A mum is urging other parents to look out for the tell-tale signs of eye cancer this Christmas after her three-year-old son, Dayaan from Buckinghamshire, was diagnosed with retinoblastoma – a rare eye cancer that typically affects children under the age of six.
Dayaan’s mum, Shamila, said, “As a baby, Dayaan had eye infections. Nothing else felt a concern at the time, until we went away as a family. In all our photographs, Dayaan’s eyes had a white glow when using a flash.”
The Childhood Eye Cancer Trust (CHECT) says typical signs of retinoblastoma include a white glow in the eye – which may only appear in certain lighting or in a photo where flash has been used – a squint, a change in the appearance of the eye, or a swollen eye. Often, only one sign or symptom is present.
Shamila said, “Still not thinking much of it at the time, we made him an optician’s appointment just to get his eyes checked. They obviously knew what they were looking at and said they would refer us to an eye specialist, not explaining fully why. We received a call the next day from the Royal London Hospital, who mentioned the ‘Big C’ word. I felt my legs go to jelly, and my stomach was in knots! I couldn’t speak and couldn’t understand how and what was happening. This is wrong surely!”
Shamila explained, “At the Royal London Hospital, it was confirmed that my three-year-old beautiful baby boy — so full of life with the biggest laugh and hugest personality — had retinoblastoma in his left eye. My whole world had been turned upside down. I could not think. I stopped hearing what was being explained to me at the appointment, and I just remember wanting to come home to my other son and just ignore all this outside noise. We were told we would get a call and have someone talk us through everything properly within the next few days.”
Shamila said, “Telling my family was the worst thing I’ve ever experienced in my life; repeating this horrific new reality of ours, while still not even being able to pronounce ‘retinoblastoma’ or even begin to say ‘cancer’. I still had to be positive and hold it all together in front of Dayaan. I wanted to completely break down and scream, but I didn’t want to scare him. Instead, I went into complete autopilot, took charge, and asked questions. I did a little research and spoke to some families that had gone through this.”
Shamila added, “Dayaan had six rounds of systemic chemotherapy at John Radcliffe Hospital in Oxford. We went back and forth for check-ups in between. Dayaan’s immune system was so low. My poor little baby lost so much of his hair, his eyebrows and eyelashes. I then found out I was pregnant.”
Shamila explained, “Dayaan continued with treatment. Along the way, he got infections, and, on a few occasions, we had to stay in hospital. He was on IV antibiotics and was stuck in hospital rooms, isolated because of the risk of infections. It didn’t end there, as Dayaan then had his first relapse.”
Shamila added, “He had five cycles of intra-arterial chemotherapy (which goes into the eye via your artery) at Great Ormond Street, followed by intravitreal chemotherapy (which goes directly into the eye). By this point, Dayaan was six and I had a newborn baby girl. Dayaan had been battling this horrendous cancer for three years, but things did start looking a little positive for almost 11 months.”
Shamila said, “Just when we thought the cancer was gone for good, Dayaan relapsed again with more active tumour seeds. I couldn’t imagine how we could go through anymore. Dayaan was then offered radioactive plaque treatment. We felt we had come too far in trying to save his eye to give up.”
Shamila explained, “The radioactive plaque treatment was successful. We had brilliant results. Finally, we had got to a point when the breaks between appointments and anaesthetic were longer. At 11 months clear, we had talks of even moving up to clinic rather than day ward. Dayaan has been so strong, so amazing and so positive throughout everything. He has held us together as a family, smiled, laughed and charmed his way through every knock and every appointment. He has been singing and dancing through hospital corridors. He never let anything affect him or dim his light. However, in July this year we found the cancer was back. We couldn’t do any more treatment and have been advised we should now do a removal (enucleation) of his left eye.”
Shamila added, “Losing an eye was the one thing we had been trying to avoid for him. He really didn’t want this, and suddenly, we saw a huge shift in Dayaan with his confidence and personality.”
Shamila said, “It’s been a couple of months now since Dayaan had his enucleation. Slowly, as time has gone on, he most definitely is getting his spark, smile and confidence back. We treat it one day at a time – he is an absolute soldier; we are so beyond proud of him and everything he has gone through. We just know he has the brightest future ahead.”
The family received support from the Childhood Eye Cancer Trust (CHECT), the only UK charity solely dedicated to helping anyone affected by retinoblastoma.
Shamila said, “The CHECT team are a phenomenal group of people. But as a family, we have had the support of one of the most incredible women I’ve met in my life. Not only has our CHECT Support Worker supported us over the last four years, but she has always gone above and beyond to make sure we have all been ok and looked after. CHECT has helped mentally, emotionally and financially in the hardest of times. They have helped us in ways that I can’t begin to explain. Our Support Workers’ help, knowledge, and passion is truly inspiring. We couldn’t have got through most days without her care and support.”
The Childhood Eye Cancer Trust (CHECT) is urging parents and healthcare professionals to be aware of the most common possible symptoms of eye cancer – a white glow in the eye, which may appear in a flash photo or in certain lighting, and a squint.
Richard Ashton, Chief Executive of CHECT, said: “Retinoblastoma is rare, with around one baby or young child diagnosed in the UK each week. Symptoms can be subtle, and children often appear otherwise well, which makes it hard to recognise when something is wrong. In just under half of all cases, a child must have an eye removed as part of their treatment.”
Richard added: “Dayaan’s story shows the importance of retinoblastoma awareness among health professionals. We are grateful that Dayaan’s diagnosis was confirmed and that he was able to receive treatment. If you’re worried that your child may have retinoblastoma, please take them to a GP or optician as soon as possible. You can also contact the Childhood Eye Cancer Trust support team at support@chect.org.uk – they can provide information to take to your appointment. The Child Cancer Smart campaign advises health professionals to refer to the local on-call paediatrician if a child has had three persistent symptoms, has visited their health professional three times or had unexplained symptoms for three weeks.”
