DIPG: The deadliest kids cancer you have never heard of

An Aussie mum has revealed how she noticed some very subtle changes in her five-year-old daughter. Months later, she was dead.

The last day of little Izzy Wilkinson’s life was very special.

The five-year-old was warmly snuggled up with her loving family on the couch while watching her all-time favourite movie, The Grinch, on repeat.

The comforting crackle and warm glow of the fireplace illuminated the room as she took her last breaths in her mother’s arms at their home in Forster, New South Wales.

The brave little girl was diagnosed with an extremely rare type of brain cancer called DIPG (Diffuse Intrinsic Pontine Gliom) in August, 2020.

This very aggressive and malignant brain tumour develops in a part of the brain stem called the pons. Sadly, there is no cure and it primarily affects children.

Most people who develop DIPG are given nine months to live. The two-year survival rate is just 10 per cent, while only two per cent of people will survive past five years.

Izzy battled for 12 months before she peacefully died, just a few weeks after her 5th birthday.

When her parents, Sarah, 34, and Craig, 35, first noticed that something was “a little off” with their daughter, they never imagined it would turn their world upside down.

“We started to notice some little changes in Izzy, but it wasn’t enough to make us really concerned,” Sarah told news.com.au.

Izzy loved everything that was sparkly and rainbow. Picture: Supplied

“She had fallen a couple of times and bruised herself. We couldn’t really explain why she’d fallen down, but she was a child so it happens.

“But then, I was getting calls from her kindy that she had fallen there too. I seemed to be signing incident reports all the time.

“That is when our gut instinct kicked in that something just wasn’t right. So we went to our local GP.

“She told me not to worry, that Izzy appeared very healthy, but that she would run some tests.

“In that time, Izzy began slowing her speech a little bit, and one of her eyes became a little lazy.

“Then, her hearing became a little deficient. When I realised that the hearing and the bad eye were on the same side, that is when I became quite worried.”

A horror discovery

Devastatingly, doctors discovered Izzy had a brain tumour. However, it was not clear yet what kind it was or how it would impact her life.

Holding out hope, the parents packed up Izzy and her two brothers, Thomas, now 11, and Lachy, now five, and were flown down to Sydney.

The family were devastated when they discovered Izzy had DIPG. Picture: Supplied

It was there that Izzy would be able to undergo tests, including a brain biopsy, and they would be able to meet up with specialists who could provide more information about the tumour.

At this point, they were still holding out hope that their little girl would be OK and that there would be a cure to save Izzy.

“We knew then that it was probably not going to be the news we had hoped for,” Craig said.

“The doctor confirmed that there was a tumour and that the likelihood of survival was very low. He said that Izzy probably only had nine months to live. Our whole world just crumbled in that moment.

“With just one sentence, everything changed. We looked at Izzy and couldn’t imagine her not being with us anymore.

“It was so surreal. Everything we had always wanted, everything we had hoped for her future, was just ripped away.”

Izzy started falling down at school, and then suffered from sight and hearing impairment. Picture: Supplied

Next steps

Izzy was put on different medications to help relieve her symptoms and help extend her life. She underwent seven weeks of radiation, which helped her immensely.

“Her symptoms reduced to virtually zero,” Sarah said. “She was like any other normal four-year-old girl. We came home ready to make the most of our time together.”

Over the next few months, Izzy was able to enjoy every part of life with her family while her body battled the tumour.

She joined a clinical trial in January 2021 called ACT001, which saw the family once again head down to Sydney and spend time together there.

Weekly, fortnightly, then monthly, Izzy would go to the hospital. Once this was done, the family would go exploring.

“Some of the happiest memories of my life come from that time,” Sarah shared.

“Izzy was energised, and it seemed like she was in such a good place. It was summer, so we went swimming a lot, and we just had the best time.

“Izzy had such an ability to enjoy the day. She had this bravery and a willingness to just give things a go. Nothing held her back.”

Little Izzy underwent radiation to help ease her symptoms. Picture: Supplied

She was described as a vivacious and fun-loving little girl. Picture: Supplied

Making memories

In the weeks leading up to their little girl’s 5th birthday, her parents began noticing her condition deteriorating.

Izzy started having silent seizures, her balance was unsteady and she became less independent as she became less sure of herself.

A visit to their local pediatrician showed that a tic had developed in one foot, which rapidly progressed to the other.

The family had an MRI booked for a few weeks time, but in the lead up to Izzy’s birthday, they wanted to focus on making it the best day possible.

“We knew it was going to be her last birthday she would ever get to experience,” Craig said. “That was really hard. But we just focused on making it incredible.

