Brave teen to be awake during brain surgery for tumour
Kirsty Wynn meets Portia Swan, who will soon undergo a procedure too demanding for many adults
A 15-year-old with a cancerous brain tumour will undergo a rare and complicated surgery while fully awake so she can talk to surgeons during the operation.
North Shore teenager Portia Swan will have an awake craniotomy on November 21 to remove the remaining 20 per cent of a tumour on the part of the brain responsible for speech and movement.
The courageous Aucklander is one of the youngest New Zealanders to have the operation, which is rare in young people because of the emotional and mental capacity required.
Her surgeon, Dr Andrew Law at Starship children’s hospital, said Portia needs to communicate with his team during the operation so they know they are only removing the growth and not touching healthy and vital parts of her brain.
The surgery comes a year after Portia’s initial diagnosis.
In September 2022, doctors discovered a 4.5cm x 2.5cm tumour in Portia’s brain after seizures first indicated something was seriously wrong. Tests revealed the mass was a grade 3 Astrocytoma — a fast-growing and aggressive tumour usually seen in adults.
Portia’s parents, Matt and Penny Swan, said the news “turned their world upside down” and the year that followed was an emotional rollercoaster.
Since the diagnosis, Portia has had surgery to remove most of the tumour and then nine rounds of oral chemotherapy to keep the remainder at bay. She has three more rounds of treatment to go.
“Portia is a resilient girl but awake craniotomy is a full-on procedure for anyone to endure,” mum Penny said.
“The chemotherapy treatment she has been having means the tumour hasn’t grown but it is in that horrific spot around speech and movement, which is why she needs this operation.” The type of tumour Portia has is aggressive and could grow at any time.
“We just want to get it out before this tumour grows tentacles and starts spreading,” Matt said.
“These types of tumours can do that, they are nasty and can grow these little octopus-like tentacles and embed themselves. We are thankfully not at that stage.”
Awake craniotomies typically take about four hours and patients need to be able to speak and move to ensure surgeons remove the tumour but don’t damage critical parts of the brain.
Law is one of the few surgeons in New Zealand who performs the surgery. He operates on between six and 10 people a year. Almost all are adults.
Part of the skull is removed under anaesthetic and then the patient is woken for the procedure. Awake craniotomy is relatively painless because the brain tissue has no pain receptors.
“Most are adults and I am very selective on who I operate on,” Law told the Weekend Herald.
“It is well tolerated but you have to pick who it suits. You have to be a very calm and cool person so it wouldn’t suit someone who was anxious.”
He said Portia was one of the youngest people to undergo the operation but he was confident it would be tolerable with her relaxed personality.
“I wouldn’t consider it in young kids because it is not fair. They have to understand what is going to happen and not be afraid. I try very hard not to make it scary.”
“Portia is very cool and we get along well,” Law said.
During the operation, a speech and language team will work with Portia to ensure the part of her brain controlling language is not damaged.
“The team will get her to name objects and repeat things to test the components of language,” Law said.
“The goal is to avoid a particular deficit by doing the activity we are trying to avoid affecting — so for us language is the most important one.”
The thought of an awake craniotomy was overwhelming for some but Law and his team were dedicated to relaxing the patient and making them feel comfortable.
Portia is a resilient girl but awake craniotomy is a full-on procedure for anyone to endure. Penny Swan
He had told Portia to expect a lot of bad ‘dad jokes’ when on the operating table.
“It is very different to have a patient awake and chatting to you during an operation.
“But we have been doing this for 10 years now so it does go very smoothly. The team has developed over time so it is not new or scary — we know what we are doing.”
Matt and Penny are helping Portia mentally prepare for the operation, as are her four older sisters.
“Portia is gearing up and getting herself in the right head space for this operation,” Matt said.
“We have been told it is extremely rare in children because it is so full on and a level of maturity is needed to handle it. ’
“We parent in a very upfront and clear way so she knows what to expect and we are all supporting her in every way we can.”
The past year had been incredibly tough for the Swan family with some very low points.
But they always stayed positive for Portia.
Penny said watching her daughter go through surgery and then nine rounds of chemotherapy had been the hardest thing she had ever experienced.
“I may come across as strong as an ox but deep down I have had moments close to breaking point and am using tools such as meditation and yoga to get through,” Penny said.
“Otherwise I would be an emotional wreck and that is no good for Portia.”
The family had fundraised so Penny could afford time off work to care for Portia and are fundraising again to help pay for a clinical trial in Australia after her surgery.
The family have spoken to an expert in pediatric brain tumours and are hoping Portia will be accepted into the respected “Zero 2” trial at the Royal Children’s Hospital in Melbourne after her surgery.
“We are hoping for the very best result with the surgery but we would be pretty ignorant to think that is the end of the journey,” Matt said.
“We will do everything we can to make sure Portia has the best outcome and the best chance even if it means relocating for additional treatment.”
The Swans said support from friends, family and Herald readers had been invaluable.
“We are beyond grateful, it has been a very humbling journey,” Penny said.
Family and friends have set up a Givealittle page to help fund additional treatments for Portia and to allow Penny to have time off work to care for her daughter.
i To help the Swan family, go to givealittle.co.nz and search Portia Swan.