‘Miracle drug’ completely shrinks baby boy’s tumour, after shock cancer diagnosis

Just 12-weeks into his short life, baby Flynn Christy was diagnosed with infantile fibrosarcoma – but a “miracle drug” has worked wonders on his large tumour.

A “miracle drug” has completely shrunk a baby boy’s tumour without any side effects, wiping out the need for surgery or toxic chemotherapies after he was diagnosed with a rare cancer at just three-months-old.

Last September, just 12-weeks into his short life, baby Flynn Christy was diagnosed with infantile fibrosarcoma – a soft-tissue cancerous tumour that grows rapidly, and in most cases, is found in children under the age of one.

Flynn Christy with his mum Marina Forde. Picture: Sam Ruttyn

It was news that shattered his first-time parents Marina and Thomas’ world into a million pieces.

They had taken their usually “happy and easy” baby to the Westmead Children’s emergency department after he became unsettled, initially thinking they were “crazy” for even considering a hospital visit.

“He woke up that night and he was just screaming and no matter what I would do, nothing worked, I tried bathing him, feeding him, nothing,” Marina said.

“The only thing I could notice was that his tummy was really hard.

“Of course once we arrived at the hospital he settled, so we thought ‘are we crazy, do we go in?’, but there was something telling me we had to.”

The next hours and days at the hospital were a blur, with scans revealing a huge tumour blocking Flynn’s left kidney.

The cancerous growth had a volume of 440mm — bigger than a can of coke.

“He was three-months-old, and the tumour was so big, we were just petrified,” Marina said.

“We were just in so much shock. Everything was perfect one day, and then your whole world is falling apart the next.”

Flynn Christy. Picture: Sam Ruttyn

While it’s a type of cancer doctors at Westmead Children’s only see once every five or so years, it usually responds well to a mix of surgery and chemotherapy.

But associate professor Geoff McCowage and his team at The Children’s Hospital at Westmead analysed Flynn’s tumour and identified a genetic abnormality that was sensitive to an oral drug called Larotrectinib, which works by targeting a specific gene change, NTRK fusion, in solid tumours.

“In years past, we would have had to give chemotherapy drugs, big, toxic, strong, nasty chemotherapy drugs that make your hair fall out and give you low blood counts,” Dr McCowage said.

“But we found that his tumour had a particular gene abnormality that was eligible for this wonder drug — so instead of giving him nasty, toxic, awful chemotherapy, that would have seen him in and out of hospital, and possibly made infertile, we gave him this medicine.”

The drug was administered orally twice a day, with Marina drawing it up in a syringe and popping it straight in Flynn’s mouth.

She likened him to a “little bird”, quickly learning to open his mouth every time he saw the syringe come out.

After just five weeks on Larotrectinib, Flynn’s parents and his doctors were shocked to find the tumour not only shrunk, but had almost disappeared, measuring just 12mm.

And by February, the tumour was undetectable, with Dr McCowage labelling the medicine a “miracle drug”.

Scans show Flynn’s tumour at the beginning of treatment.

No evidence of the tumour on Fynn’s most recent scan.

“Not only has he been spared the toxic chemo, we aren’t even going to operate, because there’s nothing left to take out!” Dr McCowage said.

The drug works by blocking the signals needed for cancer to grow – and the best part is, in Flynn’s case, there were no side effects, which allowed him to thrive and grow like any other healthy baby.

His parents were able to take him to the beach during treatment, and home to Ireland for Flynn’s first Christmas.

“If we didn’t have this drug our lives would have looked very different,” Marina said.

“If I told you Flynn had cancer you wouldn’t have known. He was healthy, happy, and never lost his appetite.

“His immune system wasn’t suppressed so we didn’t have to worry about him being around other people. It was incredible.”

Flynn will continue on the medicine for the next year to ensure there is no recurring growth.

NSW Health Minister Ryan Park said Flynn’s story was “remarkable” and showed how incredible the state’s doctors are.

“This is a vastly optimal care pathway for Flynn and his family,” he said.

“It’s a truly remarkable story, and a testament to the innovation and genius of our clinicians.”

Originally published as ‘Miracle drug’ completely shrinks baby boy’s tumour, after shock cancer diagnosis