When your little one is diagnosed with retinoblastoma, the journey that follows is an emotional rollercoaster – and no one knows this better than Sally Northfield, whose son Clark had surgery to remove his eye, followed by chemotherapy in 2015. She has shared her story so that other parents will understand that they are not alone, and that it’s okay to find it hard…
Clark’s diagnosis
At bedtime in August 2015 my husband noticed something odd about Clark’s left eye. I took a look and saw a white glow in his pupil. We put him to bed as normal and then went to A&E the next day. We had both heard about the white glow before but didn’t understand the full extent of what it could signify.
At hospital, with a torch shone into his eye, the white tumour was instantly visible. Clark had an ultrasound which showed a mass clearly covering the entire pupil area. Our local hospital has a large eye unit so he was also seen by an ophthalmologist who made an emergency referral to the Royal London Hospital. Nobody put a name to it but it was made clear we needed to be seen soon and the unsaid word that hung heavily in the air was cancer.
We felt numb and struggled to make the phone calls to immediate family to let them know what was happening. We felt drained, scared and nervous for the wait ahead. We had a call from the Royal London who talked us through what would happen at our appointment and also directed us to the Childhood Eye Cancer Trust website, telling us not to just google the subject. It was the first time cancer had been said and although no diagnosis was yet made, it seemed a certainty.
Our appointment at the Royal London was a week after we’d been to A&E. Clark had a sight test where it became clear he had very limited vision in his left eye, he could follow light but couldn’t see anything else. Clark was to be put to sleep so his eyes could be properly examined.
Clark the day after he’d had his pupils dilated at A&E, showing the tumour
Taking Clark down to the anaesthetic room is one of the hardest things I’ve had to do, handing my baby over to the team and walking out once he was asleep was utterly heartbreaking. The wait was long but while he was being examined we had drops to dilate our pupils so our eyes could be checked, which kind of helped to pass the time a bit.
Meeting Clark back in recovery was tough, I expected him to be asleep still but he was screaming and flailing about. Eventually he fell asleep in his buggy and we were taken off to a quiet room to meet with Mr Ashwin Reddy and his team. I will always remember not only the words that Mr Reddy said, but how he said them.
His kindness, warmth and ability to clearly and calmly deliver the news was a massive help. He explained that Clark did have retinoblastoma and that his tumour was large, graded E on a scale of A to E. He let us digest this before explaining the only safe option for Clark was for the tumour to be removed.
Again he let us take this in and I still don’t think I’d accepted what was coming next: “which means he will lose his eye”. I felt so desperately sad for our little boy, scared of what the future would hold, how he’d cope, how life would be for him growing up and I just felt sick.
The surgery was scheduled for the following Wednesday. That night we went home numb and sad. During the evening I think it all hit me and I fell apart. I felt like I couldn’t breathe, I could hardly stand, I sobbed and felt an overwhelming sense of grief. I don’t think I slept that night.
Sharing the news
We then faced the task of telling friends and wider family who we’d decided not to tell until we had a firm diagnosis and treatment plan. We couldn’t face phone calls so we sent group messages to everyone, even people we rarely see, we just wanted it out there so we didn’t have to keep repeating everything.
Telling our eldest son Harrison, four, was incredibly hard, he understood more than I thought he would and was a real trooper, so brave and has been amazing throughout this journey.
Surgery
The day of the surgery was easier than I thought. Once I’d accepted that losing his eye was saving his life then I knew I could cope.
It was a tough, emotional day but Clark sailed through it and was up and playing the next morning like nothing had happened. We were discharged the next day and the only difficulty really was not getting angry with people’s stares.
I didn’t blame them, my baby had a huge black eye, but I felt very protective and nervous going out. The healing process was quick, I’m still amazed at how soon the bruising and swelling went down.
Chemotherapy
Two weeks after his surgery, we retuned to the Royal London where we received the devastating news that the tumour was aggressive and had started to seed and spread. Clark was at risk of metastatic retinoblastoma so he needed chemotherapy. It was hard to accept but if I’m honest, a part of me was relieved as it would take away that element of doubt about the cancer having spread.
Clark finished his chemo a week after his second birthday, and a week before Christmas. It’s been exhausting with long days at Great Ormond Street, hospital stays in between due to infections, weekly nurse visits for blood tests and family life has been disrupted.
Clark has been incredibly tolerant and resilient and suffered very few side effects from the chemo. We decided to shave his hair after chemo started to make any hair loss easier to cope with. Seeing his hair thinning was very emotional: it was an outward sign of his battle.
Guilt
Harrison has struggled seeing his brother poorly at times and his routine has changed with family members looking after him while we’ve been at hospital or waking up in the morning to find mummy and Clark have had to go to hospital in the night.
Our Rb journey has been fast moving and we’re grateful for the swift response in diagnosis. Life is now returning to a different kind of normal but it’s a good normal.
Since discovering the tumour I’ve had a constant sense of guilt, I know it’s not healthy and I know I did all I could but there are so many what ifs that hang over me.
I’ve felt guilt that I should have noticed something earlier which might have saved his eye or stopped him needing chemo. I’ve felt guilty for disturbing Harrison’s routine and for not having the energy to give him everything he needs all the time.
On numerous occasions I’ve heard retinoblastoma referred to as the “good” cancer to get. It has an incredibly good treatment plan with very high survival rates so I understand where this statement comes from but it’s kind of damaging too.
It made me feel that I shouldn’t feel so deeply affected by my son’s diagnosis, which then led to more guilt about me trying to underplay the severity of Clark’s diagnosis and treatment. I appreciate this is part and parcel of the emotions I’m dealing with but it’s been hard to make sense of it all.
During hospital stays I’ve met families of children battling other cancers and hearing their stories has highlighted just how brilliant the treatment for retinoblastoma really is. But, no matter how good the outcome of an illness, if the road getting there is rocky then it’s ok to find it hard and I’m accepting that now.
Future
Clark after his first eye fitting
Clark has had one new eye fitting and it went really well, I was amazed at how quick it was and blown away by his new eye. It’s not perfect but it’s great for a first eye, unless it’s a day where it gets a bit stuck in place, people rarely notice anything different about his eye.
I’m anxious about learning to manage his new eye but Christmas Eve gave me a good taster when it fell out in hospital and I had no choice but to put it back myself. I did it and it was really ok. Clark has wowed us with his strength of character throughout this journey, he’s let nothing dampen his spirit or steal his smile, a lesson which I think will get us through the next challenges.
If your child has retinoblastoma please remember that you are never alone. For support, information or to be put in touch with other families going through what you are, please contact our support workers at support@chect.org.uk or 020 7377 5578.