I had no idea my baby girl was critically ill until I spotted something odd in a photo
When Danielle Prior spotted a “glowing white ring” in her daughter’s eye after taking a picture with her iPhone, she thought it was the glare from the flash.
But after the bright circle in Evie’s right eye continued to appear in more snaps, 30-year-old Danielle panicked and made an emergency appointment with her GP.
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Tests showed the white light was indeed a warning sign and Evie was diagnosed with retinoblastoma, a rare retinal cancer, at just 11 months old.
She is now at risk of losing her eye and mum Danielle, a former NHS recruiter from Surrey, is speaking out to raise awareness that other parents know what to look out for.
Danielle said: “One day I was sitting next to Evie giving her lunch and she was watching Miss Rachel on the iPad.
“I thought I saw a dull eye or a slight glint in her eyes.
“I wiped her because I thought she picked up food and rubbed it in her eye. But it was still there, so I took another photo.
“But when I examined the photo, I saw a glowing white ring around her right eye.
“I thought it was the flash, so I took more pictures, but I got worried when every photo showed the ring.
“I’m glad I went with my gut as this photo led to the diagnosis of an 11mm tumor and if I hadn’t done it her eye might have had to be removed.
“We’ve had an emotional roller coaster for months and it’s not over yet, but if I can stop this from happening to any other family, I have to speak up.”
‘ROLLER COASTER’
When Danielle saw the white glow in Evie’s eye, now one, in January, she turned to Google for advice.
But when she read that it could be cancer, she panicked.
She contacted her GP, who visited Evie the same day and sent her for an urgent referral to an ophthalmologist.
Danielle said: “I showed the GP the pictures and they did a red reflex test where they shine a light into the eye and a normal eye reflects red back.”
“Evie’s eye reflected back white and I know now that the white glow is the tumor being reflected back at you.
“They tried to calm me down and said it could be cataracts or something else.
“But I had a queasy feeling that if we were referred to another date, it would be bad news.”
Within days, Danielle was taking Evie to St Helier Hospital, where an ultrasound was performed which revealed a mass tumor and calcium deposits, suggesting cancer.
Then another appointment at the Royal London Hospital confirmed Evie’s diagnosis of unilateral stage D retinoblastoma.
The rare form of cancer is diagnosed in 40 to 50 children and babies in the UK each year.
Danielle said: “I cried for days and couldn’t sleep but of course Evie was herself – strong, happy and resilient.
“I was told that Evie couldn’t see with her right eye, but she wasn’t bumping into things or hitting all of her developmental milestones.”
Danielle spoke to Great Ormond Street Hospital to discuss the treatment options available for Evie.
She opted for intra-arterial chemotherapy for Evie, where the chemotherapy is given directly into the ophthalmic artery – an artery in the head.
Evie underwent an MRI scan, a spinal tap and a bone marrow exam to rule out external spread outside of the eye in late January before starting treatment.
She then received her first intra-arterial chemotherapy at Birmingham Children’s Hospital.
She had to lie flat for six hours after the procedure as the cannula was passed through her femoral artery to prevent bleeding.
Danielle said: “I wanted to try the less invasive treatment because I couldn’t face the thought of Evie being ill and losing her hair in the hospital.
“She had the IAC treatment in January, February and March because it is once a month and she has responded very well to it.
“Three weeks into the first treatment I was told that Evie was responding well, that the tumor had shrunk and calcified, that her retina had re-grown and that she had moved away from her central field of vision.
“When we came back in May, she was examined under anaesthetic.
“She has already been euthanized nine times this year; It’s traumatic because she cries every time they put the gas mask on and she stretches her arms out because she hates it.”
I look hopeful
After her second treatment in February, Evie was re-examined under anesthesia in March and it was found that her tumor had further shrunk and was no longer showing any activity.
Evie had her third treatment at the end of March and by April the results showed the tumor was stable.
To celebrate, single mom Danielle flew to Tenerife with Evie in April.
It was a special occasion as she had to cancel her February birthday party due to treatment.
When they got back, Danielle received bad news.
On May 4th, she was informed that Evie’s main tumor was active and had grown. There were also two new tumors in a different location in her eye.
They decided to try another three rounds of IAC at a higher dose starting in May.
She said: “Evie’s main tumor, which was presumed dead (not active) since her last appointment, is now active and growing.
“She also now has two other tumors growing elsewhere in her eye, which must have come from parts of her main tumor that broke off.
“The news hit me hard. It’s disappointing.
“Our first option is to try three more courses of intra-arterial chemotherapy, but with higher doses of both chemotherapy drugs.
“If there is no progress, we have no choice but to remove her right eye.”
Danielle says her life changed overnight and now consists of hospital visits.
She was on maternity leave when she first noticed the white ring, but was unable to return to work due to Evie’s health.
She said: “We are now back in Great Ormond Street for treatment. I’m trying to stay positive but it feels like we’re going back to square one and finding out she has cancer again but worse.
“I’ve had to weigh the options of having her treated again, but I’m hoping another three rounds might be enough to completely eradicate the cancer.
“Evie recently had a genetic test which revealed she has non-genetic retinoblastoma.
“With genetic retinoblastoma, retinoblastoma usually occurs in both eyes, so Evie’s retinoblastoma should be in one eye.
“I think she’s totally blind in the right eye at the moment but sometimes the retina can reconnect so I’m staying hopeful and keeping things as normal as possible.”
FIND SUPPORT
Danielle began sharing her daughter’s journey with her Instagram page to connect with other retinoblastoma parents.
She said: “Our lives are not the same anymore. We are constantly in the hospital and Evie is put down at least twice a month.
“I have financial problems, but I’m trying to make life as comfortable as possible and make sure she doesn’t miss anything.
“I was referred to a counselor because I always worry that something is wrong and if she will survive.
“It has taken a lot out of me, but my mum is with me most days and my friends are supportive.
“I’m trying to keep myself busy and the gym for me is a place where I can mentally escape.”
Danielle is confident that Evie’s rare cancer will stabilize after treatment because once she is six years old it is unlikely that she will become reactive again.
Her worst fear is that Evie will lose her eye – because she knows how cruel people can be – but she knows that if she has no other choice, she will make that choice because she wouldn’t risk her life.
Danielle said: “If Evie’s cancer leaves the optic nerve, we have no choice but to remove it.” For now, it’s contained in the eye.
“I have decided to connect with other families online. Your stories have made me feel less alone.
“Besides, they gave me hope. Who knows where we will be in 20 years?
“If the patient has an optic nerve, eye transplants could be possible.
“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 hadn’t taken the picture of Evie and spotted the white ring, she might have been at this point.
“It all hit me so fast 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 be aware of photos that may seem harmless, but they aren’t!”
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