A 30-year-old father has been given just a year to live – after bungling doctors missed the signs of his brain tumour for three years.
Leo Jones, from Porthcawl, South Wales, repeatedly sought help for his headaches which left him in agony and bed bound for days.
The unbearable pain even put strain on his marriage to Kimberley, 29, who said she could no longer cope with his constant mood swings and worried he no longer loved her.
Despite repeated visits to GP surgeries, doctors continually missed the signs of a deadly mass on his brain – and it was only when a private consultant noticed a tumour that he was finally diagnosed.
Mr Jones was told if he had left it for a couple more days before seeking help and starting gruelling treatment, he would have been dead.
Now his heartbroken family, who always suspected it to be a tumour, have been told Mr Jones, a father-of-two may just have a year left as his condition is terminal.
Leo Jones, from Porthcawl, South Wales, repeatedly sought help for his headaches which left him banging his head against the wall in agony
Mrs Jones said: ‘I was so shocked. I had wondered about it being a tumour, but I just thought the doctors would have found that, so had ruled it out.
‘Now they told us that if we had left it for a couple more days, he would have been dead.’
She added: ‘When we found out, we were devastated. It’s just horrendous, as his wife, seeing him go through this and it’s heartbreaking for the kids.
‘Our son, Noah, asked me if daddy was going to the stars. He shouldn’t even know to ask that. We were in the park and we saw a woman take some sort of painkillers.
‘He asked her if that was her chemotherapy and told her his dad has chemo. They shouldn’t know this kind of stuff, but they overhear people talking.
‘The children come up and lie with Leo, even if he’s in bed for days and tell him stories.
‘Sometimes, it’s like he’s not my Leo any more. He’s still there but he’s fading and it’s very difficult to see.’
Mr Jones’ headaches began in 2013, just before his son Noah, now four, was born. He was given the diagnosis in February 2016.
The unbearable pain even put strain on his marriage to Kimberley, 29, who said she could no longer cope with his constant mood swings (pictured in New Zealand in 2010)
Mrs Jones, who is now her husband’s full-time carer, said: ‘He had always been fit and well, so it was unusual. He went to the doctor, but he was told it was nothing to worry about.’
The headaches intensified and Mr Jones, a former electrician, went back and forth to the doctor for advice, but was never given a diagnosis.
I was so shocked. I had wondered about it being a tumour, but I just thought the doctors would have found that, so had ruled it out
Then, when Mrs Jones became pregnant with their second child, Evelyn, now two, in August 2014, his health deteriorated.
The extent of his pain
His headaches became so severe, he had to spend days in bed. His personality also changed drastically because of his unbearable pain.
As a result, Mrs Jones, was worried he didn’t love her anymore and said she could no longer cope with his mood swings.
She said: ‘His personality had completely changed. I was worried that he didn’t want the baby, or he didn’t love us anymore.
‘I was worried he was going to leave us. But the reality was there was a tumour slowly spreading through his brain.
‘The pain was so bad, he was literally banging his head against the wall. They would be really severe, before subsiding and coming back again.
Doctors continually missed the signs of a deadly mass on his brain – and it was only when a private consultant noticed a tumour he was diagnosed (pictured on their wedding day in 2011)
Mr Jones was told if he left it for a couple more days before seeking help and starting gruelling treatment, he would have been dead (pictured after surgery to remove some of the tumour)
Now his heartbroken family, who always suspected it to be a tumour, have been told Mr Jones, a father-of-two may just have a year left (pictured Noah, now four, left, and Evelyn, two, right)
WHAT IS ANAPLASTIC ASTROCYTOMA?
Astrocytomas are tumours that arise from astrocytes – star-shaped cells that make-up the supportive tissue of the brain.
An anaplastic astrocytoma is a grade three tumour and are considered rare by experts.
The aggressive masses tend to have tentacle-like projections that grow into surrounding tissue, making them difficult to remove during surgery.
