Parents’ unthinkable choice for newborn
Tiny Harper was just 12 days old when her parents were delivered their first blow.
Their newborn baby had a tumour on her eye so large surgery wouldn't remove it.
In a way Luke and Katie Rollinson were prepared for the prospects.
They knew Harper was carrying the retinoblastoma eye cancer gene and could end up in a dangerous situation like her dad who lost his eye when he was a baby.
But they never expected they'd be put through the heartbreak of watching her endure chemotherapy when she was so little. She was the second youngest patient at The Children's Hospital at Westmead to undergo such treatment.
Six months of painstaking chemo meant one good thing - the tumour would be gone.
Then came the other blow - the treatment meant she would lose her hearing.
The Rollinsons spent months in hospital away from their Bulli home near Wollongong - Kate sleeping in a chair beside Harper's cot on the ward, Luke in a nearby hostel and their parents driving her older brother Eli up every day.
"It was a nightmare," Mr Rollinson told news.com.au.
"It was heartbreaking, it was something we certainly were aware was a possibility, but we were just shocked and heartbroken when we found out."
"You think how can a baby at that age have chemo. She was so brand new, so small and tiny having chemo, but the other part that kept us going was hopefully she wouldn't remember any of that."
HARROWING FAMILY HISTORY
Mr Rollinson lost his right eye to the cancer when he was just 18 months old.
He had a few of the tumours in the left, but thankfully, that eye was able to be saved.
"Fast forward 30 years with our first child Eli and we noticed at five months," he said.
"We took a photo and noticed one of the retinas was white compared to red, and they found a small tumour on the outer edge of his eye."
Through laser and cryotherapy the tumour was safely removed and Eli, now 6, has had no relapses since.
"That was very lucky for him," Mr Rollinson said.
"Through that we got access to the right people at Westmead who did genetic testing, and I carried the RB gene.
"In preparing for Harper we underwent amniocentesis (a prenatal test) and she did have the gene unfortunately."
Only one parent needs a single copy of the mutated gene to pass the increased risk of retinoblastoma on to their children.
If one parent carries a mutated gene, each child has a 50 per cent chance of inheriting that gene.
The couple made a plan with doctors to deliver Harper as early but as healthy as they could. She arrived at 36 weeks with the best plan in place for early detection.
"We were devastated to be honest," Mr Rollinson said.
"It was completely blocking her central vision in that eye."
The struggle didn't stop there. After Harper's vision was saved, the next step was seeing if her hearing could be recovered.
"We tried for almost a year with hearing aids to give her an increase in access to sounds, and they were giving her levels but not clarity, and her development was falling far behind," Mr Rollinson said.
In December 1, 2017, Harper, now 4, was fitted with a cochlear implant through The Shepherd Centre that changed the family's life.
"This last year her development has gone through the roof," her dad said.
"It's been absolutely amazing to see. You look at her now and you wouldn't even know she's had chemo. She's a spritely little thing, a tough cookie.
"We hope by the time she gets to school she'll be very close to the other kids."
FAMILY GIVES BACK FOR BRIGHTER FUTURE
The Rollinsons always said when everything settled down they would do whatever they could for children's cancer research.
They're in a space now where they can share their story and raise awareness.
Early detection saved their daughter's sight.
Gene testing helped them figure out how at risk their family was.
Doctors worked tirelessly to ensure their kids were given the best start to life.
All came through medical research and technology.
Their kids no longer have to go under anaesthetic to check their eyes, which means fewer trips to hospital.
Mr Rollinson has been an ambassador for and taking part in Endure for a Cure, a 12-hour cycling relay, for several years now.
The event aims to complete as many laps as possible, in an effort to raise funds for vital research at the Children's Cancer Institute so more kids like Harper can lead a long, full and happy life.
"Although our cancer journey has been tough in recent times and still in parts today, we are excited about what the future holds for cancer sufferers and the advancements in research and technology," Mr Rollinson said.
"Just imagine what opportunities may be possible in another 10 or 20 years time when it comes to cancer treatment."