There was a distinctive white glow over her left pupil – something the 29-year-old knew could be a tell-tale sign of eye cancer.
The mum-of-two, from Brentwood, Essex, tried to find out if Nancy could see properly and it quickly became clear that she was struggling.
Trying not to panic, she rushed her to A&E where tests would later confirm her fears – Nancy had retinoblastoma, a type of cancer of the retina.
Just 17 days later, on December 27 last year, she had an operation to remove her left eye and prevent the cancer from spreading.
Speaking out during Childhood Cancer Awareness Month this September, stay-at-home mum Victoria said: “Having taken that quick photo on my phone and being able to show doctors exactly what I had seen has likely saved her life.”
Warning sign
Victoria, who has another daughter Florence, three, with her partner Sonny Smith, 29, a construction worker with Crossrail, said they had not noticed any issues with Nancy’s sight, and she was progressing well with her reading and writing in her school reception class.
But then in early December last year, her niece pointed out that Nancy would occasionally go cross-eyed.
“We didn’t think it was anything serious, but soon after, I was brushing her hair in the bath and noticed it myself,” she said.
“Her eye would occasionally turn in towards her nose.
“After she got out of the bath, I got my phone out to take a photograph to try and confirm what I was seeing because it wasn’t always there.”
But looking at the picture seconds after taking it, Victoria was shocked.
“I remembered reading something on social media saying that taking a picture with a flash and looking for a glow over the eye can show cancer.
“There was a massive glow over her left pupil, and I immediately panicked.”
Trying to appear calm so Nancy didn’t get upset, Victoria quickly tried to find out if her girl could see properly.
There was a massive glow over her left pupil, and I immediately panicked
Victoria Hogg
She said: “I covered her bad eye and asked her to identify some household objects like a shoe and a red pencil, then covered her normal eye and asked the same and she shook her head and said ‘Mummy I can’t see it’.”
With her partner working nights, Victoria bundled Nancy into the car and drove straight to Basildon University Hospital.
As it was a Friday night just before Christmas, A&E was busy and they waited a couple of hours before Victoria knocked on a nurse’s door and said ‘Can you help me? I think my daughter has cancer.’
The mum said: “I showed her the photograph and she was amazing.
“She got the consultant, who said although they were not specialists, they would be working on the presumption she had an eye cancer.
“It was a blur, I remember going outside to meet my partner and I just collapsed in sobs of tears. I told Sonny and he broke down.
“But we picked each other up and went back inside, knowing we had to be strong for her.”
The following day the couple took Nancy to the ophthalmology department at Southend University Hospital for eye tests and an ultrasound.
“Within a couple of hours they said she had a large tumour on the back of her eye which had caused some damage to her retina.”
The consultant said it looked like retinoblastoma – a type of eye cancer which affects around one in child a week in the UK, usually under the age of six.
What is retinoblastoma?
Retinoblastoma is a rare type of eye cancer, that typically affects kids under the age of five.
Between 40 to 50 kids in the UK will be diagnosed each year.
And while distressing, more than nine in 10 patients will be cured.
The cancer can affect one or both eyes.
What causes the disease?
In some cases a child is born with a mutation in the retinoblastoma gene, they inherited from one of their parents.
In other cases this genetic mutation can happen in the early stages of development in the womb.
This gene is known as the RB1 gene, and most with a mutation of RB1 will be diagnosed with the disease.
Around four in 10 cases of the disease are inherited.
In the remaining 60 per cent of cases, experts do not know what causes the disease.
What are the symptoms?
Most kids with the disease will seem well.
Two common signs that parents first notice are:
– the pupil looks odd
– a squint
The pupil may appear white, like a cat’s eye that is reflecting light.
The child may also have problems with their vision.
In other cases the eye may be red and inflamed.
How is the disease treated?
Smaller tumours can be treated using laser therapy, cryotherapy (freezing treatment) or thermotherapy (heat treatment) to destroy the tumour.
Larger ones will need surgery, chemo and radiotherapy, or a combination of the treatments
Victoria said: “I asked how long she had not been able to see out of her eye, but they couldn’t say.
“They said it wouldn’t have happened quickly but would have deteriorated over a period of time as the tumour grew.
“We will never know how long it was there for and at what point she started losing her sight.
“That’s the worst part, because you think, ‘Did I miss something?’ But she was fine, she was doing well at school, and running round like a normal four-year-old.”
Eight days later, Nancy had a 45 minute operation at The Royal London Hospital’s specialist retinoblastoma centre to remove the tumour.
Victoria said: “Nancy was so smiley all the way through, she put the mask on for the anaesthetic herself. That was the heartbreaking thing.
