Body

It took 50 GP visits to diagnose this Auckland toddler's rare form of cancer

Treatment at Starship hospital has only managed to keep the disease at bay, but her mum says Ka’iulani is a fighter.

Dad Manihera,  little sister Te Atakohu and mum Moana with their precious, spirited girl Ka’iulani.
Dad Manihera, little sister Te Atakohu and mum Moana with their precious, spirited girl Ka’iulani.

Every day is a fight to survive for precious Ka'iulani Forbes and for the frail two-year-old, peace comes in her mother's arms.

Ka'iulani – whose name means "the highest point in heaven" in Hawaiian – loves to bury her head in her mother's chest, for comfort and to nurse.

"Although my girls were off the breast a year ago, my milk came back for her," says Moana.

Ka'iulani lives in Auckland's Orakei with Moana, 34, dad Manihera, 38, and her one-year-old sister Te Atakohu.

"She just wants to be close to me all the time and she knows I'm here for her, no matter what," tells Moana, kissing her daughter's head.

Ka'iulani has spent most of the last year battling a rare and aggressive form of nerve-cell cancer, neuroblastoma. By the time she was diagnosed last December, surgeons found a tumour as large as a pineapple in her stomach.

For Moana and Manihera, the heartbreak was tinged with anger. Growing increasingly worried about their daughter's deteriorating health, the couple had taken their girl to more than 50 GP and specialist medical appointments before she was finally diagnosed."We are so gutted," Moana explains quietly. "If we'd caught Lani's cancer early, it could be a different story."

For now, though, the united whanau must put aside any anger to focus on saving their precious wee girl. Despite surgeries and a raft of aggressive treatments, the cancer marches on. It has metastasised and tumours have eaten into the bones of Ka'iulani's arms, legs, spine and, cruelly, her jaw and eye sockets.

But while the disease may have distorted the beautiful girl's face, Moana says it cannot steal her daughter's spirit or the family's hope.

"Ka'iulani is strong and determined, and we're putting one foot in front of the other," she tells.

Moana wonders if her girl was born with cancer. Even as a newborn, she hardly slept, was always unsettled, and had a distended stomach and constant diarrhoea.

Then when Ka'iulani was 14 months old, she started getting unexplained bruises and black eyes. "One doctor asked, 'Has she fallen?' I said, 'Well, she's just started walking,'" recalls Moana.

"But that black eye would go away and another one would come up in its place. I thought, 'That's not right.'"

At one point, Moana googled "black eyes, bruises, distended abdomen" and it came back with "cancer". She convinced her GP to do a blood test, but it came back clear because neuroblastoma doesn't show in blood.

Then Ka'iulani's eyes began to water. She was vomiting, had raging temperatures and sweated so much at night that her sheets were soaked by morning. Doctors diagnosed a hernia, lazy eye and food allergies.

She was given grommets and surgery for a blocked tear duct. Distraught, Moana and Manihera took their daughter for a second opinion on her eyes from an ophthalmologist. "He was the first doctor who didn't dismiss us," tells Moana.

"He said, 'Something doesn't look right. I can feel a lump near her eyes.'"

Ka'iulani was given an X-ray and CT scan at Waikato Hospital, where the family was then living.

Treatment at Starship  has only managed to keep the cancer at bay, but her mum says Ka'iulani is a fighter.
Treatment at Starship has only managed to keep the cancer at bay, but her mum says Ka'iulani is a fighter.

"The specialist came in and said, 'We've never seen anything like it – the bones in her face look moth-eaten.'"

The family was referred to Auckland's Starship children's hospital and were told their girl was riddled with high-risk grade 4 neuroblastoma.

"You hear 'cancer' and your world crumbles," says Moana.

"I remember asking, 'Will she die?' The doctor said, 'Possibly, if she's not treated.' We thought we were already struggling, but our journey was about to get a whole lot harder."

Two marathon surgeries could only remove about 70% of the tumour in Ka'iulani's abdomen, which by then had wrapped around her spine. The wee girl had four rounds of high-dose chemotherapy, which did nothing to slow the cancer.

Desperate, Moana and Manihera began to fundraise for $1 million to get her to the US for treatment, but at the last minute, they managed to get her on a clinical immunotherapy trial at Starship. "For the first time in what felt like forever, it was a small celebration for Ka'iulani," says Moana.

By now, the family had moved to Auckland to be closer to their whanau and Manihera had left work to be by his daughter's side. But after eight rounds of immunotherapy treatment, doctors saw little improvement.

The loving parents are now talking to the Children's Hospital of Philadelphia and fundraising on Givealittle to raise $300,000 to get Ka'iulani to the US for what could be her last chance.

And while her chemotherapy at Starship may not be shrinking the tumours, for now, it's keeping her cancer at bay. For Moana and Manihera, that means more time to fundraise and also make precious memories. They have recently returned from a campervan trip around the North Island and they're looking forward to Ka'iulani's third birthday this month.

"We will never give up," Moana says. "As long as we have breath, we have hope for Ka'iulani."

The family's Givealittle page is here.

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