Ten years, two rare diseases, one brother’s gift

And a message that completely changed his life.

In January of 1998, following the doctor’s orders, Trever arrived at the hospital with a briefcase full of reading materials, blissfully unaware of the news that would come next.

“I’m here,” he said to hospital reception as he waltzed in.

“Who are you? Why are you here?” was the response he got.

It was only after hospital staff confirmed his identity that he was quickly escorted into a private patient room — and locked inside.

Trever was confused to see the next person come in wearing full nuclear, biological and chemical gear.

Then came his diagnosis.

Aplastic anaemia — a rare but serious blood disorder occurring in one in 640,000 people where the bone marrow completely shuts down and doesn’t produce anything.

“The mere breath of another person was sufficient enough to kill me,” he said.

He was then airlifted from Goulburn Valley Base Hospital (now GV Health) to St Vincent’s Hospital in Melbourne.

There the then 44-year-old received an immunosuppressant called Atgam, administered via an IV line to stop his immune system from attacking his bone marrow.

“My blood was the consistency of a red wine and ran like red wine,” he said.

The treatment worked. Trever’s blood count climbed, his body began producing what it needed and for years life continued peacefully.

Hockey had been a constant in Trever’s life from the age of seven when he first picked up a stick, and had continued into his mid-40s.

It was only when a ball struck the inside of his leg, leaving a heavy bruise that again wouldn’t heal, that he knew his playing days were over.

“I’d still be playing now if I was good,” he said.

Then, in 2016 came another diagnosis: myelodysplastic syndrome – a condition where the bone marrow dispels faulty blood cells that can develop into leukaemia.

But it was the timeframe that stunned doctors.

MDS usually runs concurrently with aplastic anaemia, so for it to surface almost two decades later was uncommon.

“It surprised the hell out of everyone,” Trever said.

This time, there was no immunosuppressant that could fix it. Trever needed a bone marrow transplant.

With Trever having 10 siblings, doctors were confident they’d find a match quickly.

Tests on his younger brother Richard (known as Dick) came back 100 per cent compatible, so the process began.

On July 24, 2016, Trever started chemotherapy alongside graft-versus-host drugs, a treatment he describes as designed to “quite literally kill me before rebuild me.”

Three days later, on July 27, Richard’s stem cells were harvested at the Royal Melbourne Hospital and prepared for the transplant that would save his brother’s life just hours later.

“There’s not a hope in hell I would have made it to Christmas that year,” Trever said.

“I would have been dead.”

After the transplant, Trever’s daughter Naomi became his full-time carer as he moved into the Bone Marrow Donor Institute Rotary House in Melbourne, where he stayed for eight months until his counts normalised.

Celebrating the 10-year anniversary of his lifesaving transplant on Monday, July 27, Trever was quick to credit the people who got him through it all: professors Frank Firkin and David Ritchie, the nurses he describes as “phenomenal”, his brother Richard, daughter Naomi and his biggest supporter, his wife, Vanessa.

Where he was once having 21 tablets for breakfast and 17 for dessert, now it depends on the day — usually having eight or nine in the morning and two in the evening.

Trever’s outlook on life remains the same, the bad days occur less often now, and he reflects on the process he endured, describing it as “excruciatingly painful”.

“It’s a mental game. If you let yourself lose, you will lose,” he said.

A game he wouldn’t wish on anyone — not even his worst enemy.

“I wouldn’t give it to them,” he said.

“But if they did have it, I’d make it easier and just go shoot them because it’d be a shitload easier.”