“I was expecting her to be a little bit frightened and unsure of what was happening, but she quite happily walked herself down to theatre with a big grin on her face.”
A biopsy confirmed the retinoblastoma diagnosis and the family were given the option of having Nancy’s eye removed, or using a couple of types of chemotherapy to try and blast the remnants of it.
‘Easy choice’
Victoria said: “She could have kept her eye, but it would have been for purely cosmetic reasons as she would never have got her sight back, so we decided to go ahead with the removal.
“It was an easy choice – why would you leave it in if there is a tumour in it, or it increased the chance of the cancer coming back or spreading into her brain and potentially taking her life?
“There was a chance if we didn’t, she would need it removed in the future, and the thought of her having to have it done as a teenage girl when it would be far more traumatic for her.”
With that decision made and the operation booked in for December 27, the family planned a big Christmas.
“We hadn’t told her that she was having her eye out, as we wanted her to enjoy Christmas. There was no need for her to know at that point,” she said.
At home on Boxing Day evening, the couple showed Nancy a cuddly dinosaur with a removable eye that they had been given by the hospital to help prepare her for the operation.
“We used the toy to show her how her eye was going to be removed and that they would put another one in and put a bandage over her poorly one,” she explained.
She asked if she had bugs in her eye because that’s what she would say if she had a cold
Victoria Hogg
“She asked if she had bugs in her eye because that’s what she would say if she had a cold – that she had bugs in her nose – so that felt like the easiest way to explain what was happening.
“She took it amazingly well, which was the hardest things because as a four year old, she didn’t really understand.”
During the three-hour operation Victoria and Sonny waited anxiously in hospital waiting room with their parents.
And afterwards, with only one parent allowed in to see Nancy in the recovery ward, Sonny went to their little girl’s bedside.
Victoria said: “Sonny sent me a picture of her lying in bed with all the bandages sleeping and I just broke down.
“I thought, ‘That’s my little girl lying there and she has cancer.’”
A couple of hours later, Nancy was taken to the ward and Victoria was finally allowed to see her.
Before being allowed home, Nancy had a temporary conformer fitted, which slots in like a contact lens to hold the shape of the eye socket and allow the lids to blink over it.
Staff from The Royal London Hospital went into Nancy’s school to explain to her classmates what had happened to her eye before she went back.
“She has never come home from school and said anyone has been horrible to her,” Victoria said.
“A few of her friends told her if her eye fell out they would go and get the teacher – they were all very sweet.”
In February, Nancy was fitted with a temporary prosthetic eye after a visit to Moorfields Eye Hospital in London.
Victoria said: “It’s a bit like picking an eye off a shelf – they try different shapes and sizes and give her one that matches as best as they can.”
Road to recovery
Nancy, who turned five on June 24, is now having check ups every three months.
Following delays caused by the Covid-19 pandemic, she is due to be with fitted with a permanent artificial eye next week which should not need replacing.
“We’re so happy with the eye she has now. You can’t tell it’s not real unless you’re at her eye level looking at it directly when you can see it doesn’t quite focus,” Victoria said.
“She’s completely normal with it. She loves to make little jokes too. Her dad asked her to get something from the bedroom and she came back and said ‘I can’t see it, You should ask someone with two eyes!’
“We want her to be able to make a joke about it, so as she gets older and if she does get comments, she will know how to handle it. She’s building up her resilience.
“She’s such a cheeky little thing. She’s amazing – a real star.”
Now Victoria is working with the Childhood Eye Cancer Trust to encourage parents to be aware of the signs of retinoblastoma.
She added: “Parents don’t think of their child’s eyes until they take them to the opticians for an eye test.
“If it wasn’t for my niece mentioning that she’d briefly seen Nancy go cross-eyed, she would probably still have cancer.
“People need to be more aware of the signs – a white glow in the eye, not being able to see properly with one eye covered and any sign of a squint.
“People think they’re wasting their doctor’s time, but they’re not. Just go because it may turn out to be something serious.”
Patrick Tonks, Chief Executive of the Childhood Eye Cancer Trust said: “Retinoblastoma is rare, and symptoms can often be quite subtle, and children often seem well in themselves which can make it hard to diagnose.
“Thanks to Victoria’s quick thinking and recognition of the signs, Nancy was able to be diagnosed and treated immediately.
“September is Childhood Eye Cancer Awareness Month, and we’re raising awareness of retinoblastoma symptoms – the most common being a white glow in the eye in certain light and a squint.
“An early diagnosis can help save a child’s sight, eyes and life.”
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