A schoolgirl with an ‘insect bite’ on her face was left fighting for her life after doctors diagnosed it as a rare form of cancer.
Emma Payton, from Stockport, Greater Manchester, developed the lump during a family holiday to Egypt.
Upon arriving home her mother Tracey took her to the GP who believed Emma, now 10, had a blocked saliva gland.
But to the family’s horror an MRI scan eventually revealed she had rhabdomyosarcoma – a rare soft tissue cancer wrapped around her cheekbone.
Emma Payton, now 10, had a lump on the side of her face which her family believed was an insect bite (left). But scans revealed it was actually a 3cm cancerous tumour wrapped around her cheekbone (right)
Emma had a nine-hour operation to remove the tumour, with part of her cheekbone also removed. She had a bone and muscle graft from her neck to reconstruct her cheek, before undergoing months of chemotherapy
Emma underwent facial surgery – in which part of her cheekbone was cut out and reconstructed – as well as chemotherapy.
However, she also needed proton beam therapy – a type of radiation which can more accurately pinpoint and kill tumours – that is not available in the UK.
As a result, the family were forced to travel to Oklahoma for life-saving treatment.
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Mrs Payton, a teaching assistant, said: ‘We went on holiday to Egypt when she was eight. On the first day I was putting sun cream on her face and found a lump on her right cheekbone near her ear.
‘We didn’t think anything of it. She said she had had it for ages and it didn’t hurt, so we weren’t overly concerned. It was just like an insect bite.
‘You couldn’t really see it but it was rock hard, like a pebble, the way that swollen insect bites can sometimes be. It was about the size of a marble. I just thought she’d been bitten in the night.’
WHAT IS RHABDOMYOSARCOMA?
Fewer than 60 children are diagnosed with rhabdomyosarcoma in the UK each year.
Most of them are younger than 10 years old. It’s more common in boys than girls.
These tumours develop from muscle or fibrous tissue and can grow in any part of the body.
The most common areas of the body to be affected are around the head and neck, the bladder, the testes, the womb or the vagina.
Sometimes tumours are also found in a muscle or a limb, in the chest or in the abdominal wall.
If the tumour is in the head or neck area, it can occasionally spread into the brain or the fluid around the spinal cord.
The causes of rhadomyosarcoma are unknown but research is going on all the time.
Children with certain rare genetic disorders, such as Li-Fraumeni syndrome, have a higher risk of developing rhabdomyosarcoma.
The most common symptom is a lump or swelling.
Source: Macmillan
The family were sent to the GP, who referred them to the dentist.
Then, Emma had an ultrasound at the facial unit at Wythenshawe Hospital, followed by an MRI scan and finally a fine needle biopsy.
Mrs Payton continued: ‘It was so rare that it took a while to work out what was wrong with her.
‘When we found out it was cancer my legs were like jelly. Emma was outside the room with the play worker when the consultant told us.
‘I thought, “No, it can’t be. This is our child.” My heart broke into a million pieces.’
The tumour was 3cm long and wrapped around her cheekbone when she was diagnosed – but as it had been caught early it hadn’t spread to anywhere else in her body yet.
Mrs Payton said Emma was ‘petrified’ when her family told her she had cancer.
She said: ‘I didn’t want her to be scared of the word cancer. She is a big Harry Potter fan, so I told her cancer was just a word people are scared of, like Voldemort.’
Emma had a nine-hour operation to remove the tumour, with part of her cheekbone also removed.
She had a bone and muscle graft from her neck to reconstruct her cheek, before undergoing months of chemotherapy.
Mrs Payton said the treatment really took its toll on her daughter.
She said: ‘Emma had her operation in January 2014. It left a big scar down the side of her face and she has a dent in her cheek where they removed some muscle mass.
‘During chemotherapy, she would sometimes go grey and have no energy.
The operation left a big scar down the side of Emma’s face as well as a dent in her cheek where doctors removed some muscle mass
During chemotherapy, Emma lost her hair and and had no energy. Yet she desperately wanted to carry on at school, and managed 54 per cent attendance
‘She had to give up swimming lessons and dancing, but she desperately wanted to carry on at school.
‘She managed 54 per cent attendance that year.’
After chemotherapy, Emma was told she would need proton beam therapy – and would have to travel to a cancer centre in Oklahoma for the treatment.
