OUTSIDE it is a black, still night. The kind of night which makes you want to snap the frozen air between gloved hands. The kind of night which turns the spoken word into puffs of white before they disappear. The kind of night when you want to be inside.
Yet the floodlit green pitches of the Albyn football training ground in Broxburn are busy with young boys and men being put through their paces; the glare from their neon bibs enough to hurt the eyes of the unwary, their banter filling the air with macho bravado.
The bravest person there though, on this particular night, is a 15-year-old girl.
Shannon Hughes smiles and smiles, her bright lipstick almost festive under the white-out brilliance of the stadium lights, her thick fringe framing sparkling eyes. She doesn’t look like a girl with cancer, who is about to go to hospital the following day for chemotherapy.
Nor does she look like a girl who’s already been through endless bouts of radiotherapy since August to tackle a tumour on her skull, or that last year she’d been through excruciating surgery, more chemotherapy and was facing having to learn to walk again.
Surrounded by the coaches of the Broxburn United Sports Club, including her dad Paul and her 11-year-old brother Dylan, she poses for photos. Smiling even more as the men pledge to grow moustaches this November to raise money for CCLASP, an Edinburgh charity which has been helping her and her family.
Her mum Audrey and 14-year-old sister Rachel look on. “She’s amazing,” says Audrey. “Has been throughout it all. They all love her at the Sick Kids because she doesn’t let it get to her.
“She does just smile through it all. It’s amazing what kids are able to cope with.” Shannon, a Broxburn Academy pupil, was 13 when she first began to feel pain in her right hip. It spread to her leg, down to her foot and, at first, was thought by the family doctor to be typical teenage growing pains. “One night she just broke down with the pain,” says Paul. “She couldn’t sit, she couldn’t lie she just couldn’t stand it anymore. We took her to St John’s Hospital where she got an X-ray and they told us she had a cyst on her pelvis.
“But we were told they would need to investigate further so we had to go to the Sick Kids the next day for an MRI. That’s when they discovered it was a tumour.”
The diagnosis of Ewing’s Sarcoma, a rare bone cancer, came in March last year.
Only around four children a year in Edinburgh and Glasgow are believed to develop it. “We were totally numb,” said Audrey. “We couldn’t believe at her age she could have bone cancer.”
She was given a biopsy, then numerous operations, before chemotherapy.
And as her hip kept popping out of the joint, she had to be put in a body cast. She lost weight and ended up being fed through a tube at night to keep her calorie count up.
Then there was the 14 cycles of aggressive chemotherapy, which saw her lose her hair.
“I was in hospital for 11 weeks,” says Shannon. “I was in a cast and couldn’t move my body more than 40 degrees. It was difficult.”
“But she dealt with it so well,” says Paul. “It was hard on the family as every time she stayed in hospital Audrey stayed with her. But we have tried to keep to a routine. And we were told that after that it was dealt with.”
It hasn’t turned out that way. In what the family describe as just “bad luck” tumours have returned.
From March this year Shannon was in remission and receiving physiotherapy. “I had a walking frame and then crutches,” she says. “I had to learn how to walk again really.”
Life was just returning to normal when in August she realised she couldn’t see well.
Another tumour was picked up in the middle of her skull, and was pushing on a nerve causing the sight problem. “It was the same type of cancer,” says Paul. “We couldn’t believe it was happening again. Then they told us they’d found another tumour in her left hip. I guess we’ve just been unlucky. But they keep saying there’s no need to think it will happen again.” Audrey blinks back tears.
Where they are lucky is in the support they’ve received from BUSC, Paul’s fellow football coaches and their friends.
Last year the coaches raised £400 which they gave to Shannon to spend on herself. This time they’re aiming for £1500 for CCLASP, the small charity with has given Shannon tickets to see One Direction, as well as offered the family a lot of support over the last 18 months.
“We just want to give something back,” says Paul. “We found out about CCLASP at the hospital and have been using its services a lot. They’re always asking Shannon if she needs anything.”
Also luckily, this time there won’t have to be operations. The radiotherapy has so far reduced the skull tumour to a fifth of its size, and Shannon, has been told the chemotherapy will be less aggressive and have fewer side-effects. “I’ve had 15 rounds of radiotherapy for my skull and I’ll get 30 rounds of chemo for my hip.” She smiles as if it’s nothing.
• To sponsor the coaches’ moustache-growing for CCLASP, please contact Greig Taylor on firstname.lastname@example.org or call 01506 858057.
Ewing’s sarcoma facts
SHANNON suffers from Ewing’s Sarcoma, a rare type of cancer which develops in bones or the soft tissues of the body.
There are around 500 cases of this cancer in the UK each year – but between Edinburgh and Glasgow only around four teenagers are diagnosed with it annually.
The disease is named after Dr James Ewing, who first described the tumour in the 1920s.
It can develop in any bone, but most commonly the pelvis, thigh and shin. It mostly occurs in young people, and in boys more often than girls.
The precise causes of the sarcoma are still unknown but it’s thought they might develop because of rapid bone growth in the teenage years.
Pain is the most common symptom of bone cancer, and there may be swelling in the affected area.
For information, visit www.macmillan.org.uk.