The mother of a teenager with incurable cancer has described her family’s struggle after she juggles work to spend time with him.
Leon Rendle, 15, has incurable cancer, but mother Nicky won’t get paid time off to be with her son.
At just 15 years old, Leon should have all the time in the world to do all the things he wants to do.
Lazy days playing games on his Xbox, Saturday morning football, watching Hibs and his favourite television shows, just hanging out with his friends, or getting his head down at school for fourth year exams and work experience.
Time, though, is the one thing he doesn’t have.
Just a few weeks ago, hundreds cheered on Leon as he carried the Queen’s baton past Meadowbank, having been chosen for his courage after a long battle against cancer which he had finally seemed to have won.
What many who saw him run – with a dazzling broad smile on his face throughout – couldn’t possibly know was that days before Leon and his family had been given the worst news possible.
Not only was the cancer back, this time it is incurable.
Faced with their own race against the clock, Leon’s family today paid tribute to his incredible bravery and spoke movingly of their hopes to spend as much time as possible together before it’s too late.
But because mum Nicky doesn’t get paid for the time she takes off work, the family has faced a financial nightmare to spend as much time as possible with Leon and still make ends meet.
Family and friends have rallied around, raising nearly £4000 through a Justgiving page set up by a relative to help them cover not only the extra costs of Leon’s hospital stays and treats to make his life more comfortable, but the typical expenses of day to day life.
And there are hopes that a fund – tentatively named Leon’s Light – might eventually be set up, not only to get Leon’s family through the nightmare months ahead but to help other families like them in the future.
“We don’t know exactly how much time Leon has left, it’s not a question we want to ask his consultant,” says Nicky. “We are taking it step by step and trying to be positive.
“But every moment we have is precious. All we want is to be with Leon as much as we can. Parents should not have to make a decision between spending time with your very sick child or paying your bills.”
Nicky, 42, works as a bookbinder for Dalkeith-based diary firm Letts. But because she hasn’t worked there for more than two years, she doesn’t get paid if she takes time off.
“My work has been fine, but I’m not entitled to any sick pay. Besides, it’s not me who’s sick, it’s Leon,” she adds.
“You don’t realise until you’re in this situation how much time off you need to take for hospital visits and treatment. We want to get Leon things he needs and wants – for example, clothes that are soft and won’t irritate his skin tend to be expensive. It’s a horrible situation to be in.”
Money worries should be the last thing on the family’s mind as they come to terms with the devastating diagnosis.
Leon has Ewing’s sarcoma, typically a rare bone cancer which affects fewer than 30 children in the UK each year. It is even rarer for it to be found – as in his case – in soft tissue.
He had chemotherapy, surgery and a stem cell transplant. He went into remission in October before the family received the devastating news in May that the cancer was back, and was incurable.
“I keep saying ‘If only we could win the lottery, I’d set up a charity to help people in this situation’ – working class people whose kids are seriously ill and who want to spend time with them but can’t,” says Nicky. “Even though your child is ill, you still have to pay the bills.”
As news of the Leon’s terrible diagnosis sank in, Nicky, husband James, 42, Leon and his little sister, Chloe, ten, prepared to jet off for a pre-arranged holiday visiting relations in Canada, only to be hit by a further financial nightmare .
“We went to organise insurance and were quoted £12,000 for a fortnight for Leon,” says Nicky. “We couldn’t believe it.”
Eventually charity CCLASP, which supports families of children with life-threatening conditions, tracked down a company which agreed to insure terminally ill Leon for a fraction of the original quote.
While in Canada, Hibs fan Leon was treated to a surprise meeting with England international and Toronto FC striker Jermain Defoe, who agreed to a kickabout before one of his matches after hearing of his plight.
His delight at meeting the star and the player’s emotional tribute to him is captured on a deeply moving video which has been posted on YouTube. In it, the courageous Leith Academy pupil smiles and jokes, but the dark circles under his eyes and hair loss are proof that he is desperately ill.
“It’s horrible, something no-one should have to go through,” he says to the camera. “I thought I’d defeated it but in the last month I found out I have it again and it’s untreatable.”
As every moment becomes even more precious, Nicky has urged Leon to consider creating his own bucket list of things he’d love to do before it’s too late. Among them is a trip to Deep Sea World to swim with sharks, which thanks to CCLASP is already on the cards.
“You try to keep going and not let him see you down or upset,” admits Nicky, who is also trying to ensure Chloe, who goes to Hermitage Park Primary School, copes with the nightmare ahead.
“I cry myself to sleep in bed at night – as long as he doesn’t see me upset.
“But it’s so hard to get your head around. It’s so cruel, he only had nine months in remission, and now there’s nothing anyone can do.”
The family, of Hawkhill, Lochend, has been touched by the remarkable fundraising efforts of family and friends who are determined to help them spend as much time together as possible.
“There are wonderful people out there who have helped us. A friend whose kids go to school with Leon has just raised £300 with a fundraising night out in Cockenzie which is really touching,” says Nicky.
Among those to put their own troubles aside to help is Pam Neilson, mum of Kai Laidlaw, who underwent surgery to remove his eye as part of his leukaemia treatment.
“I was so touched when she told me she had a giant teddy, one of two given to Kai, and she wanted to run a ‘guess his weight’ game to raise money for us,” adds Nicky.
“We’re just a normal family, we go out to work and usually spend most of what we earn just keeping on top of the bills.
“James works as a joiner for Sharkey’s and they’ve been great, he’s been paid when he’s needed time off and that’s been a huge help. But it’s very hard for working parents.
“I’d love to do something like set up a fund to help others in the same position as us. I’m thinking it could be called Leon’s Light – to show that there is light at the end of the tunnel.”
RARE DISEASE AFFECTS 30 KIDS A YEAR
Ewing’s sarcoma is the second most common primary sarcoma in children and young people.
It most commonly occurs in the long bones, ribs, pelvis and spine. Extremely rare, fewer than 30 children in the UK develop Ewing’s sarcoma each year. It usually occurs in the teenage years, and is more common in boys.
It’s not known what causes it, but it may be linked to rapid growth spurts. Although Ewing’s sarcoma is a type of bone cancer, it can also occur very rarely in the soft tissues.
Nicky remembers how Leon first showed signs of illness in December 2012 when he complained of feeling ‘light headed’. “By the end of January he came home from school and said he felt like had been kicked in the groin but there was no explanation for it.”
Doctors at first suspected appendicitis and he was taken into theatre. Later the family was told the surgeons had found a cancerous mass. Joy when he went into remission turned to despair in May when a routine scan revealed the cancer was back.
“The tumour is in his abdominal wall and two lymph nodes,” says Nicky. “It’s gone from there being nothing in October to being quite large. It can’t be cut out because it’s surrounding the blood vessels. But throughout it all Leon has been a star, he is absolutely amazing.”