Mrs Payton said: ‘When we found out she would need to go to Oklahoma, I laughed initially because I thought it was a joke.
‘Her criteria ticked all the boxes for the NHS to pay for it, and a charity paid for our flights.’
Mrs Payton says Emma, pictured during treatment, gets embarrassed if people call her brave. She said: ‘She sees herself as a normal kid who happened to get cancer. She always just got on with it’
Despite her bravery, Emma sees herself as a normal girl and is now back at school full time doing her SATs. She is pictured receiving a ‘Little Stars’ award for her bravery (left) and recovered (right)
While conventional radiotherapy uses high energy beams of radiation to destroy cancerous cells, often damaging surrounding tissue, proton beam therapy aims radiation directly at the tumour.
Because it is so highly targeted it means it can avoid healthy tissue, particularly tissues and organs behind the tumour.
Along with her mother, her father Phil, sister Holly and twin brother Ben, she flew to Oklahoma for eight weeks, where she had 23 sessions of the therapy.
Then, she had a two final chemotherapy cycles – and was overjoyed to be declared in remission.
In the cancer centre in Oklahoma, the family were introduced to the tradition of patients ringing a bell when they finished their treatment.
Mrs Payton said: ‘There’s a poem hanging on the wall next to the bell. It’s so moving to see and everyone crowds around.
‘Back in Manchester, I showed the ward manager a video of the bell-ringing and asked if we could provide one to them to say thank you.
‘We presented it to them on the day Emma finished her treatment in April 2014.’
For the first year after her treatment, Emma had an MRI scan and chest X-ray every three months to check the cancer has not returned – and still has them once every four months.
The family have been sending bells to hospitals around the UK to help other families celebrate the end of their loved ones’ treatment.
She said: ‘We now sent out 59 bells to hospitals. There are lots in the UK, including six at Great Ormond Street Hospital. It’s our way of saying thank you and allowing other patients to celebrate their progress.
‘We went to Florida last year with the charity When You Wish Upon a Star.
‘It was like a light at the end of the tunnel. Emma’s illness had affected the whole family.
‘Don’t get me wrong, I would sit in the shower and sob, but she never knew that. We never let her see that side of us.’
The lump was discovered while Mrs Payton was putting sun cream on her daughter’s face. Thankfully it was caught so early it had not spread. Emma (centre) is pictured with her sister Holly and twin brother Ben
In Oklahoma, where Emma received targeted proton beam therapy treatment not available in the UK she rang a bell at the end of her treatment. Touched by this tradition, she is introducing bells to UK hospitals
Despite her bravery, Emma sees herself as a normal girl and is now back at school full time and doing well, her mother said.
She said: ‘Emma gets embarrassed about it now, if people tell her she is amazing or brave. She sees herself as a normal kid who happened to get cancer. She always just got on with it.
‘She’s just completed her year six SATs and is doing well. She knows children who have died of cancer, so she knows her own situation could have been very different.
‘But she is so active and just loves life.’
PROTON BEAN – THE THERAPY THAT TARGETS CANCEROUS CELLS
While conventional radiotherapy uses high energy beams of radiation to destroy cancerous cells, often damaging surrounding tissue, proton beam therapy aims radiation directly at the tumour.
Because it is so highly targeted it means it can avoid healthy tissue, particularly tissues and organs behind the tumour.
While radiotherapy can lead to side effects such as nausea and can sometimes disrupt how some organs function, proton beam therapy has a lower risk of side effects.
This means it is effective for treating cancer that affects critical areas, such as brain cancer.
Five-year-old Ashya King, who suffered from brain cancer was given the all-clear after receiving proton beam therapy
However, Cancer Research UK estimates that only one in 100 people would be suitable for proton beam therapy and there are also concerns that the long-term impact of the nascent procedure is not yet known.
The only proton beam facility currently in operation is at the Clatterbridge Centre for Cancer NHS Foundation Trust in the Wirral, Merseyside, which delivers ‘low energy’ therapy for rare cancers around the eye.
The NHS currently pays for those deemed appropriate for proton beam therapy to go to the United States for treatment.
They must be assessed by a panel who may decide patients are not suitable if there is unlikely to be a clinical benefit from the treatment.
More than 400 patients have been sent abroad since 2008 – most of these children – at an average cost of £100,000 per patient.