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Occupational Therapy gives Jake new skills

Thursday 28 May 2020 in Patient stories

Jake has adapted to new ways of accomplishing tasks during his cancer treatment with the support of Demi Payne, his Occupational Therapist, who has helped the fifteen-year-old increase his independence and add to a growing list of achievements since being diagnosed.

Prior to his diagnosis, Jake ran competitively in long distance races until last September, during the school holidays, when he felt an unusual pain in his leg.  

“He loved to run,” said his mother, Nyky. “But there were no injuries or anything that led to the pain so we couldn’t explain it.”

In July he had competed in a long-distance race on the Gold Coast and also in a King of the Mountain event involving a gruelling 5km run along almost vertical, rugged terrain. Later, in August, he raced competitively in a 10km run in Coffs Harbour, which was all on top of his usual regime of bike rides and practice runs.

Throughout this intense activity there was no indication anything was amiss but when the pain persisted his mother Nyky, who had been a nurse, knew something was wrong and took him for multiple medical visits, which were inconclusive, despite his symptoms getting worse.  

“He came into my room on the morning of the 30 December and said, ‘the back of my thigh feels different, it feels tingly’,” said Nyky who rushed him to the Emergency Department of their local hospital.

Once there, an MRI scan indicated he needed urgent help, and within two hours Jake and his mother were on a flight to The Children’s Hospital at Westmead, where a biopsy revealed he had a form of bone cancer called osteosarcoma, that required harsher chemotherapy than was at first anticipated.

Occupational Therapist, Demi Payne, supports Jake as he acquires mobility skills

It was during their first week in Hospital, at the Cancer Centre for Children, that they met Demi Payne, who was part of Jake’s medical team, to discuss how Occupational Therapy could help.

“Demi took into consideration Jake’s fragile hip, and the need for pain management, and organised a wheelchair and crutches for him,” said Nyky.

“As an outpatient, when Jake was well enough, in between his treatments which were even nastier and more heavy duty than normal chemotherapy ones, Demi saw us in Ronald McDonald House nearby. She arranged for equipment to be delivered there, including a shower chair, and liaised really effectively later to ensure the equipment he needed was at the correct location, either at Westmead or our home.

Demi Payne shows Jake how to make adjustments to the wheelchair

“Jake is now an outpatient and we catch up with Demi whenever we need to. At the moment we’re discussing putting a chairlift in our home, which is double storey, and getting a ramp for outside our front door because it has a little step that it can be difficult getting the wheelchair over, and he may need to use the wheelchair and crutches more than he likes to in order to manage the pain.

“One of the biggest ways Demi has helped is by teaching Jake how to use the equipment and adjusting it to make sure he’s comfortable. She does a lot of problem solving like working out the best way to use a chairlift. 

"She works out cost, function and safety wise which is the best for Jake.”

Jake’s toughness and resilience served him well as a runner, during the harsh treatments, and in his flexibility to adapt to new challenges. With some OT assistance, and his ability to be productive in a variety of creative ways, he can now more easily develop his interests in cooking and art.

“We have an Aboriginal friend who is an amazing artist and taught Jake how to do dot painting, so he’s done a lot of that style of artwork, which hangs on our loungeroom wall. He’s always been very creative. When he’s not resting, due to fatigue from medications, he enjoys gardening and also loves music and spending time on his iPad, like most teenagers, visiting shopping sites.”

Demi’s contribution to Jake's wellbeing shows the benefits of OT of which she says, “As an occupational therapist I focus on supporting babies, children and adolescents to participate fully in the activities of their everyday life.”

Being able to do these types of activities can add benefits such as satisfaction, independence and emotional rewards which can make the ‘everyday’ into something special.


Did you know Occupational Therapists can also provide education and support to schools? Find out more about their varied role here.


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