Kay Lewis’ daughter, Maisy, was diagnosed with retinoblastoma in both eyes when she was nine months old. Kay explains what helped them after treatment, and how Maisy continues to inspire her.
Maisy was a happy baby, always smiling. At the time of her diagnosis, we’d recently moved to Tenerife and were settling into our new life abroad. The hospitals there were unsure what was wrong with her, and we were advised to return to the UK, which her dad and I did the day they told us something was seriously wrong with our baby. When we arrived at Moorfields Eye Hospital, it still took three doctors to diagnose her with bilateral retinoblastoma.
One of the tumours in her left eye was so big that she had to have that eye removed, with a false eye fitted a few weeks later. She also had three tumours in her right eye, which were treated with cryotherapy and six months of chemotherapy.
She was extremely poorly during her treatment and spent most of that time in hospital. She was so tiny and had so many side effects from chemotherapy. Some days we’d be discharged from hospital and within a few hours, we’d have to return with a different symptom. It was emotionally draining. It was such a sad time, but I have an amazing family that supported us throughout.
During Maisy’s treatment, I decided to make an album for her. I thought one day, when she’s older, she’ll no doubt ask why she has poorly eyes. I added photos to the album of her in hospital, I kept her hospital tags, cards from family and friends, and details of charity events that we did raising money for the charity Childhood Eye Cancer Trust (CHECT). I kept notes of appointments and the reason why she was in hospital.
What helped us in the years after treatment
Maisy got the all-clear after six months, though we still had many check-ups which became less frequent as time went on. We were so happy with how strong she was. She was a lovely girl, who was always happy, smiling and dancing.
When she was five, she asked me about her eyes, and I sat with her and showed her the album. The photos helped her understand what happened and also helped in her early teens when she was getting bullied at school. She took the album in to show the other children in her class and year group.
How amazing Maisy inspires me
During the COVID-19 lockdown, I decided to write a book about what happened to Maisy. I always wanted to write one for her so she could read how strong and amazing she is. But when I was writing, I realised how much it would help other families going through a similar experience. It took me a long time to write as it was so sad, but my book was published in February, with Maisy the first person to read it. She found it emotional yet interesting, as there was lots of information in it that she never knew about.
Maisy’s now 20 and incredible. We have a great relationship, and spend a lot of time with each other, always finding new places to explore. She doesn’t let being partially sighted affect her in any way. She’s very confident and has gone off travelling again this summer. She’s a very happy young lady.
When she was 18, she had her first tattoo – it’s a picture of her eye and underneath it says, ‘Appreciate every moment’ in Spanish. Maisy has a lot of dreams and exciting plans for what she wants to do with her life and having had cancer as a child won’t stop her.
CCLG’s information factsheet for parents gives an overview of retinoblastoma, including symptoms, diagnosis and treatment.
From Contact magazine issue 104 | Autumn 2024
