Source : Perth Now news
With 100 days to go until Telethon, there’s another highly-anticipated countdown being looked forward to by five-year-old Ava O’Kelly.
In just eight days, Ava will ring the bell at Perth Children’s Hospital — a tradition reserved for patients who are officially cancer free.
“We can see some light at the end of the tunnel,” mum Lucy O’Kelly said.
It’s been little more than two years since Ava was diagnosed with an aggressive blood cancer in May 2024, the shock of a lifetime for parents Lucy and Liam O’Kelly.
Ava had just turned three, and her younger twin brothers, Harvey and Harry, were only 12 months old.
There were no obvious signs that the toddler was gravely ill aside from a pale complexion and complaints of sore legs.
A trip to the GP didn’t quell Ms O’Kelly’s concerns — even though Ava was given a clean bill of health — so she insisted on a blood test.
“I knew something was wrong, she just wasn’t herself,” she said.
Just hours after Ava’s blood was taken, the family received an alarming call, urging them to immediately get their daughter to PCH.
It was there in the emergency department that doctors delivered the devastating news: Ava had acute lymphoblastic leukaemia.
“Our whole world just got flipped upside down in an instant,” Ms O’Kelly said.
The aggressive, fast-growing cancer attacks the blood and bone marrow. It has a 90 per cent survival rate, but beating it often takes years of intense treatment with awful side effects.
Time spent playing outside or being together as a family at home was quickly replaced with anxiety-inducing appointments and invasive medical procedures.
“Being thrown into the world of childhood cancer overnight isn’t something that you ever expect,” Ms O’Kelly said.
The stunned parents were told their daughter needed to start treatment straight away.
“She had to have surgery and theatre days, bone marrow aspirations, lumbar punctures,” Ms O’Kelly said. “It was a lot of news really quickly . . . just utterly heartbreaking for us as a family.”
One of the last things on their minds was logistics, but it presented a major challenge nonetheless.
The family lives in Port Kennedy, just south of Rockingham. On a good day, it’s between 50 minutes and an hour’s drive to PCH in Nedlands. In peak hour traffic, it easily becomes a nightmarish two-hour slog.
Mr O’Kelly initially drove between the family home and the hospital during Ava’s treatment, enlisting their grandparents’ help to look after the twins.
Ms O’Kelly remained at her daughter’s bedside as she endured a gruelling 12-month chemotherapy regime.
It was excruciating for the family, and the added commute made it all the more painful.
When Ava started her first cycle of immunotherapy, doctors wanted her to stay in hospital for a few nights to monitor for any reactions.
“I was really concerned for what would happen, because the list of side effects is enormous, and my brain went into a bit of a spiral,” Ms O’Kelly admitted.
“That’s when someone, I think our social worker, mentioned the Sony Foundation can put Liam up in a hotel for the night.”
A Telethon beneficiary since 2020, the foundation provides free, uncapped accommodation at Quest Apartment Hotels for cancer patients and their families for families who must travel to Perth for their child’s care.
The individual units allow family members to stay close while limiting contact with others to reduce infection risk. Treatment like Ava’s often wreaks havoc on the immune system, meaning a simple cold could have fatal consequences.
“Knowing he (Liam) was not going to be two hours away, that made the world of difference for us,” Ms O’Kelly said.
Just hours later, they faced the most terrifying night of their lives as parents.
It was 3am. Ava was asleep, immunotherapy being pumped into her tiny body via IV, when a dreadful reaction jolted her awake.
“I had to scream for help, and doctors and nurses came running in,” Ms O’Kelly said.
The petrified mother quickly called her husband, who rushed over.
“The fact that he was there in 10 minutes, rather than two hours, and we were able to make these huge decisions together was just invaluable,” she said.
They’ve since used the accommodation another three times.
The You Can Stay program first launched in 2020 for patients aged 15-29. A Telethon grant in 2024 expanded the program to paediatric patients aged 0-14.
It’s supported 28 WA families with close to 3000 nights of free accommodation.
The Sony Foundation is one of 147 Telethon beneficiaries the number of nights a family can stay.
The Sony Foundation is one of 147 beneficiaries receiving receiving support through Telethon 2026. By donating during the Telethon weekend on 17 and 18 October, you will help fund vital programs such as You Can Stay, ensuring regional families can remain close to their child while undergoing cancer treatment.
