Embry Davis stopped breathing as a tumour pressed upon his brain and spinal cord, before undergoing urgent lifesaving surgery at just five-months-old.
Nine months later, the cheeky, playful Highton bub continues to impress his mum Ebony Wisnesky with his determination.
“I’m certainly proud to have him as a son,” the 24-year-old said from the Royal Children’s Hospital in Melbourne on Wednesday.
The family travelled to the hospital on Sunday when Embry suffered an infection due to radiation therapy weakening his immune system.
But the infection is minor compared to the challenges young Embry has faced so far.
“He’s OK, he’s just a little sick at the moment,” Ebony said.
“We’ve spent more of his life in hospital than we have at home as a family.”
When Ebony gave birth to her firstborn in March 2020, just days before Australia’s first COVID-19 lockdown, everything seemed OK.
“It wasn’t until he developed this head tilt that I was worried,” Ebony said.
Initially Ebony saw a GP who thought Embry was dealing with teething issues.
“[The head tilt] wasn’t going away, and he was getting more and more unsettled,” she said.
She struggled to get a doctor to “have a proper look at him, because it was all telehealth appointments at the time”.
“They were trying to give me medical advice over the phone, which really wasn’t helpful at all,” she said.
Finally, Ebony and partner Murray Davis managed to get a hospital appointment for their son due to a minor, unrelated kidney issue, and specialists diagnosed him with an anaplastic ependymoma.
The brain and spinal cord tumour is especially rare in babies under three-years-old, according to Ebony.
“I had a feeling that something wasn’t right,” she said.
“But I wasn’t expecting that kind of news. I was devastated.”
Embry’s condition deteriorated rapidly following the diagnosis as the tumour constricted his basic nerves.
He became paralysed on the left side of his body, suffered bleeding on his brain and vocal cord palsy, and his mouth and one eye began to droop.
“When he was looking at me, it felt like he was looking through me,” Ebony said.
“That morning his surgeon said they needed to do urgent surgery.”
Embry then stopped breathing, spending the night connected to a breathing tube, before undergoing eight hours of surgery and being placed in an induced coma for two weeks.
But finally, Ebony and Murray received some good news.
“The surgeon said to us she had removed more of the tumour than she thought,” she said.
“When we heard that, we were in tears.”
Embry began a course of intensive chemotherapy, which specialists halted after two months in February due to health issues.
Last Wednesday he started radiation therapy instead, which is not normally used in patients under three-years-old. He is now having a break from that too, due to his latest infection.
Embry also needs surgery to replace shunts draining excess fluid from his brain, and faces the possibility of learning difficulties and the tumour growing again.
According to Ebony, his chances of being cured are about 30-40 per cent.
“He’s still working on his limbs. It took him a while to be able to use his fingers properly,” she said.
“Every now again the droop in his face comes back. It’s nothing that doesn’t go away in a day or two, but I get paranoid about it.”
Ebony and Murray have given up work to care for their boy and travel between Geelong and Melbourne, which has taken a heavy financial toll.
“There are days where you just hate the world,” Ebony said.
“But with the support we have around us, we’re getting through this.”
Recently Ebony recently started a GoFundMe page to help with accommodation and other expenses to care for Embry, who is already developing a strong will for the battle ahead.
“He likes to argue with you over things,” Ebony said.
“He’ll let you know if he doesn’t like you – he has his favourites around the hospital.”
To donate: gofundme.com/f/embrys-treatment
