Sam was diagnosed after we noticed a white glow in his eye in October 2014 and took him to our local GP. We were then referred to the local eye specialist at Royal Preston Hospital who told us the possibility that the glow in Sam’s eye could be retinoblastoma and arranged a referral to Birmingham Children’s Hospital.
On our way home from Preston we received a call from the specialist retinoblastoma team in Birmingham and we had an appointment for the following week. Following an examination under anaesthetic in mid-November, the consultant confirmed he had a large tumour in his right eye, before discussing the operation that Sam would have to undergo to remove his eye and the treatment that would follow.
Sam had his eye removed three days later and we were in hospital for three days before he was discharged for home. We were told we had to wait for two weeks for the results of a scan to see if the cancer had spread anywhere and whether Sam required chemotherapy.
We were contacted two weeks later and told that as they weren’t sure whether it had spread or not, Sam would need four cycles of chemotherapy as a precaution. Our consultant in Manchester told us Sam would have a Hickman line fitted first and a bone marrow and spinal fluid sample would need to be taken as well.
We spent the night of Sam’s first cycle of treatment in the hospital as they wanted to keep Sam under observation, and he was unwell that night. We had a few setbacks along the way due to his platelets being too low, and he needed a blood transfusion on his second visit. In between all his treatment sessions, we also had trips to Birmingham for his examination under anaesthetic and his appointments for his prosthetic eye.
My husband, Iskender, and close family were my rocks during Sam’s diagnosis and treatment. It helps to have a good support system. The nurses and doctors at Birmingham and Manchester were amazing and helped us so much. I also want to thank the charity CHECT for helping us with Sam, too. The one thing I’d say to parents during treatment is to keep busy, bring plenty of snacks and things to keep you all occupied, as it’s a long day at appointments and chemotherapy sessions.
Sam is now 11 and has been cancer-free for nine years, but he still has his regular prosthetic eye check-ups. He has started his first year at high school and is obsessed with football. He has a great bunch of friends who have grown up with him and don’t see or treat him any differently.
Over the years, we as a family have done a lot of fundraising for cancer charities and, importantly, this has also given us a chance to raise awareness of retinoblastoma and childhood cancer. We regularly talk about Sam’s diagnosis, and this has been something that has helped him understand and accept what happened to him when he was younger.
We regularly raise money for CHECT and other cancer charities. Back in 2017, my husband did a charity skydive, I did ’Brave the Shave’ later the same year, we also do a birthday fundraiser every year, and we asked for donations at our wedding in 2018. Sam even held a ‘crazy glasses day’ at his nursery when he was younger. Raising money for charities and especially awareness of childhood cancer is important to us as highlighting it could save a lot of children. For families going through treatment, it can offer hope, and also helps to let parents (and children) know that they’re not alone, and support is out there.
From Contact magazine issue 105 | Winter 2024
