Family of Cumbrian boy, 2, with rare cancer describe their journey

Jaxon Barnes, 2, was taken to hospital after his mother noticed that he had a hard stomach in August 2022.

The right side of Jaxon's stomach was hard but the tot wasn't in any pain.

His mum, Hayley, 33, took him to A&E with suspected croup - a narrowing of the airways which causes children make a coughing sound like a seal.

After doing ultrasounds and blood tests, Hayley and her partner, Andy, 30, a key account manager, were told Jaxon had a "mass" in his liver.

Shortly after, Jaxon, then 11 months, was diagnosed with hepatoblastoma - a cancer that forms in the tissues of the liver - which affects fewer than one in a million children.

He had three different types of chemotherapy and a radical liver resection and Jaxon is now in remission after being declared cancer-free in august last year.

Jaxon has now started to walk and talk and has started going to nursery.

Hayley, an after-school club assistant, from Carlisle, said: "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.

Baby Jaxon in hospital after his operation (Image: SWNS)

"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.

Hayley initially didn't think Jaxon's condition was too serious when she took him to A&E to be checked out.

She said: "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.

"They sent us up to the children's ward and they did an ultrasound on his liver and before they'd done the ultra sound 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. 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. My just kicked in and asked 'when do we start treatment?'"

After receiving his diagnosis, Jaxon was sent to the at the Royal Victoria Hospital, Newcastle, Tyne and Wear, where there was a pediatric cancer ward.

Baby Jaxon and his sister (Image: SWNS)

He stayed there for two weeks, and over the following nine months had 12 cycles of chemotherapy over 47 days.

Doctors also warned he was likely to need a liver transplant and he was ready to be listed, before he was struck off the list as the cancer had spread to his lung.

Hayley said: "Initially treatment was going well.

"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."

The family have described their journey following Jaxon's diagnosis (Image: SWNS)

The cancer had spread to his lungs - a phenomenon that the family say they were told had never occurred before at that stage in anyone at all.

Hayley said: "Jaxon became unique - being the only one to be having treatment and then it 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."

Due to the rare nature of the cancer, Jaxon's consultant contacted specialists across to world in search of alternate treatments.

It was then that doctors in the US suggested a treatment plan that involved ICE - a new form of chemotherapy which is thought to be more effective on hepatoblastoma.

Hayley said: "Initially it worked and then it started to tear off and it looked like it wasn't working.

"Then at that point, we had some difficult conversations but then it started to work again."

Jaxon in hospital (Image: SWNS)

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 the tot was able to ring the bell to celebrate being declared cancer-free.

"I felt relief, happiness and like I could breathe again", said his mum. "It was just brilliant to be in that situation."

Although there is a chance his cancer could return, the family were relieved Jaxon had a second chance of life.

Due to the heavy amounts of chemotherapy he has endured, if the disease were to return, specialists warned they would be reluctant to give him more.

Hayley said: "The problem is we couldn't get too excited.

"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. When we get to five years in remission, he's officially classed as cured.

"My whole perception of life has completely changed.

"I don't care about what anyone else thinks. It just doesn't matter. What matters is my kids.

"It is a very isolating disease because of how rare the type of cancer is.

"I think if I could have contacted somebody else who was going through a similar thing at the time, then it would have made me feel a little bit more reassured."

"Jaxon's sister, Jessica, seven, went from being an only child to then obviously having this baby brother, which was great.

The family celebrate 'ringing the bell' (Image: SWNS)

"She's always wanted a little brother or sister.

"To then have that taken away in effect because we spent more or less a full year in hospital with him was hard."

Since going into remission, Jaxon has started to walk and talk and has started going to nursery.

Hayley said: "He had never even gone to soft play.

"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, you know."