Diana Matthews has adorned her modest home at Darnum, east of Melbourne, with family photos, calming candles and soft furnishings.

It’s a sanctuary of love and a vigil of hope for the mother-of-four who is enduring the tough task of coming up with enough money to keep her 32-year-old daughter Emma Trenerry alive.

Diagnosed with stage-four osteosarcoma, Emma is the latest in the family to succumb to the hereditary cancer syndrome that has claimed the lives of her father, four of his six siblings, her grandmother, and great-aunt and uncle.

Mother and adult daughter wear matching Christmas pyjamas and have arms around each other.

Emma Trenerry and her mother Diana Matthews celebrate Christmas in happier times. (Supplied: Diana Matthews)

For many years, the early deaths on the paternal side of the family were attributed to bad luck, but in 1995 the death of Emma’s paternal uncle from leukaemia prompted an investigation that revealed the presence of the Li-Fraumeni gene variant.

Li-Fraumeni syndrome (LFS) is a rare genetic condition that predisposes carriers to developing various cancers early in life.

“It’s quite an aggressive gene, and unfortunately Emma is the only one of my children that inherited the gene from her father, who passed away when he was 40,” Ms Matthews said.

A mother and her four adult children, one in a chair, are grouped together in front of Christmas trees.

Emma Trenerry’s siblings were lucky not to inherit the Li-Fraumeni gene. (Supplied: Diana Matthews)

Emma’s cancer journey

As a preventative measure, Emma underwent a hysterectomy in 2020, even before testing positive to LFS.

During the surgery, doctors discovered and removed a cervical cancer. 

Two years later, during a follow-up full-body MRI scan, doctors found an 8x7x5-centimetre sarcoma growing in her spine. 

“She did have a bit of pain in her hip for a while, which was diagnosed as being arthritic, but when she had the MRI they found cancer in her hip, and it was quite large already,” Ms Matthews said.

A woman with a red, green and white Christmas jumper, wearing reindeer antlers on her head, smiles.

Emma Trenerry, who has a terminal diagnosis, is determined to see another Christmas with her family. (Supplied: Diana Matthews)

Emma had six months of chemotherapy and eight rounds of radiotherapy, which put her in remission for six months.

But unfortunately the tumour started to grow again.        

“Any cancers that come up, Emma’s body cannot shut them down,” Ms Matthews said.

For Emma, her only option is to “keep going” with the time she has left. 

“[I’m] as good as I can be, I guess,” she said.

“It’s hard not being able to do what I used to do, but my kids are just absolutely amazing; they’ve been through a lot and just watching them grow is amazing.”A woman sits, surrounded by three family members, with Christmas trees in the background.

Emma Trenerry’s family and friends staged a Christmas in July celebration for her. (Supplied: Diana Matthews)

Raising funds to pay for cancer drug

During treatments, Emma was informed of a trial for the cancer-inhibiting drug Cabozantinib, a tablet medication developed by US pharmaceutical company Exelixis. 

At $9,500 for a two-month supply, she was initially told by her doctor that she could access the medication for free.

They have since learnt that she is ineligible to receive the drug under the PBS.

Prepared to do anything to prolong her daughter’s life, Ms Matthews and her sister Val made it their mission to learn as much they could about Cabozantinib, and raised the $9,500 needed to buy the drug.

“After just two months taking the tablet, the specialist rang us back and said it was working, that it had stopped the growth of the major tumour, and it had stopped the growth of the tumours in her lungs,” Ms Matthews said.

Ms Matthews’ nieces then set up a fundraising page called Emma vs the Big C, raising enough money to pay for two more rounds, thanks to a TikTok post on Emma’s story by kindness influencer Samuel Widenhofer. 

Emma has been taking the drug for six months and said she was grateful for the extra time it had given her with her children.

“It kills cancer cells, well, it kills a lot of cells, to the point [where] my hair turned white … but when I had a scan done it had actually killed all the active cells there so it helps me live a bit longer,” she said.

A woman in a headscarf stands with her husband and their three children.

Emma Trenerry, her husband Warren and their three children have tried to live a normal life. (Supplied: Diana Matthews)

Witnessing the success of the drug, Emma’s specialist asked for the full price to be waived, but the request was declined, her family said.

