Dressed in pink from head to toe, Charlotte Powell has a giggle that fills up a room.

But her family are living in limbo as the 5-year-old faces the possibility of a third brain surgery for rare, recurring tumours.

The growth is unusual, leaving her family uncertain how long they might have with her.

Mum Sarah Powell said the past 15 months have been traumatic.

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"The process of diagnosis to the undertaking of medical procedures and trying to comfort her when you know she's physically hurt and when you don't have any control over it. There's no ability to access the future, you're just living in between."

Charlie, as her family call her, is a water baby who also loves roller coasters. Her mum said she is very loving, really funny and smart.

"She just loves you. That's what's scary, I think. Both me and my husband we've talked about the what if, and how we will cope. I just can't imagine how you would stay strong after losing her."

Charlie lives with her parents and three older siblings on a lifestyle block near Dargaville. In November 2016, she celebrated her 4th birthday.

The next day she started having morning and afternoon fevers.

A trip to the doctors, a blood test and a week in Whangarei Hospital offered up a diagnosis of Kawasaki disease, but further tests and a stay in Starship Hospital in Auckland changed that diagnosis to one of systemic juvenile arthritis.

Over the Christmas and New Year period she was in Whitianga with family. "There was this moment, she suddenly screamed in pain."

Mrs Powell said it passed quickly but she and her husband, Jamie, decided to stop off at Starship on the way home.

Doctors did an MRI before calling her parents into a room, where they were told Charlie had a brain tumour and she needed to be operated on that night or the next morning.

A tumour the size of a mandarin was removed from Charlie's cerebellum, at the back of her head.

"A week and we would have lost her."

Mrs Powell said it was initially diagnosed as an Atypical teratoid rhabdoid tumour (ATRT) and the Powells were set to hit it with the "full caboodle" of chemotherapy, radiation and stem cell treatment.

A sample was sent to America, which came back saying it was an Angiomatoid Fibrous Histiocytoma (AFH) tumour.

Mrs Powell said that was a positive thing as an AFH tumour has a better prognosis.

"That pretty much meant we could have surgery and be on the home straight, and we thought we were."

An MRI scan in September last year found a recurrence of three little tumours in the same spot. Surgery the day after her 5th birthday in November removed those.

"We had a follow-up scan two weeks ago and we see there are three more in there now."

Mrs Powell said a sample of Charlie's tumour has also been sent to Germany.

"In Germany, they cross-referenced it to 7000 brain tumours and it didn't match."

Mrs Powell said the tumour isn't behaving how an AFH tumour is expected to. They are usually a mid to low-grade slow-growing tumour that normally grows in the trunk and limbs, but there are few cases in the brain.

"The problem with this being a super-rare tumour, we don't know essentially what to do. How to manage it, there's not significant evidence."

Her family have turned to holistic measures, too, including a range of herbal supplements and removing sugar and processed foods from their diet.

Radiation and surgery are options for the latest tumours but Mrs Powell doesn't know how effective they will be long-term, given the lack of knowledge about the type of tumour.

A Givealittle page is running for Charlie, to donate go to: givealittle.co.nz/cause/charlieschallenge