Eva’s story

Eva was just two years old when the headaches and vomiting started.

Eva in ICU

Eva in the PICU after her first surgery

Her balance didn’t seem quite right either. And then, one night, she had a seizure. Her parents were horrified and rushed her straight to Princess Margaret Hospital.

After assessment by five different doctors in the Emergency Department, a CT scan revealed every parent’s worst nightmare.

Eva had a large tumour in the back of her head. It was blocking the fluid from her brain.

“The pressure was building up in Eva’s brain and she was immediately rushed into surgery to drain the fluid,” says Eva’s mum, Ariana.

“The line was left in place to keep draining the fluid while we waited for the pathology results,” she adds.

Tests confirmed that Eva had a slow growing, but very aggressive malignant tumour. To be precise, it’s called a Grade II Ependymoma.

Eva and Ariana

Eva and her mum Ariana passing time in PMH.

After six days in the Paediatric Intensive Care Unit, Eva went back to the operating theatre to have the tumour removed. Ariana explains,

 

The surgeon had to make a 14cm cut down the back of her head.

“She’s just a little girl, but that’s how big the tumour was.”

“It had started to spread down her spinal column. But thankfully it hadn’t yet attached to her spinal cord, so the surgeon could pull it out cleanly,” says Ariana.

“Straight after the surgery, Eva was like a newborn,” recalls Ariana.

“She had no muscle control; she couldn’t speak, or sit up or even swallow.”

But the worst part for me was seeing the pain she was in. She was on really strong pain relief but the pain was so immense we couldn’t even touch or hold her.

“That was so difficult. As her mother, seeing her cry out in pain and fear and not being able to comfort her. It was heartbreaking.”

Since the surgery, Eva has had 33 sessions of radiation treatment. And several ‘fluoroscopes’ of radiation – that’s a new, less invasive procedure – through a catheter into her blood vessels.

Eva in PMH

Eva playing on PMH’s Oncology Ward.

She’s completed two full courses of chemotherapy and is halfway through her third. And because of her age, most of her treatment must be under general anaesthetic.

 

The tumour and treatment has left devastating side-effects. Eva now has facial palsy and cannot close her right eye. Plus she’s become deaf in her right ear and has weakness down the right side of her body.

Eva’s mum says her daughter copes “amazingly well” with her ongoing treatment.

“Better than the rest of the family at times,” she said with a rare smile.

“I must admit it’s been very hard on the family. And will be especially difficult this Christmas,” says Ariana.

“We have other children, two boys,” she explains. “Zach is just a year older than Eva and they miss each other terribly – Zach comes to visit her every second day. But our 15 year-old son gets very upset so he doesn’t come that often.”

“It’s the family time that we miss while Eva is in hospital,” says Ariana.

And we still face so many unknowns. I can’t plan anything for Christmas…we just take life five minutes at a time at the moment.

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