Mum Danielle shares Evie’s retinoblastoma diagnosis story with CHECT for World Sight Day.
It was 11th January 2023 and a day like any other day. I was feeding Evie lunch whilst she was watching her favourite presenter ‘Miss Rachel’ at the time when I noticed a haze or a cloudy smear across her eye. I initially thought that maybe she rubbed food in her eye (she used to always rub her eye or where she had food on her hands she would rub her eye or face). I went to wipe with a baby wipe around her face and gently on her eyelid. The glaze wouldn’t go. I decided to take a photo on my phone with a flash on to see if I could see what it was and a white glow would appear only in her right eye. I thought it was strange and showed my mum who said it could just be the reflection of my flash.
I went straight to Google as I had never seen this in Evie’s eye before. I took more photos from different angles, and it was still there. I took a photo in a different room of Evie, with different lighting, I used my mum’s phone as well as I thought it was my camera but the same happened on my mum’s phone. I saw Google said ‘retinoblastoma’ which I read was eye cancer. I had not heard of retinoblastoma before Evie was diagnosed, or any type of eye cancer before. I was always oblivious to cancer as it had never appeared in my family so never thought this would happen to us.
Once all the symptoms kept flagging up on Google as ‘retinoblastoma’, my heart sank. I then thought, Google always shows the worst thing it could possibly be. I rang the GP straight away that afternoon at 3pm and they gave me an appointment within the next hour the same day to see Evie. I took Evie down on Wednesday 11th January and the GP ran a red reflex test (shining a light on Evie’s eye) to see if red would reflect. The right eye did not and my GP then sent an urgent referral to Ophthalmology to St Helier Hospital to examine Evie’s eye properly and run further examinations. All I did was cry and Google and search endlessly to see if there was something else it could be other than cancer to make me feel better. I couldn’t cope with cancer. It destroyed me knowing that my only child that I had longed for and took so long to conceive was unwell. I hated waiting to know if she was ok. We got seen by St Helier Hospital on Friday 13th January the same week where the consultant put eyedrops in Evie’s eye and examined Evie and also did an ultrasound on her eye which showed a mass tumour with calcium deposits which usually would mean cancer. Our hearts sank again as this kind of told us what we knew already – it was retinoblastoma. St Helier then sent a referral to Royal London Hospital.
We went to Royal London on Wednesday 18th January and they did EUA (examination under anaesthetic) check and that’s when the proper diagnosis happened. The consultants, the specialist nurses, the whole Rb team came round to our room to break the news of the unilateral (cancer in one eye) Grade D retinoblastoma diagnosis of Evie. I had my mum and partner there (Evie’s Dad). We relived the trauma of the gut-wrenching news that we had leading up to this point as we already knew from St Helier Hospital it was retinoblastoma. We just felt numb. I couldn’t eat for a few days, I couldn’t sleep. I was endlessly Googling or searching up ways to treat retinoblastoma, the success rate, the survival rate; everything.
Treatments were discussed briefly such as enucleation of the eye which we did not want. They said as it is Grade D that we could explore chemotherapy treatment but would have to discuss it with Great Ormond Street Hospital once they send over Evie’s diagnosis. We had to have a Zoom meeting with the Oncologist on Friday 20th January where I decided for Evie to have intra-arterial chemotherapy.
Evie had 3 courses of intra-arterial chemotherapy (IAC) to start in January 2023, Feb 2023 and March 2023. After her first IAC treatment in January, the tumour shrunk a big amount straight away. After the second IAC her tumour was already dead and stable but she still finished her course and had her third IAC. Evie was great throughout; we did have ups and downs with it all as she had to be put under anaesthetic each time and the procedure took 2 hours to do. Once the procedure was done, she then had to lay flat for 4 hours after each IAC because where they catheterised through her femur artery, they had to apply pressure to keep the wound close. She was always sick after each IAC round so she felt poorly each time but always recovered fast by the next day. Unfortunately, by May 2023 EUA’s check, it showed Evie did relapse and had two tumours growing in her one eye from seeding. We had to go through options again with GOSH and we decided to go for another 3 rounds of IAC instead of enucleation. We wanted to try to save her eye. Evie had another 3 courses of IAC from June 2023 till August 2023 with a higher dose of chemotherapy drugs. Her tumour was stable after her first relapse course of IAC but we all decided it would be best to continue the three courses just to make sure. From her EUA by the end of August 2023, the tumour showed stable and her retina has reattached, no seeding at all. She had another EUA in September and again it showed it was stable and now we are going for 8 weekly checks.
Evie is doing great. Evie does not look like she has gone through what she has gone through. The only thing that has affected her is her confidence with people. She is scared of any adults or children she does not know and hangs on tight to myself as she thinks everyone wants to hurt her. It takes her maybe an hour or so to warm up or feel comfortable to play with strangers around. We are working on this by taking her out to soft plays or around friends and family who have children. Evie is now 20 months and will be 2 in February. She was only 11 months old when first diagnosed with Rb.
Evie has always been energetic. She loves climbing, playing in the sand – she is a water baby. What really helped Evie was having us family around, and her favourite TV shows on her iPad such as Miss Racheal, Peppa Pig, Nursery Rhymes, Mr Tumble, Iggle Piggle. She loves going around my mum’s house to play with Duke the dog and also the cat ‘Laz’ as she is a big animal lover. She loves going swimming so we would always take her swimming each weekend. We would take her to the park and see the ducks and birds. The treatment days were hard but Evie always bounced back quickly and just wanted to be on her feet and play.
CHECT have always been there, calling or texting me. Lena has been great and always offered her support and checked in every time we have been at Royal London Hospital through the good and bad times. As I haven’t been able to work or go back to work, she has helped me with contacting charities for financial support. CHECT are great and cannot recommend enough.