Ben’s Story
Proud parents Neil and Nicky Halford’s world was shattered when they said goodbye to their son Ben as he lost his long and brave battle against cancer.
One moment Ben Halford was a normal, happy, gorgeous little boy, learning to walk and talk, exploring his world with delight and full of chuckles for his doting mum and dad, and the next, he was fighting for his life.
At least that’s how it seemed to Neil and Nicky, of Coleford near Radstock in Somerset. They transformed from delighted and proud first-time mum and dad to shell-shocked parents, frozen with fear for their little boy with shocking speed.
At a tender 18 months old, Ben was whisked off for a 14 hour operation to remove a massive brain tumour that had grown to the size of a grapefruit inside his head and was threatening to crush his brain stem, the part of the brain that connects with the spinal cord.
It was just the start of a long journey that saw the couple face every parent’s nightmare – their only child dangerously ill. It was a journey that galvanized the support of their local community.
The first sign that something was wrong came, as Nicky recalls, when: “He sort of stopped developing and one morning he woke up, got out of his cot, shook, fell over and then went back to walking along the furniture as he’d done when he was younger.”
Nicky took Ben, then aged 18 months, to the doctors that day and a urine sample found nothing wrong.
Uneasy, the doctor referred Ben for an MRI scan at the Royal United Hospital in Bath. Ten minutes later, Nicky and Neil were ushered into a room full of consultants and knew instantly that they had to brace themselves for terrible news.
The scan showed a massive brain tumour caused by a very rare cancer called choroid plexus carcinoma. The choroid plexus is a mass of blood vessels in the brain which makes the cerebrospinal fluid that surrounds the brain and spinal cord.
Ben was rushed to Frenchay Hospital in Bristol where Neil and Nicky were warned that the delicate operation to extract the tumour could take up to 18 hours.
In fact, it took 14 agonising and fear-filled hours. Although a doctor came out of surgery every three hours to keep them informed with progress reports, they say it was the longest day of their life.
During the operation, Ben lost a staggering 30 pints of blood – nine times the amount his tiny body normally held and it’s something of a miracle that he survived at all.
“They’d never actually kept someone alive who’s lost so much blood,” says Nicky.
That first operation in March 2007 removed 95 per cent of the tumour, but some of it was too near the brain stem and the surgeons feared causing lasting damage if they probed any further.
A few weeks later, Ben started a six-month course of chemotherapy to shrink the remaining tumour.
“He coped very well,” says Nicky. “He would have a week of intense chemotherapy and then three weeks off, but he was in and out of hospital with infections all the time, as well as for MRI scans to see if the tumour was shrinking.”
By the end of the treatment, the tumour had disappeared completely and the Halfords were overjoyed. But, clever though they are, MRI scans can’t pick up individual cancer cells.
Ben finished his treatment in September 2007, but a routine scan that December brought devastating news – a fingernail-sized tumour had reappeared, this time on the right temporal lobe of his brain.
It was just before Christmas when Ben underwent surgery again. The doctors were sure they’d got the entire tumour this time, but to be on the safe side, Ben – now with titanium plates permanently inserted in his skull – had another three weeks of chemotherapy and then six weeks of radiotherapy.
Radiotherapy can be hard for patients to deal with. Nicky and Neil had to watch their little boy who had already endured so much, cope with far more than any two-and-a-half-year-old should have to face.
After a pink patch appeared on his stomach and Ben lost his appetite, they were puzzled. Then they realised it was a burn mark from the radiotherapy, applied to his spinal cord, coming through on the other side of his body.
Ben had finished all his treatment and then had a MRI scan to see whether the tumour has stayed away.
“They were saying there was no more treatment they could give him,” says Nicky.
There was an even longer waiting game to be endured – to see whether Ben’s treatment had caused him lasting damage. In a worst-case scenario, the list of possible risks was devastating.
“They don’t like giving radiotherapy on the brain under the age of three because of the problems it can cause,” explains Nicky.
“He could have had stunted growth, curvature of the spine or possibly heart problems.
“He would definitely have had some kind of learning difficulties, but we wouldn’t know how bad they might be, and there was also a chance of stroke and cataracts.”
Explaining the risks beforehand, the doctors gave them the choice of whether to continue with the treatment.
But of course there was no choice, says Neil, who works for a medical packaging company: “You do what you have to do. You must try everything possible.”
Ben had the scan and all was well, no tumour. He recovered from the radiotherapy and had a good couple of months, for the time being, life was normal. Ben went to Disneyland and seemed to be getting stronger and developing well.
In January 2009 Ben was doing so well that Neil and Nicky were devastated when a routine MRI scan showed the tumour had returned for the third time. It was back to Frenchay Hospital for yet another operation. Surgeons removed all of the tumour and the surrounding tissue.
This left Ben paralysed down his left side. After a month of intense physiotherapy Ben was slowly getting movement back in his left leg, and yet again this little boy amazed us all.
Neil & Nicky worked very hard in not only encouraging Ben to get mobile again, but also fighting to get more chemo for him knowing full well there could be more cancer cells floating around in the brain. After a lot of meetings and a brilliant new consultant, Ben started a new chemotherapy regime.
A few months down the line, Ben was getting stronger and stronger. The chemo seemed to be working, they had 3 stable scans and the delighted Halford’s went on more holidays and days out than they ever had. It was by far their best year and Ben even started school.
Treatment finished in September but another routine scan in January 2010 showed devastating news. Yet again the tumour had returned and this time it had spread too far. Ben could not be operated on. The oncologist offered Ben more chemo, in the hope of getting some control of this cancer.
Determined to leave no stone unturned in their fight for Ben, Nicky and Neil turned to the community around Coleford. When people heard his story they took Ben to their hearts and raised money in the hope of finding treatment in America to try and cure him.
The tumour did shrink and although in and out of hospital Ben still remained a happy little boy having fun.
But the cancer was never going to leave, and in September 2010 the MRI scan showed it had spread and the family returned to Ben’s favourite place, Disneyland where he had enjoyed so many happy times.
Ben, a little boy who was born to be brave, passed away at home in his parents arms on 4th October 2010.
