A mum from Gillingham in Kent is urging other parents to look out for the tell-tale signs of eye cancer this Rare Disease Day, after their three-month-old son was diagnosed with retinoblastoma, a rare eye cancer that typically affects children under the age of six.
Mum Sarah was cooking Shepherd’s Pie when she spotted an unusual glow in her son Thomas’ eye.
Sarah said, “My daughter was holding Thomas in her arms as I was cooking, and I noticed his eye looked like a cat’s eye. I couldn’t see it again so then I wondered whether it was just the lighting. It was playing on my mind, so the next day I moved Thomas around in different rooms near lighting and eventually I saw it again.”
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.
Sarah said, “After asking my health visitor if I was being paranoid, she said there was no harm in checking with a GP. I remembered years ago seeing something about a flash on the camera, but I had no idea what it was for or where I saw it, so I took some photos of his eye using the flash. When I Googled it, it came up with cancer.”
“It took five days of calling in November 2022 to get a GP to see Thomas after initially being told to wait two weeks. The GP looked and didn’t seem worried but when I showed the photos, he said he would refer him to the hospital, but he reassured me that Thomas was fine. He called me later that day and said that Medway hospital would see us the next day.”
Medway Hospital referred the family to Maidstone Eye Hospital after initially looking at his eyes.
Sarah explained, “That day was such a worry, Thomas had eye drops put in, and when the Doctor called us back in to his room to discuss the results, I was in the bathroom. When I came out, he was waiting for me…I knew then it wasn’t good news, no Doctor waits for someone outside the WC do they?”.
Sarah added, “Before he said anything I asked, “Is it cancer?”. He said, “I’m sorry it’s not good news…”. My world just fell apart. I just sobbed – bless him – he just kept talking and holding my hand trying to comfort me…showed me this eye model, said some words. I knew he was saying things, but I just couldn’t work out all of it…it was like slow motion and like another language. He said whatever you do don’t Google ‘retinoblastoma’, look on CHECT’s website instead. He showed me what it looked like on his computer and all I saw was eye cancer, he just kept saying I’m really sorry I couldn’t give you good news and that it was amazing that I picked up on it so early. He also said he couldn’t see it in the other eye, but he couldn’t be sure and that the specialists would be able to see much better than he could.”
Thomas was referred to the Royal London Hospital, who rang Sarah to talk her through the next steps.
Sarah said, “The next day I called my children’s schools to inform them that Thomas may have cancer and I wanted to put things in place for them before I tell them. Wednesday came and Thomas went to the theatre to be put to sleep for them to look at his eyes. The doctors came and were asking so many questions about family histories, about my pregnancy and his birth, he was also born with a cleft palate, so he had to have special bottles and I was expressing breast milk. It felt like he was down for a lifetime. The specialists who did the check came back with other doctors and nurses and we all sat down and that’s when he said unfortunately there was cancer in both eyes. He had two tumours in one eye and a massive tumour in the other which took most of his sight. Even now this makes me well up.”
Sarah added, “We told my two eldest children the night that we came back from the hospital after the diagnosis of retinoblastoma because they didn’t want to go to bed without knowing what was going on. It was so heart-breaking to see them so upset. The cancer specialist nurse at the Royal London gave us a book to help us to explain it to our other child, as he just found it very hard to understand why his baby brother had cancer. Telling the rest of the family was still hard because how do you explain to your in-laws and your mum that their grandson who is only 15 weeks old has cancer and has already lost most of his vision in one eye through having a large tumour?”.
Sarah found conversations about Thomas’ cancer diagnosis difficult.
Sarah explained, “I found people avoid the conversation of cancer. Some asked, “Is he going to die?”. “No, oh that’s good news then.” We had a lot of “he’ll never remember this” and “he’s still a baby. He’ll get through it.” That was really difficult because yes, he won’t remember it, which is a good thing, but it was just really difficult because he was so poorly through treatments.”
