Sayra's story

Sayra, from Birmingham, recently joined Neuroblastoma UK as one of our first Volunteer Charity Ambassadors. She had stage 4s neuroblastoma as a baby and in February 2022, celebrated qualifying as a solicitor. Now 26, Sayra shares her story.

Symptoms and diagnosis

“I hadn’t been drinking my milk so went to the GP on a few occasions and it was dismissed as digestion issues”

Sayra was diagnosed with stage 4s neuroblastoma when she was 10 months old

“I was diagnosed with stage 4s neuroblastoma when I was 10 months old. I hadn’t been drinking my milk so went to the GP on a few occasions and it was dismissed as digestion issues.

A few months later, when my parents / grandma used to change my nappy, they noticed a hard lump in the middle of my abdomen. So my parents decided themselves to go straight to A&E.

I was admitted for further tests and scans. I was diagnosed with neuroblastoma and I stayed in hospital until I started my first session of chemotherapy.

I had chemotherapy to shrink the tumour and then had surgery which completely removed the tumour. I was discharged aged around 14 months old but it was around a year from my diagnosis until I was cancer free.

My Mum always tells a funny story about my diagnosis. Because I’d been refusing food, the doctors wanted me to eat. As soon as it was given to me in front of the doctor, I ate the full meal and even asked for more!

My life after treatment

“...(my scar) has pretty much faded but I accept it and embrace it - and it’s something to be proud of.”

For the first few years after my treatment, it was really worrying for my parents. But as I got older, it reminded me that I was a bit different. When you’re a teenager, you don’t want to be different - I just wanted to fit in and be normal. I didn’t want to tell people that I was going to hospital for cancer check ups or that I’d even had cancer.

I actually enjoyed going to the hospital though, it almost felt like home and I loved seeing my doctor. All the staff at the hospital were amazingly sweet and kind people. I visited the hospital every year for check ups until I was 16 - that’s when they told me to go and live my life.

More than anything, I was conscious about the scar on my tummy; I had my surgery before keyhole surgery was available so I had a noticeable scar. Now, it has pretty much faded but I accept it and embrace it - and it’s something to be proud of. For young girls growing up now, I like to think the world is a kinder place and we should all be proud of our scars.

Fond memories

“The hospital had such a nice atmosphere and despite everything, I have fond memories of the place.”

Sayra as a happy little girl

I remember being about four years old and causing chaos by running around the clinic! I was always like that during my visits; and my parents say that when I was a baby I’d have my drip and would be walking around the wards laughing with everyone and playing with the toys. I LOVED the toy selection, it made me want to go back to the hospital! And the nurses were so sweet, they’d put a tube and plasters on my toy penguin before me, so I could see that if he was OK, I’d be OK too.

The hospital had such a nice atmosphere and despite everything, I have fond memories of the place. The hospital never felt scary. Only when I was older did I realise what hospitals meant; that they could be a sad place. Once I had access to Google, it all became a bit more daunting.

Another memory is when I told a teaching assistant at primary school that I didn’t want to take my vest off for PE as everyone would see my scar. And she told me to stop making things up! I remember being really shocked at the time that she'd think I’d make up something like that, but now I appreciate that she probably didn’t think children could even get cancer, let alone have the scars to prove it! Even today, when I told my boss about my history to get reference before I became an Ambassador for Neuroblastoma UK, he was shocked and hadn’t heard of this cancer or childhood cancer in general.

And that’s one of the reasons why I volunteer my time to help the charity - I want to raise awareness of childhood cancer, especially neuroblastoma. There is such little awareness about neuroblastoma and I will do my absolute best to help and promote research findings and raise awareness of symptoms.

A lasting impact on the whole family

“There’s a real lasting impact on a family when a child has cancer. It stays with you forever.”

But my parents really went through it. My parents were only in their 20s when I was diagnosed with cancer. Mum was the same age as me now - that’s what upsets me more than my own experiences, I just can’t imagine it. My parents were always open with me about my cancer and treatment from a young age. They never hid it from me and we always talked about it. But I know it was a really hard time for them and the whole family. My grandma still talks about it today. There’s a real lasting impact on a family when a child has cancer. It stays with you forever.

Thankfully, I've been completely fine following treatment with no long term side effects. My experiences have definitely spurred me on. I feel like I’ve had a second chance and perhaps I appreciate life more than most. If I'm having a hard day or feeling unwell, I remind myself that I had cancer and got through it - I can handle anything life throws at me now. It makes you feel a bit like a superhero!

Giving something back

“I never want to forget that really important part of me. I appreciate what it is to go through treatment and I understand what families are experiencing.”

Sayra recently qualified as a solicitor

As I grew up, I wanted to do something to give back. I thought I might be a doctor then realised it’s not for me as I’m quite squeamish! I was the first person in my family to go to university and they’re all so proud of me for qualifying as a solicitor. I’m doing something I find really rewarding and challenging.

I feel like I've been successful in my life and career but never want to forget that really important part of me. I appreciate what it is to go through treatment and I understand what families are experiencing.

I want to help inspire people and let them know that there can be a positive outcome. When you’re in that moment, it’s difficult to see outside of your own little bubble. Everybody needs a bit of hope - even a tiny glimmer, so if my story can help other families or inspire kids who have survived, I’m satisfied with that. I know my Mum probably would have benefitted from positive stories and that’s why I’m sharing mine today.’’

Become a Voluntary Charity Ambassador

We are looking for Volunteer Charity Ambassadors across the country, to represent Neuroblastoma UK in your local community. If you’re passionate about finding a cure for childhood cancer, we’d love you to join us.

As a Volunteer Charity Ambassador, you could help support our work by selling pin badges or help coordinate fundraising events in your local community - plus lots more to suit you. Find out more >>>