As Childhood Cancer Awareness Month draws to a close, Michael Alexander meets a brave Cupar boy who has set up a charity whilst battling leukaemia.
Toby Etheridge sits cross-legged on the floor holding what looks like a giant necklace covered in multi-coloured beads.
However, the 12-metre long thread is no item of jewellery.
It’s a visual guide to the intensive treatment the brave 11-year-old has been undergoing since being diagnosed with leukaemia.
The Beads of Courage charity encourages young cancer sufferers to keep a record of every milestone in their treatment where every bead tells a story of strength, honour and hope
But it’s also a means of allowing the youngsters and their families to feel they are taking control of a tough situation.
“This is Toby’s journey since he started on his treatment, where every bead is a colour and every colour has a meaning,” explains Toby’s mum Alison, 44.
“The white beads are every dose of chemotherapy he’s had. The blues are steroids and clinic visits. Black means he’s had blood taken. Red means that he’s had blood given.
“The yellow is when he’s stayed in hospital overnight. Pink is when he was in theatre.
“The green is when his immune system was shot. And there’s the day he lost his hair. It’s crazy when you see it laid out like this. It shows the intensity of the treatment in less than two years.”
December 12, 2014 is a day the Etheridge family will never forget. As well as being Alison’s dad John’s 80th birthday, it was the day that Toby, then a primary five pupil at St Columba’s Primary in Cupar, was diagnosed with acute lymphoblastic leukaemia.
The first sign of a problem came just a few weeks earlier when Toby complained of pains in his legs – something that his dad Richie, 42,initially put down to growing pains.
But after blood tests and an emergency transfusion, the worst news any parent could hope to receive confirmed that Toby had cancer and needed to undergo further emergency treatment at the Royal Hospital for Sick Children in Edinburgh. It was a shock to the whole family including Toby’s older siblings Jessica, 18, and Samuel, 16.
When news was confirmed by the consultant, Richie admits he “lost it” – particularly when his own father had died from leukaemia just four years earlier.
“It’s a numb feeling. The fear of the unknown. There are no words to explain it,” he says.
Richie then had to break the devastating news in a phone call to his wife who was celebrating her dad’s birthday in London.
“It was an inner shock. It just breaks you down, “ she recalls. “It’s the fear that you might have to bury your child.”
But what struck Richie most was Toby’s response to the news. “Don’t worry dad. We’ll get through this,” the youngster bravely said.
Fast forward 21 months, and Toby has been through months of gruelling treatment. It will be April 2018 before his chemotherapy comes to an end and remission starts.
He now has to take a cocktail of tablets every night and every 12 weeks goes into theatre for a dose of chemo in his spine.
Life long side effects include heart, kidney and liver problems, flat-footed-ness, the risk of childhood dementia and taste bud depletion. He will also be more prone to osteoarthritis.
The youngster has also received help from a child psychologist to “help get the anger out” and to overcome a phobia of needles.
Further heartache has come from the fact that many of the young friends Toby made in the Sick Kids Hospital having since died.
“We’ve seen 16 children go, “reflects Alison – her eyes lost in thought as she recalls the faces of little ones like Rhea, Shannon, Stella and Jak they got to know in the same ward who haven’t made it.
Yet the family – and Toby – remain optimistic as the type of cancer Toby is combatting has a 98% successful treatment rate.
Toby’s ability to smile while he battles leukaemia is remarkable enough.
But what is more astounding is his dedication to helping others facing the same ordeal.
Having raised £20,000 already for children’s cancer charity CLIC Sargent, the youngster, now back at school in primary seven, has set up his own charity.
Toby’s Magical Journey is raising money to support local child and young person cancer sufferers whether it’s provision of a wheelchair, or something to “ease the boredom” if they are bed ridden.
Toby began his fundraising mission by dying his hair purple before having it shaved off in return for sponsorship from friends and family.
Since then events have included Toby’s First Magical Ball in March where guests were treated to dinner cooked by former Master Chef champion Jamie Scott.
Toby’s efforts also won him a Kingdom FM Local Hero Award in August. Toby describes news of his win as “shocking”.
The computer game enthusiast missed several months of school last year, but is back at school full time and enjoys playing with his friends like every other schoolboy.
If his legs gets sore he takes his wheelchair in. And if there are too many germs in the class he has to get pulled out because he is still so immune-system suppressed.
Toby’s dad looks forward to the day he gets the all clear.
But the whole experience has made them realise the importance of childhood cancer awareness month, and the need for more people to add their name to the Anthony Nolan bone marrow register.
