‘We had to decide where we wanted our baby to die,’ says mum after doctors discover cause of son’s ‘hard tummy’
HEARTBROKEN parents were forced to consider their little son’s death after a bizarre symptom spotted in his tummy turned out to be stage four liver cancer.
Jaxon Barnes, two, suffered from a “hard” tummy just months after he was born, but he was not in any visible pain.
His mum, Hayley, 33, took him to A&E in August 2022, with what she thought was croup – a narrowing of the airways which causes children to cough.
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.
The tot, from Carlisle, Cumbria, was diagnosed with hepatoblastoma, a form of liver cancer that strikes around eight children in the UK each year.
Soon after, doctors put the child on chemotherapy, and his parents were warned he would likely need a liver transplant.
But further tests later showed the cancer had spread to his lung, making him ineligible for the new liver.
After a gruelling course of several different treatments and an op to remove a section of his liver, Jaxon now has no detectable cancer.
His mum, an after-school club assistant, 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.
“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.”
Shock diagnosis
Recalling the ordeal, she admitted she thought Jaxon would be given steroids on his visit to A&E and be sent home.
Instead, he was transferred to the children’s ward and taken for an ultrasound scan.
“He was diagnosed with cancer on that same day,” she added.
“The doctor and nurse came into the room and asked if we could talk. They said it was liver cancer.
“We just felt numb at that point. It’s not something you think you’re going to be told.”
Hepatoblastoma, causes a tumour to form in the cells of the liver and if not caught early enough, cancer can spread to the lungs.
It is often treated by chemo to kill the tumour and stop it from spreading elsewhere in the body. After this, the affected part of the liver is removed during surgery.
The exact cause of hepatoblastoma is unknown, but children at an increased risk of developing cancer include those who have been exposed to hepatitis B or C.
I felt relief, happiness and like I could breathe again
Hayley Barnes
Symptoms depend on the size of the tumour and can include a swollen abdomen, abdominal pain, jaundice skin, fever, nausea and vomiting.
After two weeks at the Royal Victoria Hospital in Newcastle, Jaxon undertook 12 cycles of chemotherapy over the following nine months.
However, his family were devastated when a scan later revealed the disease had spread to his lungs.
The mum 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.”
She added: “The most difficult moment was having to sit in the consultant’s office having a conversation about where you want your son to die.”
In a desperate hunt for alternative treatments, Jaxon’s consultant contacted specialists worldwide.
What are the symptoms of hepatoblastoma in a child?
Hepatoblastoma is a very rare cancer that starts in the liver.
It usually affects children less than 3 years of age.
About half of all children with it are diagnosed before age one.
It usually doesn’t spread to other parts of the body, but in some cases it travels to the lungs.
Symptoms depend on the size of the tumour.
They tend to be different in each child.
They can include:
- Lump (mass) in the belly (abdomen)
- A swollen abdomen
- Pain in the abdomen
- Loss of appetite
- Weight loss
- Feeling tired
- Nausea and vomiting
- Yellow colour to the skin or whites of the eyes (jaundice)
- Fever
- Itchy skin
The symptoms of hepatoblastoma are a lot like those of many other health conditions.
It’s important to take your child to see a healthcare provider if you notice these symptoms. Only a healthcare provider can tell if your child has cancer.
Source: Nationwide Children’s
Road to recovery
It was only then that US medic suggested ICE — a chemotherapy treatment normally used to treat lymphoma.
Studies have shown it to be an effective treatment for hepatoblastoma – with a five-year survival rate of over 70 per cent.
“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.’
He also underwent a major operation to remove part of the liver affected by the tumour at Leeds General Hospital.
A year after his diagnosis, in August 2023, he was then declared cancer-free.
Hayley added: “I felt relief, happiness and like I could breathe again.
“It was just brilliant to be in that situation.”
However, she is careful not to get too excited, as there is a possibility the cancer could return.
“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,” she added.
“Going forward, the big milestone is five years in remission. When we reach 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.”
She added: “Jaxon’s sister, Jessica, seven, went from being an only child to having this baby brother, which was great.
“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 August, the tot has also started to walk and talk and has begun attending nursery.
“We’re unsure of what the future holds for him. I just want him to enjoy life to the absolute max,” she added.