The week that changed our lives

CHECT photo - Ethan Warman

One evening, Michelle Turner spotted an unusual white glow in her toddler’s eye. Just seven days later, she was told her boy had cancer. She tells their story…

Monday

It was a typical weekday evening, just like any other. I was brushing my 23-month-old toddler Ethan’s teeth before bed when I noticed a strange white reflection in his right eye.

At first I thought it was just a harmless reflection but when I moved Ethan’s head from side to side the white glow didn’t go away. Confused, I called for my partner, Dean, to come and have a look.

Neither of us had a clue what it meant, if anything, so we decided that we would take him to the doctor first thing in the morning. Meanwhile, Dean went online and googled “white mark in pupil”.  When he realised that it could be a symptom of something serious, we started to worry.

CHECT Photo - photo of Ethan at five months which shows the white glow

We read that you might be able to see the white glow when a photo had been taken using a flash so we started looking through old photos of Ethan.

We were shocked when we spotted the white glow in photos going back months. We’d had no idea.

Tuesday

After a sleepless night, we called our GP first thing in the morning but they couldn’t see Ethan until later that day so we decided to take him straight to the local minor injuries clinic.

They saw Ethan straightaway. After looking at his eye, they called Kidderminster Hospital’s eye department, and they advised us to take Ethan to the optician that day, who would refer him urgently if they had any concerns. As soon as the optician examined Ethan’s eye, they said they were going to refer him.

At this point we were starting to panic but we still felt hopeful that the worst case scenario was also the least likely one. Ethan had already been through a tough time in his short life – he was born with a cleft lip and had surgery to repair it when he was four months old. Surely that was enough for one little boy?

Wednesday

We took Ethan to Kidderminster Hospital, which is the first time the word tumour was mentioned. The doctors examined his eye and told us that they were going to refer Ethan to Birmingham Children’s Hospital, one of two specialist centres for retinoblastoma in the UK.

At this point all we could do was wait for the appointment, which we knew would be in the next few days.

Thursday

I got a call from the retinoblastoma nurse at Birmingham Children’s Hospital to tell me that they had made an appointment for Ethan to be seen on Monday. She was really helpful and we talked for ages about what would happen next.

We knew that getting through the weekend was going to be hard, and Monday loomed ahead of us, but we had to just get on with it and act as normally as we could for Ethan, his brother Mark, seven and sister Chloe, five.

Monday

Just seven days ago, our life was normal. Now it seemed anything but. As we took Ethan into hospital to have his eye examined under general anaesthetic, we had no idea what the future held for our little boy.

Still clinging on to the hope that it could be a false alarm, nothing could prepare us for the news that Ethan had retinoblastoma, a type of eye cancer, and that he needed to have his eye removed as soon as possible in order to stop the cancer spreading and save his life.

It was such a shock. Everything happened so quickly that we barely had time to take anything in. One minute all we’d seen was a small white glow in Ethan’s eye and the next we were being told that he had to have his eye removed. We had never heard of retinoblastoma before and had no idea what the symptoms were.

Ethan had a grade E tumour, which is the worst grade, and his retina was totally detached. His whole eye was practically a tumour and he had slowly been going blind in that eye for months.

We had just 48 hours to come to terms with what had happened before we had to take Ethan back to hospital for surgery to remove his eye.

CHECT Photo - Ethan after surgery

The days that followed

Two days after he was diagnosed with retinoblastoma, Ethan had his right eye removed.

Three weeks later, he had his central line fitted and the next day – Saturday 15 October 2016 – he celebrated his second birthday. On the Monday he started chemotherapy.

Ethan needed four rounds of chemo. He also needed blood and platelet transfusions. We had to explain to his brother and sister that Ethan was going to look different – not only because of the treatment but also because he would need to wear an artificial eye for the rest of his life.

We couldn’t believe how well he coped with everything. When he first went in for his operation he was very scared of everyone and kept clinging to me. But since then he has taken it all in his stride and has been happy and smiling all the way through.

Ethan’s attitude is what has got me through it all – if he can manage to smile and find the good in things, then we should too.

Looking to the future

At the end of January, Ethan had his central line removed. While he’ll still have to have examinations under anaesthetic every two to three months for at least a year to make sure the cancer doesn’t return, he is doing really well and we feel like we can finally start to look forward again.

CHECT photo - Ethan and his family

I can’t wait for things to get back to normal and Ethan is really excited to go to playgroup and see his friends. It has been hard to come to terms with what has happened and I have my off days but I am taking inspiration from Ethan and taking each day as it comes.

We really don’t want Ethan to worry about his image as he grows up – we want him to be happy and confident in his own skin and we will be doing whatever we can to make sure that happens.

We are now campaigning to raise awareness of retinoblastoma and funds for CHECT. Mark and Chloe’s school in Bromsgrove – Sidemoor First School – have raised over £600 from Christmas performances, and Dean and Mark are doing a 5km Bounce Run in June.

We really want more people to know about the signs and symptoms of retinoblastoma, both parents and healthcare professionals. We had no idea that the white glow could be a symptom of cancer and looking back at old photos of Ethan, we can’t believe it was there all along.

Please take a few moments to read about the symptoms of retinoblastoma – early diagnosis could save your child’s eyes, sight and life.

If you would like to sponsor Dean and his son Mark, please visit their JustGiving page.

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