A mum from the Shetland Islands is urging other parents to look out for the tell-tale signs of eye cancer this Christmas, after her thirteen-month-old son was diagnosed with retinoblastoma, a rare eye cancer that typically affects children under the age of six. As part of our Christmas campaign, we are asking for your kind donations to help our charity to be able to continue our integral support, research and awareness work.
Mum Kirstin had noticed a white glow in her son Cian’s eye as he watched TV.
Kirstin said, “On the 9 of December 2022, when Cian was 13 months old, I walked past him in the living room as he was playing with his toys on the floor. He glanced to the side at something on the TV, and for a brief moment, one of his eyes looked clouded. But it disappeared as quickly as I noticed it. I did a double take, and initially thought it must have been a reflection of the TV or the light in his eye. However, after talking it through with my Mum who was visiting at the time, I had a gut feeling that something was wrong. I knew that it could be a sign of retinoblastoma – a rare childhood eye cancer, and that was my instant concern. My friend’s son was diagnosed as a baby and she had shared information about retinoblastoma online, so that was how I knew about it. Thankfully because of her awareness raising, I knew that taking a flash photo could help me to see more clearly, although I know that a flash photograph doesn’t always show the signs so it’s still best to get a fundal (red) reflex test done.”
The Childhood Eye Cancer Trust (CHECT) says that typical signs of retinoblastoma include a white glow which may only appear in certain lights or a squint, as well as a change in the appearance of the eye or a swollen eye, although often only one sign or symptom is present. Another symptom can be a sore or red eye, without an infection.
Kirstin said, “I set up a blanket to cover Cian’s head to make it as dark as possible so his eyes would dilate and then took lots of flash photos with him looking in all directions (which he found very annoying!). After looking through most of the photos I noticed that every time he looked to his right, there was a white glow in his left eye. Typically this was around 5pm on a Friday, so I knew I wouldn’t be able to get a GP appointment until Monday and I was anxious about waiting that long. Luckily, my neighbour is a doctor and a good friend, so I sent her the photos and asked if she thought I should go to the opticians the following day or wait until Monday. She agreed that I should ask for an emergency appointment at the opticians in the morning, and advised that if they couldn’t see him, I could take him to A&E.”
“In the morning I phoned Specsavers and emailed in the photos. I was quite blunt on the phone, stating that I thought my baby had retinoblastoma and he needed to be seen today. Thankfully, they agreed to see him straight away, and after an examination with dilating drops by a couple of members of staff, they agreed that they could see something and made a referral for us to be sent to the Eye Clinic at Aberdeen Royal Infirmary. We were flown there from the Shetland Islands on the Monday morning and Cian was initially seen in the main hospital and had an ultrasound which showed a mass. We were then sent to the Children’s Hospital to see the paediatric ophthalmologist who examined him again and confirmed that he thought it could be retinoblastoma. Although I had suspected it, I was still hopeful up until this point that I was wrong and it would be something less serious.”
Kirstin added, “Reality sank in when he asked a paediatric oncologist to join us to continue the conversation. They talked us through the basics of retinoblastoma, explained the diagnosis process, grades, possible treatments etc and then made the referral to Birmingham. They explained that he would have a general anaesthetic so that his eyes could be thoroughly examined. Once it was confirmed that this couldn’t happen until the Friday, we returned to the airport to go home for a few days. Unfortunately, due to bad weather in Shetland, we couldn’t get home on the boat until the Wednesday morning, with a flight booked back to Aberdeen and on to Birmingham the following day!”.
Kirstin said, “We spent our one day at home preparing for our next trip and took Cian and his sister to their toddler group Christmas party. We weren’t sure what news we were facing, or if we’d get to celebrate Christmas as a family so I was keen that they had a nice little memory for that Christmas in case it was our only chance.”
Cian had an examination under anaesthetic in Birmingham a week later.
Kirstin said, “He was diagnosed with unilateral retinoblastoma (cancer in one eye) which was Grade D. We were shocked when we saw the photos from his eye and to see the size of the tumour. We were very relieved to learn that his tumour was situated away from his central vision and optic nerve, to the far edge of his retina near his nose. This was the reason it was so hard to spot, as it could only be seen from a side angle if his pupils were dilated. The team were quite confident that there could be a good outcome for his vision due to the positioning of the tumour. After his examination it was decided that the best course of treatment would be intra-arterial chemotherapy, starting the following week. Again, we travelled home for a few days and returned for his treatment on the 22 of December. Thankfully we made it home on Christmas Eve after lots of anxiety that we would be apart from our 2-year-old who was staying with her grandparents at home. Unfortunately, Cian spent Christmas day in A&E in Shetland due to picking up the flu, but at least we were home!”.
The following month Cian had an MRI scan in Aberdeen.
