Jake Spurdle: Port Macquarie teen’s world-first treatment for rare cancer
The mum of a Port Macquarie teen has opened up about how her brave son is her hero after a twinge on his hip turned out to be a rare bone cancer.
Mid-North Coast
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Two years ago Port Macquarie teenager Jake Spurdle was living life as a fit and healthy teenager who was untroubled, wholesome and happy.
Over consecutive months between July and September 2019, the then 14-year-old – a keen runner – conquered three events including the 10km North Brother King of the Mountain, and two other races staged in Coffs Harbour and the Gold Coast.
A slight hip twinge Jake first felt in May wasn’t affecting his performance, and at no time did he complain of injury, soreness or ill health during or immediately after his events.
It wasn’t until late September when he mentioned his hip to his nurse mother, who reacted like any mother first might – treating it with an ice pack and a couple of Panadol.
“As a typical mother nurse, you know, that’s what we do – I gave it a rub and treated it with some Panadol,” Nyky Napier-Reynolds said. “I told him ‘you’ll be right.’
“But gradually as the months went by, he would say ‘oh mum it’s getting sore’ and I told him ‘oh for God’s sake it’s only growing pains or something.’
“So we started ticking off all the things it might be. We went to the physio, then we went to the GP where they took an X-ray of the growth plate in his foot, and that was fine, then they took an X-ray in his hip – and we kept rolling on like this.”
By this stage four months had passed and it was suddenly December. Nor Jake, Nyky or health professionals had any idea of behind his troubling hip pain, which was starting to severely impact Jake‘s day-to-day life.
Walking the 4km route from his Lighthouse Beach home to Mackillop College and back was no longer possible, nor was flipping burgers at his new job at McDonald’s.
“I started to think, was this a mental health thing, was there something wrong at school? Was he bunging it on?,” Nyky said.
But on New Year‘s Eve, following months of tedious trial and error, the news of Jake’s condition suddenly hit home when doctors at Port Macquarie Hospital performed an emergency MRI.
“That morning he ran into my bedroom saying his leg felt funny and it was numb,” Nyky said.
“I said ‘that’s it, we’re going to emergency’ so we rushed up to Port Base ED and through the course of the day they did an MRI on him … and that was that.
“They found this massive tumour on Jake’s hip and within two hours he was flown down to The Children’s Hospital at Westmead and that’s where the journey started.”
That tumour turned out to be what’s called Osteosarcoma, which is rare bone cancer that forms in the cells that grow bone tissue.
Jake underwent 14 weeks of chemotherapy before being transferred on to radiotherapy. The latter stopped working, while the former made Jake unbearably ill.
The grief it was putting Jake’s fragile body through led the family to pursue an alternative method.
“By this stage it’s [cancer] all the way over the right side of his pelvis, on a facet joint on his spine, and it goes down his leg through his femur.
“He now also has a lung disease and metastatic disease as well.”
Fast forward 12 months to today, and Jake is happily receiving a world-first treatment for a child of his age and condition via a private company at John Hunter Hospital that helps intravenously kill cancer cells.
EnGeneIC is a biopharmaceutical company that uses nanocell technology for the targeted delivery of chemotherapeutics and nucleic acids in cancer. It is designed to treat cancer treatments with more potency, but less toxicity.
The ‘compassionate treatment’ is provided via a solution which is infused intravenously through a Hickman Line into Jake’s body two times a day, for 20 minutes each time.
EnGeneIC has agreed to support Jake with help of the John Hunter Hospital who had no hesitation in assisting, for free.
“Compassionate treatment is basically when you are running out of options and there is nothing available for clinical trials,” Nyky said.
“Jake is the first Osteosarcoma paediatric patient in the world to receive this treatment… we‘re not sure how it is going to go, but it is not as vile as radiotherapy treatments.
“What it actually does, very very cleverly, is it hooks on to the bad cancer cells and it doesn’t kill the good cells, like radiotherapy or chemotherapy.
“But what‘s most important is that he is feeling well now and there is no hair loss, no nausea from what you would experience with chemotherapy.”
Jake’s capacity to still help mum around the house, despite his condition, is something to be admired.
Tea and coffee are among his specialties, as is painting and performing basic school experiments at home.
Simply put, Jake is his mum’s hero.
“As a single mum and without the support of family around, when your kid is sick, and you know something needs doing or fixing, you have to do it yourself,” she said.
“That kind of resilience is just built inside you, you just do it because you just have to.
“Jake was quite an anxious kid before this, He has gone from being a quite anxious 14-year-old to a 15-year-old going on 35. I get my strength from him.”
Jake said he can still remember the first pinch of pain in his hip during a lesson at school in May 2019.
“I remember not being able to cross my legs,“ he said, “and walking home having this soreness like I’d pulled the muscle or something.
“I reckon that’s when it started. “With the treatment I’m on now though I feel better and it is actually helping with my immune system.
“Why I wanted to do this [EnGeneIC] treatment, even though they haven‘t done it on Osteosarcoma patients before, is that they’ve had really good results on other people so we thought let’s try it and it could help more people in the future.”
Nyky said that’s just the type of kid Jake is, thinking not only of himself, but others.
“He is a beautiful kid. He really is, he is a great young man.”
Friends of the family, Bron and Paul Watson, have arranged a two-day Play4Jake fundraising weekend on January 29 and 30, to assist with Jake’s day-to-day personal welfare and to give back to the company, EnGeneIC, which has provided Jake with his new lease of life.
A host of local businesses have linked arms to help out, and there will even be representation from former legends of Jake’s favourite rugby league team, South Sydney, as well as local Australian wheelchair athlete Ryley Batt, making an appearance.
The weekend will include a charity golf day on Friday 29 January at Emerald Downs Golf Club with the support of the legends from the South Sydney Rabbitohs.
Players will have the opportunity to be a part of a ‘legends’ auction where you can bid for your favourite player to join your team of four for golf.
A sold out dinner will follow at Rydges hotel.
A game of wheelchair rugby with Jake playing alongside Ryley is also scheduled to start at 9:30am on Saturday January 30 at the Port Macquarie Indoor Stadium.
In the long term, the Watson‘s hope to establish a foundation in Jake’s name to help fund research into Osteosarcoma.
In the meantime, Nyky said she hopes that through the support of EnGeneIC’s incredible medical intervention, that there may be a small glimmer of hope for Jake’s future.
“But for now I just enjoy every day we have,“ she said.
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