Katie’s Retinoblastoma Story: From starting school to living with a prosthetic eye

by | Sep 30, 2022 | My story

Katie from Wales discusses her retinoblastoma journey, from diagnosis to starting school, and life now as a twenty-two-year-old.

Hey my name is Katie.  I was diagnosed with retinoblastoma at the age of two and a half. Retinoblastoma was discovered when my Mum took a photo of me using flash and saw a white dot in the middle of my eye on one side.

My parents took me to the local hospital first, and they then looked and referred me to Royal London Hospital. We didn’t think anything of it at the time. My parents got told by Dr Hungerford, “To save your daughter’s life we will need to remove the eye”. Then two days later my eye was removed after an approximately eight-hour operation back in 2002. Thinking back, I was a young child and don’t remember any of it!

After waking up from the operation all I said was, “Where’s my cup of tea?”. My family laughed! After such operation this is all I wanted.

Katie cuddling her teddy as a child
Dr Hungerford said that I probably couldn’t see from the enucleated eye since a very young age. I possibly wouldn’t notice any difference after enucleation of the eye, and so it wouldn’t have become a big shock from being able to see with two eyes to having one eye and a prosthetic eye.

I had to wait approximately six months for my first ever prosthetic eye at the age of three-years-old. I went home with a clear conformer until my socket healed. I had to keep it clean until I had my first ever blue prosthetic eye fitted to match mine.

When I got my first appointment with the lady that did my eye (it’s still the same lady today), I didn’t like that experience at all. I used to scream the place down as I knew what was coming but as I grew up, I then got used to it.

I was fortunate enough to have had an enucleation as my treatment and count myself as one of the extremely lucky ones to have survived Rb without any further treatment! I’m thankful also to my family who was there with me throughout the dark tunnel and who attended many hospital appointments with me at the time.

Starting school was just a normal experience for me as it would be for any other four-year-old. I wouldn’t have found it any different because of having a prosthetic except attending an eye polish every now and then. I was as happy as any other child and happy enough attending school.

As I got diagnosed at the age of 2.5years old it’s not like I used to attend school in the past and could see with both my eyes. So, I attended school at four like any other child would. I didn’t used to be treated any differently to any other child really, even though I had a prosthetic eye, and I luckily didn’t experience any bullying; I had a great prosthetic match!

Katie is a child. She is stood up inside wearing a red top and pink trousers. She is smiling at the camera
My words as someone who went through retinoblastoma and is now living with a prosthetic eye would be: To carry on with and live your everyday life like any other child would! Be yourself with or without your prosthetic and don’t let anyone tell you any different! You should be proud of yourself! And of your scars!

I was also fortunate enough to being able to Carry the Olympic Torch Bearer back in 2012 and walk/run with it for 300metres! Which was a great experience after being nominated to carry it.

I first opened about my story on 1st of September 2022 during Childhood Cancer Awareness Month, after following Olivia Deane’s story and posts on Instagram! It’s so nice to see people such as Olivia being open and happy enough to talk through her experiences! So, I wish to shout out to her and many other young inspirational warriors out there!

 Personally, I would love to raise much more awareness about ‘Childhood Eye Cancer’ as we never know who It may affect in the future. Helping others through sharing my personal story with Rb is amazing!

Thank You for reading!

Lots of Love

Retinoblastoma Survivor Katie!🎗❤️

Katie is a child and not wearing her prosthetic eye

Related Stories
What would you say to your younger self?

What would you say to your younger self?

https://youtu.be/oHoMYTIGzc4   Recently some teens and young adults who have had retinoblastoma got together to do a podcast as part of a research day. To end the day, they answered some questions about their experiences of Rb! A huge thank you to everyone who...