We spoke to Lila’s mum, Miranda, about her experiences with retinoblastoma:
My partner and I had never heard of retinoblastoma until we started researching our daughter’s symptoms online, which led us to information about retinoblastoma and what to look out for.
Lila was around 5 months old when we first noticed something was wrong with her left eye. I had taken a photo with flash on and saw a white glow in her left eye. This was the first thing we noticed. As months went on, we noticed other symptoms, such as a slight lazy eye, closing her eye in the sun and watery eyes.
When we first noticed the glow, I rang 111 late at night as I panic a lot, and once I had read about possible eye cancer, I wanted to get it checked out straight away. We went to the hospital, where a doctor checked her eye and said it was completely healthy. After this we continued to get her checked at different places including our GP and the opticians over the months as her eye was getting worse. We were constantly told that her eye was healthy and possibly had a blocked tear duct that she would grow out of.
From first spotting symptoms to being diagnosed, it took four months. We had visited the opticians, who again said our daughter’s eye was healthy, but referred us to the paediatric ophthalmologist as we had spent months worrying and knew something was wrong so wanted to get checked properly. At the appointment, the ophthalmologist saw a large tumour in the back of her eye and referred us to Birmingham Women’s and Children’s Hospital. A week later Lila was diagnosed with retinoblastoma Grade D. We were heartbroken and felt like our world had crashed down. We were so angry we had been ignored and that it could have been spotted much sooner. We always knew something was wrong but once we were told the news, we still couldn’t believe it.
We were given a treatment plan for our daughter to begin intra-arterial chemotherapy straight away after having an MRI to confirm the tumour was just in her eye. The doctors said they hoped, given the size of her tumour, she would need three rounds of chemotherapy and then laser treatment for a year.
For the diagnosis I had my mum and dad with me, and my partner had his mum with him, so we were all there together when the news was broken to us. Lila’s grandparents were just as torn as us. We couldn’t believe this had happened to our baby, but it wasn’t a complete shock as everyone in the family had known something was wrong with Lila’s eye; we just never knew it could be what it was.
My daughter has had three rounds of intra-arterial chemotherapy so far and is waiting for her next examination to see if she needs another round. After that she will need to have laser therapy every month for a year. Treatment is going really well, and we are all so amazed by the progress she has shown already.
My daughter is still undergoing treatment, so she has her good and bad days. She has handled chemotherapy like a champ, and some days we wouldn’t know any different. She is still the happiest, bubbliest baby you will ever meet.
My daughter is now 10 months old, and she already has the best personality. She makes everyone laugh with the faces she pulls, the constant shouting to let everyone know she’s in the room, and just overall the happiest baby. When we travel to go for her treatment, we always take her baby toy and her favourite teddies. She loves playing with babies and crawling around the hospital play area with her toy baby in her hand. It has really helped that they have a play area in the ward so after she’s able to move after treatment she can have fun in the play area. She also loves being pushed around in the toy car.
CHECT has supported us since the day we found out about the diagnosis. Our support worker has been there for every worry, every question, and every problem we may have. She has helped filling out forms, supporting for our family, and just being there just for a chat if we needed. We couldn’t thank her enough.
CCLG have a Child Cancer Smart campaign aimed at professionals, advising them that if a child has had 3 persistent symptoms, or has visited their doctor 3 times, or has had 3 weeks of unexplained symptoms, it might be time for the professional to pick up the phone and make a referral to the local on-call paediatrician. Learn more on the CCLG website.