Four-year-old Ka’iulani Forbes was given just a 20 per cent chance of survival when she was diagnosed with a rare form of cancer two years ago. But it now appears she has beaten the odds, making her pōwhiri all the more jubilant this week as she returned to New Zealand soil with her tumours now inactive.
The young survivor, who has received well-wishes and donations from thousands of New Zealanders, had been getting treatment overseas in Spain since July for the neuroblastoma.
“It was very emotional when the doctor said there was no evidence of active disease," her mother, Moana Forbes, told 1 NEWS. "We never thought we would hear those words, because earlier they told us they couldn’t tell from the scans.”
As the family arrived at Auckland Airport on Monday, Ka’iulani's extended family welcomed her and her parents with a haka pōwhiri.
“It was very emotional, very teary for everyone," said Ka’iulani's father, Manihera Forbes. "It was just nice to see friends and family.”
He said he has never seen Ka'iulani look so happy.
“We ask her, 'Are you happy to be home?' and she just cracks up laughing and smiling," he recalled. "It is just the nicest thing."
Ms Forbes said the first thing Ka'iulani did when she got home was run around every room of the house.
But her parents say they still have a lot of work to do to help her become a normal toddler again.
“The treatments have really taken a big toll on her," Ms Forbes said. "Even the little things really affect her. We have to reassure her quite a bit now."
The Forbes say the support from fellow New Zealanders - many of them strangers - is what got them to Spain for the specialised treatment.
All of the costs were paid for through Ka’iulani’s Givealittle page, which raised $241,136. It was the most amount of money raised for a campaign through Givealittle in 2018.
The family simply wouldn’t have been able to afford the overseas treatment if it wasn’t for Kiwis getting behind them, Ms Forbes said.
“People are saying, 'How awesome that you did this for your daughter,' but it wasn’t actually us - it was everyone else," she said. "All the donations - the whole of New Zealand paid for it, which is so cool.”
Even though Ka'iulani's tumours are benign, neuroblastoma has a high relapse rate. All it takes is one cell for it to start back up again, which would mean the family would have to start from square one.
“At the moment we are on a three-monthly plan to do MRI scans and we really hope they will show that her tumours aren’t growing anymore,” her mum said.
The doctors couldn’t remove the tumour because it is too close to her spine.
"To remove the tumour is too high risk because they would have to remove two disks to get into her spine and they can’t put those disks back," Ms Forbes said.
“The tumours are having an impact on her spine now, so hopefully when she grows they’ll have less of an impact.”
Ka’iulani has ganglioneuroblastoma, which means the cancer growth is slower and less aggressive but harder to treat. She had a genetic mutation in her tumours as well.
“There are a few kids like her but not many," her mum said. "We are talking you can count them on your hand.
“She’s a bit of a miracle, so the doctors said take each day as it comes and make the most of it and hope it doesn’t come back."
It has been a tough journey on Ms Forbes, who gave birth while in Spain.
“Having a baby away from home was so hard and took its toll ... but if I were to drop the ball, I’d feel like I’d be letting Ka’iulani down," she said.
“Coming home was so relaxing. You know how people touch the ground after a big trip. I felt like coming home and touching the ground.”
Tomorrow, the Forbes family will celebrate a late Christmas - the first time doing so at home in years. The celebrations were postponed last month because Ka’iulani was still going through treatments on Christmas Day.
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