NSW family’s beg for research funding into DIPG brain cancers

Heartbroken mum Kathie Potts lost her daughter to a monster brain tumour — and is sick of watching other families live through the cycle of empty funding promises, including little Flo Turner who underwent radiation this week while a lobby group was given sympathy, but no funds, from the government.

As four-year-old Flo bravely faced another gruelling round of radiation this week, researchers and doctors caring for children with deadly DIPG brain tumours met with federal health department officials and begged for funding to save suffering children.

Children like little Flo from Newcastle — who just one month ago was singing, playing and riding her scooter.

“I would give anything to hear her beautiful voice, watch her play dress-ups and jump in the pool again,” her mum Michelle Turner said.

The Flo she sees today is unrecognisable. The steroids have changed the shape of her face and the DIPG tumour invading her brain means she is now unable to use her right hand and unable to get herself up or walk unassisted.

The once bubbly preschooler is now limited to a few sentences. But Flo is still fighting and her parents will try everything to keep their baby alive.

Flo Turner from Newcastle is suffering from DIPG.

Flo got to go home last week to spend time with her chickens and bunnies, and is now back at hospital for radiation.

While Friday’s meeting between federal health department officials and representatives from DIPG Australia and Cancer Australia and National Health and Medical Research Council was constructive, families such as the Turners continue to push for funding for research so that the 20 children diagnosed each year with DIPG have a fighting chance.

They are calling for $21 million and the goal is to double the survival rate in the next five years.

Federal Health Minister Mark Butler told The Sunday Telegraph he was sympathetic to the cause and said research to develop effective treatments into DIPG was desperately needed.

“DIPG is one of the most aggressive childhood brain cancers. We’re at a very early stage right around the world in understanding the condition,” Mr Butler said.

“I’ve instructed the Department to work with DIPG Australia to find new research opportunities — research offers the best hope for driving meaningful change for these children and families.”

Meantime, it’s been a tough few days for Flo and her family — and time’s not on their side.

“We woke to see a further deterioration in Flo symptoms. She was more sleepy, unable to walk or eat properly,” Mrs Turner said.

Flo is now unable to walk or eat properly.

Flo’s mum says the disease and medications have made Flo unrecognisable.

“We decided to take Flo to her team of doctors at Sydney Children’s who straightaway organised an MRI,” she said.

“While the results showed the tumour was stable since her last MRI in November, her symptoms are showing that something is going on.

“Flo has been given a much stronger dose of medication to help with the inflammation.”

After a few days at home with her mum, dad Cam, brother Arlo, her bunnies and her two new chickens Henrietta and Daisy, Flo was back in hospital this week for six more rounds of radiation.

“We had hopes of Flo being able to do these sessions without needing a general anaesthetic but her tumour is pushing on parts of the brain that control swallowing, so it’s not safe for her to lie flat locked into a face mask in a room on her own,” her mum said.

“The sad fact is she was well enough to do this two weeks ago.”

The radiation was necessary because the first round of CAR-T treatment was not successful.

“The fluid sample taken from her brain which initially showed the CAR-T cells had increased 10-fold is now showing a significant drop, meaning the symptoms we are seeing in Flo are a result of tumour progression,” her mum explained.

“It seems the CAR cells lost the battle and the tumour has just been aggravated but that’s guesswork and that’s the problem with DIPG, experimental trials, and Flo being the first patient in Australia on the trial, no one knows.”

Last week’s cover of The Sunday Telegraph.

Her parents are taking comfort in the fact the last MRI was stable but there are things happening that the scan is not showing.

“We are told tiny changes in the neurons can cause significant symptoms.

“Flo is now unrecognisable from the impact of steroids and the tumour … unfortunately she cannot handle visitors at this time but we hope next week this may change,” she said

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DIPG has no successful treatment. Radiation is given and then palliative care.

Clinical trials are the only thing providing hope for desperate families.

“There are a few more options our oncologist will speak to us about next week but now we know we have to weigh this up with quality of life.”

The family, like many others before them, is holding out hope that “setbacks lead to great comebacks”.

