It began when he gradually lost sensation and movement in his right hand, before rendering him unable to speak.
Two years later, after chemotherapy and radiation treatment as well as numerous overseas trips to undergo experimental treatment, he's in palliative care at Gundagai Hospital.
Despite the dire situation, Riverina man and former school teacher Ben Lott never wavered in his fight against an aggressive type of brain tumour that has a five-year survival rate of only five per cent, according to the Australian Institute of Health and Welfare.
Born and bred in Gundagai before moving to see the world, but always eager to visit home at every opportunity, the 41-year-old continues to show strength and humility for his family, his friends and the communities that know him.
His wife, Laurenn, said that while it was a horrible situation, he kept telling everyone 'I've done everything I wanted to do' when he was able to speak.
"We take each day as it comes," she said.
"When you're in this situation, everything just gets pared back to the things that you love, like being around your family."
The couple and their two children, Charlize and Lleyton, were living in Rothbury, near Newcastle, when he received the news that he had three to 12 months left after being diagnosed with grade-four glioblastoma in mid-2017.
"It's one of the worst because it is quite aggressive," Mrs Lott said.
"He's done so well since then to have lived beyond what the doctor said.
"At the start, there were two tumours one the size of a golf ball and one a bit smaller.
"They operated on the larger one, which hasn't grown back, but with the smaller one, Ben has undergone the same treatment as the first but it hasn't worked as well."
To the rising sun and back
After initial treatment in Newcastle, Mr Lott went to Japan to undergo four weeks of peptide vaccine, an alternative treatment.
It was the first of nine trips to The Land of the Rising Sun.
The couple has also been to Taiwan twice, for a non-invasive experimental treatment called boron neutron capture therapy, and the US once for a clinical trial not available in Australia.
Unfortunately, because it is a wildtype glioblastomas, Mr Lott now has six tumours in his brain.
The Australian Institute of Health and Welfare states that glioblastoma is the most aggressive type of primary brain cancer, one with a prognosis of 11 to 15 months with standard treatment.
The organisation's Cancer in Australia 2017 data also shows that only one-in-10 people with the tumour survive.
One last wish comes true
Despite the confronting prospect, Mr Lott and his family have celebrated the victories in everyday life.
In early April this year, they were flown from Newcastle to Gundagai Hospital where one of his wishes came true.
Paramedics Nathan Farr and Amy Gardner took him and his family on a tour around the town, probably for the final time, to make more memories.
He was taken to his favourite places, including Anzac Park, where he used to play for the Gundagai Tigers, Mount Parnassus Lookout and the Lotts Family Hotel, which has been owned by many generations of the Lott family.
"The nursing staff organised the paramedics to pick us up and they basically asked us where we wanted to go," Mrs Lott said.
"We went with our children to visit our usual spots when we used to come here for holidays."
At the hotel, they caught up with family and Cobber, the golden retriever. During the tour, Mrs Lott said he was trying to unbuckle himself in the ambulance because he was "just that excited".
"He was trying to sit up and I haven't seen him do that since the diagnosis," she said.
Nathan Farr, station officer at Gundagai Ambulance, said it was "one of the rawest moments in my career as a paramedic and such a privilege to be able to help someone like Ben".
"He and his family have been dealt a really tough blow and we have given Laurenn and the kids an opportunity to make the best memories possible," he said.
Similarly, intensive care paramedic Amy Gardner said it was a moment they will never forget.
"We live in a really close knit community - everyone supports everyone in times like this," she said.
"As a paramedic, it is nice to be able to bring even the smallest amount of joy to someone in one of the darkest moments of their life."
Mrs Lott said she and the family were thankful for NSW Ambulance for going beyond their regular duties.
"It was just amazing, they [paramedics] didn't rush us," she said.
"I kept saying we better go and they said 'No, Ben's loving this', so it's so lovely that they let us take our time."
Back in 2017 when news broke out in the Newcastle region, it triggered a flurry of fundraising events at Rosary Park Catholic School, where he taught year 4, in the wider Branxton community and in Gundagai.
These included the Elders Gundagai branch running three auctions.
Students at the school also raised money for his treatment.
As well, Mr Lott's golfing mates organised a benefit weekend at Branxton Golf Club and his daughter's daycare centre held a raffle.
Throughout their ordeal, the Mark Hughes Foundation has played a leading role.
"It's such a foreign thing until you're actually in the vortex and they've been so supportive," Mrs Lott said.
"Back when we were in Newcastle, which was where Ben's bulk of the treatment's been, they've helped with funding for nurses to help us.
"If anything was happening, they've got a mobile number where you can just ring them.
"Any time where Ben's had a seizure or has had a headache, they've been on the other end of the phone.
"I don't know what you'd do without them."
He's had so much support and says it's to do with the family and the hotel, but I think it's got a lot to do with him as well.Betty Lott, mother of Ben Lott
Mrs Lott, who is a clinical psychologist herself, said the family has come together to show an amazing level of strength and to take pleasure in the everyday, including casseroles, chocolate and soups.
"My parents are amazing, they brought their caravan up," she said.
"I've got my sister coming up, which will be nice as well.
"Our little girl, who's four-and-a-half, has been so cute.
"She gets up and massages Ben's feet and is staying bright around him."
Similarly, Mr Lott's mother, Betty, said "You have to admire his strength".
"I still say to him 'You're the strongest person I know'," she said.
"He's had so much support and says it's to do with the family and the hotel, but I think it's got a lot to do with him as well."
She says her son has been "a quiet achiever" since childhood.
The family will stay in Gundagai for as long as needed.
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