Molly's Story

In January 2020 our beautiful daughter Molly was diagnosed with genetic Retinoblastoma at 22 months old. Retinoblastoma is a rare eye cancer that normally occurs in children under 5.

Unfortunately there are only two places in the UK that can diagnose this, many GP’s don’t consider this disease and so it had taken 9 months from the time we first went to the GP having noticed a squint, to arriving at the Royal London and receiving the diagnosis.

Sadly, by this time Molly had already lost all sight in her right eye.

However when we got to the Royal London, the care we received from her team was rarely anything other than brilliant!

Initially we were advised that if they could shrink her tumour, there was a chance she might gain some vision back. As a result we opted for IAC chemo, where a concentrated dose is delivered directly to the back of the eye via a catheter that’s threaded up from the groin. Whilst it appeared to be having an impact, after the initial three cycles of treatment they felt that Molly still needed more and so we continued. However on the fourth cycle the procedure failed - Molly’s body tended to spasm whilst they were threading the catheter through her body and it had been too unstable to administer the chemo. She was given one more chance and thankfully they were able to successfully complete the process!

As parents it was a traumatic time, especially given the many complications Covid brought, but Molly was amazing throughout. She has experienced so many anaesthetics, pokes and prods I can hardly keep count, but was simply amazing throughout - starvation and “lists” became the norm, but she rarely complained!

On the next EUA we were given the best news - Mollys tumour was stable and “inactive” (in the eye it will never actually disappear). No more treatment was needed - Molly would be closely monitored under anaesthetic every few weeks, but unfortunately her vision had not and would not improve.

Molly remained stable and the gaps between her anaesthetics slowly grew. She adapted to her vision well and I nearly cried when the little girl who fell over her own feet in lockdown balanced across a high beam holding eggs on spoons in BOTH hands in her gymnastics 🥲

In July 2022 Molly was preparing to leave preschool and was due one last Examination Under Anaesthetic before she would ring the end of treatment bell 🔔

Unfortunately on that day, we found out that she had relapsed - there would be no bell! We returned one week later to find that it was highly aggressive. Enucleation (removal) of the eye was the only choice left, and ultimately a lifesaving operation to ensure the tumour didn’t spread. We had to hope for no more treatment after that.

Molly missed her last day at preschool, and the timing just before starting school felt awful… But ever resilient, she was dancing 💃 the next day and climbing the high ropes just two weeks later, managing to get her first prosthetic “special” eye 2 days before starting school 🏫

It’s not been entirely plain sailing - her first eyes weren’t a great fit and were uncomfortable, so she became a bit too confident at taking her prosthetic out!! Her older sister Emilia has been a fabulous support to her sister, but it’s very clear it’s had a significant impact on her and she suffers from anxieties her own.

But we often have just had to laugh…

👩‍🏫 Teacher - “We had a slight issue today where Molly lost her eye… after a 15 minute hunt one of the children found it in the craft area!”

Molly now has an eye that seems a more comfortable fit, she’s settled into school really well with a lovely class, buddy & class team who have helped her be comfortable and confident in her own skin!

She has a sister who’s proud of her and wants Molly to do her party trick 😆

She has opportunities provided by our fabulous NHS to meet other children at Eye Club who have special eyes just like her, and celebrate who they are together. She got the first ever teacher badge at eye club, and was so proud 🥰

And now we’re back to 1️⃣ year cancer free, and counting! 🎉

Molly has this defective RB gene throughout her body, and so when we discovered this we knew straight away we would always do as much as we could, whenever we could, to make memories… I don’t know that the journey will ever be “over” or that I’ll ever feel “confident” again. But for now, we hope, a reprieve… we’re very grateful to the Ben Saunders Foundation for this opportunity to enjoy some quality time together 💙