Mum Mariah, from America, tells us about her son Theo’s experiences of retinoblastoma this World Sight Day:
Theo has just turned 10, hitting those double digits! He was diagnosed with retinoblastoma at the age of two and a half, after his father and I noticed a glow in his right eye during a movie one night. Weeks before, I thought I noticed something, but each time I convinced myself I was imagining things or overreacting, so I held off. His behaviour was unusual; he would cry at bedtime, saying there were monsters in his room and that he saw them moving at night. We later found out it was his vision deteriorating as the tumour grew and detached his retina—he was seeing shadows, which he thought were monsters.
Theo would wander like he was in the dark, avoiding barriers like he had night vision. At just two years old, he would hide under blankets all the time which breaks my heart, as he was probably having headaches from the growing tumour, and from fighting to see. I made an appointment and got a student who realised maybe she was checking his eye wrong. After further checks, what they saw was no red reflex and a glow. They immediately sent me, Theo and my other kids to a specialty ophthalmologist, who told us it could be one of two things – an eye disease or retinoblastoma. The coming days were packed with appointments, and I was about to pop with my fourth child any day.
Two days after giving birth to our fourth child, we went in for a scan. Poor Theo had to fast for 12 hours prior and sit and wait for another seven hours as they needed our anaesthesiologist for an emergency surgery. In the meantime, students would come in to look at his eye so they could learn what it looks like and what to look for. Theo got his scan – it was pretty traumatic for me as they put him under via IV rather than a mask and it hurt my heart to watch that. After seeing the scan, my heart broke as it was confirmed he had a large, fast-moving tumour.
We travelled back and forth between Boston and CT every few days with four kids; it was a struggle both emotionally and financially. Insurance refused to pay Boston and wanted us to go to NY, but we already had surgery set to remove his eye and any remaining tumour, and NY wanted to just do chemotherapy. It was one of the hardest decisions of my life as both were devastating. We went with our gut and the advice of our doctor and went with Boston. The surgeon paid for the surgery himself as insurance wouldn’t pay Boston. WHAT AN INCREDIBLY SELFLESS PERSON!
Since then, there’s been lots of scans and checks to ensure he doesn’t get retinoblastoma in his left eye. Recently, we went through a scare of intense migraines that would obstruct his whole line of vision spontaneously, leaving him blind for moments at a time. Theo has had more appointments, scans, and traveling – we found a small tumour at the base of his brain, but they believe this is benign. So now we have to give it time and monitor it. It has been a wild ride, but he is incredible and takes every day on with confidence, humour, and love!
Theo is so smart! He has 20/20 in his left eye. He loves soccer ️and is an absolute beast on the field – just naturally incredible at it! His favourite social media influencer is Jarrett Stod – the influencer who had retinoblastoma who has all the prosthetic eyes! He just boosts the kids’ confidence!
This flyer below is something Theo did for his class to help give them answers to any questions they had. Theo and I made retinoblastoma ribbons for his class and teachers with extras left at the front desk. We pray that Theo and all the other kids affected can continue to see the beauty in the broken; they are strong and have gone through what most do not – their strength is untouchable.
Theo’s advice to all that have gone through this – especially the ones who have lost their eyes – is “Own it, don’t be afraid to stand out! And look how cool are you – you can take your eye out! There will be days that people say things that hurt so badly – lean on the ones you love. People poke and prod what they do not understand. So, help them understand – educate them and make it fun, I’ve even come up with some crazy stories! Be silly, BE YOU! My favourite eye is my all-white eye!!”.
A big thank you to Mariah and Theo for sharing their story. Please remember that treatment and costs are different in the US to the UK. If you have any questions, please remember that our support workers are here to support anybody affected by retinoblastoma in the UK.