Posted on Friday 7 June 2019

Sofyan’s story – It was his life over his limb

When Sofyan was nine years old, his mum spotted a lump on his leg. As a keen footballer, they assumed it could be a growing muscle, but went to hospital as a precaution. Eight hours and several tests later, they were told he had bone cancer. Here, Sofyan’s mum Raoda, tells their story.

Sofyan and his mum

Finding out what his lump was was one of the most terrifying things that’s ever happened to any of us. It was completely heart-breaking; he was always such a well child. Our world crashed down around us and suddenly we were thrown into this world of hospital wards and appointments.

His cancer is extremely rare, so there wasn’t a lot of information around. We were told there were no guarantees chemo would work, and by the second round it was clear it hadn’t. That left us with only one other option – amputating Sofyan’s leg to stop the cancer from spreading.

"It’s the most difficult choice we’ve ever had to make, but ultimately it was his life over his limb."

Sofyan was part of every decision and kept informed throughout. The Surgeon asked Sofyan what his worries are if he did have the amputation, and the only question he asked him was ‘will I be able to kick a ball again?’. Before making the decision he said, ‘After listening to everything, the best thing is to amputate.’ Everyone had a tear in their eye. Sofyan was so brave.

The worst thing is seeing your child suffering, and feeling helpless. You’re putting your child’s life into someone else’s hands and that’s really really scary. It completely changed our lives, one minute we’re happy and he’s spending four hours a day playing football, and then he’s in a hospital and he’s going to lose his leg. It all happened so quickly.

We met Barbara, our CLIC Sargent Social Worker, in hospital before Sofyan’s chemo. That was the scariest time for us as a family, so to have her with us was so important. She helped us cope emotionally, but also gave us practical support, such as filling out forms to help us access benefits and grants. It sounds like a small thing, but filling out complicated forms was the last thing I needed at that point, and she lifted that burden.

Without Barbara I would have been really lost. There were so many times when I didn’t know where to go for help but she was always there with a phone call or a message. Barbara had such a good bond with Sofyan, too. She was able to put him at ease about the scary things he was going through, but they also had lots of fun. Whenever we go back to hospital we try to see her because she played such a vital role for my family during a horrible time.

GET IN TOUCH!

CLIC Sargent is the UK’s leading cancer charity for children and young people, and their families.

To find out more about how we help young people cope with the impact of cancer, please visit our what we do section. If you need support yourself please contact us using our online enquiry form or call 0300 330 0803. 

Related Stories

Lois’s story: “The hardest was when I was in hospital, when I was really ill and I just wanted to cuddle her.”

Monday 22 June 2020

Lois was diagnosed with neuroblastoma at 19, after months of back pain so painful she couldnt lift her baby daughter

Oliver’s story: “The support from CLIC Sargent was vital, we couldn’t have functioned without it. No family should have to face cancer alone. We know what a difference the vital emotional, financial and practical support can be.”

Thursday 18 June 2020

Mark and Donna’s family were supported by CLIC Sargent when their son Oliver, was diagnosed with a brain tumour in 2010, and with soft tissue sarcoma in 2018. He sadly died aged 15 last year. Here, Mark and Donna share their story.

Mum Donna with Oliver.