Julie Currie discovers how a parents’ support group founded in Scotland is helping to raise awareness of childhood cancer.
Landmarks across Scotland will be glowing gold next month for Childhood Cancer Awareness Month.
And it’s all thanks to a small band of parents who met via a Facebook support group while facing the worst news of their lives.
Set up five years ago, group members were initially successful in ensuring the awareness month moved from December to September.
Last year, they contacted well-known landmarks the length and breadth of the country, asking them to Glow Gold in September to help raise awareness.
And this year, the campaign has taken off with a myriad of landmarks signed up to take part.
It’s a subject people often shy away from.
After all, nothing could prepare any parent for hearing the words “your child has cancer”.
That’s a fact My Kid Has Cancer Facebook support group founder Julie Yates and her husband Paul know only too well.
For their lives were turned upside down in January 2012 when their then 12-year-old daughter Niamh was diagnosed.
For two months, Niamh’s mobility had been getting progressively worse.
Julie (42), of Kinross, said: “She was diagnosed with an undifferentiated sarcoma of the spine (bone cancer).
“By this stage she could barely walk and was in constant pain.
“Only around four people per year in the UK get this type of bone cancer so it’s rare. Paul worked out that the chances of getting it were one in 14 million – the same chance of winning the lottery at that time.
“We know which one we’d have preferred.”
As the tumour was pressing on nerves to her lower body, Niamh had emergency surgery to prevent possible paralysis a week after her diagnosis.
This was followed by five cycles of chemotherapy but it made little impact on the residual tumour.
So the family – including the couple’s son Conor who is now 11 – relocated to America for three months to enable Niamh to receive proton beam radiotherapy in Jacksonville, Florida.
At that time, the treatment was not available in the UK – Christie Hospital in Manchester is gearing up to be the first to introduce it.
Niamh’s treatment ended in September 2012 and there has been no evidence of the disease ever since.
Indeed, the 17-year-old’s final MRI scan was last week and she is expecting the results this week.
Julie said: “End of treatment is certainly not the end of problems but Niamh overcomes every hurdle with tenacity, humour and a determination to succeed.
“She missed well over a year of high school and only ever went back part time but she gained two As and three Bs in her Highers as well a C in Advanced Higher history.
“She has an unconditional place to study history at Stirling University and is just about to start an HNC in social sciences at Fife College in her gap year.
“Niamh is doing well and we’re all very proud of her and what she has achieved.”
Just after returning from Florida, Julie founded the Facebook support group My Kid Has Cancer.
It started with just 20 members and now has almost 1800 from Scotland, the UK and further afield.
Julie launched the group due to a lack of available support for parents.
“A friend of mine had been made to feel unwelcome in a group because her story had become sad and not positive,” she said.
“So my idea was to create a safe haven where parents could vent, chat, laugh, cry, ask advice and talk about anything – secure in the knowledge that it would only be parents and guardians of cancer kids in the group.
“Support wherever you are in the journey, whatever your story – no judgement.
“It’s pretty simple but it works and there are now almost 1800 members, with more joining every day.
“Children’s cancers are certainly not as rare as we are led to believe, judging by the amount of requests to join.
“And the feedback we get shows that, for many, the group is a lifeline in a world where it’s hard to understand the complexities of being a parent of a kid with cancer...unless you’ve been through it yourself.”
This year the Glow Gold campaign has been spearheaded by a fellow Scot, grandmother Pat Hayes from Glenluce.
Pat’s daughter Rachel received massive support from the group when her son, Thomas Reynolds, was finally diagnosed in 2010.
Rachel and Pat also spent ten weeks in Jacksonville as Thomas endured eight weeks of proton beam radiotherapy.
The then three-year-old had cancer in his sinuses so he needed the specialist, targeted treatment offered in the United States.
Pat was so impressed with the support Rachel received from My Kid Has Cancer that she launched a spin-off Facebook group, Grandparents of Cancer Kids: It’s Our Journey Too.
She said: “It’s all about supporting your child who has a child with cancer.
“You can really feel quite helpless watching your child and grandchild going through treatment.
“So having other people to talk to who are in the same boat can make a world of difference.
“There are now more than 400 people in the group worldwide – and I believe that’s simply a drop in the ocean.
“For while certain childhood cancers are very rare, the number of children being diagnosed is not – 11 children are newly diagnosed each day in the UK.
“People just don’t realise how common it actually is.
“That’s why our support groups and the Glow Gold campaign are so important.
“We need to raise more awareness of childhood cancer to hopefully bring in more funding for research, which in turn could lead to earlier diagnoses and better prognoses for children.”
Earlier diagnosis is something Pat is particularly keen to see.
For Thomas may not have been with us today – had it not been for a coughing fit.
Pat explained: “Thomas was misdiagnosed for months. He was getting nose bleeds and he was waiting for an ENT appointment.
“But he had a coughing fit one night and coughed out something marble-sized.
“Rachel took him and it to the local hospital and they sent it off for analysis.
“He had actually coughed up a piece of his tumour. If he hadn’t had that coughing fit, he might not be here.”
Within three weeks of his diagnosis, Pat, Rachel and Thomas were on a flight to Florida. Now 11, thankfully Thomas is cancer free.
However, just like Niamh, successul treatment was far from the end of the story.
Pat added: “Rachel, her husband Tommy and his sisters Natasha (9) and Leigha (5) count their blessings every day.
“But Thomas is still dealing with the aftermath.
“He has to get daily growth hormone injections until he is 21 because radiotherapy affected his pituitary gland.
“He’s also had cataracts, occupational therapy for motor skills and is in pain because chemo has affected his bone density.
“We’re very lucky to have Thomas but every day is a struggle for him – it doesn’t end when treatment stops.”
Buildings grasp golden opportunity to spread the word...
The Glow Gold campaign has received support the length and breadth of Scotland.
Among the buildings taking part this year are:
Marischal College, Kings College, the City Council, His Majesty’s Theatre, Music Hall and the Arts Centre in Aberdeen; the Botanical Gardens, Camera Obscura, the Playhouse, Usher Hall, Mary King’s Close and The Dome, in Edinburgh, along with the Scottish Parliament and the city’s airport, university and zoo; and Glasgow Cathedral, Filmhouse, the Science Centre, Queen Elizabeth University Hospital and Kelvingrove Museum and Art Gallery.
On September 1, the Royal Scottish Academy will also be illuminating Queen Victoria on its building in Princes St.
A number of castles will be doing their bit too, including Eilean Donan on the Kyle of Lochalsh, Inverness, Dunnottar Castle in Stonehaven, North West in Stranraer, Lochinch in Dumfries and Galloway and Stirling Castle.
For more information visit the Facebook page GlowGoldSeptember.
My Kid Has Cancer and Grandparents of Cancer Kids are solely for people who are on a cancer journey with their child or grandchild. Visit www.facebook.com/groups/mykidhascancer or grandparentsofcancerkids.