But after the bright circle continued to appear in Evie’s right eye in more snaps, Danielle, 30, panicked and made an emergency appointment with her GP.
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Tests showed the white light was actually a warning sign and Evie was diagnosed with retinoblastoma, a rare cancer of the retina, aged just 11 months.
She is now at risk of losing her eye, and mum Danielle, a former NHS recruiter from Surrey, is speaking out to raise awareness so other parents know what to look for.
Danielle said: “I was sat beside Evie as I fed her lunch one day and she watched Miss Rachel on the iPad.
“I thought I saw a cloudy eye or a slight glaze in her eye.
“I wiped her over as I thought she’d picked up food and rubbed it in her eye. But it was still there, so I took another pic.
“But as I examined the photo, I saw a white ring glowing around her right eye.
“I thought it was the flash so I took more pictures, but started to worry when the ring appeared in every photo.
“I’m glad I listened to my gut instinct because that photo led to the diagnosis of an 11mm tumour and if I hadn’t taken it, she might have needed to have her eye removed.
“We’ve had months of an emotional roller coaster and it’s not over yet, but if I can stop this from happening to even just one other family, I need to speak out.”
‘ROLLER COASTER’
When Danielle saw the white glow in now one-year-old Evie’s eye in January, she took to Google for advice.
But was left panicked when she read it could be cancer.
She contacted her GP who saw Evie the same day and sent her for an urgent referral with an ophthalmologist.
Danielle said: “I showed the GP the pictures and they ran a red reflex test where they shine a light in the eye and a normal eye reflects back red.
“Evie’s eye reflected back white and I now know that the white glow is the tumour reflecting back at you.
“They tried to put my mind at ease and said it could be cataracts or something else.
“But I had a sinking feeling it would be bad news when we were referred for another appointment.”
Within days Danielle took Evie to St Helier Hospital, where they did an ultrasound scan, which revealed a mass tumour and calcium deposits, suggesting cancer.
Then a further appointment at Royal London Hospital confirmed Evie’s diagnosis of Unilateral Retinoblastoma graded D.
The rare form of cancer is diagnosed in 40 to 50 children and babies every year in the UK.
Danielle said: “I cried for days and couldn’t sleep, but of course Evie was herself – strong, happy and resilient.
“I was told Evie couldn’t see out of her right eye, but she wasn’t bumping into things and hit all her development milestones.”
Danielle spoke with Great Ormond Street Hospital to discuss available treatment options for Evie.
She opted for Evie to have Intra Arterial Chemotherapy treatment where chemo is administered directly into the ophthalmic artery – an artery in the head.
Evie underwent an MRI scan, lumbar puncture and bone marrow check to rule out any external spread outside of the eye at the end of January before starting treatment.
Then she had her first Intra Arterial Chemotherapy at Birmingham Children Hospital.
She had to lay flat for six hours after the procedure due to the cannulation going through her femur artery to avoid any bleeding.
Danielle said: “I wanted to try the less invasive treatment because I couldn’t bear the thought of Evie being sick and in hospital losing her hair.
“She had the IAC treatment in January, February and March, because it’s done once a month and she responded really well.
“Three weeks after the first treatment, I was told Evie had responded well, that the tumour had shrunk in size and calcified, her retina had reattached and it had moved away from her central vision.
“Then when we went back in May, they checked her under anaesthetic.
“She’s been put to sleep nine times already this year; it’s traumatic because she cries every time they put the gas mask on and she flips her arms out because she hates it.”
LOOKING HOPEFUL
After her second treatment in February, Evie had another check under anaesthetic in March and it revealed her tumour had shrunk more and showed no activity.
Evie went for her third treatment at the end of March, and in April results showed the tumour was stable.
To celebrate, single mum Danielle jetted off to Tenerife with Evie in April.
It was a special occasion as she was forced to cancel her birthday party in February due to treatment.
When they returned, Danielle received bad news.
On May 4, she was told Evie’s main tumour was active and had grown. Plus, there were two new tumours in a different spot in her eye.
They decided to try another three rounds of IAC at a higher dose, starting in May.
She said: “Evie’s main tumour which was showing dead (not active) from her last appointment is now active and has grown.
“She now also has another two tumours growing in a different spot in her eye, which must have come from the broken off pieces from her main tumour.
“The news hit me hard. It’s gutting.
“Our first option is to try another three courses of Intra Arterial chemotherapy but with a higher dosage of both chemotherapy drugs into the eye.
“If there is no progress then we have no choice but to remove her right eye.”
Danielle says their life has changed overnight and now consists of hospital visits.
She was on maternity leave when she first noticed the white ring but has been unable to return to work due to Evie’s health.
She said: “We’re back at Great Ormond Street now for treatment. I’m trying to be positive but it feels like we are back to square one of finding out she has cancer all over again, but worse.
“I had to weigh up the options of putting her through treatment again but I’m hoping that another three rounds could be what the cancer needs to completely destroy it.
“Evie recently had genetic testing which revealed she has non-genetic retinoblastoma.
“Cases of genetic retinoblastoma usually end up having it in both their eyes, so Evie’s should be within her one eye.
“I think she’s completely blind in her right eye at the moment but sometimes the retina can reattach, so I’m staying hopeful and keeping things as normal as possible.”
FINDING SUPPORT
Danielle started sharing her daughter’s journey on her Instagram page to connect with other retinoblastoma parents.
She said: “Our life is not the same anymore. We’re constantly in hospitals and Evie is put to sleep at least twice a month.
“I’m struggling financially but I’m trying to make life as great as I can and ensure she doesn’t miss out on anything.
“I’ve been referred to a counsellor because I always worry that something is wrong and if she’ll survive.
“It’s taken a toll on me but my mum is with me most days and my friends are supportive.
“I try to keep busy and the gym is my go-to place to mentally escape things.”
Danielle is hopeful that Evie’s rare cancer will become stable after treatment as once she reaches six-years-old, it’s unlikely to become reactive again.
Her worst fear is Evie losing her eye – as she knows how cruel people can be – but knows she will make that decision if she has no choice, as she wouldn’t put her life in jeopardy.
Danielle said: “If Evie’s cancer escapes the optic nerve, we’ll have no choice but to remove it. At the moment, it’s contained in the eye.
“I decided to connect with other families online. Their stories have made me feel less alone.
“Plus, they’ve given me hope. Who knows where we’ll be in 20 years’ time?
“There could be eye transplants available if the patient has an optic nerve.
“I’ve also made more people aware of the signs of retinoblastoma. If the cancer is Grade E, you have no choice but to remove it. If I didn’t take that picture of Evie and spot the white ring, she may have been at that point.
“All of this hit me so quickly and I couldn’t believe this was happening to my little girl.
“How could a photo lead to such a heartbreaking diagnosis?
“I want to help other parents too so they know they’re not alone – and to look out for what seems to be an innocent thing in photos, which it isn’t!”
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