Noahs diagnosis

The diagnosis

How it all began

We're not really sure exactly when we spotted something wasn't quite right. I remember Ollie telling me Noah's left eye looked odd. I came and had a look and didn't have any idea what he was talking about! I couldn't see what he was looking at and dismissed it as the light falling on his eye a funny way. 

A couple of weeks later he noticed it again. We don't even have an accurate timeframe for this because it never occurred to me it could be something so awful. I'd read a post on Facebook previously about spotting Retinoblastoma in photographs (when the good eye shows the red reflex and the eye with the tumor appears white). I'm constantly snapping the kids with my phone and have never noticed anything odd in Noah's photos. I'd never heard of an odd reflection being a sign of Cancer. One evening Ollie came home from work and played around with the kids. He kept looking at Noah because he kept seeing this reflection in his eye. I told him I'd phone the GP the next day and take him in but he wasn't satisfied so he turned to google. The first thing that came up was Retinoblastoma and he decided to put it to the test. He got his phone out to take some photos of Noah with the flash on. He had to take quite a few. We were horrified when one of the pictures turned out like described on the web.

Ollie phoned 111 and they gave him an appointment with a GP at the local hospital the same night. So I sat at home anxiously with Jakey and waited to get a phone call from Ollie to say it was all fine. We felt a sense of false security when the GP sent them home with no urgent investigation. He'd told ollie he could see a mass on the eye but didn't think we should panic or that it was anything sinister. He recommended we phone our registered GP and ask them to make a referral to the local eye clinic. In the next couple of days I phoned the GP and the referral was made within 1 week. 

When we got to the eye clinic at Royal Surrey he had a sight test first. This is where we discovered how poor his sight is in his left eye. The Opthalmoligist first did a test with both eyes. Then with a patch over the left eye. Then with a patch over his right. When she covered his right eye he looked a little sad and confused. The doctor was holding up a large picture (which he had previously announced proudly was a fish) and he sadly turned to me to say 'I don't know'. I was so shocked and I almost felt like maybe he was too?? His vision had been slowly been getting worse and his perfect right eye was compensating for it completely. She put in some dilating drops and we had to wait 40min to see two consultants. The first one seemed unsure of what she was looking at. The second one seemed very worried about what he was looking at. He repeatedly expressed that he couldn't say what he thought it may be. He referred us to a specialist children's eye clinic at St. Thomas' Hospital in London. I could tell the doctor suspected something quite unusual and could sense the urgency. He was the leading consultant at the eye clinic but gave us no clues and refused to answer questions as he simply didn't know for sure what he was looking at. But the C word was not mentioned and we were still feeling fairly optimistic that it surely wasn't this rare Cancer we'd been reading about.

St Thomas' Hospital - Childrens Eye Clinic

3 days later we turned up st St. Thomas' at 8.30am to be seen by a specialist eye doctor. They had squeezed us in very early before anybody else. They did much the same tests as before. But this time instead of trying not to give anything away and a doctor unable to give me any answers, he looked at us straight in the eyes and said 'I'm afraid its bad news'. Then he said thst awful word we'd become so familiar with from all our google searches; Retinoblastoma. When we heard that word we looked at each other as we fell apart. The doctor tried to comfort us and said he couldn't give us a concrete diagnosis because he needed more tests to confirm. But he also told us that when he got our referral through he'd been hoping it was something else (a type of parasite sometimes found in the eye) but he had ruled it out. He also said that he didn't want to give us false hope. He made an urgent referral to The Royal London Retinoblastoma service. One of two Retinoblastoma centres in the UK. Even though he hadn't confirmed the diagnosis he was welling up himself when he looked at Noah and said what a lovely little boy he was. He said there wasn't a moment to loose. Unfortunately we had to wait 5 whole days until this  next appointment which was the hardest 5 days of our life so far. We didn't know what we were dealing with. Realistically the doctor seemed fairly sure it was a tumor but we had no idea what stage it was, whether it had gone beyond the eye, whether it was too late to save his eye or what treatment would follow. We just kept telling ourselves that so long as it hadn't spread beyond the eye and his life wasn't at risk we would get through it.

The Royal London Retinoblastoma Service

 We arrived at The Royal London for 7.30am. They quickly showed us to our bed on the day ward and everything seemed to happen reasonably quickly and efficiently. Noah was checked over by Nurses and the anaethesist came by to introduce himself. Noah had another sight test with their specialist. We were shown around the ward and Noah had his drops put in. Before we knew it I had to watch them put him to sleep and all we could do was wait. He came round fairly quickly and Ollie went to collect him. He was quite destressed when he woke up so we didn't have a chance to feel scared or anxious about the result of the examination anymore because we were too busy trying to comfort him. Eventually the doctors came round and told us the news we'd been expecting. There was a tumor in his left eye, otherwise known as a Retinoblastoma. It was large (1.3cm) and a grade D but they thought the best course of action would be Chemotherapy to shrink the tumor and that he had a good chance of saving the eye. Although it will by no means be an easy road and we still may face enucleation if the tumor doesn't respond as expected, we felt a wave of relief come over us after preparing ourselves for the worst case scenario. There were so many conflicting feelings of relief and destress. I'm so glad we did our research and prepared ourselves for the worst or we may not be feeling so positive about the future. We're so scared of what our poor boy will have to go through. There are so many questions and anxieties constantly going through our head. They said that Chemotherapy would be within two weeks at Great Ormond Street. Noahs 4th birthday was in a few days and they said it was unlikely to be before then so we planned to make his birthday weekend as special as we could before he started his treatment.
All the staff at the Royal London were absolutely amazing. They were calm, reassuring, yet very clear and had a senstive approach. We have no doubt that Noah is in the best hands.