Mum Lucy reflects back on Lavinia’s journey with retinoblastoma, a rare cancer that typically affects children under the age of six.
As a newborn baby we noticed a slight squint in Lavinia’s left eye. We asked the health visitor who told us it was common and her eyes just needed to strengthen.
At the beginning of October 2016, when Lavinia was seven months old, Lavinia’s daddy, Steven, had noticed a glow reflecting from Lavinia’s eye. I couldn’t see it and mostly dismissed it. Steven saw it several times and good old doctor Google told him it could possibly be cancer, but either way to get it checked. I’m an optimist but Lavinia’s daddy pushed for her to be checked by the GP. On 25th October Lavinia went to the GP and he too saw the glow. He was amazing and tried to get her seen within the next few hours at the hospital. We couldn’t be seen until the following day, so we had a fair bit of worry, and ‘what ifs’ while we waited.
The next day we went to the eye clinic at the hospital to have her eyes checked, but she was asked to come back a few days later so that they could have a better look.
On 31st October, it was Lavinia’s first Halloween! Whatever plans we may have had were completely put to the back of our minds as we had to take our little lamb to hospital to be put to sleep for the very first time. Lavinia was dressed in her super baby costume, cape and all! It was the first time we had to refuse milk and food from her, and the first time we’d kiss her goodbye and anxiously wait for her to return. The hospital staff where amazing. We were taken into a room by a doctor- at the time we’d never met but she has since been a massive part of Lavinia’s care. She sat us down and told us, “We believe your daughter has cancer, it’s called retinoblastoma. It’s a rare childhood cancer that affects her eye.” I don’t remember much more about the day. We were told we would be going to the Royal London Hospital on Wednesday for Lavinia to be put to sleep again for an official diagnosis.
We felt ready on 2nd November; ready for the long train journey, ready for Lavinia to be put to sleep and ready to hear her official diagnosis. We were told she was a grade D tumour. We had an option to remove Lavinia’s tumour, which meant removing her eye, or we could do chemotherapy and possibly save whatever sight was remaining in Lavinia’s eye. We chose chemotherapy. We met lots of people who offered us lots of support, CHECT staff, the retinoblastoma team, play therapist and lots of nurses who we would continue to see for many years of check-ups.
Lavinia turned 9 months old on November 21st – we spent this day at Addenbrooke’s hospital. Lavinia was put to sleep for the third time, but for her first surgery! We entered a day ward that would become a second home, a ward I’ll never forget and the children and families I’ll never forget seeing. This is where Lavinia would receive her first chemotherapy cycle. We were later moved to a ward for us to have our first hospital sleepover in as Lavinia’s chemotherapy continued to be administered late into the night.
The following day we were discharged, and what a strange feeling that was. We left with a bag of medicines for Lavinia and a booklet of what to be concerned about and when to seek advice.
Later that evening, Lavinia felt unwell – and coup was later diagnosed. This was our first longer sleepover in hospital, with visitors, a big sister Ciara and very large teddies -it didn’t seem too awful! During this first hospital stay Lavinia learnt how to crawl across the hospital floor.
On Christmas Day, we managed to avoid hospital! We spent it with all of Lavinia’s grandparents and she was mostly content or sleeping, however on Boxing Day we nipped to the hospital for bloods. It was a fun visit with big sister Ciara by our side!
Lavinia received her second cycle of chemotherapy on 30th December, followed by a hospital visit mid-January. This visit was her first tumour check since starting chemotherapy. It was an all-round positive visit. Lavinia’s tumour had drastically shrunk, and we were told Lavinia’s retinoblastoma was non-genetic and non-hereditary, meaning we didn’t pass on a gene to her, and she didn’t have the gene to pass onto her children.
On 23rd January Lavinia received cycle three of chemotherapy, this was a big halfway mark, only three more to go! Due to low haemoglobin levels, Lavinia received a blood transfusion.
She received this through the night, and I didn’t care that it was 2am and she was bouncing off the cot bars –, seeing her smile was amazing!
Lavinia’s first birthday was spent around her grandparents, and our family came to visit the following weekend and we had a small party.
On the 1st March Lavinia needed another blood transfusion. These became a few hours in hospital, but we knew she was always a happier baby after them!
Lavinia had her sixth special sleep, in London to check the chemotherapy was doing its job, and it made chemotherapy feel almost worth it to know that it was shrinking!
Her final and sixth cycle of chemotherapy was on 28 March – by this point she had lost all her hair. Lavinia rang the bell which marked the end of treatment. This was done with mummy, daddy, nanny, grandad and Ciara by her side and of course all the ward and the amazing doctors nurses and play therapy team watching and cheering her on!
Lavinia needed one more blood transfusion after chemotherapy. And we were so grateful for all the people that donate blood to make these possible. Lavinia was chosen to be the face of Retinoblastoma week – ‘Look Sharp for Rb!” – and she learnt how to walk at 14-months-old; amazing milestones when she’d been so poorly!
Although Lavinia’s tumour has stayed inactive she has regular checks to make sure it is being good! Unfortunately hospital visits cost us a lot of money; hospital parking, fuel, I wasn’t fed on the ward and loss of earnings. CHECT supported us financially. CHECT were there with a friendly face at every London appointment and phoned regularly to check-in. The support they offer to families is fantastic and very much needed!
What helped me to get through Lavinia’s treatment was being prepared. Having a hospital bag packed, having precooked meals in the freezer and keeping on top of housework. Having visitors as our entertainment helped while Lavinia had treatment. Big sister Ciara was the best entertainment and Lavinia always lit up when she saw her!
I found comfort in talking to mums who had already been through treatment for retinoblastoma. I found talking to someone who really got it helped me, and CHECT continue to play an important role in connecting families.
Lavinia is now a bubbly, quirky six year old. She loves head bands and everything sparkly! She loves swimming and is flying through the stages very quickly. Lavinia also plays the violin and enjoys listening to music.
For more information on the signs, symptoms, and treatment of retinoblastoma, please visit chect.org.uk.