This week is World Childhood Retinoblastoma Week.
When the Childhood Eye Cancer Trust e-mails you…it is one e-mail you’re not going to be swiping to the left and deleting.
I personally know one family that had a baby with retinoblastoma and as a result I’m always very alert when it comes to ruling it out during childhood examinations, but many aren’t aware of the signs of this important childhood cancer.
Below is a summary of what to look out for and the real life story of 10 month old Harley and her brave fight against eye cancer.
Squint can be a symptom of eye cancer in children
Two out of three parents aren’t aware that a squint or lazy eye can be a symptom of an aggressive eye cancer in children, according to a new survey.
In a poll of more than 1,000 parents, only 35 per cent identified a squint as one of the signs of retinoblastoma (Rb), a form of cancer that affects babies and children aged under six.
A squint, or turn in the eye as it is also known, is where the eyes point in different directions. It is the second most common symptom of Rb, after a white glow in a child’s eye. Last year nearly 40 per cent of children diagnosed with Rb had a squint.
Today, to mark World Retinoblastoma Awareness Week (13-19 May), the Childhood Eye Cancer Trust is urging parents to get their child checked out if they have a squint.
It is very rare
Patrick Tonks, Chief Executive of the Childhood Eye Cancer Trust, said: “Around one child a week is diagnosed with retinoblastoma in the UK, or 50 a year, so it’s very rare and there is no reason for parents to be alarmed. In most cases a squint is completely harmless.
“However we urge parents to have their child seen by a healthcare professional such as a GP or optician if they have a squint – or if they have any other concerns about their child’s eyes – just to rule out anything serious.”
Early diagnosis is vital
Over 90 per cent of children diagnosed with Rb will survive but more than half will lose an eye in order to stop the cancer spreading. It is a very fast growing cancer, so early diagnosis is vital to save a child’s eyes, sight and life.
The survey, commissioned by the Childhood Eye Cancer Trust and carried out by MMR Research last month, also found that 66 per cent of parents with children aged six or under had never had their eyes checked and 51 per cent had never heard of Rb.
Patrick added: “Rb can be very difficult to detect because children often seem perfectly well and many parents and healthcare professionals have never heard of it. This week is World Retinoblastoma Awareness Week and we are urging all parents to be aware of the symptoms and to have their child checked out if they have any concerns at all.”
“We couldn’t believe she had cancer – she seemed so healthy”
Harley Shevill was just 10 months old when she was diagnosed with Rb in both her eyes. Just weeks later she had her right eye removed to save her life. Since her diagnosis, in March last year, she has also bravely endured:
- 16 general anaesthetics
- 6 rounds of chemotherapy
- 5 surgeries
- 4 rounds of laser treatment
- 4 platelet transfusions
- 3 blood transfusions
The only sign that anything was wrong with Harley before she was diagnosed was a white glow her eyes, seen in dim lighting and in photos when a flash had been used, and a squint.
Her mum Coral Baxter, 25, from Motherwell, North Lanarkshire, said: “When Harley was about six months old we noticed a white reflection in her eyes in certain lighting, but we never really thought anything of it. Then she developed a turn in her eye so we took her to get checked out but were told there was nothing to worry about.
“I googled her symptoms and some information about retinoblastoma came up but I thought it couldn’t be anything that serious as she was so healthy and well.”
A few weeks later, when Harley’s squint hadn’t gone, Coral made another appointment at the GP but cancelled it because she thought she was being paranoid. Then her mum was watching the news on television about a little boy from Scotland who had been diagnosed with Rb, and she called Coral and told her to watch it.
Coral said: “As soon as I saw it, I made another appointment. This time the GP said he would refer us and it would take six weeks. But we pushed for her to be seen sooner and we managed to get an appointment at the eye department of the local hospital that day.
“They told us it could be cancer and referred us the Royal London Hospital, one of two specialist centres for Rb in the UK. A week later we were in London being given the news we had dreaded – Harley had Rb. We knew that day that she was going to lose an eye.”
Coral added: “When she was diagnosed I was totally heartbroken, I thought ‘I’m supposed to look after and protect her, I’m her mum’. I didn’t know how we were going to get through it. But in the end it was Harley who got us through it. She was absolutely amazing.”
Harley, who celebrated her second birthday in April, has to have check ups under anaesthetic every six weeks but she’s doing well and is now making up for the time she lost during treatment. She has just started walking, and loves singing and dancing to musicals.
Coral said: “I have made Harley a scrapbook and a list of all the treatments she has been through so I can show her when she is older what she has survived and how brave she is.”
Harley’s dad Graeme Shevill, 26, added: “Having cancer has never held Harley back. She’s been the exact same girl throughout it all. She was brilliant on the day of the surgery to remove her eye and during all of the treatment she has had since. She has made the whole experience much easier than it should have been for us and she is a true inspiration.”
Thank you so much for reading this and please share with any other parents and healthcare professionals to help educate more people on the signs of retinoblastoma.
Dr Claudia x