This week brave 15-year-old Portia Swan became the youngest New Zealander to have an "awake craniotomy" so surgeons could remove as much of the tumour from her brain as possible — without damaging healthy tissue.
Portia said she "clearly remembers being woken up for the surgery" and spoke "about one of my favourite TV shows, Friends" to her speech specialist and support person during the 5-hour operation.
On Tuesday, Auckland surgeon Andrew Law removed part of Portia’s skull and then, when he was ready to remove the tumour, woke her from sedation. Having Portia awake to answer questions meant the neurosurgeon knew he was not damaging the part of Portia’s brain responsible for speech.
"It was pretty full on and I could see a lot of wires and monitors," Portia said.
"When I woke up my speech therapist, Anita, was right there holding my hand and talking to me, which was really comforting."
Despite the overwhelming situation, Law helped Portia relax: "Andrew was singing and telling some bad jokes," she said.
Portia said she could also hear music playing that varied from pop songs to more-relaxing music.
"The music was good because it helped me stay calm, which was important because I needed to keep my head completely still and not move an inch."
Portia "couldn’t feel a thing" and was not in any pain because there are no pain receptors in the brain.
Surgeons initially believed there was a section of tumour embedded into the speech and movement part of her brain, but an MRI after the surgery showed otherwise.
"They said the MRI did not show any tumour so it looks like he has got it all out, which is absolutely incredible," Matt said.
"They said there could be tiny molecules left so we have to keep the pedal to the metal with the ongoing care but this is amazing news — we couldn’t be happier."
Law commended Portia’s "maturity and resilience as she navigated this journey".
"He said he would be there for us if we ever needed him again which is so amazing — what a guy," Matt said.
Despite the enormity of the operation, Portia looked well with little bruising or swelling, Matt said.
"I said to her ‘You have just been cut open, had bone removed, had a massive operation when you were awake, been put back together and you look so good, you look like you could run a marathon’," he said.
"She looked amazing and was so perky. The anaesthetists and Andrew and the medical team did a wonderful job with her."
Immediately after the complex surgery, a sample of Portia’s tumour was sent to Sydney for analysis in the ground-breaking Zero programme.
In the next few weeks specialists will analyse the genomic sequencing of the sample and will provide Portia with a specialised ongoing treatment plan.
Portia is the first New Zealander to be accepted into the Zero programme, which has had significant success in Australia.
Matt and Penny said the findings in the Zero programme would be incredibly valuable in making sure any remaining molecules of the tumour were kept at bay.
The family had started fundraising for the costs of inhibitor drugs and Portia’s ongoing care — some of which will be in Australia.
"We are prepared to relocate to Australia for any ongoing treatments with the Zero programme if necessary," Matt said.
Portia would see out the remaining three rounds of oral chemotherapy and have regular MRI scans. The family would also pay for private CT scans, which, unlike an MRI, can detect metabolic movement.
"We want to keep ahead of this and make sure we do everything possible to make sure this doesn’t come back," Matt said.
Top restaurateur and former MasterChef judge Michael Dearth had pulled together two luxury auctions on Trade Me hoping to raise tens of thousands for the ongoing treatment.
The Tale of Two Italian Cities included meals, luxury accommodation and flights to return flights to Melbourne. To bid on that click here.
Dearth had also arranged a harbour cruise on the Hauraki Gulf for 20 people on luxury powercat The Savoy with food from Baduzzi and drinks. To bid on that click here.
Funds raised via a Givealittle page would also go towards expensive inhibitor drugs to stop the remaining cancer from growing. To donate click here.
