Portia Swan was the youngest person in New Zealand to have the complex brain surgery when she was 15.
Portia Swan was the youngest person in New Zealand to have the complex brain surgery when she was 15.
Portia Swan has had several surgeries, including an awake craniotomy, since the discovery of a 3.5cm by 4.5cm grade-three astrocytoma two years ago.
She was the youngest New Zealander to have the surgery, which is performed while the patient is awake.
Now her family are moving to Australia to get further care to stop the tumour growing.
Kiwi teen Portia Swan – the youngest New Zealander to have a tumour cut from their brain while awake – is relocating to Australia with her family to seek cancer care not available in New Zealand.
Parents Matt and Penny Swan have been researching international options since their youngest daughter’s shock diagnosis in 2022 and have pulled together a full medical team.
The family has made the tough decision to leave their Auckland home and their other daughters, Sammy, 19 and Della, 21, who will stay in New Zealand.
“That part, leaving our older girls here, will be hideous, but they are both flatting and loving it and are settled,” Penny said.
Brave teen Portia Swan and the scan showing a cancerous tumour in her frontal lobe.
The scope and level of care available to Portia, now 16, in Australia made the choice easier, Matt said.
“We have multiple oncologists and a nutritional team in Melbourne who are working collectively with us and we are very grateful to have them,” he said.
“In New Zealand, it is a very much ‘watch and see’ type of treatment, but we need to be ahead of the game with this type of tumour.
“It can mutate and grow tentacles at any stage, and we want to prevent that happening.”
One of the possible future treatments for Portia in New Zealand was the blocker drug ivosidenib, which has been quoted as costing $30,000 each month. Portia could be on the medication for four to five years – costing millions the family doesn’t have.
In Australia, there are more options.
Portia will be under the care of the Royal Children’s Hospital in Melbourne, but the family might settle on the Sunshine Coast and travel to Melbourne when required.
A recent research trip to Noosa saw the family swim in the ocean at seven each morning before visiting local hospitals and oncologists.
“We just felt less stressed, and Portia was sun-kissed and had a smile on her face,” Penny said.
“The care is top-notch, and the added bonus was Portia loved it,” Matt said. “We want to do all we can so she has that smile and is enjoying herself.”
The family said funds raised through Portia’s Givealittle page had been a life-saver and helped pay for ongoing costs of private treatments, supplements and scanning.
Portia Swan had life-saving brain surgery to remove the tumour. The incision was 17cm long.
The past two years had been an emotional rollercoaster for the family and physically and emotionally tough on Portia.
Portia had nine rounds of chemotherapy, countless treatments and was the youngest person in New Zealand to undergo an awake craniotomy performed by top surgeon Dr Andrew Law.
Then, 15-year-old Portia needed to be awake for the groundbreaking operation at Starship Children’s Hospital so she could communicate with her language therapist as Law removed the tumour.
