Jett Arentz is just five years old but has undergone five surgeries in just over a year.
- A tumour doctors called “inoperable” was “debulked” on Jett Arentz’s brain in several surgeries last year
- During COVID-19 restrictions, Cerebral Palsy Alliance in Canberra was able to offer Jett telehealth therapy
- Physiotherapist Claire Smart says it is vital that children maintain physical rehabilitation to avoid any “regression”
His mother and father say they “would not want a single person to go through” what Jett has had to.
The Canberra family’s world came crashing down when a tumour doctors called “inoperable” was discovered on Jett’s brain in January last year.
“To be presented with something like that, it was so out of the blue,” Jett’s mother, Crystal Arentz, said.
Doctors said the mass was a great threat to Jett’s life, so the little boy began chemotherapy right away.
But by March, Jett’s health had become critical and surgeons had no choice but to operate on the supposedly inoperable tumour.
“They had to do brain surgery,” Jett’s father, Peter Arentz, said.
But even more devastating for the family, he said, was that Jett had to go under the knife again just two months later, after doctors found a cyst on the tumour.
Mr Arentz said the growth “came back angrier and angrier each time they touched it”.
“He also had emergency surgery in June because the pressure was getting too great,” Jett’s father said.
“Then, in July, [doctors] decided to go in and debulk some of the tumour.”
Mr Arentz said the risky but essential surgery left Jett with brain damage.
He lost the use of one eye and has had to work hard to regain coordination and movement while having regular and intense chemotherapy.
‘It’ll brighten his day, and it really is amazing’
Jett had started rehabilitation at the Cerebral Palsy Alliance in Canberra, a non-profit that provides services to people with disability and their families, when COVID-19 hit.
His parents feared the therapy might be cancelled due to physical distancing restrictions.
“He’s supposed to start school in January next year. If we had to stop therapy for three or six months now, that would have consequences.”
But Jett’s sessions with CPA “seamlessly” went online, his parents said.
Despite initial doubts over the efficacy of telehealth for a child with disabilities familiar with hands-on intervention, Jett has learned to pedal a bike with his physiotherapist guiding him over a screen.
His parents said it was remarkable because, not long ago, Jett was unable to walk from his bedroom to their room if he was upset during the night.
Mrs Arentz said her son’s upbeat attitude throughout the ordeal had been astounding.
Mrs Arentz said after Jett’s marathon chemotherapy, which he undergoes every six hours from Friday to Monday evening, all he asked for was a $2.95 lime-scented cake of supermarket soap and a trip through the car wash.
“Life can be broken down into really basic, simple things,” Mrs Arentz said.
“He’ll get a card in the mail and that will be just amazing for him. It’ll brighten his day, and it really is amazing.
“And that’s what you appreciate, because you just don’t know when you could lose it — and not necessarily lose it, like we could lose Jett — but what [ability] he’s got.”
“At one point, he lost the entire use of his left arm and left leg,” Mr Arentz added.
“He needed a wheelchair to get around, but he taught himself to play the PlayStation with one hand.”
Vital that children do not have gap or regression
Claire Smart calls herself one of Jett’s mates.
She has also been his physiotherapist at CPA throughout his rehabilitation.
“Cerebral palsy is an umbrella term for a variety of disabilities,” Ms Smart said, including “any brain injury under the age of two, usually associated with motor impairment.”
Secondary impairments could include cognitive difficulties, fine motor skills, self-care, participation, “and things an everyday kid could take for granted,” she said.
The Canberra-born physio said the pandemic had been frightening because it was vital that children did not have “a gap or any regression in their skills”.
She initially wondered how on earth she would engage children if she was not there in person, especially the very little clients; and knew that change could be scary for people with a disability.
But in using telehealth, the only limitation had been been “our creativity,” Ms Smart said.
“All the therapists have been sharing dress-up ideas, online timers, games. We roll up socks into a ball and play soccer, or 10-pin bowling with empty drink bottles,” she said.
Ms Smart said therapists were using telehealth for a range of ages, from “four months to over 60 … and people with such a variety of disabilities. It’s never dull.”
Mrs Arentz said therapists had done “a marvellous job to engage” Jett.
“They make it really fun … He doesn’t realise he is actually getting physiotherapy, occupational therapy and speech therapy,” she said.
And she said the family would likely continue to use telehealth, even after restrictions due to coronavirus had been removed.
“For example, this week, when we were in hospital, we had speech and OT sessions [via telehealth] … going back a few months, we would’ve had to cancel appointments,” she said.
“It just provides us with so many more options.”