Daisy’s fight: Kiwi preschooler receiving treatment in US after a third of her skull was reattached

• Three-year-old Daisy Nicholls has had a large section of her skull reattached after it was removed to access a brain tumour.
• The section was reattached in a successful six-hour surgery at Starship children’s hospital in Auckland.
• The preschooler is now in Florida undergoing intensive proton therapy to shrink the remaining neuroblastoma.

A 3-year-old girl with a rare and aggressive brain tumour is now having specialist proton therapy in Florida after surgery in Auckland to reattach a large section of her skull.

Daisy Nicholls is in her third week of treatment in the US and “smashing it” according to her mum Riss Nicholls, who has been by her side throughout the tough sessions.

Daisy Nicholls from Whangarei is happy to have her skull back in place after it was removed for six months while doctors treated an aggressive, fist-sized brain tumour.

“Our girl has been her usual amazing self with the only challenge trying to keep her nil by mouth for so long every day,” Nicholls said.

“I get her to choose anything she would like to eat after and remind her there’s always an iceblock or lollipop waiting for her when she wakes.”

Two weeks before she left for Florida, Daisy had a six-hour surgery at Starship children’s hospital in Auckland to reattach a large section of her skull.

Daisy at age 2 (left), before the discovery of the neuroblastoma, and after she had a third of her skull removed to relieve pressure and allow surgeons access to the fist-sized tumour. Photos / Supplied

A third of Daisy’s skull had earlier been removed as doctors attempted to remove the tumour, which was in the middle of her brain and sitting on her brain stem.

As soon as Daisy woke from her recent surgery she touched her head, happy to have the missing piece of her skull back.

“She knew straight away her skull was back, she’s very aware of what’s going on,” Nicholls said.

“She’s very happy because having it back gives her a lot more freedom and we don’t have to worry so much about her hurting herself.”

The rare neuroblastoma tumour was originally discovered after Daisy fell from a swing at kindy last year.

Surgeons operated immediately and removed as much of the tumour as they could.

“It was so aggressive it grew back within two days,” Nicholls said.

Daisy responded well to intensive chemotherapy, which reduced the tumour from 7.5cm to 2.5cm in diameter.

Daisy after the successful six-hour surgery to reattach the large section of her skull that was removed to access the tumour. Photo / Supplied

Specialist proton therapy was needed for the remainder – a treatment not available in New Zealand.

Proton therapy differs from normal radiation as it targets just the tumour and not the healthy tissue surrounding it.

Te Whatu Ora funded flights and Daisy’s treatment at the Nemours Children’s Hospital and the UF Health Proton Therapy Institute in Jacksonville, Florida after a successful application from Starship, and Daisy and Riss are staying at the nearby Ronald McDonald house.

Daisy and mum Riss Nicholls in Florida, where Daisy is having proton therapy for the neuroblastoma. Photo / Supplied

“The thought of being here alone with Daisy felt really scary and daunting but everyone takes care of us so well and we have almost everything we need,” Nicholls said.

“We are so grateful to be here,” she said.

Eight weeks after the treatment ends, Daisy will have an MRI scan to see what impact the proton treatment has had on the cancer.

The couple have a Givealittle page to cover additional costs and time off work to care for Daisy and their other children.

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