When 15-year-old New South Wales schoolboy Matthew Williams complained to his mum about an earache and sore jaw in July, she brushed it off as swimmer’s ear and thought a dose of antibiotics would do the trick.
But a trip to the dentist and an X-ray would later reveal a more sinister reason behind her son’s pain.
Be the first to know when news breaks. Download our new app
“We looked at the screen and the dentist goes ‘there’s this big black blur’,” Matthew’s mum Jen Williams told news.com.au.
“I said ‘what’s that?’ and she goes, ‘we don’t know’.”
The family were instantly sent to John Hunter Hospital for further investigation after a lesion was spotted on the X-ray.
“I got this sinking feeling in my stomach,” Ms Williams said.
Alongside the boy’s beautiful smile, an aggressive tumour was settling into Matthew’s jawline with the goal of destroying everything in its path.
“I bawled and said (to the doctor), ‘what does this mean’ and he said ‘it could be any type of tumour and they’re rare in boys his age’,” Ms Williams said.
Right then and there, a courageous Matthew hopped onto a chair and kept a brave face while he was poked and prodded with needles as the doctor took a biopsy of the tumour invading his jaw.
“Five o’clock that day we wobbled out of John Hunter Hospital and Matthew goes ‘can I go to the toy shop now’,” Ms Williams said.
“And I was just there crying and said ‘sure’.”
Have a story? Get in touch – rebecca.borg@news.com.au
A shocking diagnosis
A week later the results came back and Matthew was diagnosed with a rare, slow-growing and aggressive tumour known as ameloblastoma.
“It’s tough to watch anyone get that diagnosis, let alone your own son. I’d take the tumour from him if I could,” Ms Williams said.
It’s so rare it accounts for one per cent of all tumours found in the jaw, and is mostly found in adults aged between 30 and 40 years old.
Ms Williams said her son’s doctor had treated just three cases like it in his entire career, with Matthew likely to be his youngest patient with the condition. Fortunately, it’s not cancerous.
The teenager is now bracing for a massive surgery on Tuesday that will see doctors remove a fibula bone from his leg to reconstruct the gaping hole the tumour has indented into his jaw.
“It’s just destroyed all the teeth and it’s eaten out most of his jawbone,” Ms Williams said.
Matthew will require three surgical teams – maxillofacial, vascular and orthopaedic – with the surgery performed under the supervision of oral surgeon Professor Gary Hoffman.
“They have to take about 10cm from the fibular bone because of the size of his tumour, and then reconstruct it into a jawbone that matches the other side of his face,” Ms Williams said.
“They put some titanium metal plates that look like a bike chain from his ear around to his face and they get all the muscles and the blood vessels … and attach it.
“That’s step one.”
The long road to recovery
The doctors said Matthew’s leg and jaw could take six to 12 months to heal, but what will make Matthew’s recovery slightly more difficult is his Autism diagnosis.
As he will have a trachea pipe due to the swelling, he won’t be able to talk and will need to use a communication board to convey his thoughts and feelings to his mum.
“Down the track then we’ll have to do more surgeries as they start putting implants in his jaw and eventually false teeth,” Ms Williams said.
“He loves his steak, he’s going to have to learn to like noodles.”
It’s not known how Matthew developed the tumour, especially given his age, but Ms Williams said her son’s doctor suspected it was because “the enamel and tooth cells had gone rogue”.
“It’s dislodged four or five of his teeth, but it was just this silent thing that started off as an earache,” she said.
The surgery will require Matthew’s family to temporarily relocate from their Port Macquarie home for several weeks, as he undergoes treatment two and a half hours away from home.
Thankfully, Ms Williams and her husband James will stay with Matthew at the Ronald McDonald House for as long as he’s a patient.
But it won’t be enough to cover the costs that come after the surgery nor make up for the work both parents are missing out on while away from home.
“Once we get out of the hospital, we can’t come home to Port Macquarie, we’ve got to spend another three to four weeks in Newcastle for outpatient clinics so we’ve got to stay down there,” Ms Williams said.
“We’ve still got our bills at home and then there’s post-operative care. If you want people to help your son, you’ve got to pay for them.”
The cost of care
Despite his young age, Matthew knows the financial burden such a large surgery will have on his family.
“He was feeling really depressed, he said ‘mum, dad, you can’t afford the mortgage, we’re going to lose the house’,” Ms Williams said.
“He’s worrying about that when he’s got a tumour.”
A GoFundMe has been set up to support Matthew and his family, which has so far raised just over half of its $12,000 goal.
Ms Williams is sharing her son’s story in hope it will educate more doctors about the existence of such a rare condition.
“In the surgery they’re going to document everything because it’s very rare and a few of the doctors up here have said ‘can we teach our people’,” she said.
“I gave them full access to the medical records. There will be another family one day and the more doctors that can learn about it, the better.”
Read related topics:Sydney