Homeland of Santa Claus set to welcome a group of the Lothians’ remarkable young cancer survivors
UNDER a starry sky, miles away in the frozen north in a land where reindeers pull sleighs and snow glistens thick on the ground, the magic of Christmas is about to come to life.
For there, by the light of hundreds of flickering candles and with faces warmed by the glow of a roaring fire, some of the most deserving, fragile, and courageous children around will have at least one Christmas dream come true.
More than a dozen youngsters, some of them battling life-threatening illnesses, others who have endured the pain of grief, will head to Lapland on Sunday for a Christmas trip they’ll never forget – and one which few might have dared to dream they’d ever see.
Once there the children, from brave five-year-olds who have shown fortitude beyond their years to teenagers who have battled horrendous illness without complaint, will have the chance to deliver their biggest Christmas wish of all to Santa in person – a plea to just get better.
The trip is organised by Edinburgh-based charity, Fight Against Cancer in Edinburgh (FACE), which every year tracks down some of the most deserving youngsters in the area and whisks them skyward on a fun-filled flight to a winter wonderland.
Their destination is Santa’s Lapland home and a fairytale scene of glistening snow and frozen lakes, rosy warm log cabins and cheerful elves’ workshops.
It’s there that children who have endured the nightmare of gruelling cancer treatment, debilitating conditions and traumas that will continue to shape their lives for years to come can forget it all – for a day at least – and simply enjoy being children once again.
Among them will be pretty five-year-old Shaelyn Bayliss from Uphall, who, at Christmas two years ago was blissfully unaware of the horrendous journey ahead of her as she battled kidney cancer.
Today, she has just half a kidney – her right kidney and half of her left were so riddled with cancerous tumours they couldn’t be saved.
Yet she is battling her way back to health after nearly two years of gruelling treatment.
“It was Boxing Day the year before last,” recalls her mum, Zoe, 25, who has just started work as a call operator for NHS 24. “She got new clothes for Christmas, and I was trying them on her.
“She had a new jumper dress with a belt, but I couldn’t get the belt done up; her stomach seemed swollen. I thought maybe it was a bit of constipation and I’d just keep a watch on it.
“Then I felt this lump on her right hand side of her belly button. I froze. I knew it shouldn’t be there.
“I could cup this lump in my hand, it was that big.”
A scan there revealed a series of large growths on both of her kidneys. “It was horrific,” recalls Zoe. “I was in tears. They couldn’t tell at that stage if the tumours were cancerous or not, but the consultant said because they were so large – they were the size of small melons – that he was 99.9 per cent certain they were.”
At the Sick Kids Hospital, Shaelyn, just a few days away from her fourth birthday, was rushed into chemotherapy treatment.
“It was so quick and so efficient,” says Zoe. “We were given lots of information which meant we had something to focus on.
“One of the main questions you have is ‘is she going to live?’. At the Sick Kids everyone was so positive and the doctors’ reaction was that they’d do everything they possibly could to make sure she does.” However, there was a long, hard road ahead. Little Shaelyn endured three four-week blocks of chemotherapy, surgery to remove most of her kidneys and then 12 days of radiotherapy.
As her immune system was blitzed by the drugs, infections and high temperatures set in.
Eventually there followed more chemotherapy – in all she was given six different types of chemotherapy drugs over a 36-week period – which left her tired, unable to eat and made her hair drop out.
“It felt like she was hardly at home all year,” adds Zoe, who was juggling new baby Cerys at the same time as helping nurse Shaelyn through her treatment.
“All our lives were in limbo. It was as if the clock stopped on that January day when we got the diagnosis.
“The rest of the world just carried going on about their business, and we were stuck in that space in time.
“I know now what people mean when they say they have to take things day-by-day, because you can’t make plans, you can’t do anything until they’re better.”
Now Shaelyn is making good progress, and the primary one pupil at St Nicholas in Broxburn is looking forward to a dream trip to the magic of Santa’s home.
“It’s amazing that she’s going,” says Zoe, who lives with Chris, a landscape gardener, and their two daughters at Houston Gardens, Uphall.
“She’s unbelievably excited about it. It’s going to be amazing.”
Among the children joining Shaelyn will be others with a variety of serious conditions.
There will also be children whose lives have been hit by illnesses that have affected close family members, young carers and two little girls from Fife whose world was turned upside down when their dad died suddenly, aged just 32, from a brain tumour.
The trip is also a special treat for older children who, despite their teenage years, are just as excited as the little ones to be whisked off to a winter playground.
For Laura Gibson, who celebrated her 16th birthday yesterday, Sunday’s trip will be a thrilling escape from the grind of coping with Hodgkins Lymphoma, a form of cancer that originates in the white blood cells.
“It started in August last year,” recalls her mum, Sue. “Laura had itchy feet then, overnight, she developed perfectly round, open sores on her feet.
“We were back and forwards to the GP during which time she started to become very unwell, tired with no energy.”
Doctors initially thought her condition might be linked to celiac – a digestive disorder – Crohn’s Disease and even considered the possibility of an eating disorder.
However, in March scans confirmed an advanced stage of Hodgkin’s Lymphoma.
“It was very traumatic,” says Sue, 44, who is also mum to Cameron, 17, and Stuart, 12.
“Everything then started to happen really quickly – at one point I had just five minutes to decide whether Laura should be treated at the Western or the Sick Kids.
“It turned out to be the best decision I could have made because they have the Teenage Cancer Trust unit – just two beds, but for a 15-year-old it was the best option.”
Laura, of Woodhall Road, Colinton, underwent six cycles of debilitating chemotherapy, causing her long chestnut hair to fall out in chunks.
As the disease had spread from her neck to her pelvic area, in her bones as well as lymph nodes, she was also bombarded by radiotherapy.
“The disease was around her heart, in her liver, kidneys and pancreas,” recalls Sue. “Her bone marrow was teeming with disease, it was up her spine and in her hip bones.”
The treatment, while apparently successful, has left her suffering a string of side effects.
Laura’s bones have been affected by steroid treatment, she suffers from waves of nausea, radiotherapy has damaged her heart and lungs and she is more prone to a host of other conditions including skin and breast cancer.
Yet, insists her mum, she’s rarely complained. “We had a big cry the night of the diagnosis and when her hair was coming out, but other than that she has just got on with it. She’s been amazing.”
Laura, a fifth-year pupil at Mary Erskine’s School, kept a blog record of her cancer journey, listing her treatment and reflecting upon her feelings.
“It was quite scary finding out what was wrong,” she says. “I looked it up on Wikipedia but didn’t understand a lot of what it was, which is probably for the best.
“I think maybe it’s best to be oblivious and just get on with it.”
On Sunday she will join other youngsters like her, the FACE charity workers and doctors and nurses who are giving up their own time to provide medical support on what promises to be a day none of them will forget.
“I’m really excited,” says Laura. “It will be a nice end to a rotten year.”