Source: www.dailymail.co.uk/health
Author: Angela Epstein

A child’s first words are memorable for any parent. But when Daniel Sewell said ‘mama’ for the first time, his parents had more reason than most to rejoice.

Just 12 weeks earlier, their then 19-month-old son had undergone pioneering surgery to rebuild his tongue after first having an operation to remove a cancerous tumour. The family had been warned he might never be able to speak.

So Daniel’s first word was a monumental achievement.

‘I just couldn’t believe it,’ says his mother Alison. ‘That single word meant there was hope that the horrors of the previous months might finally be behind us.’
Daniel Sewell and mum Alison

Nearly 5,000 people are diagnosed with mouth cancer annually. While other cancers have seen a drop in mortality rates, those for mouth cancer have remained at more than 1,500 deaths a year for a decade. It is often triggered by smoking and drinking – alcohol and nicotine damage the mouth lining, causing cell changes – and is almost unheard of in children. So when Daniel, the youngest of the couple’s five children, began having trouble sucking on a bottle, cancer was the furthest thing from his parents’ mind.

‘With the benefit of hindsight, it was clear that something was bothering him,’ remembers Alison, 43, a housewife, who lives with her husband Richard, 42 a shop fitter in Crook, County Durham. ‘But at the time we just put it down to teething. I’ll always feel terribly guilty about that.’

As well as taking ages to feed – on one occasion, when he was just ten months, he spent an entire evening having his bottle – it also seemed a strain for him to cry.

‘One morning, about a month later, Richard found blood all over his face and cot sheets. It was horrifying, and we panicked. Yet when we washed his mouth out there was nothing there. When we took him to our GP he said Daniel had probably had a nose bleed during the night.’

But when Daniel was just 13 months it was clear something was seriously wrong.

‘Richard offered Daniel a spoonful of food and when he opened his mouth, noticed that his tongue was very swollen in the middle, although the end of it appeared pinched and narrow, as if it had been tied with a piece of cotton.

‘We were frantic that he’d swallowed something, so phoned our GP. He told us to call an ambulance since there was a risk that Daniel could choke on his tongue, whatever the cause.’
Daniel Sewell

Doctors at the hospital suspected an infection triggered by something small embedded in Daniel’s tongue. He was put on antibiotics and kept in overnight.

With no sign of improvement, the following morning he was transferred to the Freeman Hospital in Newcastle Upon Tyne, where an ear, nose and throat surgeon performed a precautionary tracheotomy – a procedure where an incision is made on the neck in order to make a direct airway to the windpipe – to allow time for further investigation.

The family prayed his problems were down to a treatable virus.

But during the tracheotomy surgeons found a swelling on his tongue. Suspecting it was cancer, they transferred Daniel to another hospital in the city, the Royal Victoria, for a biopsy.

‘We still didn’t allow ourselves to suspect it could be anything serious,’ says Alison.

But it was there that paediatric oncologist Dr Juliet Hale delivered the shattering news.

‘Part of me wanted to scream, yet part of me felt numb,’ says Alison. ‘I looked at Richard, who was crying his eyes out. But I couldn’t cry – I needed answers. All I could think of was that my baby could lose his speech or even die.’

Daniel was diagnosed with a rhabdomyosarcoma, a rare form of soft-tissue cancer.

Fewer than 60 children are diagnosed with the condition in the UK each year.

As the Sewells struggled to come to terms with the diagnosis, Dr Hale recommended chemotherapy to shrink the tumour.

The cancer was the size of a small grapefruit, running from the bottom half of his tongue to the epiglottis. But because it grew from deep in the tongue, it had only just become visible.

Daniel had nine sessions of chemotherapy over a seven-month period. Alison moved into the hospital while Richard and his parents looked after Daniel’s sister Rachel, 13, and brother Thomas, six.

The side-effects were brutal – Daniel lost his hair, suffered sickness and developed ulcers on his swollen tongue, which protruded from his mouth.
Daniel Sewell His appearance was so distressing that he was given a side room so he couldn’t be seen by other visitors and children.

