When two-year-old Jaxon Barnes developed a “hard tummy”, his mother took him to the hospital thinking he had a common infection — but it turned out to be something much more sinister.
Hayley Barnes, 33, from Carlisle, a city in Cumbria, in England’s north, noticed the right side of Jaxon’s stomach had become hard in August 2022 but initially the little boy, who was just 11 months old at the time, wasn’t in any pain.
She took him to hospital with what she suspected to be croup — an infection of the voice box and windpipe, common in children. It can make it difficult to breathe and is associated with a distinctive barking cough.
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“I thought he would be given steroids like he normally is and be sent home, but they (doctors) told us that he had to be kept in,” Hayley said.
Blood tests and an ultrasound revealed a mass on Jaxon’s liver. Doctors told Hayley and her partner, Andy, 30, their son had hepatoblastoma — a rare tumour (often cancerous) that forms in the tissues of the liver. It is diagnosed in less than one in one million children.
“They sent us up to the children’s ward and they did an ultrasound on his liver, and before they’d done the ultrasound the doctor came in to speak to me and he called it a mass,” Hayley said.
“No one else had ever called it that before and it was at that point that I realised it wasn’t good.
“He was diagnosed with cancer on that same day. 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 point. It’s not something you think you’re going to be told.”
The next nine months were rough for Jaxon and his family. The little boy underwent 12 cycles of chemotherapy in just 47 days.
Doctors warned he was likely to need a liver transplant but, before he could get on the waiting list, the cancer had spread to his lungs, leading to some heartbreaking conversations for the family.
“Initially, treatment was going well,” Hayley said.
“Then on Boxing Day — four months into his diagnosis — I got a phone call from the consultant to say that Jaxon wouldn’t be on the transplant list.
“Jaxon became unique — being the only one to be having treatment, and then it (cancer) spread while undergoing treatment.
“The most difficult moment was having to sit in the consultant’s office having a conversation about where you want your son to die.”
Running out of answers, doctors reached out to medical experts in the US, who suggested a treatment plan that involved ICE — a new form of chemotherapy thought to be more effective against hepatoblastoma.
“Initially, it worked, and then it started to tear off, and it looked like it wasn’t working,” Hayley said.
News of Jaxon’s condition made it all the way to Holland, where it was discussed at a medical liver conference. Following advice, Jaxon had a section of his liver removed and another round of chemo.
This treatment plan worked and, a year after his initial cancer diagnosis, Jaxon was able to ring the bell and celebrate being cancer-free.
“When he rang the bell to declare he was cancer-free it felt amazing because we were told at one point that he would never do that,” Hayley said.
“We were arranging at one point where we wanted him to die. So to be in that position to see him ring the bell was amazing.
“I felt relief, happiness and like I could breathe again. It was just brilliant to be in that situation.”
Because of thee high amounts of chemotherapy Jaxon has endured, if the disease were to return, specialists warned they would be reluctant to give him more.
“The problem is we couldn’t get too excited,” Hayley said.
“Jaxon’s cancer is rare and, because of everything that he’s been through, there is more than a 50 per cent chance that it will come back.
“Going forward, the big milestone is to get the five years in remission.”
Since going into remission, Jaxon has started to walk and now goes to nursery.
“Since treatment’s finished, and he’s in remission, he’s been to soft play and the trampoline park quite a few times,” Hayley said.
“We’re unsure of what the future holds for him. I just want him to enjoy life to the absolute max, you know.”
