The 6-year-old currently has 850 beads of courage from all her treatment due to her rare liver cancer, hepatoblastoma, that occurs in 1 in 1 million people. Photo / Supplied
The 6-year-old currently has 850 beads of courage from all her treatment due to her rare liver cancer, hepatoblastoma, that occurs in 1 in 1 million people. Photo / Supplied
A Christchurch family are raising money for their 6-year-old daughter to undergo potentially life-saving cell transplant treatment in the United States.
However, a year after Nora Guise's extremely rare genetic mutation was diagnosed, it was discovered in her father, Rohan, and 3-year-old sister, Thea.
The Guise family are now not only trying to raise money for Nora to get to Texas - to fight the rare hepatoblastoma - cancer of the liver that occurs in 1 in 1 million - but oncologists have since been assigned to both her father and sister.
Mum, Elyse, says it's been an emotional time since her daughter's shock diagnosis in July last year after several months of random vomiting that began in just her second week at school.
"It's been a roller coaster. There's been huge highs and huge lows, definitely."
Nora came into the world, "very slowly", Guise said, the culmination of a 24-hour labour.
Her laidback arrival continued after birth, which allowed the first-time mum the rare joy of eight-hour sleeps, while others in her ante-natal group survived on barely a few each night.
Guise, 34, said growing up, her daughter was just like any other kid; no health issues and was tracking along normally in terms of growth.
But it was when she first started school, the day after fifth birthday, that concerns began.
On just her second week - and Guise's second day back at work - she got a call from the school to say that Nora had vomited.
Nora Guise, 6, and her younger sister, Thea, 3. Thea has since been found to also have the rare gene mutation which brings on the onset of cancer. Photo / Supplied
She dutifully picked her up and given school requirements, was kept at home for 48 hours, as a precaution.
Then it happened again. And again.
After the fourth time, in June last year, and concerned, Guise took her to their doctor.
He did an assessment and said her abdomen felt "unusual" and her liver "incredibly big", so sent them to the hospital, where more tests were done.
They went back the following day and had an ultrasound where they were told she had a "mass on her liver".
However, thoughts of any form of cancer didn't sink in until she was introduced to a doctor - an oncologist - the following month.
"I didn't even think it was cancer. That never crossed my mind .. I held back my emotions and my fears because I didn't want to scare [Nora].
"Nora's oncologist came to see us, I had never met him before ... and my breath just went out and I will never forget that moment. And it all happened from there."
Her original tumour encompassed 60 per cent of her liver, measuring 13cm long and 18cm in circumference, It took slightly longer to pick up due to its elongated nature. It had stretched down nearly as far as her hip bone.
The CT scan showed it had already spread to her lungs and gallbladder.
Due to its size, she had to have three rounds of chemotherapy before it was small enough to be operated on.
The family of Nora Guise, 6, are trying to raise $140,000 so she can undergo a potentially life-saving cell transplant procedure in the United States to fight a rare liver cancer. Photo / Supplied
Her gallbladder was removed along with the bottom half of her lung, however, it's there that it keeps growing back.
She's since lost her hair and suffered huge weight loss. She has been fed through a nasal tube overnight for the past 13 months to keep her weight at a reasonable level, but she was still "quite small" for her age.
In January, they were given a suggested last-ditch option for treatment in New Zealand of four further rounds of chemotherapy which specialists believed would give her a 40 per cent chance of a cure.
It was then they found a TP53 gene - or Lifraumeni Syndrome - in Nora's blood, a genetic condition which pre-disposes people that have it to cancer.
Doctors had been unable to find anyone else with both hepatoblastoma and the TP53 gene so they decided to test both parents to see if there was a genetic link.
Both Rohan, 38, and Thea tested positive and now both have their own oncologists and are currently in a screening programme for cancer.
By the age of 40, those with the gene have a 50 per cent chance of getting soft tissue cancer and it rapidly rises each decade onwards.
The 6-year-old currently has 850 beads of courage from all her treatment due to her rare liver cancer, hepatoblastoma, that occurs in 1 in 1 million people. Photo / Supplied
As for Nora, by August this year, her oncologist told them of the Texas option which she was later confirmed as being eligible for.
Despite only setting up a givealittle page on Friday last week, it had already raised $111,000.
The family, who moved to Christchurch from Tauranga 12 years ago, had been floored by the support from generous Kiwis, including high profile ones Dan Carter and Izzy and Daisy Dagg, as well as her employer who had kept her job open at Portrait House for as long as she needs.
Guise said despite everything her daughter had endured the last 18 months, she had remained as positive and empathetic as ever.
"I just feel like she's got this huge zest for life because she's been through so much and now she's got this almost freedom for a while until we go to Texas.
"She is my hero, she has been so amazing. The things that kid has seen and been through and she does it with a smile."
Guise said as soon as the givealittle page hits its target, she and Nora will head to the United States to begin the treatment.