Ms Matthews said if Emma paid for and survived eight rounds (16 months) of the drug, she could receive Cabozantinib from the company for free, meaning the family needed to come up with $50,000 for the five remaining rounds in the meantime. 

Drug available for some cancers

Cabozantinib is available under the PBS for treating stage-four renal cell carcinoma and for certain thyroid cancers under certain circumstances.

Eligible patients can receive Cabozantinib through the PBS for $31.60 or $7.70 if they hold a concession card. 

A federal health department spokesperson said the drug did not have Therapeutic Goods Administration approval for treating osteosarcoma.

“Using it for this purpose would be considered ‘off-label’, and doctors should discuss the risks and benefits with patients before prescribing,” the spokesperson said.

“There are various medicines listed on the PBS that may be used in the treatment of osteosarcoma … which are available on the PBS without restrictions. This means any patient can access them if prescribed.”

In Emma’s case, the family said it was told there was nothing else suitable.

A street and adjoining farmland with the sun shining through a tree.

The Nilma Darnum football and netball community has rallied behind Emma Trenerry and her family. (ABC Gippsland: Rachael Lucas)

Footy club intervenes 

Emma said that one of her biggest fears was that her kids would forget who she was.

But she said in her own way, she felt like she had already defeated the cancer. 

“Them not having the gene, I feel like I’ve already beaten it. They don’t have it, so it ends at me now, so I am very blessed.”

As an animal lover, aspiring vet nurse and fan of Steve Irwin, Emma had always wanted to visit Australia Zoo in Queensland.

Coming to the end of her third round, and down to her last $10,000, Emma then had to decide whether to go on a holiday with her family to make some final memories, or invest in another month’s worth of medication, knowing that it could prolong, but not save her life.

But the family’s beloved Nilma Darnum Football Club didn’t want Emma to make that decision.

People walking around a football oval in costumes including a cow outfit.

The Nilma Darnum Football Netball Club has raised $74,000 for Emma Trenerry. (Supplied: Diana Matthews)

Earlier this month, they organised an “I walked to Australia Zoo for Emma” fundraising event, in which more than 500 people walked 4,900 laps of the club’s football oval, the 1,960-kilometre distance from Darnum to Australia Zoo.

They also auctioned off a dinner with former Collingwood star Nathan Buckley, raising an accumulative total of $74,000, for Emma to have a family holiday and pay for more rounds of medication.

Emma, her husband and kids are enjoying a two-week trip of a lifetime on the Sunshine Coast, with the club even organising limousine transfers and a back-of-house tour of Australia Zoo so Emma could hold the animals.

A woman in a wheelchair, her husband and their three children are in front of a pink Hummer limousine.

Emma Trenerry and her family embark on the trip of a lifetime to make some memories at Australia Zoo. (Supplied: Emma Trenerry)

Community rallies behind Emma

In a wheelchair, and on numerous pain medications and sleeping a lot, Ms Matthews said her “pocket rocket” daughter was still smiling, and tried to maintain a sense of normality for the children with their schooling and sporting schedules.  

“She’s not one to sit down and say ‘poor me’. She just gets up and does what she has to do,” Ms Matthews said. 

“She cares for people. She cares for animals. She’s just kind. She’s an absolutely wonderful mother and her children come first in whatever situation. Her children are her life,” Ms Matthews said.Homeware in the shape of the word "love".

Diana Matthews is grateful for all the support that has helped Emma Trenerry’s quality of life. (ABC Gippsland: Rachael Lucas)

Ms Matthews is grateful for the support of family and friends who have helped out with house cleaning, taking the kids to school, transporting Emma to appointments in Melbourne, and everyone who has donated to Emma’s fight.

Two women with scarves. They have their heads together and arms around each other.

Diana Matthews wants her daughter Emma Trenerry to spend as much time with her family as she can. (Supplied: Diana Matthews)

“I can spend time with Emma now without stressing where’s the money going to come from for the next lot of tablets,” she said.

“This medication should be on the PBS for [more] people with cancer.

“They shouldn’t have to pay ridiculous prices like this.”