Boy, 2, comes through 'year of hell' to beat incredibly rare cancer

Exactly a year to the day that he was diagnosed, Jaxon Barnes rang the bell to tell the world he was cancer free.

In August last year, the family of Jaxon Barnes had their world ‘turned upside down’, after he was diagnosed with an incredibly rare form of cancer.

In August 2022, Jaxon’s mum Hayley took him to A&E as he had croup. He also had a hard stomach; however, he did not seem to be having any symptoms of stomach problems.

After being examined by a doctor at A&E, Jaxon was sent for an ultrasound and blood tests where it emerged that he had liver cancer.

Jaxon was taken to Newcastle where parents Hayley and Andy had a diagnosis meeting in which they were told Jaxon had stage 4 Hepatoblastoma and would immediately need to start chemotherapy the following day.

Because Jaxon’s cancer was so rare, his oncology consultant, Gail Halliday, got in contact with specialists from all over the world to see if anyone else could offer treatment that the UK did not.

The family with Dr Gail Halliday who 'saved Jaxon's life' according to the family (Image: Supplied)Doctors in America recommended one more type of chemotherapy they could try – ICE chemo.

This type of chemo was supposed to work more effectively on Jaxon’s type of cancer and after a while Hayley and Andy were told that Jaxon’s AFP levels had come down, indicating that the chemo was working.

After his case was discussed at an international conference, Jaxon had a section of his liver removed in Leeds and after one more round of chemo, his liver function tests came back as normal, and Jaxon was officially classed as in remission.

Although there is a high chance his cancer will return, exactly a year to the day he was diagnosed, Jaxon rang the bell to celebrate finishing his treatment.

“The whole year has been horrendous,” said Jaxon’s mum, Hayley Barnes.

“I took him to hospital with croup and to be told the same day that he had cancer at just 11 months old was awful. You just don't want to ever be in that situation.

“We were having conversations with the surgeon about our son not being able to see his second birthday and it really wasn't nice.

“There is a high risk of the cancer coming back and because he's had so much chemotherapy - over the normal amount that they would normally give – so if the cancer was to come back then there would be a question whether they would offer him any more treatment or if it would just be palliative care, but at the moment he's living like a normal toddler.

"The team at the RVI have been outstanding throughout, as have the Rainbow Trust and Young Lives vs Cancer."

Jaxon’s heroic battle against cancer has had an affect on the whole family, including his grandad, Dereck ‘Barnie’ Barnes.

“I'm an ex-doorman and ex-army, and I'd rather take six lads on with a baseball bat than see my grandson like that,” said Dereck.

“I thought I'd lost him, simple as, and I never thought we’d get to where we are now.

“It's the uncertainty that’s the worst. It's hard enough for somebody in their 30s and 40s to have cancer, but Jaxon spent his first birthday in the RVI in Newcastle.

“Jaxon has never seen anything, never done anything and I think that was the hardest thing to bear.

“My dad died of cancer when he was 48 and that was bad enough, but at least my dad had seen 48 years, Jaxson had never seen nothing yet.

“But now we’re through the worst of it hopefully. I wake up every day and it's just a different world to me now.

“Since this has all happened, I’ve seen that the world isn’t as nasty as I thought it was and there’s a lot of lovely people out there.

“My neighbours have been absolutely outstanding and the nurses, doctors, charities like the Rainbow Trust don’t do it for the money.”

Jaxon will now continue to have regular CT and MRI scans to monitor his condition going forward.