Aussie boy’s life-saving transplant now threatens to kill him
Nicholas was diagnosed in June with a quick-spreading and 'late stage' post-transplant cancer.
A Sydney mum has shared her heartbreak after discovering her young son’s life-saving liver transplant at just six months old has now left him riddled with a “rare and very aggressive” cancer.
Nicholas was a newborn when he was diagnosed with biliary atresia — a childhood disease of the liver that blocks bile ducts — and he spent months being kept alive by machines in ICU before finally undergoing the surgery.
Sadly, in the years since, the now six-year-old has suffered numerous complications, resulting in over 100 hospitalisations and multiple blood tests and surgeries.
However the young boy’s life was once again turned upside down in mid-June when he was diagnosed with a quick-spreading and “late stage” post transplant cancer, his mum Elena Reed told Yahoo News Australia on Tuesday.
“Lately he has been doing really well. We hadn’t been to the hospital for almost a year. This cancer diagnosis came totally out of the blue,” she explained. “It’s everywhere now — it’s spread in his stomach, in his intestines, all the way up to his shoulders and lungs as well — it’s the worst type of lymphoma.”
'I cry every day'
The heartbroken single mum of three boys all under 10 said Nicholas had only complained of a “sore tummy” the week before, so the devastating news came as a huge shock.
“I was blaming myself thinking that I had missed it, but I hadn’t missed any scheduled appointments,” Ms Reed said, describing the situation as “very difficult”.
“He’s such a deep soul,” the 45-year-old said of her middle son, who has had an emotional week after his hair started to fall out from the chemotherapy. “He was so looking forward to school holidays.”
Nicholas is expected to undergo at least two years of treatment, including radiation, “if he makes it through”, his mum said. “There’s hope but there’s also complications and a lot of possibilities that the situation can go. I cry every day.”
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Mum's financial stress
Ms Reed — who previously helped raise almost $200,000 for a Fibroscan Transient Elastography, which monitors the health of children who have liver disease or have had a liver transplant, at The Children’s Hospital at Westmead — said for now she is “just surviving”.
With no family support, the Sydneysider has NDIS support workers care for her other two sons while she is in hospital with Nicholas, but says she has tapped out her allocated budget. Friends have created a GoFundMe for Ms Reed to help her deal with her financial stress.
“Without this help we would never be able to see the other side,” she said, adding that she has placed inspirational quotes around her son’s hospital bed to keep her strong for him.
Nicholas’s dream is to travel to Singapore one day so Ms Reed has promised she will take him if he “just gets better”. “I would so much like to keep my word.”
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