Thomas received his first round of chemotherapy on the 25 November 2022, and his second round on the 22 December. He has had six rounds of chemotherapy altogether, as well as three blood transfusions, infusions or potassium and magnesium, two platelet transfusions, and two sepsis infections. Thomas suffered from allergic reactions to the dressings, and he also ended up on a feeding tube due to not drinking much milk. On top of this, the family were also evicted from their home.
Sarah said, “When Thomas was diagnosed on the Wednesday at Royal London, that Friday we were also given a letter from my landlord to say that they wanted us out in two months, and they were giving us a section 21. We emailed them saying what are situation was with Thomas, asking whether we could stay a little bit longer until we finish his treatment, but we didn’t get a reply. So, while we were going to and from the London hospitals for a MRA and other tests I was also looking for a house and trying to pack up our home that we lived in for 14.5 years. It was very difficult and very stressful! We had no money. We had no house really and we were put through to the Childhood Eye Cancer Trust on the day that we had the diagnosis, and their support worker was allocated to us – she’s been a godsend. She helped us out with some grants. Medway Hospital was brilliant and gave us a grant as well and some Christmas presents for my four children. My mum gave us some food money because we literally had nothing, and it was just a such a stressful time. Then we found a house which was a relief just as our old landlord got back to us and said yes. You can stay for another year, but we’ll put the rent up. We decided to move into the other property we had found on the 6 January, but on the 5 January, Thomas became unwell.”
Thomas refused to drink his milk and started acting out of character and making noises.
Sarah explained, “He got really sick, and I immediately rushed him to hospital. He was very grey, had a temperature and was making little grunting noises. I was just in floods of tears. They were treating him for a potential sepsis until they had the blood cultures back to find out what was going on. The next day we were supposed to be moving. Our family were helping with the move and there was me in hospital with a very poorly son and I don’t think I’ve ever felt so alone as I did at that time. Luckily, I had a friend called Kate to Facetime who offered me so much support. It wasn’t until a couple of days later that the doctors finally told me that Thomas did have sepsis. He started to feel a lot better after a blood transfusion. I am so grateful to whoever donated the blood because they helped to save my son. Thomas perked after the blood transfusion. We were finally discharged after a week. We were allowed home on home visits, but we still had to go back overnight. Coming home to a house filled with boxes was not ideal but we made it work and then Thomas had a second round of chemotherapy.”
Thomas finished his final round of chemotherapy on the 6 April 2023.
Sarah explained, “Thomas later rang the bell on the 10 May, but by the 30 May he was back in hospital with his second round of sepsis. It was a really horrible bug again which takes a long time get rid of so we ended up going to Great Ormond Street for an emergency Hickman line removal. We remained in and out if hospital until June while Thomas was poorly. And in-between all of the hospital trips, he also had appointments for his cleft palate operation which was delayed for his cancer treatment and recovery.”
Sarah added, “Thomas hates hospitals. He’s all happy beforehand and as soon as he sees the hospital, he goes quiet. As soon as he sees anyone in scrubs, he tells them “No” straight away even when they haven’t even said or done anything. He’s also very wary of people in general, although he has started going up to staff at a local playgroup which is lovely to see. He’s very clumsy at home due to his vision and if we’re in an unfamiliar place he is very wary of the new surroundings. The impact of retinoblastoma and the treatment has been a lot really and he’s only 18-months-old. In that time, he hasn’t had that baby time because it’s been spent in hospital.”
Thomas with a ‘chemo snake’ teddy a friend made. Each colour represents something he had done.
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, “We are grateful that in Thomas’ case, his symptoms were recognised so that he could receive treatment. 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”.
Sarah said, “Thomas is a very happy little boy. He loves playing with his older brother rough and tumble the floor. He will tell his sister to read him books, and they’ll sit on the floor, reading books and singing. He’s such a cheeky little boy who loves food, Hey Duggee and going out.”
For more information on the signs, symptoms, and treatment of retinoblastoma, please visit chect.org.uk.