‘Stop saying you care but not funding research’

Kathie Potts lost her little girl Annabelle to the monster brain cancer DIPG almost five years ago and she is sick to death of seeing family after family go through the same devastating trauma.

Still no cure and still grossly inadequate funding for clinical trials and research needed to find better treatment and one day a cure.

The Canberra mum says the federal government should stop and think about the financial cost to taxpayers every time a child succumbs to this ghastly disease – and invest the money these kids deserve.

Annabelle Potts, who died almost five years ago.

Annabelle with her mum Kathie.

“I am frustrated seeing the same pattern over again. A child is diagnosed with DIPG, fights for awareness and gets media attention, the community rallies, people become invested and then the child passes. The hype dies down and it’s all forgotten until the next family goes through it,” Mrs Potts told The Sunday Telegraph.

“It costs the government money when these children die. It makes me really angry and frustrated because all of these children are going through what we went through five years ago. It breaks my heart; it shouldn’t be happening.”

Mrs Potts said life afterwards is a huge struggle.

“Most people think it’s over once the child dies, but we are fighting every single day, not just through seeing what’s happening to other DIPG families but fighting to be OK, fighting to live the best life we can,” she said.

“We didn’t want a DIPG ­diagnosis to destroy us, and we are trying to live a good life, but we are in a constant state of grief.”

Mrs Potts said the trauma of losing a child to brain cancer doesn’t end when the child is gone – the financial cost to the community continues.

Adam and Kathie Potts, with their surviving children, William, 8, Juliette, 5, Vivianna, 3, and a picture of Annabelle.

“It’s costly, the government invested money for Annabelle to be born in a public hospital. They paid parental leave and subsidised her childcare, then she died … She wasn’t given a chance to grow up and pay back to the community. It doesn’t stop once these children die, there’s the trauma caused to siblings, my husband Adam barely worked for two years knowing she was terminal. Then after she died I didn’t work for some time, I quit my job for a few years until I found the right fit for me and I wanted to spend time with my other children.

“Annabelle could have grown up to be a scientist. She was incredibly smart and kind and we wonder what could have been. But we are still going through significant trauma and that’s costly as well.”

When Annabelle was first diagnosed her family was supported by their community in Canberra. “We fundraised about $400,000 to go overseas for experimental treatment which extended Annabelle’s life, none of the money came from the Government,” she said. “We were not eligible for anything other than a $125 a fortnight between Adam and I as a carers payment. We would have lost everything if it wasn’t for our community.”

Today Mrs Potts and her husband Adam said their other children are struggling emotionally.

Eight-year-old William misses his sister every day, while five-year-old Juliette, who was just nine months old when Annabelle died, has significant trauma issues and troubling dealing with the loss.

Vivianna was born 12 months after Annabelle passed away “the one born afterwards to help our hearts” and even though she didn’t know her big sister she is still impacted by seeing our family’s grief and the photos of the incredible big sister she will never know”.

“It’s weird having these conversations again but it’s so important. They call DIPG a “rare” cancer but look at all the children we have lost, and it’s certainly not rare when it happens to your family. If we don’t work together for change now, there will be another group of children in two years we will be talking about with no hope.”

The US hosting a trial of hope

When Annabelle Potts was diagnosed in December 2016, her parents were told she had just nine months to live and to go home and make memories.

In the face of no treatment on offer in Australia, the Canberra family flew to Mexico to trial experimental chemotherapy.

After 10 rounds at $30,000 a pop, Annabelle’s tumour had shrunk to the point it could no longer be detected. But the joy was short-lived.

The tumour came back.

For the next two years Kathie and Adam Potts tirelessly campaigned for more money for research, challenging doctors, writing to politicians and facilitating Annabelle’s Lemon Face Challenge.

The Sunday Telegraph swung behind the challenge, which saw celebrities sucking on lemons and pulling faces.

Annabelle died 10 weeks after launching the challenge.

On the morning of her death, the couple received a letter from then federal health minister Greg Hunt announcing money for research.

Dr Misty Jenkins received $592,388 to trial immunotherapy CAR-T cell treatment.

Today, there is a Car-T clinical trial at St Judes Children’s Hospital in the US.

There is a trial at Randwick Children’s for newly diagnosed children only.

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