For most eight-year-old boys a Nerf gun or gaming device would be their prized possession, but for Ezekiel King of Kinross it’s a 900-strong string of beads of courage.
Each one representing a procedure, a blood test, a round of chemo… they’re his daily reminder that he’s a childhood cancer survivor.
That ‘six letter word’
Ezekiel – known as Zeek – was just two-and-a-half when his parents were told his slightly swollen tummy was a rare form of cancer.
“Until that moment cancer hadn’t really touched our family,” said youth worker mum Katy-Beth King. “But that six-letter word has the power to change everything.”
It was after bath time one evening in January 2018 when Katy-Beth called for husband Stephen, an offshore chef, to come and look at Zeek’s tummy. Initially thinking it may just be a bit of bloating from constipation she took him to the GP anyway.
Born in September 2015, neither Zeek nor his older sister Isabella had ever had any serious health issues.
“There was no pain, he wasn’t unwell but the doctor organised a scan for us that evening at Ninewells,” said Katy-Beth.
Wilms Tumour
Ezekiel was admitted and the next morning he had his scan. Then dad, Stephen arrived.
“I mean we were definitely nervous,” said Katy-Beth, “The woman who did the scan asked me if I had been told what they were looking for. It was only then I thought, crap, this could be something.
“I burst into tears seeing Stephen.”
“But I don’t think we ever thought it could be cancer,” Stephen added.
Soon after the room seemed to “be filled to bursting with medics”.
Zeek was asleep on Stephen’s chest when doctor’s broke the news that their two-year-old son likely had a Wilms tumour – a rare kidney cancer affecting around 80 kids a year in the UK. With a fairly typical presentation – just like Zeek’s – they were almost certain it’s what they were dealing with.
Growing since he was born
They’d later learn Ezekiel had likely been born with it and while his other kidney was compensating the growth had been hiding behind other organs.
“It was only when it got so big it kind of moved everything else out the way, that we noticed it when we did,” explained Stephen.
Although the doctors spoke in hopeful terms, explaining step-by-step the stages of treatment their son would face, Katy-Beth admits to having a “moment of catastrophising” it.
“I was Googling stories about Michael Bublé’s little boy, and thinking cancer doesn’t happen to people like us.”
Hard news to break
Although the family resolved to keep things as normal as possible for both Zeek and his sister, very quickly helping him become cancer-free was the thing everything else revolved around.
An MRI was scheduled, then a biopsy under general anaesthetic. Chemotherapy to shrink the kidney before surgery, was booked. Then there would be removal of the kidney itself, then a gruelling chemo routine after.
Stephen said: “It was just, right – okay – let’s get on with it. When we got our heads around it we then had to break the news family.”
‘Is Zeek going to die?’
“Making those calls to parents was grim. You say cancer and everyone has their own idea of what that looks like,” said Katy-Beth. “But the hardest conversation, and the one that still makes me emotional, was breaking the news to Isabella.”
Just six at the time she asked her parents if her little brother was going to die.
“We tried to be matter-of-fact, and as hopeful as the doctors were being,” said Stephen.
“But the truth of it, was that we couldn’t say he wouldn’t,” Katy-Beth added.
Though Zeek’s surgeons were confident his condition could both be treated and beaten it wasn’t without complications. Contracting chickenpox could have dire implications and the surgery itself would be long and complicated. An added complication arose when it was revealed the initial chemo to shrink the tumour hadn’t worked in the way they had hoped.
‘Chicks dig scars’
In March 2018, while his parents “walked and walked” around Edinburgh, Zeek went through a nine-hour operation to remove his kidney and attached tumour.
Keeping his spirits high had became tougher and tougher with every needle in his arm. His parents made up games when his hair fell out and ahead of surgery told him “chicks dig scars”.
“At the end of the day it’s not nice to watch your baby suffer. And it can take its toll.
“Stephen and I just resolved never to have a down day at the same time. And to stay as positive as we absolutely could. But I have one memory of a mam at the school gates I think about often,” said Katy-Beth.
“I was surrounded by this relentless positivity but that day I just wanted to say ‘I’m not strong, and I don’t want to be. I want to break for a bit and sit in this hellish situation.’
“When I told this mum she just stopped and said, ‘right, shall we go and get a drink?’ It was just so validating to be seen and heard and not just told it will be all be all right.”
Time to go home
After his operation Zeek remained in intensive care for a week. Covered in wires and monitors his family stayed in a Ronald McDonald House nearby.
His favourite Scatter Cat was never far away.
He then moved to a more “normal” ward before being allowed home.
“He had lost loads of weight by then and was so small and skinny. So when he got back to the house and he asked for toast we knew it was a good sign. He hasn’t stopped eating since.”
The treatment regime, however, wasn’t over.
More than 900 beads
To help Zeek see himself as a “cancer warrior” nurses had given him a set of beads.
Initially comprising his name and a bead to signify his diagnosis, every time he had a treatment another bead would be added.
Light green for X-rays, pink for anaesthesia and black – of which there are now more than 700 – is for blood tests, IV access and injections.
After 27 weeks of chemotherapy, with hospital admissions, fevers sickness, and pain for Zeek, in October 2018, a month after his third birthday, he finished his treatment.
Early Christmas present
An MRI scan was booked four weeks later and on November 16 they were given the “awesome” news that Zeek was all clear.
“It wasn’t that we expected anything different,” Katy-Beth said, “It’s just until they say it you’re thinking ‘what if it hasn’t worked’.”
A month later, a fortnight before Christmas, they gathered their families to ring the bell at Ninewells to celebrate the big news.
Regular scans followed and the family recently received a call to say they had crossed the five-year mark meaning his chance of relapsing is now significantly reduced.
As Zeek approaches his teenage years he’ll be taught how to check his body for himself.
‘Normal is what we longed for’
Looking forward to a lovely Christmas, Stephen says the key to getting through it was resolving to keep things normal.
“We maintained routine as much as possible, we told them off when they needed it as normal – even though we didn’t want to. But we were preparing both the kids for the normality of life returning.
“Christmas, and all days after that, are just other normal days. Normal is what any parent with a sick child hopes for.”
More than 900 beads
Proudly showing of his beads of courage for our cameras his parents believe they’ve helped him transition from being “that kid with cancer” to “a bit of a superhero” for coming through the hundreds of procedures he’s endured.
Now the family are keen to support initiatives specifically geared towards childhood cancer.
While attending clinics at Ninewells Hospital in Dundee, Zeek became friends with another little girl and her parents.
More research is needed
Sadly, Ruby Stewart from Inchture passed away just before her seventh birthday due to a rare tissue cancer.
Her parents Claire and Andy started Be More Ruby to raise funds towards specifically for childhood cancer research.
“It’s actually crazy when you realise most recent drugs developed to help treat children came out in 1985. There’s so much more needing to be done but to find causes and cures,” said Katy-Beth.
Katy-Beth has abseiled to raise funds for Ruby’s charity and plans to keep raising the profile as much as possible.
As for Zeek, he’s taking life all in his stride now and he’s looking forward to seeing his grandparents, “Goosema and Pappy” in Newcastle, where Katy-Beth is originally from.
