Photos: Carmen Bird
The Swan family made headlines last year when 15-year-old Portia became the youngest New Zealander ever to undergo an awake craniotomy – a complex brain surgery in which the patient stays conscious and talking for part of the time.
Now, Auckland parents Matt and Penny have opened up about their nightmarish journey, how they stay strong and their love for their remarkable daughter.
It began in September 2022, on what seemed like a normal night. Matt, 54, Penny, 49, and their daughters – Sophie, 34, Lourdes, 24, Della, 22, Samantha, 19, and Portia – were sitting down to dinner.
Then it happened. “Portia’s face went bright red and she froze,” Penny recalls.
“At first, I thought she was playing statue or something,” Matt says. “Then the next moment, it was like a bird perched on top of a fence that just dropped.”
Portia had never had medical issues before. Now she was on the floor, stiff and convulsing, in the grips of a seizure. “It was an incredible shock,” Penny continues. “The whole house went into turmoil.”
Doctors at North Shore Hospital examined Portia, then sent her home, blaming a recent gastro bug.
A week later, she had two more seizures. This time, the hospital did a CT scan, which Penny remembers as “the first stab in the heart”.
She explains, “The guy came out afterwards and we just knew from the look on his face. He was so solemn. He said, ‘You need to go to Starship [Children’s Hospital].’”
Further testing revealed that Portia had a 3.5 x 4.5cm tumour, a grade-3 astrocytoma, very rare in children. Chillingly, Matt and Penny learned it had been slowly growing, undetected, since their daughter was little. Now surgeons rushed her into surgery, removing 80 percent of the tumor.
The remainder required an awake craniotomy so surgeons could tell whether Portia’s speech and movement centres were affected. But she was only 14 and this highly stressful surgery was almost never done on children.
They held off for as long as possible, but last November, Portia’s surgeon told the family time was running out. They had to stop the tumour from growing again.
Penny speaks emotionally about the lead-up to the surgery, when Portia met the speech therapist who would be present.
“When Portia decides who she’s going to open up to, she’s chatty, but she’s very selective,” says Penny. “I was worried. I said, ‘This lady needs to know you really well so she can talk to you right through. She needs to see the true Portia.’
Penny’s plea to her girl worked. “An hour later, Matt and I walked back into the room, and we could feel this warm, fuzzy energy. Portia had opened up, and given her whole heart and soul.”
The surgery was as successful as it could have been, with the surgeon removing all visible parts of the tumour. But behind the scenes, the message was clear: she wasn’t out of the woods.
“The data for this type of tumour is horrific,” says Matt. When Portia was first diagnosed, the surgeon told him and Penny they could expect three or four years with their daughter. Now, in light of the craniotomy and the many variables involved, they don’t know what the prognosis is. “I’ve been too scared to talk about it again,” Matt admits.
Treatment costs have been enormous and will continue to pile up no matter how things progress. Fundraising and Givealittle donations have been crucial, allowing the family to access better imaging technology, and complementary therapies like acupuncture and nutrition support, among other things.
Portia’s recent scans don’t show tumour growth, but her oncologist says they’re “living on a faultline” – anything could happen.
“We hate to think about this, but if things take a turn, and we’re wanting to give Portia the best possible years, how does that look and feel?” says Matt. “She told me recently, ‘Dad, I really want to go to Italy.’ Do we pull her out of school, pack up our home and go travel Europe for a year?”
Penny has spent many sleepless nights researching cancer treatment. Learning about the latest advances and seeing promising results from international studies keeps her going. That and knowing Portia needs her mum to stay positive.
“If I’m okay, she’s okay. If I’m strong, she’s strong.”
After her craniotomy, Portia’s ability to resume high school brought the couple great joy.
“She just wants to be normal,” Penny says. “She went to her first beach party in the school holidays. When she tells us about simple teenage things like that, we’re holding on to every word.”
To support Portia and her family, visit her givealittle page.
