First-time parents Moana and Manihera Forbes are reeling after their two year old daughter Ka'iulani was diagnosed with neuroblastoma.
The diagnosis comes after 50 visits to the doctor and trips to the hospital. They are now questioning why it took so long to get a diagnosis.
Ka'iulani is now riddled with cancer and is fighting for her life.
She was diagnosed just 10 weeks ago, news that shocked her parents even though they had been concerned about their little girl for months.
Ka'iulani's mother was devastated when she got the news.
"Just to hear your kid has cancer was something you could never comprehend - your world just stops," said Ms Forbes.
It's been a heartbreaking two years for the new parents, who say at every turn they seemed to have meet dead ends.
Their medical records show they visited their Hamilton GP 50 times in a year, with no mention of cancer.
Eventually Ka'iulani was referred by her GP to a specialist at Waikato Hospital, but that referral was declined.
The whanau can't understand why Ka'iulani wasn't diagnosed earlier.
"It's frustrating because Starship Hospital knew within 24 hours," said Ms Forbes.
"They did two tests that were non-invasive, an ultrasound and urine sample was enough to diagnose her."
In a statement to The Hui, the Waikato DHB said: "In June 2016 we received a referral from the GP for a number of symptoms which did not suggest anything of immediate or unusual concern, and we asked the GP to keep an eye on these and let us know if she had not improved within two months.
"The information we had available at the time, from our own consultations, from the GP and from her medical records, did not point to a diagnosis of neuroblastoma."
Adding further stress to the Forbes family is the global shortage of the immunotherapy drug used to treat neuroblastoma. Up until November, patients receiving treatment were guaranteed the drug - but Ka'iulani missed that deadline, being diagnosed in December.
Her life is now filled with uncertainty, and while results so far show that Ka'iulani's tumour hasn't reduced in size, her parents are hopeful she will be able to get on a clinical trial at Starship Hospital where she'll get access to the immunotherapy drug that is no longer available in New Zealand.
To help Ka'iulani, see the family's Givealittle fundraising page.
The Hui
