The night that changed everything

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Good Friday in 2019 did not live up to its name for mum Serina Peries and her baby daughter Amelia, although it would later be confirmed that Serina’s actions were likely the difference between her daughter living and dying that night.

Little Amelia, just four months old at the time, had been vomiting, irritable and had trouble lifting her eyes. It was a public holiday so few GP clinics were open. Serina instead took her daughter to the emergency department of Queensland Children’s Hospital in Brisbane.

“They measured her head and found it was too big for her age, so they took her in for a scan,” Serina recalls. “That scan showed a mass in her brain that was about six centimetres around.”

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Originally, nobody mentioned the words “tumour” or “cancer”, Serina says. Instead, they referred to it as a “mass”. But after a drain was placed in Amelia’s head to help relieve the pressure of the fluid (“We were told that if we didn’t bring her in, Amelia probably would have passed away that night,” Serina says) the baby was referred to a neurosurgeon, who confirmed Serina’s worst fears after conducting surgery to remove around 95 per cent of the tumour.

The mass, the specialist explained, was an ETMR tumour, a rare and aggressive type of tumour that forms in the brain or spinal cord, most commonly in young children. In Amelia’s case, it was also malignant.

“How did we cope? There was a lot of adrenaline,” Serina says. “There wasn’t time to stop and think, we were just running on adrenaline and having to move forward. There was no time to sit down and be weak and feel sorry for ourselves because we had to be there, in the present.”

“I felt that if I did let my guard down and get upset, I wouldn’t be able to pick myself up and carry on.”

Kids like Amelia need science

Soon after the surgery, baby Amelia entered four cycles of chemotherapy, followed by a second surgery, four months after the first. Surgeons were not able to remove as much of the mass as they had hoped.

She then began a course of high-dose chemo, which is a terrible burden for such a young child, but doctors were not willing to begin radiotherapy until Amelia passed the age of one. Chemo and surgery might buy time before radiotherapy could begin.

Tragically, that wasn’t enough. Amelia passed away soon after an MRI showed she had just days to live.

“We are completely shocked and heartbroken, but we find peace knowing she is no longer suffering,” Serina says.

“We definitely need more therapies designed for young children. Looking at the statistics for brain cancer, at the survival rate over the last 30 years, it has only increased by one per cent in three decades."

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The bear that made things bearable

When Amelia was around six months old and feeling miserable in her hospital bed, she received a donated teddy bear from The Kids’ Cancer Project Bear Program. A nurse delivered the teddy and Amelia, Serina says, spent the rest of the day smiling.

“She loved it and she was touching it all day long,” Serina says.

“Sometimes toys are the last thing you remember to pack when you’re heading off for a hospital stay, and there’s only so much TV that a baby can, or should, be distracted by each day.”

“Because of her treatment, she hadn’t yet learned to crawl. So having that bear in bed with her made everything seem better. I was touched by the generosity of people.”

Coping with the pain

How does a mum and dad, and indeed other family members, cope with such emotional trauma?

Having originally described taking time-out for herself as being “weak”, Serina now has a completely different point of view. While it was important to tough things out for the first few weeks, she and her partner Glen soon realised they had to find a release.

“I think that time to yourself is really important,” she says. “It’s very important for my partner and I to talk things through, so that we don’t end up bottling things up.”

It’s also important that they spend time explaining what has gone on to their other children, Amelia’s sister and brother Amara (eleven) and Elijah (six), and answering their many questions

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When Serina was just 12, her mother died from leukaemia. That was during a time when little was explained to children. She senses that she would have coped a lot better with the loss if it had been explained better, and therefore hadn’t come as such a sudden and terrible shock.

“I know what it feels like to not be included,” she says. “So we’re going about it a different way and making sure the kids know what’s going on.”

“Apart from that, I try not to think of anything negative,” she says. “We’re all going okay. Days are getting a little easier. We’re just going to try to stay positive. In fact, we are expecting a baby boy at the end of July. A little blessing that gives us hope and to look forward to in the future.”

 

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