Rare blood cancer claims the life of ‘Island Child’ Benji
Living a peaceful and idyllic life on tropical Christmas Island, the Kentwell family could never have anticipated the pain blood cancer could bring to their lives.
The family’s youngest child, Benji, was diagnosed in October 2020 just a couple of months before his second birthday.
“We were in Perth during the school holidays,” explained Benji’s mum, Sarah.
“Towards the end of our trip I noticed a strange purple bruise at the base of his middle finger – I have three children and had never seen a bruise like that before.”
Before flying back home, Sarah decided to take Benji to the doctor, who sent him for a blood test.
“By 6pm we received a call to come back in and by midnight we were admitted to the oncology ward at Perth Children’s Hospital,” she explained.
“It was a complete shock; he wasn’t even sick and didn’t have any other symptoms or signs.
“Later we were told his platelet count was so low, and that if we’d just flown back to Christmas Island as planned, it might have killed him.
“We realised later just how lucky we were to be on the mainland not and medically air-lifted from the island, as it would’ve been highly likely that our family would’ve have been torn apart like many remote or regional families.”
While Benji was too young to understand blood cancer, when talking to his older sisters, Lara, aged 3, and six-year-old Eliza, Sarah, decided to be open and honest.
“Because his chances of survival weren’t high, around 30 per cent, we decided to tell them the truth and when Eliza asked if he might die, we answered ‘yes’,” said Sarah.
“To have to say that to a five-year-old about her two-year-old brother was heartbreaking.”
Benji had a very rare type of blood cancer called acute megakaryoblastic leukaemia (AMKL).
He started treatment immediately on the MyeChild 01 treatment protocol, an international clinical trial investigating a new chemotherapy approach.
“This treatment didn’t work and when a second round of chemotherapy didn’t put him into remission, his AMKL was classified as ‘high risk’,” explained Sarah.
“This meant Benji would need a bone marrow transplant.”
Unfortunately, his two older sisters were not a donor match and no unrelated matches could be found on the Australian Bone Marrow Registry.
Due to the COVID-19 pandemic causing delays, there was no time for an international search and so Benji’s dad, Steve, started the process to check his suitability for an haploidentical transplant.
This is a ‘half-matched’ transplant, which means a parent or child can be suitable donor.
“During this time Benji developed a respiratory infection which landed him in intensive care,” said Sarah.
“After he recovered, they tried a couple of experimental treatments, but they were ultimately unsuccessful.
“While his body tolerated the high doses of chemo, the blood cancer was too aggressive, and he never once achieved remission.”
On paper, Benji was the child on the ward at highest risk, but Sarah said you never would have known.
“He was always first-bumping and high-fiving his doctors and nurses, blowing kisses to them through the window of his room and loved to help with his medications,” she said. “His hair never even fell out.
“His blood cancer confounded his oncologists and they consulted worldwide with experts to no avail.”
In late January, the family were told there were no further active treatment options available for Benji.
“We were hoping we would have a couple of good weeks with him but it was only five days,” said Sarah.
“We were finally able to let the girls, family and friends into his room to play, cuddle, laugh, cry and say their final goodbyes.
“He took his last breath in his dad’s arms at 8pm on Tuesday, 26 January 2021. He was two years and two months old, and it was only three months since he had been diagnosed.”
After returning home to Christmas Island the family are taking every day as it comes with Sarah and Steve returning to work and the girls starting back at school.
Benji’s death has had a big effect on the small island community.
“Everyone here knew Benji as the happiest, most chilled little boy imaginable and then suddenly he wasn’t here anymore,” said Sarah.
“The community’s been an amazing source of support, both financially and emotionally, and are helping to make sure Benji’s legacy is kept alive here.
“I also can’t speak highly enough of our friends down in Perth and especially Steve’s employer who allowed him to stay working down here and supported us during Benji’s treatment.”
Finding a “grief routine” has also been helpful for Sarah.
“On the monthly anniversaries we try and do something like go to one of Benji’s favourite places on the island, and every Friday I pick frangipanis and light a candle for him,” said Sarah.
“Knowing Friday morning is my grief time means I can get through the other days knowing I have some special time I dedicate to Benji each week.
“I’ve spoken to a grief counsellor at the Leukaemia Foundation, which has been really helpful and a great source of support.
“Speaking to other bereaved parents, some several years into their journey, some in a similar stage to us, has also been invaluable.”
The family will participate in the Leukaemia Foundation’s Light the Night event this year, which falls on the same day Benji was diagnosed in 2020.
“Being able to participate and give back what we can is helpful as it shows us we aren’t alone, there are so many other families that have also been impacted by blood cancer,” said Sarah.
“Even the good days are tinged with sadness that Benji isn’t here doing these things with us.
“Somehow you begin to function again, but nothing ever feels the same. I’ll never stop grieving for Benji.”
Need to talk? We encourage you to care for your own mental health and wellbeing by calling 1800 620 420 to speak with a Blood Cancer Support Coordinator.
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