgery, chemotherapy and radiation therapy. However, Tioni discovered her baby girl was too young for radiation therapy.
“Because her brain is still developing, they can’t risk it,” she explains.
So, the family is heading to the USA for treatment, called proton therapy, which works like radiation therapy but it’s safer for babies, as soon as she finishes a few rounds of intense chemotherapy treatment.
At this stage, doctors have determined there is no long-term damage, due to the mass on Zali’s brain. But as she is still so young, it is also a wait-and-see approach.
Tioni describes her daughter as cheeky and fun-loving, she’s full of smiles, and adores big brother Mason.
“She lights up when he is in the room,” she says. “Now that she is more stable we are just starting to see her personality come through, which is really special.”
The family have a lot of family support and community support, that has pulled them through, during this very challenging journey.
“Some of what doctors have said is pretty bleak, and we are holding on to our faith and the belief that she will be ok,” says Tioni.
If you'd like to support Zarli and her family's fight, visit her Go Fund Me page.
Originally published as ‘Doctors were shocked. Are we looking at the right baby’s scans?’