Flynn's Story

Flynn was a perfectly normal baby, but around 3 months old we noticed a difference in how his left eye was behaving in comparison to his right.

We tried to investigate this with the health visitor first, then the doctors and we were pretty much told it was just developmental and that his left eye would strengthen in time.

However a couple of months later we were still unhappy and so pushed for an appointment to have this investigated. Finally, at just turned 7 months old, we had an appointment with the ophthalmologist at our local hospital.

This appointment turned into a day from hell. Being passed between department’s, doctor’s, consultants, and all with no explanation of why, we were finally told Flynn was being referred to Birmingham’s Children Hospital in the next few days. We still had no clue why but it wasn’t long before we found out.

A phone call from Birmingham informed us that we were taking him there to confirm a diagnosis of Retinoblastoma, a rare eye cancer affecting children predominantly under 5 years old. A couple of short days later we were there, and heard the crushing news that he did have Retinoblastoma, and that he had it bilaterally (in both eyes).

This started a domino effect of people calling, appointments being booked, assessments being done, information being thrown our way, and hardly a second to pause and think about what was actually happening.

Flynn was immediately booked in for surgery to have his Hickman line fitted, an MRI scan, lumber puncture, and the afternoon after his line fitting, he also had his first round of chemo. Flynn went on to have 4 rounds of chemo, 3 hospital admissions, resulting in several night stays each time, home visit from community nurses to maintain the upkeep of his line, and up until very recently, we have been attending Birmingham every 4 weeks for laser and occasionally, cryotherapy on his eyes.

Flynn’s vision has been affected, predominantly in the left eye. This had 1 big tumour with several smaller ones, and the big one, unfortunately, grew over some of the key components of his eye, both obscuring and effecting his vision. We are now in the process of trying to understand how much sight, if any, he has in that eye.

For now all we know is that he has light perception. The tumours in his right eye were luckily much smaller and around the edges, meaning vision in this eye is as expected for a child of his age.

Flynn is now 2 and a half and living life as a typical cheeky, fun loving boy 🥰 His Birmingham appointments have just dropped in the last couple of months to 8 weekly, and his tumours have remained stable with no new seeding for a few months now.

We really couldn’t ask for more of our little fighter. He has remained a happy little happy throughout all he’s faced and if you don’t know his story, I don’t think you’d ever guess when meeting him what a trooper he really is.
We can’t wait to have some time away as a family, and away from hospitals, now that appointment intervals have expanded, and we can’t thank the Ben Saunders Foundation enough for giving us the opportunity to stay in their gorgeous holiday retreat ❤️