Children with cancer should be seen as more than their cancer

This September for Childhood Cancer Awareness Month, Young Lives vs Cancer is calling for the voices of children with cancer to be heard and not forgotten, as they continue to face the challenges of treatment during a global pandemic.  

As the UK’s leading charity for children and young people with cancer, Young Lives vs Cancer is making sure children are listened to as they share their stories first hand – and talk about childhood and their dreams – to show they are more than their cancer. 

Rachel Kirby-Rider, CEO of Young Lives vs Cancer, said: “Having cancer when you’re a child is scary, lonely, relentless and painful. Over the past year children have missed out on so much.  

“But for many children with cancer they are still swapping classrooms for chemotherapy, still waving at family members through windows and watching friends blow out birthday candles via phone screens. Cancer hasn’t gone anywhere – children are still being diagnosed. 

“This year for Childhood Cancer Awareness we want everyone to see children with cancer for who they are and who they want to be. They may be little, but they have big voices and they want everyone to hear them. They are more than their cancer.” 

Jeremy Attoh Ammah, 13, from Slough, was diagnosed with cancer in March last year, just as the country went into lockdown. He was only allowed one parent on the ward with him at a time and missed seeing his friends and family.   

Diagnosed with osteosarcoma in his leg, a type of bone cancer, Jeremy had surgery and chemotherapy and spent months away from home and seeing his little sisters.   

Jeremy is sharing his story this Childhood Cancer Awareness Month to shine a light on what life has been like for a child with cancer - and why children like Jeremy cannot be forgotten.   

Jeremy said: “Last year I was diagnosed with cancer – osteosarcoma – just before the pandemic. I had been feeling pains in my knee and ankle, but the doctors didn’t know what was wrong. The pain made me cry at night. Then my mum took me to hospital and that’s when everything started.  

“I was in the room with my mum and dad when the doctor told us I had cancer. I started crying and asked was I going to die? I started Googling, checking what osteosarcoma is and asked if I had treatment would I lose my hair? 

“When I first went to hospital it was quite fun, but when you start to realise you are away from school it’s quite bad and you just want to be able to do all the activities and get better.” 

Jeremy not only felt the effects of treatment, but of lockdown too.  

He said: “I was a bit startled when I heard there was going to be a lockdown. The worry I had was if I was going to catch the virus and spread it to my family. I think it did affect the hospital in that when people get hurt family members weren’t allowed to visit. I was only allowed one parent with me in hospital. It is quite difficult for one parent only to look after a child in hospital.  

“When I went home, I still wasn’t allowed out. Especially during lockdown. You don’t get to go out much; it was very quiet in the neighbourhood. We weren’t able to visit anybody or have anybody come into our home because we didn’t want to catch the virus or get ill from it because of my illness.  

“I felt upset and angry a bit because I wanted people to come and visit me. The hardest thing about it was not being able to go to theme parks or restaurants or see family.”  

Jeremy had surgery to remove his tibia and have it replaced with a metal device motor which will grow with him,  followed by chemotherapy to treat his cancer just before Christmas and the second lockdown. 

Jeremy said: “When I heard at Christmas we were going into lockdown again, lots of people were devastated because they were going to visit family. At that time, I was recovering from surgery where the doctors replaced a bone in my leg. The doctors put a brace on my leg and I started to learn to walk again. The experience I had was painful and I was really scared. I didn’t want to break anything inside my leg, I was quite cautious.” 

During his treatment, Jeremy and his family were supported by Young Lives vs Cancer and a social worker from the charity.  

When a child is diagnosed with cancer it threatens everything, for them and their family. At a time when they should be busy being children, life becomes full of fear. Young Lives vs Cancer helps children and young people (0-25) and their families find the strength to face whatever cancer throws at them. It could be a financial grant for a parent struggling to keep their child warm through their treatment or for a young person who can’t afford to get to hospital. Or helping a family stay together at one of the charity’s free Homes from Home close to the hospital where their child is having treatment.   

Jeremy said: “We were supported by Young Lives vs Cancer and our social worker Grace. Grace helped me. She reassured me and told me the things that I could get to take my mind off the things happening around me.  

 “She helped us with what I needed and helped me to get a laptop and I was very happy! I could go on Zoom and YouTube and play games which kept my mind off my treatment and what was going on around me.” 

Jeremy is happy now to have finished treatment and excited for the future – including starring in the charity’s campaign to promote children’s voices.  

He said: “Young Lives vs Cancer has inspired people to not lose hope in their child having cancer. Although this is my story, I want to tell you about me too – because I am more than my cancer.  

“My nickname is Jeremy the Great – I even have a shirt with it written on the back. I love swimming and reading and looking after my two younger sisters. I also like acting and playing the guitar. I hate healthy foods and when other people aren’t kind. 

“I want to be a doctor when I grow up and help put smiles on children and families who are struggling, like I did.  

“I was head boy in my old school and my motto I like to live by is ‘there is light at the end of the tunnel, why let cancer beat me’.” 

Throughout Childhood Cancer Awareness Month, Young Lives vs Cancer is calling on people to help support families like Jeremy facing cancer by getting a Young Lives vs Cancer gold ribbon pin badge.    

The badges are available at Young Lives vs Cancer charity shops, Morrisons stores, or order one online at for a suggested £1 donation.    

Supporters can also take part in Challenge60 – and fundraise by completing 60 miles throughout the month anyway they like. From walking, running, cycling or even hopping, supporters will take on the distance of the average 60-mile round trip it takes for a child to travel to hospital for life-saving cancer treatment.   

ENDS

Notes to editors

For more information please contact Jessica Browne on 077 4119 5055 or email on jessica.browne@younglivesvscancer.org.uk

About cancer in children and young people
Today, 12 more children and young people in the UK will hear the devastating news that they have cancer. Treatment normally starts immediately, is often given many miles from home and can last for up to three years. Although survival rates are over 80%, cancer remains the single largest cause of death from disease in children and young people in the UK.

About Young Lives vs Cancer
When a child is diagnosed with cancer life becomes full of fear, for them and their family. Fear of treatment, but also of families being torn apart, overwhelming money worries, of having nowhere to turn, no one to talk to.

Young Lives vs Cancer is the charity that helps children and young people (0-25) and their families find the strength to face whatever cancer throws at them. We’ve been there before. We’ll face it all, together. For more information, visit www.younglivesvscancer.org.uk

Note to sub editors
Always use our name in full: Young Lives vs Cancer and write it with only the Y, L and C capitalised. But don’t capitalise ‘vs’.

‘Young Lives vs Cancer’ should be not be abbreviated – it’s not “Young Lives” for short, nor “YLvC”.