Teddy was perfectly fine until we noticed a squint in his eye. I decided to mention this to the health visitor, who referred us to the hospital to check his eyes.
We visited the hospital, where doctors told us that Teddy had a divergent squint – when an eye turns outwards – and we were referred to a specialist in eye diseases to find out what was causing it. Teddy didn't want to cooperate during this visit, and it took some time for the doctor to examine his eyes. She advised us to go to A&E as soon as possible based on what she saw. At that moment, I knew something serious was wrong.
We noticed that Teddy's eye colour started changing, and as the weeks went on, his eye - usually a light blue colour - became darker. I googled his symptoms, and the only result that kept appearing was retinoblastoma, a type of eye cancer.
Diagnosis
At another hospital, Teddy had a dilated-eye exam, where eye drops were used to enlarge (dilate) his pupils, allowing the doctor to take a clear photo of the back of his eyes. The doctor mentioned several potential diagnoses, but deep down, I knew it was something more serious.
Eventually, we got an appointment at our local hospital, where the retinoblastoma specialist examined Teddy. After some tests and once Teddy had recovered from the anaesthesia, doctors took us to a room where we received the awful news: Teddy had retinoblastoma. To save his life, he’d need to have his eye removed.
Because of the severity of Teddy's tumour, the doctors informed us that he would be blind in that eye. Hearing this was heart-breaking, but I’d already cried so much before his diagnosis because I knew it was a rare cancer.
Treatment
Teddy was taken to Great Ormond Street Hospital for an MRI to confirm that the cancer hadn't spread. A week later, we went to the Royal London Hospital for his enucleation–surgery to remove the globe of the eye. Teddy regularly attends examinations under anaesthesia at the Royal London Hospital and appointments for new prosthetic eyes.
Challenges faced
As a family, this has significantly impacted our mental health. During Teddy's diagnosis and surgery, we also had a five-month-old baby who needed us.
We've all had to come to terms with Teddy having only one eye he could see out of and learning how to put his new prosthetic eye in and out. That comes with many infection risks, so we have to be extra cautious about handwashing. To keep his eye clean, Teddy must avoid playing in sand and similar environments.
Teddy’s been learning to navigate with vision in only one eye, which makes judging distances particularly hard for him. This has been especially difficult when using the stairs, where he needs help going down.
Being in new environments presents challenges for him because he can't see what’s on his right or any uneven surfaces he isn't familiar with. I struggle with post-traumatic stress disorder and not a day goes by without thinking about what happened to Teddy and how heart-breaking it is.
Advice for parents
When your child’s diagnosed with cancer, it feels as though your entire world crumbles. However, the support from others who have gone through similar experiences has been amazing. I discovered a new network of people on social media, and their support has been a godsend.
Facebook, blogs and other social media outlets offer an easy and instant way of communicating with others. Families can tap into a supportive network of fellow parents from around the world all facing a similar journey. Regardless of what country families live in, the feelings and human experiences of having a child with cancer can be the same. It is easy to be drawn to other cancer stories. It is important to be aware other people’s posts may not be relevant to your child and may not be factually accurate.
CCLG’s Parent and Carer Facebook group provides a safe community for parents/guardians of children with cancer to mutually give and receive support and a place for CCLG to share relevant events, services and information.