Part of the cure - DomPost

Jemima Gazley - her wish is now part of the cure

Written by Bess Manson for Dom Post, published October 8, 2022.

In a lab deep within the cavernous buildings of the University of Newcastle, Jemima Gazley’s cells are hard at work.

A robot, bought with the money she crowdfunded in the weeks before succumbing to brain cancer, is doing the job she assigned – using those cells to find a way to save other children from the “monster” that claimed her young life.

That robot has a name – The JEM-bot.

She would have laughed heartily at that. She would have given it a good knee-slap.

Jemima, who died last October aged 15, was humble and cheeky. She loved comedy and would probably have made some witty reference to the Fembot from the Austin Powers movies, say her parents.

Comedy aside, she would say, “Well, as long as it’s doing its job,” says her mother Ray.

“She used to say ‘I’m not smart enough to cure cancer, but I can advocate for a cure for cancer’ – there’s a real wisdom in that.”

For Jemima's family, it was bittersweet to see the robot, housed in the Wish Lab named after the Jemima’s Wish charity.

The saddest thing is she never got to see this, says her father Oliver.

“To see the huge amount of money she raised, to see it now, a year later, turned into a working machine that is hopefully going to find a cure is beautiful for us. And it’s a beautiful legacy for her.”

Jemima died on October 12 last year, nine months after being diagnosed with DIPG – diffuse intrinsic pontine glioma, an inoperable and terminal cancer. A death warrant.

Her mission, once she knew her fate, was clear.

It’s written on the bronze plaque her little brother Rudy placed on the wall outside that Wish Lab: “If I can’t be cured, I’ll be the cure.”

Jemima’s family watched the robot in action when they visited the University of Newcastle last week. They watched researchers observe her cells on a small screen. Their girl was still doing great things.

In charge of the robot is associate professor Matt Dun and his DIPG research team.

They’d never met face-to-face but on a drizzly morning in the university car park the Gazleys greeted Dun like an old friend, albeit from a dreadful club.

It was 17 months ago that Ray called Dun after Jemima’s diagnosis in February 2021.

DIPG had taken Dun’s own daughter, Josie, in 2019. The cancer researcher has been on a mission to find better treatment and ultimately a cure ever since. His research lab was the obvious recipient of the money raised by Jemima's Wish.

Dun is like Batman, says Rudy, 12.

“He wants to avenge the thing that took the person he loved so much. Just like us.”

Ironically, the way to Dun’s lab is a bit like the Batcave, wending this way and that along what feels like a secret passage.

Dun's Hunter Medical Research Institute, where the Wish Lab can be found, is full of big brains doing big work.

You need big brains to unlock the terrible mysteries of DIPG, a disease as mind-scramblingly complex as it is ferocious. It leaves no survivors in its wake.

You need people like Jemima too, who raised $725,000 ($696,420 after Givealittle’s 5 per cent) to help Dun and his team buy the one-of-a kind robot, which eliminates human error and speeds up the work testing up to three combinations of drugs on tumours by more than 400 times.

A pencil drawing of Jemima by local Newcastle artist Jo MacGregor hangs above the doors to the Wish Lab. It sits next to one of Josie Dun and alongside many others whose cell lines were donated for research – all children whose journey with DIPG ended as it always does. Most patients die 9-11 months after diagnosis.

Seeing the lab and the JEM-bot, knowing her cells were helping further research, was a powerful moment, says Ray.

“It would be a fulfilment for Jemima to know the money was being put to good use. That was the intention. She would expect nothing less. That was Jemima’s wish.”

Jemima had great plans for a life cut short at 15 years old.

She was a healthy teenager before the disease “shoulder-tapped” her on February 11 last year.

The grand plan was to travel. Maybe sail down the River Nile. Definitely hit Paris.

The family had always imagined doing a big world tour at some point.

After Jemima’s death they decided to hell with putting things off.

“If Jemima can disappear, or ‘go kaput’ as she would say, it can happen to any of us, any time,” says Ray.

They left Aotearoa in December 2021 while the world was in the eye of Covid.

