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Victoria Payne

Christopher Payne, post treatment, aged 4Our son Christopher was diagnosed with unilateral left eye retinoblastoma in August last year.  My husband and I had no idea children could even get cancer in their eyes until we watched the ITV drama "Harley Street," which featured a baby with the condition.

Since watching the programme I thought I had better check Christopher's eyes, then aged three years old and our other son Thomas's eyes, then aged four months old.

Upon looking closely I noticed that Christopher's left iris was a slightly darker blue than the other and decided to look back at our photos to check for the white reflex which to my horror was evident in some of the photos we had taken a few months before. 

I took Christopher down to see our GP and she established he had little or no vision in his left eye, but could not give us any indication as to what was wrong.

We were so worried we took him to St. Thomas's Hospital eye A&E. The doctors there were fantastic and got us an appointment to see Mr. Reddy at the Royal London Hospital the following week where we met the RB team including CHECT's charity support worker who explained everything to us.

We received the news Christopher had retinoblastoma in his left eye, and it was made clear his vision had completely gone and enucleating was the only option, especially as his right eye was unaffected and healthy. Christopher Payne before diagnosis

CHECT were very supportive and gave Christopher books and a toy "Dino" the dinosaur with a removal eye to help him adapt which he loved.  Shortly after Christopher's enucleation we received the news that the tumour was large and some spread was present so he underwent chemotherapy at Great Ormond Street hospital.

CHECT put me in contact with a parent who had been through a similar experience and it was great relief to talk.  As Christopher was three years old at the time he was well established at his pre-school. CHECT really helped us make the decision to keep him attending, as much as possible, during treatment as he got so much out of going and seeing his friends. They even entered CHECT's Art for Eyes competition and had loads of fun with the children producing it.

At the end of his treatment Christopher had another EUA check at the Royal London in January and all was well with his right eye and left socket.  Our local paediatric homecare nurse stopped coming, he was fitted with a fantastic false eye and life was getting back to normal once again.

Then half term came and I suddenly remembered about the pre-school immunisations that Christopher hadn't had due to the chemo. He was starting school in September so I phoned to sort them out only to be told he was not to have any immunisations six months post chemo treatment!

Then it hit me like a bullet train all these questions I hadn't asked, or worse still forgotten. There had always been a doctor to ask or the nurse that came every week to do Christopher's dressing and bloods, now suddenly there was no one. I was scared, upset and totally exhausted from dealing with the diagnosis, treatment, hospital stays and juggling people to look after the baby during it all. I felt as though I would never be able to move on from the worry of it all.

My husband and I wrote down all the questions and anxieties we felt and got back in touch with CHECT.  They were fantastic; we spoke to their counsellors and oncology nurse to talk about everything.  I truly believe that thanks to CHECT we have been able to put things into perspective and move on from retinoblastoma with my sanity intact!

We heard about the annual members day in Birmingham and were really keen to go a year on from treatment.  Christopher, now four years, and Thomas, now 18 months, had a great time in the crèche they provided and merrily came out with a string of crafty things they had made and Christopher had his face painted as a tiger.

I got an enormous amount out of the session groups and had a load of questions answered. We spoke to lots of different people who had been affected by Rb and the atmosphere was positive and friendly.

So all that's left for me to say is a big thank you to CHECT for all you do for people like us – keep up the good work.

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