The Childhood Eye Cancer Trust is currently funding research projects which hope to improve outcomes and develop new targeted treatments for retinoblastoma.

Here Lucy Deakin shares her experience when her daughter Eliza became one of the first children in the UK to undergo a new type of treatment for retinoblastoma.

Eliza’s story
Eliza was born at home in November 2012 – a welcome little sister to Megan (6) and Freya (4). I remember her first nine weeks with much fondness: a time when we all got to just enjoy having a healthy happy baby to get to know and love.

There were little signs right from the start that her vision wasn’t quite right – she would favour her right side to look at things, she had a squint, she kept her eyes closed a lot – but we were reassured that her first baby check had been fine.

White glow
Just after Christmas 2012 I noticed a white glow in her left eye under certain lights, and then in a photograph. I knew what it could signify from articles I’d read and from my time working as an oncology nurse so I took her to the GP at six weeks, but was told I must be mistaken. The GP said it was her right eye that was ‘cloudy’ and she maybe had a cataract.

A referral was made to our local ophthalmology department and I took Eliza to New Zealand for 2 weeks to visit my sister, reassured that a cataract was relatively straightforward to treat. The day after I flew back, when Eliza was nine weeks old, we went to the ophthalmology appointment and within 30 minutes the doctor told us she could see tumours in both Eliza’s eyes.

I remember the experience as very surreal – I was still in a new baby whirlwind and jet lagged from the NZ trip and could not believe that this was happening to our baby.

Eliza started systemic chemotherapy the following week in Leeds and the next few months saw treatment, appointments and medicines become a regular part of our life.

For Eliza, things seemed pretty much the same as for most young babies. She fed, slept, played, learnt to smile and laugh and enjoy time with her big sisters. She had a couple of examinations under anaesthetic (EUA) at the Royal London and was seen to have a good response to the chemotherapy. The treatment schedule and impact of her diagnosis were tempered by the need to keep going with our daily routine for her big sisters, and I am so thankful for that.

Supportive sisters
Megan and Freya have coped amazingly throughout and have helped to keep us grounded and make sure there are plenty of things to enjoy in our day to day lives. We have always been honest with them about what’s happening and I think it has created a really special bond between them and their little sister. They have been supported by their school, the ‘sibling group’ run by the social workers at our local hospital, CHECT and an amazing week at the Barretstown ‘Serious Fun’ camp in Ireland.

Six weeks after Eliza had finished chemotherapy I took her to London for a follow-up EUA. I knew it wasn’t good news when Eliza came back from theatre and we were shown into a side room to talk to the consultants. She had a big relapse in her left eye and the tumours in her right eye were growing again. She was to start intra-arterial chemotherapy the following week for her left eye and they would try treating the right eye with cryotherapy for now.

Intra-arterial chemotherapy is where the drugs are administered direct to the eye via an artery in the groin. The first attempt was unsuccessful – the artery had gone into spasm and they hadn’t been able to deliver the chemotherapy. To go through the stress of a trip to London, hospital admission, fasting, anaesthetic, several hours of keeping Eliza still in post-op with no treatment given was really disappointing. However, a week later they tried again and were successful. Over the next few months Eliza had three successful cycles of intra-arterial chemotherapy and another failed attempt. The response was good and, along with cryotherapy, the tumours in Eliza’s left eye have been kept under control ever since.

Whilst all the treatment was ongoing for Eliza’s left eye she was still having regular EUAs and cryotherapy for her right eye. A new tumour had grown and started sending out seeds. Just before Eliza’s first birthday we were told that further treatment was needed. Eliza could have external beam radiotherapy, with a high risk of side-effects that would damage her vision, or try intra-arterial chemotherapy but with a low chance of success at treating the seeds she had. The other option was to try intra-vitreal chemotherapy (melphalan), but this had never been performed at the Royal London and was still in the process of being approved.

The consultant was confident that this was the best treatment option for Eliza and directed us to studies from other countries that showed really promising results. We agreed to opt for this, and within a few weeks it had been approved and a date set for her first treatment.

First time for everyone
The first time your child has any treatment it is hard to know what to expect, but especially when it is the first time that it has been carried out by the team. We knew that Eliza would be in theatre for a while as they carried out fluorescein angiography and ultrasound biomicroscopy to check that they could find a safe injection site, where there was no risk of any cancer cells escaping from the eye.

Eliza’s first treatment went smoothly and I remember feeling so relieved when she arrived back from theatre. She slept most of the day and didn’t open her eyes for about 24 hours but was soon back to her usual self. Our biggest issue at that point was that they had no paediatric eye shields so she had an adult size one on instead. It was too big and uncomfortable and really hard to keep in place. As soon as we had sourced a paediatric size one life became much easier. We found that using a mepitel film dressing with a hole cut into the middle meant she had great visibility through it. As her right eye was the only one with useful vision I thought that she would be frustrated and upset but other than rubbing at it sometimes it really wasn’t an issue. I became an expert at aiming eye drops through the eye shield into the corner of her eye so they would drop into her eye when she blinked – a skill I never knew I would need!

Regular hospital visits
Eliza’s treatments were planned to be every week, which seemed very daunting, but soon became routine. I kept a bag packed ready and booked train tickets each week. Sometimes there would be a week where she couldn’t have treatment due to the consultant availability or pharmacy issues in preparing the chemotherapy, but these weeks were instead used for treatment at Great Ormond Street so she could have the intra-arterial chemotherapy for her left eye. It was a very intense time and, whilst Eliza carried on playing and smiling, we did notice she stopped putting on weight as she seemed to have no appetite and her development stopped for a while.

I had returned to work two days per week and we were so lucky to have a childminder who took care of Eliza with such love and sensitivity. Some days she just wanted to be carried in a sling or read to and other days she was much more full of energy.

CHECT support
After four cycles of intra-vitreal treatment the consultants started to talk about other treatment options. The seeds weren’t showing a significant response and I was hearing different things about whether this was usual or not. I was told by one consultant that they would have expected to see a response and by another that it was common for it to take a few cycles. I found it really stressful to not have a definite plan, and I was so desperate for the treatment to work. I remember calling our CHECT support worker when all the questions in my head became too much, and she helped me to figure out the things I really wanted to ask and arranged for the consultant to take time out to speak to me when we attended for Eliza’s next treatment.

Over the next few cycles the seeds became more fuzzy round the edges and grey in colour. We would have loved for them to just disappear straight away but at least this was progress. When Eliza went to theatre for her eighth cycle we knew it was the last one planned and that they would monitor following this, but they decided not to give the chemotherapy. She had developed a cataract on her lens and they didn’t want to worsen this with more treatment. The seeds continued to shrink over the following months even after treatment had finished and haven’t caused problems in over a year now.

It all adds up…
It is over two years since Eliza was diagnosed.

In that time she has had

  • 40 anaesthetics
  • 6 cycles of systemic chemotherapy
  • 5 attempts at intra-arterial chemotherapy
  • 7 cycles of intravitreal chemotherapy

…and what seems like endless amounts of cryotherapy.

Despite all this she is a happy little two year old and most people would never guess what she had been through. It’s really hard to assess how much vision she has but she seems to see everything she wants to and enjoys running at speed wherever she goes.

We are still attending the Royal London for EUAs every few weeks and I’m sure we have a long way to go before we can feel like retinoblastoma is something we don’t need to think about.

I feel proud, though, of how Eliza, Freya and Megan are thriving despite it all, and very thankful for the support from other parents, CHECT and the other organisations that have supported us through the last two years.