“She had asked for a rainbow unicorn party, so we did what we could to make it the most special birthday ever.

“She had a unicorn cake, face painting and even a magic show where a guinea pig magically appeared, another favourite animal of hers”

Izzy's 5th birthday party was very special. Picture: Supplied

All of Izzy’s family and friends came to celebrate her birthday with her.

“It was really beautiful,” Sarah added. “She loved it all. It was such a special day and for us, the memories will last a lifetime. The photos we took that day are ones we will treasure forever.”

Palliative care

One week after her birthday, Izzy went for an MRI scan at Sydney Children’s Hospital.

The family stayed at Bear Cottage – the only children’s hospice in New South Wales – and began preparing themselves for the palliative care journey ahead.

When the results came back, the family were told that they might only have a couple of weeks left with Izzy.

But in what turned out to be 12 weeks, Sarah, Craig and the boys cherished every moment and made more special memories together.

This included getting “a crazy car” for Izzy to use as a wheelchair, and making a special “disco bath” with lights, bubbles, a disco ball and a soundtrack to match.

The most magical dream come true for Izzy was when a “real life unicorn” came to visit.

“Our local Forster community had been absolutely incredible, including doing the most magical garden renovation during Izzy’s radiation treatment,” Sarah said.

“The unicorn was like the icing on a beautiful rainbow cake.

Izzy's dream came true when she met a "real life unicorn". Picture: Supplied

“We had returned from Bear Cottage and I had told my neighbour about an opportunity we had missed out on, due to COVID restrictions for Izzy to meet a real life unicorn.

“That evening I got a call asking if we would be home on a certain day and then all of a sudden we kept finding all these magical clues around the house and garden for Izzy to find.

“There were glittery unicorn poos and things like that. Then the day came, the police came early in the day and delivered a special outfit for Izzy to wear when the unicorn arrived.

“The ‘unicorn’ came in the afternoon, escorted by a local fire truck. She was totally transfixed.

“She was looking at this ‘unicorn’ in absolute awe, even attempting to take the brake off her wheelchair so the unicorn could take her for a ride.

“It was such a special moment.”

Eventually, Izzy’s symptoms worsened and she was put onto morphine to help make her as comfortable as possible.

Izzy loved unicorns more than anything in the world. Picture: Supplied

The family made memories to last a lifetime. Picture: Supplied

A few days later, she died peacefully at home in August 2021.

“We didn’t really know what to expect when she passed, but we knew we wanted it to be at home,” Sarah said. “It was important that her spirit remained with us there. It was so beautiful.

“We were all together as a family. We were by the fire, she was watching her favourite movie The Grinch. I don’t think she had any fears in that moment. It was peaceful.”

When Izzy’s body was taken away, her neighbours and preschool teachers lined the street for a ‘Guard of Honour’.

It was important for the family that Izzy spend her last days at home. Picture: Supplied

‘Still with us...’

Sarah and Craig say they think about their daughter every day and in may ways, it feel like she is still with them.

“We carry her zest for life in our hearts and she inspired us every day to follow our dreams,” Craig said.

“She had so much personality. She embraced all the glitz and glamour of life, and loved a good 80s rock ballad.

“She loved everything that was fun in life. Izzy had a beautiful connection with animals, even things like lizards.

“Every time we see a rainbow or hear a song she liked to listen to we think of her. She is definitely still with us in so many ways.”

Each year since Izzy died, her family has taken part in the Children Cancer Institute’s 86K for a Cure.

They don their little girl’s signature rainbow skirts and unicorn horns to honour her. The family hope that the funds raised through the campaign saves other families from the pain they suffered when they lost Izzy.

Her family does the Cancer Institute's 86k Run for a Cure every year. Picture: Supplied

The mum says whenever she sees a rainbow, she thinks of Izzy. Picture: Supplied

The month of May is brain cancer awareness month and the family hope by sharing their story they can help by raising awareness and allow other families to know they are not alone.

Sadly, brain cancer is the second most common cancer in children and kills more kids than any other disease, according to the Children’s Cancer Institute.

Younger children are at the highest risk of death with cure rates still remaining low. Children who do survive brain cancer are often left with serious long-term health problems.

The latest mortality statistics available from the Australian Institute of Health and Welfare show that in 2020, there were 42 deaths from brain cancer in those aged 0–19.

In the past, leukaemia was responsible for the most deaths in children and adolescents. However, while cure rates for the most common childhood leukaemia (acute lymphoblastic leukaemia) have improved significantly in recent years, the same cannot be said for brain cancer, which has now overtaken leukaemia in the number of deaths caused.

Donations to the Australian Children’s Cancer Institute can be made here.