Kirstin explained, “The appointment thankfully confirmed that the retinoblastoma was contained in his eye and his optic nerve looked clear. He also had a sample taken from his eye for genetic testing. It was a long wait for those results, however, we were glad to find out that he did not have the genetic type, as up until this stage I was worried about our daughter too. Over the next few months, Cian had four rounds of chemotherapy and responded really well to these. The fasting, laying flat, sickness following the anaesthetic and refusal to take oral medication was all a bit of a struggle. However, it was all worth it for the effectiveness of the treatment. During his chemotherapy we had to make two trips a month to Birmingham, so that was a lot of travel for Cian, and difficult for our daughter at home. We were very relieved when the team decided to move on to cryotherapy which could be done during the examination under anaesthetic. He had this treatment for another couple of months, and since then has been on monthly lasering. We’re not sure how much longer he’ll need the laser treatment, we’re just taking each month as it comes and grateful for the improvement we’ve seen so far.”
Cian has had his unaffected eye patched the last few months to try to improve the vision in the eye that has retinoblastoma.
Kirstin explained, “He is not a fan at all, and so there is lots of chocolate bribery involved! However, he’s getting more used to it now and mostly manages to keep it on for his 3 hours.”
“Cian has just turned 2 and it is coming up to a year since he was diagnosed. So far, he has been on 68 flights, and there will be 8 more between now and Christmas! Distance and travel has definitely been a huge challenge for us as a family during our retinoblastoma journey, however, we are so grateful that he can access and be supported by the team in Birmingham. We are very lucky that we have lovely supportive grandparents who look after our daughter while we’re away which makes everything easier to deal with. I’m also endlessly grateful to my friend for her information sharing and awareness raising, as if it wasn’t for her, I’m sure I would have just dismissed the odd look in his eye as a chance reflection and the outcome could have been very different for Cian. It has been a huge support having a friend who understands the parent experience and is able to answer questions, whether that be about retinoblastoma, patient travel, or just where the nearest food shop is to the hotel!”.
The Childhood Eye Cancer Trust (CHECT) are urging parents and healthcare professionals to be aware of the most common possible symptoms of eye cancer – a white glow in the eye in flash photo or in certain light, and a squint.
Richard Ashton, Chief Executive of CHECT said: “Retinoblastoma is rare, with around one baby or young child being diagnosed in the UK each week. Symptoms can be quite subtle, and children often seem well in themselves which can make it hard to diagnose. In just under half of all cases, a child must have an eye removed as part of their treatment.”
Richard adds, “If you are worried that a child you know may have retinoblastoma, please get them seen by a GP or optician ASAP. Contact the Childhood Eye Cancer Trust support team at support@chect.org.uk and they will provide you with information to take along to your appointment”.
Kirstin said, “We’re looking forward to having a much more positive Christmas this year and moving on from the difficult memories of last December. Here’s hoping the weather behaves and we aren’t scuppered by travel disruption!”.
“CHECT have been a great support to our family throughout our retinoblastoma experience so far. In the beginning, our support worker Sarah was really helpful in signposting and guiding us through accessing support. While Cian was doing his intra-arterial chemotherapy we were sometimes away from home for a week at a time. The loss of earnings from time off work in addition to amount of money spent on food in hotels/airport was a significant financial hit for us. During this time, CHECT were able to provide a travel grant which helped cover some of these additional costs.
“CHECT also kindly organised for Cian to be gifted an iPad through a partner charity. This has been hugely helpful to keep Cian entertained (and sitting still!) during all our travel. He loves having his favourite programmes downloaded for the plane. It also helped to keep him lying flat after his chemotherapy and to distract him from thinking about food and water while he’s waiting for his examinations under anaesthetic!
“Finally, we are also very grateful for the ongoing support of Sarah during our Birmingham visits. She always takes the time to have a chat, ask if there’s anything we need and have a little play with Cian. The check-ins are always appreciated.”
Kirstin added, “Due to all the help CHECT has given our family, Cian’s Nana was keen to support the 50km challenge for Childhood Cancer Awareness Month. We were so grateful to our friends, family and island community for their contributions to the fundraiser. She ended up doubling the distance target to 100km and raised almost £5000. Our local press covered the story online, in our newspaper and on the radio. I was delighted to be able to take the opportunity to raise some awareness about retinoblastoma and CHECT”.
Richard said, “As we approach the festive season, I wanted to use this opportunity to write to you to ask you for your much-needed support in helping us raise urgent funds, to make up the shortfall of income received this year at CHECT. The current cost of living crisis, which immediately followed the pandemic, means that our ability to raise funds continues to be a challenge.
“We are a small charity that receives no regulatory funding and therefore we are reliant on the generosity of our supporters such as yourselves, to help us continue to offer support to 100% of the individuals and families affected by retinoblastoma. Our integral awareness-raising has allowed us to raise more awareness of retinoblastoma. However, we must continue to raise even more awareness of the rare childhood eye cancer and its symptoms, such as a white glow or reflection in the pupil of the eye or a squint to drive early diagnosis. Our charity is here to ensure that the impact of retinoblastoma is lessened through our lifelong support, research, and awareness.
“Our dedication to understanding the needs of our families is paramount and that will never change, so please help us continue our work by donating any amount you can.
“From all of us here at CHECT, thank you from the bottom of our hearts for your valued support. Please follow this link to donate.“
For more information on the signs, symptoms, and treatment of retinoblastoma, please visit chect.org.uk.