Bright Eyes

Elise’s Story

On the day our daughter Elise turned 21 months old, she was diagnosed with bilateral retinoblastoma. This is a rare and aggressive form of eye cancer that affects babies and young children, mainly under the age of six.

I first noticed a white reflection in Elise’s left eye in October 2021, shortly before her first birthday. It was not obvious, nor was it always visible. Elise’s father, Anthony, at that point could not see it. I was concerned and a bit unsure about what it was and so I took her to our GP. They carried out what we understood to be a standard check on Elise’s eye and I was told that her vision was fine. At the time Elise showed no problems with her sight and we thought the reflection was nothing to worry about.

Months passed and on occasions I would still notice the white reflection. These occasions however started to become more frequent and the white glow behind her pupil more visible. Elise’s nursery rang me to ask if there was anything wrong with Elise’s eye, as they too had noticed it. I did what doctors always say you shouldn’t do and I googled her symptoms. It immediately matched a very rare type of cancer called Retinoblastoma. Whilst I thought it wouldn’t be what our little girl has, my concern rapidly grew. Elise’s father and I decided to seek a specialist opinion. We knew Moorefields Eye Hospital was the place to go for specialist eye related problems and so we booked an urgent appointment with a consultant there.

The consultant told us Elise has perfect vision in her right eye, which was a huge relief. Then he told us Elise has no vision at all in her left eye. He said the likely cause and symptoms she is displaying suggest that she has Retinoblastoma.

I was in complete shock and started to cry. Was this really happening? This type of cancer was so rare that someone has better odds of winning the lottery.

An eye exam under general anaesthetic was needed to confirm the diagnosis. We were prepared for the worst, hoping for the best. She has one good eye and if that’s the worst case then we can deal with it. A week later we found ourselves at the Royal London Hospital who quickly confirmed the tumour in her left eye was Retinoblastoma (RB). Then they delivered more horrific news. Elise also has a small tumour located in her right eye. Luckily this one is not obstructing her vision, yet.

At this point I should say that the team at the Royal London were absolutely amazing. They told us what we didn’t want to know, but what we needed to know and did so with the right amount of empathy. RB tumours are categorised in size, A-E. A being the smallest and E the biggest and most concerning as they can threaten Elise’s life. Elise has a D in her left eye and B in her right eye. Had her left eye been an E, we would need to consider removing her eyeball to prevent the cancer escaping and spreading to the rest of her body. Elise has bilateral RB which affects both eyes. The recommended treatment for her is systemic chemotherapy. This is where we think the really difficult choice for parents has to be made. Chemo is a treatment carried out over months with lots of side effects and no cast iron guarantee of success. Chemo will be a tough road for both Elise and us. The other option was to remove the eye completely knowing that her cancer has gone with it. Whilst that would be a quicker treatment for the left eye, it would not treat her smaller tumour in the right. For that reason we chose chemo.

Her first cycle of chemotherapy was administered at Great Ormond Street Hospital 2.5 weeks later. This was proceeded by a Lumber Puncture, Bone Marrow extraction and MRI to determine if the cancer had spread to any other areas of the body, which would mean a change in treatment plan. Elise was also fitted with a Hickman line to administer the chemo, any antibiotics and blood transfusions if required. These procedures were individually done under general anaesthetic. We spent 4 days in a row in hospital and there were lots of tears. It was so much for Elise’s little body to endure. Every time her care team came to take her bloods our heart sunk. Elise would start to run to Anthony and I to cradle her each time a doctor or nurse would enter the room. Thankfully now that her Hickman line is in, there is no need for cannulas and syringes.

As you can imagine this has been an extremely difficult time for us. We are thinking positively. There is much to be grateful for, especially that Elise is receiving her treatment at Great Ormond Street Hospital who do incredible things for the sickest children.

September is Childhood Cancer Awareness Month. Raising awareness with parents and healthcare professionals can help ensure every child is diagnosed and treated ASAP. One child a week in the UK is diagnosed with retinoblastoma. Although UK survival rates are 98%, just under half of children diagnosed will lose an eye and many more are left with reduced vision. Many children and adults live with the consequences of a delayed diagnosis or the late effects of treatment received. More information about retinoblastoma and its symptoms can be found here chect.org.uk/about-retinoblastoma-2/ .

In addition to raising awareness, funding research into the prevention and treatment of retinoblastoma can produce real change.

Should anyone wish to make a donation then you can do on this page. We will add more details about our fundraising activities which will include Anthony undertaking the three peaks challenge in 2023.

Thank you.

Emma, Anthony, Raphael and Elise xxxx