Inspirational Women of the Year: It's too late to save my son's sight, but I CAN help other children
02:11 GMT, 25 September 2012
the Daily Mail launched our sixth annual Inspirational Women of the Year
competition, in association with the Sanctuary Spa and the charity
Wellbeing of Women.
finalists will be invited to London this November to attend a
glittering ceremony and the winner will receive a 5,000 luxury break.
Use the form below to nominate an extraordinary woman you know.
Here, CHARLOTTE DOVEY talks to one of our nominees…
Campaign: Mother-of-four Katy Bishop with her son Owen who has eye cancer
Two years ago Katy Bishop was given news that would shatter any parent: her 11-month-old son Owen had eye cancer.
‘It was July 12. A Monday. Just thinking about that time makes me well up,’ says Katy, 33, from Petersfield, Hampshire.
As if that wasn’t enough, Katy was later to discover that a delayed diagnosis by doctors, and a lack of awareness of the symptoms on her own part, would have a drastic effect on her baby’s chances of ever seeing again.
Yet despite the personal turmoil, Katy, a mother of four who runs her own cleaning business, has worked tirelessly to ensure other parents and doctors have better information on childhood eye cancer, so other families won’t suffer as hers has.
And thanks to her doggedness, from this month the ‘Red Book’ — the Personal Child Health Record book given to all new mothers — will now carry information on spotting the signs of eye cancer.
The Department of Health, which had originally told Katy it wouldn’t help, has also agreed to put the same information on its NHS Choices Website.
Katy’s nightmare started when Owen was referred to the eye department of the local hospital.
He’d been wearing glasses since he was five months old to correct what had been diagnosed by an eye specialist at the same hospital as a ‘squint’.
‘Owen’s optician said the latest referral was routine and there was nothing to worry about,’ says Katy, who has three other children, Gracie, six, Isabelle, seven, and Toni-Marie, 11, with her husband Scott, a gas technician.
Ten weeks later, she took her son to his appointment. After shining a light in his eye, the doctors said he needed a scan.
And it was then that they found a tumour in the centre of Owen’s right eye, so large that the retina, the light-sensitive lining at the back of the eyeball, had become detached and he had lost his sight in it.
They’d also found three small tumours in his left eye, although he could still see out of it. Owen had retinoblastoma — cancer of the retina — in both eyes.
‘I remember grabbing Scott’s hand tightly and managing to ask only one thing: “Am I going to lose my little boy”’ says Katy.
The consultant stressed this would be rare and that they had a very good treatment plan in place.
But Katy barely took any of this in.
'If I'd known to look out for them – in the same way you look out for red spots that don't fade under pressure in meningitis – I could have pushed for more to be done,' said Katy
‘We drove home in a daze, then I went onto the internet, desperate for some sort of information.’
Retinoblastoma can affect one or both eyes and, in about 45 per cent of cases, is caused by a faulty gene. It affects between 40 and 50 children every year, generally under the age of five.
Left untreated it can kill — with some 2 per cent of affected children dying from it every year.
But reading further, Katy discovered something that stopped her in her tracks.
‘There are two exceptionally common symptoms,’ says Katy.
‘One is a squint, which we knew Owen had. The other is the pupil of the eye reflecting white in flash photographs, rather than red. This is because the flash reflects off the tumour’s white surface, rather than off healthy red blood vessels.
‘At that point my memory flashed back to the very first time we visited the eye specialist, when Owen was five months.
'We went because Owen had developed a squint, but also in quite a few photos Scott and I had taken, his right pupil appeared light in colour, rather than brown.’
Katy made a point of mentioning this to the specialist but it was dismissed.
‘Not only had there clearly been a terrible error of judgment made, but why had I not heard about these ridiculously simple “red flag” symptoms,’ she says.
‘If I’d known to look out for them — in the same way you look out for red spots that don’t fade under pressure in meningitis — I could have pushed for more to be done.’
As with all cancers, a delayed diagnosis can have a major impact, explains Mr M. Ashwin Reddy, a consultant paediatric ophthalmologist at Barts and The London NHS Trust and Moorfields Eye Foundation Trust Hospital.
‘The difference an early diagnosis can make in the outcome of retinoblastoma can be vast.
In some cases, the longer it’s left, the more risk there is of intensive treatment such as chemotherapy and an eye having to be removed — even the cancer spreading outside the eye.’
Thanks to Katy's doggedness, from this month the 'Red Book' will now carry information on spotting the signs of eye cancer
The smaller tumours in Owen’s left eye — fortunately on the edge of the retina, so only affecting peripheral vision — were small enough to treat with cryotherapy, where a pen-like probe is placed near the tumour and cold gas shot through it to freeze the area.
But for his other eye Owen needed six courses of intravenous chemotherapy.
‘He was sick and lost his hair, but little Owen, aged just nearly a year, was so very strong, so I knew we had to be, too,’ says Katy.
After the fourth chemo session the larger tumour had shrunk so Owen’s right eye was not removed, although his vision in that eye will never return.
Although Katy was relieved, her anger bubbled to the surface and she bombarded the Department of Health with letters campaigning for better public awareness.
But the responses were lukewarm. In essence, they didn’t want to worry pregnant mothers.
‘I also set up an eye cancer awareness page on Facebook and contacted local newspapers to tell Owen’s story,’ she says.
Katy’s aim soon became to get information about retinoblastoma into the Red Book. ‘Every detail, health check, weight, immunisations, is noted,’ says Katy.
‘But, more importantly, at the back there is also information on spotting the signs of serious illnesses such as meningitis.’
Katy contacted her local MP and then the Childhood Eye Cancer Trust. Working closely with Katy, the charity launched a petition to persuade the Department of Health to make the change.
She also joined Twitter, targeting everyone and anyone to join her campaign, and by December around 2,000 people had signed the charity’s online petition.
‘There were times I didn’t think we’d get anywhere with it, particularly when I first contacted the Department of Health and they really showed no interest.’
But she didn’t give up and in June this year — 20 months after Katy started campaigning — she got the news she’d hoped for.
‘My changes to the Red Book were deemed important enough to be accepted with immediate effect,’ she says.
‘And at the beginning of this month the Department of Health agreed to put the information on their NHS Choices Website.’
Mr M. Ashwin Reddy says: ‘Giving parents the information on how to spot early signs is vital and will absolutely change lives.’
Joy Felgate, chief executive of the Childhood Eye Cancer Trust, says: ‘Thanks to Katy’s incredible efforts, other parents are now equipped to seek help sooner.
‘We think she’s marvellous! And all of this despite dealing with Owen’s diagnosis and everything else going on in her life.’
Katy’s next target is medical professionals.
‘Back in July 2010, I wrote a complaint to the hospital who’d dismissed Owen’s symptoms.
'They did, eventually, acknowledge mistakes had been made and agreed to change their referral procedure, but we now need to make sure this doesn’t happen again.’
Two and a half years after his diagnosis, Owen’s life is starting to become more normal.
‘Yes, Owen’s lost the sight in one eye and only has forward vision in the other, but he’s now a thriving, beautiful, happy three-year-old,’ says Katy.
‘More importantly, doctors say that, provided he has no more relapses, they’re hopeful he’ll thrive.
‘Nevertheless, I wouldn’t wish the past two years on anyone.
'But knowing I’ve done something to help prevent it happening to other people means something positive has come out of the horror of a cancer diagnosis.’
Childhood Eye Cancer Trust chect.org.uk