‘But Daniel was incredible,’ says Alison. ‘He had this sense of acceptance. His courage stopped me caving in – if Daniel could cope, then I had to, too.’

After the chemotherapy had killed off most of the tumour, Daniel had the rest removed by surgery – cutting away part of his tongue and making speech almost impossible.

‘The thought of this destroyed me,’ says Alison. ‘How could my baby – who hadn’t even learnt to speak yet – face a future without being able to talk?

But my mother had read a story in the Daily Mail about a man who’d had mouth cancer and had his tongue reconstructed using a muscle from his back.

‘And while this kind of operation was unheard of in such a young child, Dr Hale eventually found someone willing to do it.’ That someone was Peter Hodgkinson, a consultant cleft-palate and plastic surgeon at the hospital. The eight-hour operation took place in September 2005.

‘I knew this was a pioneering operation for such a young child – one of the main concerns was the anaesthetic because he would be under it for so long. But there was no other way to save his speech,’ says Alison.

‘I remember Daniel sitting on my knee outside the operating theatre as the doctors gave him the anaesthetic. As he went limp in my arms it was heartbreaking. And when they took him away, I fell apart.’

To access the site where thee tumour had been, and not disturb the healthy part of his tongue, Mr Hodgkinson operated by cutting through the lower jawbone. While this was happening, a separate team removed one of the ‘abs’ on the inner wall of his stomach.

This muscle, along with a blood vessel, was selected as it is about the size – around 10cm long and 4cm wide – of the removed tongue. Because it’s muscle, it also has bulk and tone like an ordinary tongue.

It was attached micro-surgically – every nerve and blood vessel was joined to ensure it would continue to grow as normal. Finally, ten dissolvable stitches on the surface of the tongue – finer than a human hair – completed the job.

Mr Hodgkinson said that although the muscle looked different, this would change over time because the moist tissue that covered the tongue would soon grow over the transplanted muscle – in fact, this started the very next day.

However, the transplant would never be a perfect match – indeed, Daniel’s sense of taste and sensitivity to temperature have both been affected, and he now tests his food by touching it with his fingers.

After the op, all that was visible was a small – now faint – vertical scar running down Daniel’s chin and under his neck.

‘When he opened his eyes he didn’t cry, he just attempted this wobbly smile,’ recalls his mother with tears in her eyes. But within days Daniel was displaying characteristic toddler energy. Three days after surgery, he was riding a bike in the ward.

Ten days after his surgery, a lab report confirmed that the operation, combined with chemotherapy, had been so successful that there was no need for radiotherapy – the cancer was gone. This was important as the treatment can stunt growth, and might have affected the development of Daniel’s tongue.

Daniel went home the following day, and that evening managed a bowl of chicken soup. As the days passed, Alison introduced food that was carefully cut up.

‘It was such a joy to have a family meal together. I think we’d all forgotten how special it was for us all to be together with Daniel.’

The little boy continued to make a rapid recovery and by Christmas day managed to eat turkey, roast potatoes and pudding. Then, in early January 2006, he finally uttered the word ‘mama’.

Within a few weeks of the operation, Daniel began weekly speech-therapy sessions.

‘Before he was diagnosed, Daniel was already making the usual baby sounds,’ says Alison.

‘The specialists said there was no reason why he wouldn’t learn to speak.’

Two years on, his speech is pretty clear. ‘He can’t stick his tongue out or lick a lolly because it doesn’t have the same range of movement as his old tongue. But he manages. He’s so cheerful. He’s always singing.’

Two months ago, Daniel started school. There is little sign that his experience is in anyway compromising his progress, and Alison continues to relish each day.

‘You dread the cancer recurring. Halfway through the chemotherapy I thought we are never going to get out of this. But he did – much to everyone’s amazement, even the doctors’. Now he’s back with us and every day is like a miracle.’