A common bond

CHECT photo - Lamorna as a child

Friendships forged out of shared experiences, particularly those which involve hardship, are often the ones which endure the test of time.

Retinoblastoma was the catalyst for one such alliance when, in 1977, three families found themselves brought together to undergo treatment for the disease at St Bart’s Hospital, London.

Retinoblastoma patients were admitted into the care of the hospital for prolonged periods of time, up to a year for many children, with occasional visits home at weekends.

As St Bart’s was the only centre for treatment in the UK, many parents became semi-permanent residents on the ward – it is little wonder that bonds were made and friendships forged.

Three toddlers who raced up and down the hospital corridors on push-along bikes were; Zoe Weeks, Lamorna Parrott-Pentreath and Matt Holt.

Zoe’s story

CHECT photo - Zoe Weeks as a girl, sitting on a step eating some food

I was born in the summer of 1976, the youngest of three children. My parents first noticed my eyes didn’t look right when I was a few months old, luckily our GP at the time recognised the signs of a rare childhood eye cancer called retinoblastoma and sent my parents to St Bart’s Hospital, London, as a matter of urgency.

On the Radcliffe Ward, my parents met other anxious parents watching their babies going through radical treatment to remove the cancer. I had my left eye removed, my right eye has been left with very limited vision and I have been registered blind since a child.

My parents became friends with Matt’s and Lamorna’s parents who were also having treatment for Rb. My mum remembers us all, in our prams, going for walks through the busy London streets in between our treatments.

Over the years our parents have shared many letters, Christmas cards and photos updating each other of our progress as we grew from babies into adulthood.

With the help of CHECT‘s Facebook group for survivors of retinoblastoma, Matt, Lamorna and I, now adults with families of our own, managed to find each other on social media.

We have had many great chats and moans between the three of us on social media, as our journeys continue after Rb, with new diagnoses accruing as we get older.

In May 2016, I finally got to meet Lamorna again at a fundraising event for CHECT at the O2 in London, where we climbed over the O2 Dome with other survivors of Rb! I also managed to meet up with Matt in September 2017, for the CHECT 30th Anniversary Weekend in Buckinghamshire.

It was amazing to meet up with them both, be it on separate occasions and we seemed to just have so much in common. We are planning for the three of us to meet up this year together which I’m very much looking forward to!

Lamorna’s story

CHECT photo - Lamorna as a young child, on an inflatable boat, wearing sunglasses

Funnily enough it was Zoe’s mum who got me in contact with Zoe through social media. Zoe was already in touch with Matt, so I became the missing link. Zoe and I reunited in May 2016 (which was rather emotional after all these years!).

We met in London as we both raised money for CHECT walking over the O2; unfortunately Matt was unable to make it.

It’s amazing how well we get on and we have developed a very strong bond which is rather unique! We all share the same sense of humour and often email each other regarding problems or just generally checking in on each other.

Matt’s story

CHECT photo - Matt Holt as a small child, playing with a red phone

My mum swapped Christmas cards with Zoe’s and Lamorna’s parents throughout my childhood and adolescence.

It was the only contact the families had for many years and yet the snippets of news in those cards told stories of difficulties, challenges, successes and accomplishments which resonated strongly with my own experiences growing up with the legacy of Rb.

As a teenager, I proactively avoided anything to do with retinoblastoma until, in my mid-20s, the birth of our first son George (who unfortunately inherited the disease) prompted a thirst for knowledge and a need to re-engage with the Rb community. Email and then later social media played a key role in reconnecting, first with Zoe and later with Lamorna.

Since then, mainly using group chats, we’ve all three shared many stories, anecdotes and ‘living with Rb hints and tips’ – it feels like a sort of exclusive Rb club! We all live quite far apart and meeting up in person has been a challenge. In September last year Zoe and I finally met at the CHECT 30th Anniversary Weekend.

I must admit neither of us recognised the other (unsurprising as Zoe was wearing a nappy the last time I saw her … and so was I for that matter!). But within minutes it was as though the intervening 40 years had never happened.

I met Zoe’s amazing family, including her guide dog Revel, and we spent a happy few hours talking about the paths our lives have taken and the many ‘Rb bridges’ we’ve both had to cross. I’m certain that it won’t be long before we meet up again, hopefully with Lamorna too, so we can have a proper reunion!

This article first appeared in the Spring/Summer 2018 edition of our InFocus newsletter. You can download the full newsletter here.

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