Victoria "Tori" Binnie farewelled after brave battle with brain stem cancer DIPG

She adored her new cavoodle puppy, Honey; cuddles on the couch with mum and dad; and pepperoni pizza without the pepperoni.

And five-year-old "Tori" absolutely loved Christmas.

But this year, her gifts will remain unopened under the Christmas tree; the house may seem that little bit more quiet.

Tori sadly lost her battle with the aggressive brain stem cancer, DIPG, on December 12.

Her parents, Charlestown's Mindi and Aaron Binnie, were by her side.

"When she woke up that day, she was pointing to her throat saying it was a bit hard to breathe," Mr Binnie said.

"As I was driving to the hospital I noticed her lips were blue, and at some point throughout that day, she just wasn't getting enough oxygen. Her breathing was stopping. We made her comfortable. We got our boys in to say goodbye and spend some time with her, and Mindi and I got to spend the last couple of hours with her."

It had been just over two years since Tori was diagnosed with the devastating disease. Just over two years since the family was told to go home and make memories because treatment options were limited, and the disease, fatal.

They were told the average life expectancy from diagnosis was just nine months. Told that only 10 per cent of children diagnosed lived beyond two years.

But Tori had been doing exceptionally well.

Until mid-October, she was still riding her bike. Still tearing around on her scooter.

Then, on October 19, she started to lose her mobility.

She lost the movement of her left arm and leg.

"Looking back, she was slowly deteriorating from there," Mr Binnie said. "But ultimately, Mindi and I thought we were looking to January or February before we would have any real concerns."

Related: 'Our little ray of hope was dashed': Another Hunter child battles deadly DIPG

Despite Tori's heartbreaking prognosis, and the brutal survival statistics, the family packed as much love and fun and laughter as possible into the precious time they had together.

They went to the snow to build a snowman.

They went to Disneyland, and experienced a traditional American Halloween.

"It was easy to say she had terminal cancer, but because she was doing so well, we never actually contemplated or even thought about her passing," Mrs Binnie said.

"We just put everything into her to make her life seem as normal and as happy as possible for a five-year-old girl. We spent all our time together."

It was not long after Tori's third birthday that the little girl started to show early signs of her illness.

They initially thought she had a tummy bug, but when the vomiting continued, her doctor sought some tests as a precaution to rule out anything sinister. But on the morning of September 26, 2018, in a little room at the John Hunter Children's Hospital, an oncologist delivered the devastating news.

The lack of treatment options for DIPG prompted Mr Binnie to fly to Germany in order to get compassionate access to a trial drug in an attempt to buy Tori some more time. They needed hope, when there wasn't much.

Christmas this year was going to be tough without "Sissy's" infectious little laugh filling up the room.

"Tori loved Christmas," Mr Binnie said. "Mindi had been letting her open a little Christmas present every day."

She had adored Barbie.

"That's what she wanted for Christmas, a Barbie Dreamhouse," Mrs Binnie said. "I got her a Barbie car that she could park in the garage too."

Tori had been told she was getting a puppy for Christmas, but the family had surprised her with the little cavoodle on November 1.

She had named it Honey.

"She was a normal five-year-old girl. She wanted to go to school, and preschool. We were trying to find the right one before COVID hit," Mrs Binnie said. "She loved her brothers. She loved dancing, and singing. DIPG took her balance a little bit, but she'd still dance all the time. And her laugh. God, that laugh. She was a happy girl, even with cancer, she was happy and giggly."

Tori was farewelled with a beautiful, bittersweet ceremony on Saturday.

It was live streamed for those who could not make it, particularly her American family in California.

More than 600 people tuned in to send her off.

"Lots of people loved her everywhere," Mrs Binnie said. "She was an inspiration."

In lieu of flowers, the family asked for donations to RUN DIPG - a Hunter charity dedicated to finding the answers not currently available for the children, and their families, fighting Diffuse Intrinsic Pontine Glioma.

"No other family should have to sit down and be told to go home and make memories," Mrs Binnie said. "It's just shocking that nothing has really changed since Victoria was diagnosed. That kids are given months to live. It's not moving fast enough to help families.

"I don't want another family to be in our shoes."

DIPG had robbed their little girl of the chance to achieve her dreams and aspirations, but they hope - with more funding and more research via the likes of RUN DIPG - to help other children fulfil theirs.

"This disease... it's fatal," Mr Binnie said. "There are no survivors, and no options, and not a lot of hope without more research."

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