Elyse Johnson beats tumour prognosis and celebrates fourth birthday

Blake, Elyse and Casey Johnson at Elyse's 4th birthday party. The preschooler was not expected to live this long. Photo / Supplied.

There was a princess dress and pink crown cake, but this was no ordinary children's party.

It's been almost two years since Taupo toddler Elyse Johnson was given less than nine months to live.

Last weekend she celebrated her fourth birthday, a milestone parents Jamie and Casey thought their little girl would never see.

And the brain cancer that struck the once feisty preschooler down, a diffuse intrinsic pontine glioma (DIPG), is stable against all expectations.

Elyse was diagnosed with the aggressive and inoperable brain tumour in April last year.

She can no longer walk or talk and is classed a quadriplegic but can still comprehend her surroundings.

Elyse Johnson is still aware of what's happening even though she can't walk and talk. Photo / Supplied.

Mum Casey said close friends and family helped the girl celebrate her special day.

"She's really good at the moment. She's just really stable and really happy, laughing a lot."

Elyse's latest scan shows the tumour is not growing, which doctors cannot explain.

It is a turnaround since July when the scan showed the tumour was only 1mm from pressing on the base of Elyse's brain stem, which would mean death.

The Johnsons have put it down to the alternative therapies they use to treat Elyse, instead of chemotherapy and radiation that doctors recommended.

Every day Elyse has cannabis oil, TBL-12 or sea cucumber, Vitamin C, probiotics, dandelion, frankincense oil, and black cumin seed oil.

Because she can no longer swallow, Elyse is fed through a gastric tube with Liquid Hope, an organic, whole-food formula from the United States.

"She looks really healthy and people who don't know she's sick just think she's tired. That's why we keep doing it."

But the therapies cost more than $4000 each month.

Blake, Elyse and Casey Johnson at Elyse's 4th birthday party. The preschooler was not expected to live this long. Photo / Supplied.

A Givealittle page helped to raise $60,000 earlier this year but Casey Johnson said the family were down to their last $6000.

They have updated the page and hope the public can help get them through the busy festive season to the New Year when more fundraising events can be planned.

In the meantime they said it would be a quiet Christmas for the family, including older brother Blake, 7.

The couple have also decided not to pursue an earlier decision to take Elyse to a special clinic in Mexico to treat the cancer.

To help Elyse visit https://givealittle.co.nz/cause/supporting-elyse#