Christmas Island’s Kentwell family stranded in Perth after son Benji’s shock cancer diagnosis

Like for most parents, the discovery of a bruise on their one-year-old’s hand should have been no cause for alarm for Sarah and Stephen Kentwell. Little Benji liked to play, was active and, like many his age, easily excited. Plus, he and his sisters had just been to Perth Zoo and the Aquarium of WA — a holiday treat for the family of five who were visiting the capital city from their home on Christmas Island. Now, more than six weeks after they first spotted the small dark mark on the base of Benji’s finger, the Kentwells are living a nightmare they cannot escape. They haven’t been able to go back to their island home to see their friends, go to work or even just bring back some fresh clothes. Instead, the Kentwells have been living at the Ronald McDonald house with their three-year-old and five-year-old daughters, while Benji lies in a hospital bed. Their last hope is a bone marrow transplant — a treatment option that could save little Benji’s life. But with COVID-19 requiring the quarantine of any potential matches from overseas on either side of transport, the pool of potential donors is considerably smaller. “It’s not an option for us. Benji doesn’t have enough time for us to find a 100 per cent match and then have that frozen, couriered and quarantined,” Mrs Kentwell said. “And people aren’t able to travel internationally to have their cells harvested. “It’s impossible. So we haven’t been able to find a donor.” Benji has acute megakaryoblastic leukaemia — a rare and extremely aggressive form of the disease. His shock diagnosis came on October 16, midway through his family’s holiday in Perth, when his parents took him to a local GP “just to be safe”. “We had a blood test at 4.30pm, and then by 6.10pm we had a call telling us ‘you need to come back now’,” Mr Kentwell, 33, said. When they were told little Benji needed to go to oncology at Perth Children’s Hospital, “it was just instant tears”, the father-of-three said. Because Perth is not where they live, and due to the COVID-19 pandemic, the Kentwells have had it tougher than most. “It’s very rare all of us have a meal together,” Mr Kentwell said. “We’re normally a family of five but since this started, the family’s been split. One parent's been in hospital every night with Benji and the other has been with our two girls.” Originally given a 50 per cent chance of success, Benji’s first round of chemotherapy failed. Within a few days his leukaemia was back — a new, higher dose chemo treatment was his next best option, for which he was given a 30 per cent chance of survival. The five-day treatment ended just two days before Benji’s second birthday. “His sisters made a big deal for him. It made his eyes light up, which was amazing to see,” Mr Kentwell said. “We tried to make it as positive a vibe in his hospital room as we could.” But it was hard. Benji is inside a positive pressure room to reduce his risk of infection, meaning the Kentwells couldn’t all be in there at once. Mr Kentwell said telling his daughters that “things weren’t going to plan” was hard. “Her (Eliza’s) first words were ‘is Benji going to die?’,” he said. “I had no words. It was heartbreaking.” Benji is in constant paint. When it gets really bad his parents know because he “hunches up, grimaces, and his eyes roll back in his head”. But still his little face breaks into a giant smile when his nurses come in. “He’s so happy and helpful. He sticks his arm out when they need it, he waves the nurses goodbye. He’s a star,” Mrs Kentwell said. “Sometimes you ask yourself ‘how can this little boy be so sick?’. “It’s hard to be sad when he’s happy.” Mrs Kentwell said the support from the Christmas Island community, close friends in Perth, as well as the “flexibility and emotional support” from Mr Kentwell’s employer had been “phenomenal”. “We’ve had a lot of generous people that have organised bags and sent clothes across for the girls. And we’ve been very lucky to have some incredible friends who’ve been helping us here in Perth,” she said. Mrs Kentwell urged people to either continue donating blood or start, admitting she had never fully grasped how important it was until Benji fell ill. “We're in debt to everyone who gives blood,” she said. “But I know, in the next few months, he’s only going to need more. So please, please keep giving blood.” More than $20,000 has been raised for the Kentwells since October. Visit their fundraiser to help.