Lauren's story

Lauren was diagnosed with neuroblastoma in 1983, when she was 16 months old. Today she says, ‘It is a privilege to share my story. I’ve been given the gift of being here - now, as a parent myself, I want to give something back to help others.” Lauren tells her own story.

Lauren before her diagnosis.

Lauren before her diagnosis.

“In August 1983, my parents took me to see the doctor as I was off colour and wheezy. The doctor thought it was asthma but I went downhill very quickly. I was lethargic and generally very unwell. Mum and Dad decided to take me to A&E, where they suspected pneumonia. They drained my lung as it was full of fluid and I had an ultrasound on my abdomen, which was clear. The doctors didn’t think it was anything more sinister than pneumonia because “kids don’t get lung cancer.”

They kept me on the children’s ward but didn’t have sophisticated enough equipment back then for the relevant tests, so I was sent to Great Ormond Street Hospital. Within half an hour, my lung was drained again and they found cancer markers in the fluid.

Diagnosis and treatment

I was diagnosed with stage four neuroblastoma, and doctors told my parents that I have a 10% chance of survival.

“I was diagnosed with stage four neuroblastoma, and doctors told my parents that I have a 10% chance of survival. My parents were asked whether they wanted me to have treatment which would keep me comfortable - they had to weigh up the side effects and trauma implications of the treatment. Of course they said ‘Let’s go for it'. And I am so grateful that they did!

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“My treatment started that day - a nine week cycle chemotherapy session (the OPEC regimen) with aggressive medication. Two weeks later I was able to go home, and I continued coming home between each cycle, so every 3-4 weeks.

“In March 1984, I had successful surgery to remove the tumour - they were able to remove it all. I was then selected for a randomised trial for a new drug, Melphalan. I had a bone marrow harvest and the treatment killed everything - my bone marrow was then replaced in April, and checked three weeks later. I’ve been in remission ever since.

“The whole time was really hard on the whole family; my eight year old sister at the time had to live with our grandparents and my dad had to work as you didn’t get compassionate leave back then. Also there was no real counselling offered, for any of us. I was very acutely aware of how lucky I was to be alive, and my behaviour in my teens reflected that.

“It’s so important to tailor treatment for children now but also to follow up with the long term physical and mental health effects. I know now that talking about any anxieties is so important, but I never learnt how to process and rationalise that as a child.

It’s so important to tailor treatment for children now but also to follow up with the long term physical and mental health effects.

I’ve been very poorly but i’ve also been very lucky.

“I had a lot of scares throughout my childhood and I have also had other cancers in my life. Visiting hospital became a staple childhood memory. Despite the number of operations and gruelling chemotherapy, I’ve been very lucky to have my own children - the oncologists initially thought the treatment would damage my reproductive organs. I’ve been very poorly but i’ve also been very lucky.”

How to support Neuroblastoma UK

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Lauren took part in the Big Fun Run to kick off our Childhood Cancer Awareness Month activities in September.

You can join an event too! You can take part in a 5k Big Fun Run, a 10k in Edinburgh or for something a little more sedate, why not organise a Little Sleepover?