Mum Lesley tells CHECT about James’ journey with retinoblastoma, and what life is like now:
James is a happy, healthy and energetic 9-year-old. He loves school, steam trains and eating (lots). In his spare time he attends Cubs (where he has just achieved his Silver Award), swims and plays percussion in a band. He loves playing the drums and spends time outside of school climbing, abseiling and archery. We are reminded every day of our son’s strength, bravery and perseverance. The first few years of James’s life weren’t easy, they were filled with lots of trips to the hospital. One of those trips began when I noticed his left eye moving in a different direction.
James’ left eye kept looking in a different direction, a sign of retinoblastoma
When James was 3 years old, I noticed his left eye moving in a different direction, so we visited the GP where they examined James’s eye and referred him for a squint. Over the next few weeks, I started to see more symptoms emerging. I remember his eye looking almost transparent and there were times when it looked red and sore. Because the referral date was months ahead I decided to drive James straight to the eye hospital in Oxford where he was examined. The examination concluded that James was blind in his left eye and that he had a large tumour behind his eye. I remember the hospital not going into detail about James’s condition but referring us to the Birmingham Women’s and Children’s Hospital where they performed an eye examination under anaesthetic and confirmed that James had bilateral retinoblastoma (cancer in both eyes). As parents, it was difficult news to hear and digest, it felt like the four walls of the room were closing in on us. I, as a Mum, was immediately overwhelmed by guilt thinking that I should have seen or done something sooner.
James with his brother after retinoblastoma enucleation surgery
That day, we were also informed that because the cancer was more advanced in his left eye, it could not be saved and that to guarantee James’s survival the left eye would have to be removed. It was in October, just after James turned 4 that his left eye was removed and replaced with a prosthetic implant. A decision was taken to also treat any residual tumours in the right eye with Laser treatment.
James never complained or cried during his treatment, he still remains a happy boy and in the coming weeks looks forward to celebrating his 10th birthday.
He doesn’t think twice about his prosthetic eye, and is just like any other child his age. The tumours in his right eye have not affected his vision but he continues to visit the Oxford Eye Hospital for six-monthly check-ups.
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