Toddler’s eye cancer dismissed by GP on video call who ‘couldn’t see what we were seeing’
This Christmas, Hayley and Shaun Heelbeck will be filled with relief that their little girl Noëlle is here to open her presents.
Six months ago, the toddler was diagnosed with a rare form of eye cancer – which was detected after her parents noticed one of her pupils looked odd.
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The youngster’s symptoms were initially dismissed by her GP – but thankfully her parents took her to a pharmacist, who told them to take her straight to A&E and she was promptly diagnosed with retinoblastoma.
The illness has left the youngster, who turns two next month, blind in one eye. Her mother and father are relieved she has finished chemotherapy just in time for the festive period so they can enjoy it.
They are speaking out to raise awareness of the condition, which affects young children, usually under the age of five. Around one child a week is diagnosed in the UK.
Told to get back in touch if it got any worse
Mr and Mrs Heelbeck, from Manchester, sought advice after noticing one of Noëlle’s pupils was much bigger and darker than the other.
They had a video appointment with their GP, who told them to get back in touch if it got any worse – but her worried parents went to a pharmacist for a second opinion.
Hayley and Shaun are glad their toddler’s chemotherapy had ended (Photo: Hayley Heelbeck)
Hayley, 31, said: “Noëlle is such a happy, healthy child that I didn’t think much of it at first. A couple of days later though Shaun mentioned it too and I made a GP appointment the following day.
“By video call the doctor couldn’t see what we were seeing. By this point I was getting worried, so I called 111 and was advised to take Noëlle to a local pharmacist. The pharmacist looked into her eye and we could tell immediately that something wasn’t right. He said that her pupil wasn’t reacting to light.”
At A&E that evening, Noëlle’s mother, who was pregnant, was forced to stay in the car due to Covid restrictions. The tot was referred to Birmingham Children’s Hospital, one of two specialist centres for retinoblastoma in the UK, where the diagnosis was confirmed a week later.
Hayley said: “I felt sick, utterly sick. There is so much tragedy around cancer that you don’t always hear about the positive stories and successful treatment. All I could hear was ‘it’s cancer’. It was the worst week of our lives.”
If it’s picked up early, retinoblastoma can often be successfully treated. Most are, and more than nine out of 10 children with the condition are cured, according to the NHS. They can be difficult to treat once they have spread.
The cancer can affect both eyes, when it’s usually diagnosed before a child is one. If it affects just one eye, it tends to be diagnosed later, between the ages of two and three.
Symptoms of retinoblastoma
According to Cancer Research UK, two common signs that parents first notice in their child are that:
The pupil looks oddThey have a squint
The pupil might look white, like a cat’s eye that is reflecting light. Sometimes this is noticed on photos when a flash is used and the pupil appears white rather than the typical red colour.
The child might not be seeing as well, or the eye might be red and inflamed. Children do not usually complain of any pain.
A GP should refer your child to an eye specialist if the pupil of the eye looks white instead of black. Your child should see this specialist within two weeks of the referral.
Noëlle ‘just gets on with it’
Noëlle – named in honour of the family’s favourite time of year – was sick with the treatment initially (Photo: Hayley Heelbeck)
Next came good and bad news: it was quickly established that Noëlle had lost the sight in her right eye but the cancer was contained there.
She endured six rounds of chemotherapy as well as monthly laser treatment.
Hayley said: “The first round was the worst as she developed an extremely sore mouth and gums and she couldn’t eat. But it did get better. She has a week to ten days of sickness immediately following each treatment but she has remained happy and positive throughout it all. She just gets on with it.”
Her parents said only one of them being allowed to go to hospital with her has been “tough”.
“As a parent, the hardest thing is sitting in a hotel across the road from the hospital while the other is in the doctor’s room waiting to hear whether the treatment is working,” added Hayley. “You desperately want to be together, but you have to face it alone.”
Fundraising ‘gave me something to focus on’
Noëlle – named in honour of the family’s favourite time of year – had her final chemotherapy session in November and will need to continue having laser and regular check-ups. It’s a double celebration for the family as they have just welcomed new baby Ember.
Hayley said: “We’re big fans of Christmas in our house and I can’t wait for Noëlle to enjoy it. She’ll be two in January and although she’s still a bit young to understand what’s going on, she’ll love the excitement. We are just so ready to put the last six months behind us and enjoy the run up to Christmas Day without the ordeal of Noëlle’s treatment. With Ember now here too, we can really enjoy this special time as a family.”
Throughout Noëlle’s treatment the Heelbecks have been fundraising for the Childhood Eye Cancer Trust, which supports families affected by retinoblastoma, raising £12,000 through Shaun completing the “Great Noëlle Run” – 13 half marathons in 13 weeks.
An expert has urged parents concerned about their children’s eyes to get a face-to-face examination (Photo: Hayley Heelbeck)
Shaun, 33, said: “The charity was there for us when we needed it and we wanted to give something back. The challenge gave me something to focus on and helped me to process everything that was going on. Noelle has been smashing it every week when I take her for treatment and she has inspired us too, she’s my hero.”
Patrick Tonks, chief executive of the Childhood Eye Cancer Trust, warned that, while it’s important for parents to remember that retinoblastoma is extremely rare, if you have concerns it’s always best to have your child’s eyes checked out in person by a health professional.
“Please don’t put it off because of Covid, get your child seen as soon as possible,” he said.
“Retinoblastoma has one of the best survival rates of all childhood cancers but early diagnosis is vital to saving a child’s eyes, sight and life.”
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