I felt numb when baby Kooper was diagnosed with cancer after a strange symptom when the lights were turned off
A MUM and dad noticed their son was displaying an unusual symptom whenever they turned out the lights.
After doing some research, Lowri Gallagher and Shane Stevenson discovered their son Kooper could be displaying signs of a rare type of cancer.
Lowri, 30, admits she wasn’t too concerned when she noticed a slight difference between Kooper’s two eyes when he looked in a certain direction.
But after mentioning it to partner Shane, the pair became concerned when they realised their son’s left eye gave a “strange glint” whenever they turned off the lights.
After Googling the peculiar symptom, they discovered it could be ‘retinoblastoma‘, a rare type of eye cancer that commonly affects young children – and often revealed by the flash of a camera.
The pair took repeated pictures using their phones of the 20-month-old’s eye with their phone’s flash on and were horrified to see the white glow in every snap.
Kooper was rushed to the doctor’s and referred to Birmingham‘s Children’s Hospital [December 13th] where he was diagnosed with unilateral retinoblastoma, which affects the retina at the back of the eye.
Doctors told them the cancer had left Kooper blind in his left eye but there was a chance he could keep his eye with chemotherapy.
Shane, from Ferndale, South Wales, said: “My partner said she saw something funny in his eye but she didn’t really say what and I’m not a big panicker so I thought it’d be fine.
“A couple of nights later, I had the boys at home and I noticed it myself. When the lights are off his pupil goes white.
“You couldn’t see it properly, you could see it if you looked a certain way and there was a reflection in his eye, you could see a little bit of white in his pupil.
“I googled it and there were a couple of things that it could’ve been and one of them was eye cancer, retinoblastoma, and I panicked a little bit then.
“[Google] said that another symptom to look out for is taking photos with the flash on and seeing the white pupil. Obviously we did that and we saw his white pupil.
“We kept taking pictures with flash and his pupil was always white in them so we panicked then. We took him straight to the doctor’s.
“They told us in the hospital that he had been blind in the eye but we had no idea, he hadn’t shown any signs of being blind.
“It’s all unknown really. Our initial thought was that he was going to lose his eye but he will undergo chemotherapy to try and keep his eye. It’s not guaranteed but we’re hoping for that.
“My initial thought was that it would be something serious, but nothing prepares you to hear that your child has cancer.”
Lowri, who is ex-military and had been studying midwifery, said: “I didn’t think anything of it, I didn’t realise the seriousness of it.
“Shane didn’t believe me at first but a couple of days later we took the pictures, which made it stand out more.
“The week before we found out what it was was the worst week. I didn’t know what it was, how fatal it would be, if it had spread, I was wondering if he was going to lose his eye.
“At least then we knew what it was and what the plan was, it was a bit of a relief because the speculation was over.
“I just felt numb, I didn’t know how to feel.”
Kooper’s treatment
Kooper is currently undergoing intra arterial chemotherapy and will have to get chemotherapy injections and laser therapy, which will take a minimum of two years.
Shane, 35, said that although Kooper is handling everything well and is still a “rascal” it is hard to watch him struggle with eye drops and anaesthetic.
The dad-of-two admitted that if he had not googled his symptoms and took photos of his eyes, he would not have been concerned as quickly.
Shane said: “He is a bit of a second child. He is a bit naughty and a rascal because he is growing up with a brother who is not that much older.
“He doesn’t understand why he is having eye drops and really doesn’t like it, there’s a lot of kicking and screaming.
“He doesn’t understand why he has to be put to sleep when we go to the hospital and that’s hard to watch, forcing a mask on his face.
“I would have noticed his eye looks different from the other but I probably wouldn’t have gone to the GP urgently, I probably would have waited until he got worse.
“I probably wouldn’t have been immediately alarmed until it got worse.”
Warning to other parents
The couple are now issuing a warning to parents to check their children’s eyes.
Shane said: “The consultant in the hospital said that lots of people ignore it and end up losing their eye so I’m really glad we caught it when we did and went straight away as soon as we noticed it.
“Definitely look out for things like that and check regularly.”
In an online post, Lowri wrote: “Be vigilant, check their eyes, take photos of them with the flash on, and if something doesn’t feel right in your gut, get it checked.”
You can donate to Kooper’s cause by visiting his Go Fund Me page.
What is unilateral retinoblastoma?
Retinoblastoma is a rare type of eye cancer that can affect young children.
It affects the retina, which is at the back of the eye and sends signals to the brain to help you see.
It can usually be treated successfully if it’s found early.
The main symptom is a white glow or white reflection in the centre of the eye (pupil).
You may be able to see it from just looking at the eye, or you may see it in low light or in photos where a flash has been used.
Other symptoms can include:
- the eyes pointing in a different direction (squint)
- the coloured part of the eye (iris) changing colour
- swelling around the eye
- uncontrolled eye movements
- vision problems
- pain in one or both eyes
Retinoblastoma is often linked to a change in a gene that controls the growth of the eye and can run in families.
If you notice these symptoms in your child, ask for an urgent GP appointment.
Source: NHS