“We thought, what could be worse? We had just lost our daughter. We thought, come on Covid, let’s take you on,” says Oliver.

“We did the things Jemima always wanted to do, and we did them with purpose and meaning, and we had so much fun.”

They took Jemima’s ashes with them. They sprinkled her all over the world.

They took a little notebook she had written with pages dedicated to her plans for Paris – a mind map of what she would take, where she would go, what she would eat.

The creative spelling suggests she might have been seven or eight when she wrote those important plans.

Of course, they went there. At Easter, they ate pastries and buried her in the gardens at the foot of the Eiffel Tower.

On New Year’s Day they cast her into the wind at the top of Cima Rosetta​ in the Dolomites.

They buried her in the Moon Gardens at the Taj Mahal. They scattered her in the Ganges.

She is in the Sea of Malta, on the shores of the Algarve in Portugal, in the Mediterranean, in the Thai bay of Koh Phi Phi​.

A few days before she died, Jemima told her mother she had had a dream that she was a river, so they scattered her in the Nile and in the Danube too.

Jemima did the grand tour after all.“Now she is of the world,” says Ray.

“She’s in the oceans, the rivers, in the plants, beside monuments, in the updraft at the Dolomites. She’s in the mist in the tropics.

“As her mother, I like to imagine her energy to be everywhere.”

They placed padlocks in different spots and kept the co-ordinates on little cardboard notes. Little locks on bridges in Venice and Budapest, on the Greek islands of Naxos and Paros, on the mast of a boat they sailed down the River Nile.

In all, Ray and Oliver with their sons Rudy and Theo, 14, have spent 10 months travelling the world.

Their last stop before home was always going to be Newcastle, to see what Jemima's legacy had achieved. What every single one of the 7000 donors had made possible.

People were so incredibly generous. Not just with money, but with their words, says Ray.

“The final chapter in her life was her biggest triumph and those people who gave to the raise really lifted her up.

“We hope that they can now see what it was all for. We want them to feel like they are part of this. We want them to be proud of what they’ve done.

“I want to make sure people know what we are doing here is really cool. The money has been spent wisely on something that is most likely to make a big impact. When the cure is found it will benefit children all over the world.

Dun was incredibly moved by Jemima’s altruism.

She was incredibly courageous, he says, to want to be part of the solution, even knowing she was leaving behind so much.

“I can’t even imagine what she would have done with her life – incredible things. New Zealand is famous for remarkable women, and I’m sure she would have been one as well.

“I’ve thought about it and wondered whether she would have been a climate activist, or something else remarkable. It’s a huge loss she’s not here, but she will never be forgotten. She’ll always be known for being the girl that helped to unlock the secrets of DIPG.”

In the end, that was Jemima’s plan.

As the Gazleys got back into their car to start the final leg of their journey home, Rudy wound down the window and shouted out to Dun: “Hey Matt, take care of the Wish Lab for us.”

It holds their precious cargo.

The JEM-bot

The US-designed JEM-bot is the world's first DIPG-specific robotic equipment.

Costing A$1.2 million, it was paid for with the money from Jemima’s Wish charity and augmented by funds raised by associate professor Matt Dun of the University of Newcastle and others through his RUN DIPG charity.

It is housed at Dun's Hunter Medical Research Institute at the university.

The beauty of robotic testing technology is that it eliminates human error and speeds up the work of testing combinations of up to three drugs on tumours by more than 400 times.

It could achieve more in a week than human testing could in two months.

Jemima’s fundraising would be a huge contribution to his team’s efforts in combating DIPG, “the greatest monster” and the leading cause of death in children with brain cancer, says Dun.

Just as significant is the “ultimate donation” of her brain tissue.

To be able to get a patient’s tissue into the lab, growing, living, being part of the cure is incredibly important, he says.

“It shows the maturity of Jemima to be able to identify how important that donation was and how hard that would have been for her family to be part of.

“I am privileged to have so many specimens from Jem from different parts of her tumour, from different parts of her body, that will play an important role in how we unlock the secrets of this disease.”