When Elyse Johnson was diagnosed with DIPG (diffuse intrinsic pontine glioma) in April, 2016, her family was told she had just months to live.
More than two and a half years on Elyse has just celebrated her fifth birthday.
Her mother Casey Johnson said against all odds her tumour had been shrinking.
A one cm reduction had made a huge difference – her little girl was once again trying to pick things up, trying to roll over and was eating again.
Elyse had even returned to kindy three times a week.
“She loves it,” Johnson said.
The Johnsons credit the alternative therapies they use, instead of chemotherapy and radiation that doctors recommended, in helping the toddler.
But it comes at an enormous expense.
Looking back at the first Givealittle page the couple created, there had been initially such huge flurry of support with more than $60,000 donated.
“It was a bit overwhelming to be honest,” Johnson said.
But it was also amazing that so many people wanted to help, she said.
“I don’t have the words to say thank you, it’s just blown us away.”
The family have raised more than $100,000 just to keep her on the cannabis oil, she said.
Elyse’s entire regime adds up to about $4000 a month, she said.
Cannabis oil, TBL-12 or sea cucumber, Vitamin C, and Liquid Hope (an organic, whole-food formula from the United States) all remained staples in her routine.
The Taupō family is still fundraising on Givealittle for their wee girl as they plan ahead.
Johnson said it was no longer like caring for someone who was terminally ill, and the family had found their new normal.
“If it [the tumour] keeps shrinking over the next year she could start walking and talking again,” she said.
“All we can do is hope. Things could change overnight but at this rate it’s been really good.”