Brightly coloured beads hang in Euan Beveridge’s bedroom, all the colours of the rainbow and numbering more than 200, each carefully strung together on five strands of cord.
They might just be a multi-coloured fun decoration, a splash of jazzy colour amid the Xbox games and the Celtic green and white of his favourite football team.
In fact the green, purple, red, black beads, multi-coloured ones that are a swirl of vivid green and blue, some with letters, some funny shapes, and each packed string – five of them, with at least 50 beads on each – make up a powerful and sobering testimony to the little boy’s amazing fight.
For pretty as they are, these strands of colour bring home in the most striking manner possible just what it means to be a little boy fighting a very big illness.
“He gets a bead for every treatment he gets,” explains mum Linda Dodgson, 44, who back in September watched Euan suddenly lunge from fit and healthy eight-year-old to lying in intensive care, battling the nightmare of non-Hodgkin’s lymphoma.
“Every bead signifies a different procedure, a blood test, chemotherapy, physiotherapy,” she adds. “They are colourful, they hang in his bedroom and they’re like a wee reward to signify and acknowledge everything he’s dealt with.”
That he has collected well over 200 so quickly reflects the nightmare rollercoaster of hospital tests and procedures – many involving needles and special reserves of courage – that Euan, a p5 pupil at St Margaret’s Primary School in South Queensferry – has endured in just four challenging months.
And while they tell their own unique story of Euan’s journey since being diagnosed to finally coming home from hospital to spend his ninth birthday and Christmas with his family, they are also a way for young patients like him to draw fresh strength to help them deal with whatever treatment is still to come their way.
Edinburgh’s Royal Hospital for Sick Children was the first in Scotland to introduce the Beads of Courage scheme earlier this year. Since then scores of young patients have received strings of brightly coloured beads, one single glass or plastic bead awarded for each procedure, and special coloured or uniquely shaped beads “awarded” in recognition of particularly challenging or significant event in their treatment, like lumbar punctures or MRI scans.
Some children who face particularly low points in their treatment might receive a special “booster” bead – a small but significant treat that can have a major impact by helping raise flagging spirits.
And those lucky ones who finally reach the end of their treatment can look forward to a prized “purple heart” bead.
The ground-breaking scheme originated in America, and proved so successful at helping young oncology patients through the difficulties of treatment that it has been adopted by hospitals around the world.
And it has worked so well with Sick Kids’ patients undergoing cancer treatment, that plans were soon in place to extend it to children and young people affected by all kinds of other long-term conditions and even to their siblings who suffer stress and anxiety as they see their day-to-day family life shattered.
Euan is proof that boys as well as girls have responded with enthusiasm to the beads scheme, taking pride in collecting their beads and showing them off to family, friends, hospital staff and other patients.
And teenagers have also joined in – with some of the beads specially created by glass artists, they are not only simply beads but mini works of art.
“The kids actually enjoy collecting them,” adds Linda. “They have a list of what they are for so it’s easy to match the bead to the procedure. There are beads which are very special for particular acts of courage or procedures that not all kids go through.
“You see them hanging off the children’s drip stands in hospital. And they take an interest in each other’s beads.
“It’s a great idea for children,” she adds. “It’s a special reward and acknowledgment to show what they have been through. And a good way to engage them in conversation about their illness too, so if a new member of staff comes in, they can talk to the patients about the beads, and it’s easier for them both to get to know each other.”
Euan’s ropes of multi-coloured beads reflect a challenging and difficult four months of intense treatment in his fight against non-Hodgkin’s lymphoma, a diagnosis which Linda recalls came out of the blue. “Up until September Euan was fit and healthy and a well wee boy. Then he came home from school one day and collapsed,” she recalls.
“He was sitting doing his homework. He said he had some trouble breathing, he started to cough and then he just couldn’t breathe.”
A trained nurse, Linda flew into action. Soon Euan was being raced to hospital, where it emerged that a tumour in his chest was pressing on his windpipe, preventing him from breathing properly.
Medical staff took action to help his breathing, while further tests soon revealed the devastating news that the tumour had been caused by non-Hodgkin’s lymphoma, a cancer of the lymphatic system.
It was particularly shocking for Linda and her partner Steve Beveridge, Euan’s dad. For other than a mild tickly cough, the young football fan had shown no signs of being poorly.
His personal collection of beads was soon under way as staff at the Sick Kids’ began intensive chemotherapy, a necessary evil which plunged the little boy into sickness, causing his hair to fall out and his weight to plunge.
Throughout the most challenging times, the worried couple left their home in Broxburn to set up temporarily in Clic Villa, run by charity Clic Sargent, which gives families a place to stay close to their sick child.
“It has been hugely traumatic,” adds Linda, who, along with Steve, 52, works in health and social care services. “We were at Clic Villa for five weeks, a place we previously knew nothing about. It’s been amazing and such a massive help.
“We’ve been lucky too to have supportive family and friends and the staff at ward 2 have been great. But it’s impacted hugely on our parents, and family. Suddenly Euan’s not around and visiting in hospital was restricted because of risk of infection, so they went weeks without seeing him.”
News that his tumour has now shrunk by 62 per cent meant he was allowed to leave hospital in time to spend his birthday and Christmas with his devoted family, including dad Steve’s sons Angus, 19, and 13-year-old Ally.
“He is just the most amazing wee boy, he doesn’t complain,” adds Linda. “He has taken everything in his stride and the Beads of Courage scheme highlights how much that has been.
“Since coming home he’s been able to show his friends his beads and tell his story. It’s reminded him of what he’s been through. “
And with more treatment to come – he’ll have three more months of intensive chemotherapy and then follow-up treatments for three more years – his collection of beads are proof that he’s already proved himself tough enough to cope with what’s been before, inspiring him to rise to any challenges that lie ahead.
“We know life will never be the same again,” adds Linda. “So it’s hard looking back. We just have to look forward and get on with it and be positive.
“All we want is to see him recover and get back to school, interacting with his pals and back to normal.”
Scheme ‘gives children some control’
THE Beads of Courage programme was founded by Jean Baruch in 2005 in the US and has now spread across the world. In UK there are 45 hospitals running the programme which is supported by the Be Child Cancer Aware charity.
Under the scheme, children receive beads that spell out their first name and then collect beads throughout their healing for elements of treatment ranging from blood tests and overnight stays in hospital, to more complex procedures such as bone marrow transplant, lumbar punctures and radiotherapy.
The result is a visual representation of their unique treatment, while the idea has also been shown to help decrease illness-related distress and encourage positive thoughts.
Recently the Sick Kids’ programme received £10,000 worth of donations from charitable organisation Spifox Too, sixth-year pupils at Erskine Stewart’s Melville Schools and another from the family of current Sick Kids patient Melissa Crouch, which will ensure future patients at the hospital will also benefit.
Clinical psychologist with NHS Lothian Jenny Tomes says: “Using the Beads of Courage is a wonderful way of helping children to cope with procedures by rewarding their courage, encouraging coping strategies, and providing a focus for discussion of their experiences. “It’s great to see how well the scheme has been received by the children.”
And John Drummond, Chairman of Be Child Cancer Aware, says: “Coming to terms with cancer or haematology disease is a very difficult and confusing time, especially for children. Beads of Courage gives children a tangible way to show what they go through and how brave they’ve been. The programme gives the children the power to take control and should never be underestimated.”
For more about the Beads of Cancer scheme and advice on children’s cancers, visit www.bechildcanceraware.org.