Little boy’s hard tummy turned out to be a sign of liver cancer
When Jaxon Barnes developed a "hard tummy" his mum took him to hospital thinking he was suffering from croup, but it turned out to be a sign of stage four liver cancer.
Hayley Barnes, 33, an after-school club assistant, from Carlisle, Cumbria, initially noticed the right side of her son's stomach was hard in August 2022, but he wasn't in any pain.
She took him to A&E with suspected croup - a narrowing of the airways which causes children to make a coughing sound like a seal.
But an ultrasound and blood tests revealed a mass on Jaxon's liver, and shortly afterwards Hayley and her partner, Andy, 30 were told their son, then 11 months, had hepatoblastoma - a rare cancer that forms in the tissues of the liver and affects fewer than one in a million children.
Hayley initially didn't think Jaxon's condition was serious when she took him to be checked out.
"I thought he would be given steroids like he normally is and be sent home but they told us that he had to be kept in," she says of the moment.
"They sent us up to the children's ward and did an ultrasound on his liver but beforehand the doctor came in to speak to me and he called it a mass.
"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 and said it's liver cancer.
"We just felt numb at that point. It's not something you think you're going to be told."
Over the next nine months following his diagnosis, Jaxon underwent 12 cycles of chemotherapy over a period of 47 days.
Doctors also warned he was likely to need a liver transplant but before he could be listed it was revealed the cancer had spread to Jaxon's lung.
"Initially treatment was going well," Hayley explains. "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 as the cancer had spread.
"Jaxon became unique - being the only one whose cancer had spread while undergoing treatment."
The update led to the family having to have some heartbreaking discussions.
"The most difficult moment was having to sit in the consultant's office having a conversation about where you want your son to die," Hayley says.
Due to the rare nature of the cancer, Jaxon's consultant contacted specialists across the world in search of alternate treatments.
Doctors in the US suggested a treatment plan that involved ICE - a new form of chemotherapy which is thought to be more effective in hepatoblastoma cases.
"Initially it worked and then it started to tail off and it looked like it wasn't working," Hayley continues.
After his case was discussed at a medical liver conference in Holland, Jaxon had a section of his liver removed in an operation and another round of chemotherapy.
The treatment proved successful and a year after his diagnosis, in August last year, Jaxon was able to ring the bell to celebrate being cancer-free.
"It felt amazing because we were told at one point that he would never do that," Hayley says of the milestone moment.
"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 incredible.
"I felt relief, happiness and like I could breathe again," she adds.
Although there is a chance his cancer could return, the family are relieved Jaxon has a second chance at life, but due to the heavy amounts of chemotherapy he has undergone, if the disease were to come back, specialists have warned they would be reluctant to give him more.
"We couldn't get too excited," Hayley says. "Jaxon's cancer is rare and there is more than a 50% chance that it will come back.
"Going forward the big milestone is to get to him being five years in remission, which is when he's officially classed as cured."
Since going into remission, Jaxon, now two, has begun to walk and talk and has started going to nursery.
"He had never even gone to soft play before," Hayley says of her son's new life.
"Since treatment's finished and he's in remission he's been in soft play and the trampoline park quite a few times.
"We're unsure of what the future holds for him. I just want him to enjoy life to the absolute max," she adds.
Additional reporting SWNS.
Real life: Read more
Mum who found lump while breastfeeding told she may not be alive in five years (Yahoo Life UK, 4-min read)
Dad shares how he delivered his baby on living room carpet (Yahoo Life UK, 4-min read)
What I've learned from having my first child at 23 and my second at 40 (Yahoo Life UK, 9-min read)