Radiation is used to treat the remaining tumour after an operation while chemotherapy is recommended if it regrows.
Headaches, seizures, memory loss, and changes in behavior are the most common early symptoms of having a brain tumour.
Source: American Brain Tumour Association
‘I even asked him if he was putting it on, because they kept coming and going, and he was so moody. I said I couldn’t put up with it anymore and had to ask our family for help.’
Mr Jones’ mother, Anita, 57, even took him to the doctor, but received no definitive answers. His headaches worsened.
He received hospital attention twice in December 2015, but was sent home on each occasion with medication.
In the end, the couple booked a private appointment at the Princess of Wales Hospital, Bridgend in February 2016, when Evelyn was eight-months-old.
But on that day, Mr Jones started to shake uncontrollably.
Mrs Jones recalled: ‘The doctor looked into his eyes, saw a mass and sent us straight for a scan.
‘They told us they’d found a tumour and Leo was relieved that someone was finally taking him seriously.
‘That day, they transferred us to Cardiff’s University Hospital of Wales, where they had better facilities.’
Mr Jones, a former electrician, went back and forth to the doctor for advice, but was never given a diagnosis (pictured jumping over boulders in New Zealand, 2010)
When the couple returned from New Zealand, they settled, married and Noah, now four, was born three years later, just before which Mr Jones’ headaches had started
His headaches became so severe, he had to spend days in bed. His personality also changed drastically because of his unbearable pain
Told he would not be able to leave hospital, he was diagnosed with a high grade two astrocytoma glioma – a type of brain tumour.
Within two months, this diagnosis had changed to a more serious grade three anaplastic astrocytoma.
The operations to cure him
Mr Jones had 11 hours of emergency surgery the day after the tumour was detected, to remove as much as possible.
This was followed by another five-hour operation in April 2016, after he started to deteriorate again.
Mrs Jones said: ‘It was meant to be another 11 or 12-hour op, but they had to stop after five hours. The tumour was wrapped around everything.
‘He was awake this time, whereas he’d been sedated before, and when his speech stopped, they had to stop. He couldn’t speak for a couple of months afterwards.’
On top of the complicated surgery, Mr Jones had 30 rounds of chemotherapy, followed by radiotherapy.
Despite the treatment, the couple have been told that his condition is terminal and he has been given between one and three years to live.
Despite the family’s difficulties, Mrs Jones is determined they should make the most of the time he has left (the family are pictured at the Brecon Mountain Railway earlier this year)
The couple’s family have started fundraising to allow the family to make as many memories as possible on the days when he is well (pictured with Noah and Evelyn in 2016)
Despite the family’s difficulties, Mrs Jones is determined that they should make the most of the time her husband has left.
She said: ‘Some days Leo has good days, but other days are terrible.
‘On good days, he can be well enough to walk the kids to school and he can go out, but on other days he can’t get to the toilet, he can’t speak properly and I have to hold his drink for him.
‘Still, now we know that Leo doesn’t have a lot of time left, we’re determined to make it as special as possible for Noah and Evelyn, so they will remember their daddy.’
The couple’s family have set up a JustGiving page to raise money to allow the family to make as many memories as possible on the days when he is well.
Mrs Jones added: ‘Leo finds things with the kids hard work, because it’s loud and hurts his head.
‘We would like to go to Legoland or something and get a cottage nearby, so he has space to relax in the quiet as well.
‘We want to have the funds to just go and do things when he is well. It’s so important to them to spend time with their dad while they can.’
Anyone willing to donate should visit here.
The couple had been instantly attracted when they met through mutual friends nine years ago. Their chemistry was so powerful that Mr Jones, who was planning to go travelling in New Zealand a few months later, invited her to join him
Mrs Jones said: ‘I was so shocked. I had wondered about it being a tumour, but I just thought the doctors would have found that, so had ruled it out’
Mrs Jones, now her husband’s full-time carer, added: ‘Some days Leo has good days, but other days are terrible’