This mom has shared how her five-year-old daughter had a life-saving operation to have an eye removed just 17 days after a tell-tale cancer glow was spotted in a mobile phone photo.
Victoria Hogg took a snap of her little girl Nancy, on December 10 last year after noticing her left eye sometimes looked inwards.
The picture sparked off an intense few weeks, where the little girl was found to have a tumor, diagnosed with retinoblastoma (cancer of the retina), and had her eye removed on December 27.
Nancy and the glow that showed her cancer (PA Real Life/Collect)
“Having taken that quick photo on my phone and being able to show doctors exactly what I had seen has likely saved her life," Hogg said, speaking out during Childhood Cancer Awareness Month this September.
Hogg lives with Nancy, her other daughter Florence, and her partner Sonny Smith.
Hogg explained 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 Hogg's 15-year-old niece noticed that Nancy would occasionally go cross-eyed.
Nancy with Victoria and Sonny (PA Real Life/Collect)
“We didn't think it was anything serious, but soon after, I was brushing her hair in the bath and noticed it myself. Her eye would occasionally turn in towards her nose," Hogg recalled.
“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, she 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," she said.
Trying to appear calm so Nancy didn't get upset, Hogg quickly tried to find out if her girl could see properly.
“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'," she said.
Nancy with Victoria (PA Real Life/Collect)
With her partner working nights, Hogg got Nancy into the car while her nephew stayed with Florence and drove straight to Basildon University Hospital's A&E department, with little Nancy totally oblivious to what was going on.
As it was a Friday night just before Christmas A&E was busy, and they waited a couple of hours before Hogg knocked on a nurse's door and said "can you help me? I think my daughter has cancer."
“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," she said.
Nancy and Florence (PA Real Life/Collect)
“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," she continued.
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 tumor on the back of her eye which had caused some damage to her retina. It looked like retinoblastoma," she said.
Calling anyone affected by #childhoodcancer! Help us make sure that future research is focused on what matters most… https://t.co/Oa4yQy30Wr— CHECT UK (@CHECT UK) 1599729002.0
Retinoblastoma is a cancer which affects around one child in the UK per week under the age of six, according to The Childhood Eye Cancer Trust.
“I asked the consultant 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 tumor grew," she said.
“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."
Nancy post surgery (PA Real Life/Collect)
Eight days later, Nancy had a 45 minute operation at The Royal London Hospital's specialist retinoblastoma centre to remove the tumor.
“Nancy was so smiley all the way through, she put the mask on for the anesthetic herself," she said.
"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.
Nancy post having her eye out (PA Real Life/Collect)
“It was very much like 'This is happening and we need to deal with it'," 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 eye removal," she continued.
“It was an easy choice – why would you leave it in if there is a tumor in it, or it increased the chance of the cancer coming back or spreading into her brain and potentially taking her life?"
It was a tough decision to make.
“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," she said.
With that decision made and the operation booked in for December 27, the family planned a big Christmas.
“It was mayhem. We had a big family gathering with my sister and her family of six staying all weekend, and 18 people on Christmas Day – plus we went to feed reindeers on Christmas Eve," Hoggs continued.
Nancy in hospital before having her eye removed (PA Real Life/Collect)
“We wanted to forget about everything and it ended up being the best Christmas I can remember. Nancy got lots of presents and we got her a Barbie camper-van which she was desperate for. It was expensive, but we wanted to treat her," she said.
“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."
Yes, we know Christmas is a long way off yet... but our CHECT Christmas card competition is now officially open!… https://t.co/XOn4DdDrNT— CHECT UK (@CHECT UK) 1598363043.0
Hoggs and Sonny 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 – 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," Hogg explained.
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.
Nancy and the glow that showed her cancer (PA Real Life/Collect)
“I was so frightened about how she would react. She had been so good, but I knew it was going to hurt her and I was waiting for her to crash," she 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 Hogg was finally allowed to see her.
“She was screaming, I think because she had a second bandage on her head that she had not been prepared for. She seemed to be petrified of it," she recalled.
“They took that off so she had one bandage over her eye and she calmed down."
A few #TeamCHECT places have become available for the Virtual London Marathon on 4th Oct. Runners will have the ent… https://t.co/fZto22n7a1— CHECT UK (@CHECT UK) 1597569436.0
By the next morning Nancy was already rallying.
“She was so much better, sitting up in bed, eating breakfast," she said.
“The hospital was fantastic. They had play therapy for us, where Nancy got to play with toys and do drawings with a fantastic play therapist, and a room for us to stay in before we could take her home."
Great to see @bt_uk Tower supporting #CCAM today #GoldRibbon #ChildhoodCancerAwarenessMonth (photos:… https://t.co/rAOyaSEHFQ— Children’s Cancer and Leukaemia Group (@Children’s Cancer and Leukaemia Group) 1598990830.0
The next day, 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.
Back in their own house, the family hit some unexpected hurdles.
“For the first 24 hours Nancy wouldn't open her other eye and we had to guide her round the house – I think because whenever she tried to open the good one, the muscles in her other one would flicker and it was painful," she said.
“Then there was an incident three or four days after the operation when she had a friend over and we heard both girls screaming as the conformer had fallen out. Nancy was screaming 'My eye has fallen out' which must have been very traumatic."
“We took her to Southend University Hospital who helped us put it back in again, as she was still very sore."
Two weeks after the operation, though, Nancy had bounced back to normal and was ready to return to school and even go horse riding again.
Staff from The Royal London Hospital went into her school, a few days before she went back, to explain to her classmates what had happened to her eye, and Nancy's peers were very supportive.
“She has never come home from school and said anyone has been horrible to her. A few of her friends told her if her eye fell out they would go and get the teacher – they were all very sweet," Hogg said.
Thankfully, Nancy needed no further treatment, and in February she was fitted with a temporary prosthetic eye after a visit to Moorfields Eye Hospital in London.
“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," Hogg said.
“We showed it to her in the mirror and it was like we got our Nancy back. She was smiling and giggling. Even though she had smiled throughout, it felt like her smile was her own again. Her confidence was back."
Nancy is now having check ups every three months and 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," Hogg 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!'"
A useful guide for schools by @CLIC_Sargent for supporting children with cancer during the pandemic.… https://t.co/uXqKV6Fqbw— CHECT UK (@CHECT UK) 1599043995.0
“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 added.
“She's such a cheeky little thing. She's amazing – a real star!"
Now Hogg is working with the Childhood Eye Cancer Trust to encourage parents to be aware of the signs of retinoblastoma.
“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," she said.
“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."
Nancy and Florence with Sonny (PA Real Life/Collect)
“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," Patrick Tonks, Chief Executive of the Childhood Eye Cancer Trust said.
“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."