In May last year my partner Ollie first noticed Noah’s eye had an unusual glow/reflection.
A few days passed and he kept saying he could see this weird glow but I couldn’t see it from the naked eye like Ollie could. One day it was driving him mad so he googled it and the first thing that came up was Retinoblastoma. We took loads of photos with the flash on until we got some that showed the glow in his left eye. We took him to A&E that night, the doctor said there was something there but he didn’t think it was anything sinister and recommended to get our gp to refer him to our local eye clinic. About a week later we had our appointment with the ophthalmologist.
Noah first had an eye test, where we discovered he could barely see anything out of his left eye.
This absolutely stunned us as he had shown no signs of poor sight and didn’t have a squint or ever seem to struggle with his sight. The Ophthalmologist then saw him in a darkened room and I immediately knew from his body language and seriousness that he thought the worst. He didn’t say what he thought it might be but referred us to St. Thomas’s in London to see a specialist. From here we got referred immediately to The Royal London RB Team. Noah had a general anesthetic and was diagnosed with unilateral left eye Retinoblastoma. It was grade D but the doctors said he had a good chance of saving his eye with chemotherapy. We had 6 months of chemo and the tumor responded well to the treatment.
We were absolutely convinced Noah was going to keep fighting it.
But a week before Christmas on the last check up in his treatment plan the doctors were shocked to find the tumor had started growing again with a vengeance and there was lots of new seeding. The best option was to remove the eye and the tumor along with it. So, a week later we did the hardest thing we’ve ever had to do, watch our baby go into that theatre knowing he’d come out without his beautiful eye. I felt like I’d let him down and betrayed him after putting him through 6 months of hell for nothing. It’s been 6 months since he’s had his prosthetic eye now and he’s come to terms with it easier than me.
The best thing is seeing him getting on with his childhood and doing all the normal things a 5-year-old should be doing.
It’s a weight lifted now we know the tumor is 100% gone but I still worry about him after everything he’s been through. When Noah was diagnosed I started a blog to share with friends and family which follows our journey through RB. It was more a kind of therapy for me more than anything though! I keep meaning to post since Noah’s enucleation but I’ve found it difficult to find the time since we’ve been able to carry on with our lives and enjoy time together as a family. I was very upset and distressed when Noah’s eye was enucleated and I will always be sorry. But I can also see how lucky we are and I’m so happy Noah is able to live a normal happy life.
To follow Noah’s RB journey please visit