A toddler who was given little hope of survival after being diagnosed with an extremely rare liver cancer has beaten the disease.
Jaxon Barnes, two, suffered from a ‘hard’ stomach just months after being born, but he had no pain.
He was taken to the emergency room for another reason in August 2022, leading doctors to discover a ‘mass’ in his liver.
Jaxon was diagnosed with hepatoblastoma, a form of liver cancer that affects approximately one in 750,000 children.
Jaxon, from Carlisle, Cumbria, immediately started chemotherapy and was warned he would likely need a liver transplant.
Jaxon Barnes, now two years old, developed a hard stomach within months of his birth. Despite not being in any pain, his worried mother, Hayley, took him to A&E in August 2022 because she suspected he had croup – a narrowing of the airways that causes children to make a coughing sound like a seal.
But scans found a ‘mass’ in his liver and he was diagnosed with hepatoblastoma, a form of liver cancer that affects around two million children worldwide. Jaxon, from Carlisle, Cumbria, immediately started chemotherapy and was warned he would likely need a liver transplant
In search of alternative treatments, Jaxon’s consultant contacted specialists from around the world, she said. Only then did American doctors propose ICE – a chemotherapy treatment normally used to treat lymphoma. Studies have shown it to be an effective treatment for hepatoblastoma, with five- and 10-year survival rates of up to 60 percent. Pictured is Jaxon with his sister Jessica, 7
Tests later showed that the cancer had spread to his lungs.
After grueling treatment and surgery to remove part of his liver, Jaxon now has no detectable cancer.
His mother, Hayley Barnes, 33, an after-school club assistant, said: ‘When he rang the bell to announce he was cancer-free it felt amazing because at one point we were told he would never do that.
‘At one point we agreed that we wanted him to die.
“So it was great to be in that position to see him ring the bell.”
Recalling the ordeal, she admitted that she thought Jaxon would be given steroids during his emergency room visit and sent home.
Instead, he was transferred to the pediatric ward and taken for an ultrasound.
“He was diagnosed with cancer that same day,” she added.
‘The doctor and nurse came into the room and asked if we could talk. They said it’s liver cancer.
“We just felt numb at that moment. It’s not something you think you’re going to be told. I just stepped in and asked, “When do we start treatment?”
Hepatoblastoma, which forms in the tissues of the liver, is often treated first with chemo to shrink the tumor and prevent it from spreading.
An operation will follow to remove it.
The exact cause of hepatoblastoma is unknown, but children are at greater risk if they were born prematurely, have hemihypertrophy – when one side of the body grows faster than the other – or have Beckwith-Wiedemann syndrome, also called an overgrowth syndrome named.
Symptoms depend on the size of the tumor and may include a swollen abdomen, abdominal pain, jaundice, fever, nausea and vomiting.
After two weeks at the Royal Victoria Hospital in Newcastle, Jaxon underwent twelve cycles of chemotherapy over the next nine months.
However, his family were devastated when a scan showed the cancer had spread to his lungs.
Mrs Barnes said: ‘Initially the treatment went well.
‘Then on Boxing Day – four months after his diagnosis – I received a call from the consultant to say that Jaxon would not be on the transplant list.’
She added: ‘The hardest moment was having to sit in the consultant’s office and talk about where you want your son to die.’
In search of alternative treatments, Jaxon’s advisor contacted specialists from all over the world.
Only then did American doctors propose ICE – a chemotherapy treatment normally used to treat lymphoma.
Research has shown that it is an effective treatment hepatoblastoma, with five- and ten-year survival rates of up to 60 percent.
Mrs Barnes said: ‘At first it worked, but then it started to tear off and it looked like it wasn’t working.
“Then we had some difficult conversations, but then things started working again.”
He also underwent surgery to remove part of his liver at Leeds General Hospital. A year after his diagnosis, in August 2023, he was subsequently declared cancer-free.
She added: ‘I felt relief, happiness and like I could breathe again. It was just brilliant to be in that situation.”
Jaxon also underwent surgery to remove part of his liver. A year after his diagnosis, in August 2023, he was subsequently declared cancer-free. Pictured is Jaxon Barnes, 2, after a life-saving liver resection at Leeds General Hospital
However, she noted, “Jaxon’s cancer is rare, and because of everything he has been through, there is more than a 50 percent chance that the cancer will come back.
‘In the future, the big milestone is achieving five years in remission. Once we are in remission for five years, he is officially considered cured.
‘My whole perception of life has completely changed.
‘I don’t care what anyone else thinks. It just doesn’t matter. What matters are my children.
“Jaxon’s sister, Jessica, seven, went from an only child to an obvious little brother, which was amazing.
‘She has always wanted a brother or sister. Then to put that into action, because we spent more or less a whole year with him in the hospital, was difficult.”
Since August he has also started walking and talking and goes to daycare.
‘We’re not sure what the future holds for him. I just want him to enjoy life to the fullest,” she added.