‘She’s found her feet now’: Meet Yumna

Cancer doesn’t care if it’s a birthday, a festive celebration or a special holiday. It doesn’t care what children miss out on, or how much you want to protect them. But at Great Ormond Street Hospital Charity (GOSH Charity), we do.

In 2021, about a month after her diagnosis, Yumna and her family spent Christmas at GOSH. Salma, Yumna’s mum, remembers waking up on Christmas Day and finding the corner of her daughter’s room filled with toys.

“Yumna’s favourite present was a toy ice cream truck,” Salma says. “When she was first admitted to the hospital, she used to play with one. Chloe, a Play specialist, found another and made sure that Yumna got it. Years later, she still loves her gift!”

Yumna’s journey began in August 2021, when she started to fall ill and developed a temperature. This continued on and off for the next two months, but each time her parents took her to the doctor or accident and emergency, they were told it was a virus.

Then, in November, Salma felt a large lump on the side of Yumna’s tummy. When she tried to touch it, Yumna would move away, visibly uncomfortable. Knowing that something was wrong, Salma and her husband went to the GP, who sent them straight to the hospital.

There, after a set of scans, doctors told Yumna’s parents that she likely had a tumour. The next day, they were sent to GOSH.

A week after Yumna was admitted to GOSH, doctors diagnosed her with stage 4 high risk neuroblastoma, a rare type of cancer that affects mostly babies and young children. Yumna had a tumour on her left kidney and in her right eye.

“At that time, I felt numb and just went on autopilot, but that’s when my husband started to cry,” Salma recalls. “I’d never seen this man cry, even though we’d been married for a very long time. He cried for the next week, he couldn’t stop.”

The tumour on Yumna’s kidney continued to grow rapidly, so the team at GOSH decided to start the first stage of chemotherapy. She responded well at first, but by the third cycle, Yumna started to lose her hair.

“From that day onwards, she stopped looking in the mirror,” Salma says. “It surprises me because she was only two years old – how does a two-year-old understand all of this? She turned into a little zombie. She didn’t speak, she didn’t respond. The Yumna we knew and loved, we just lost her.”

Unfortunately, doctors couldn’t operate on Yumna’s tumour, so they decided to start her on a stronger course of chemotherapy. She seemed to tolerate it well, until the third week of the cycle, when she started to experience side effects.

One of those side effects was veno-occlusive disease, which meant that Yumna’s liver was retaining water and causing her tummy to swell massively. She started to get a really high temperature and eventually suffered a seizure.

“That day, the incredible ward sister held me so tight,” Salma says. “She took me out of Yumna's room and hugged me while I cried my eyes out because I thought my daughter had died. It was a horrible experience, but she became my guardian angel.”

Slowly, Yumna began to recover. She was able to go home before returning to GOSH for surgery to remove the tumour on her kidney. It was a success and was followed by radiotherapy at another hospital.

Salma remembers the “amazing” support given to her family while Yumna was at GOSH – support from nurses to psychologists to the charity-funded Play team. She describes leaving their ward as “bittersweet”.

“The nurses became my shield,” she says. “The whole month after we got to GOSH, I didn’t leave Yumna’s room, I didn’t get out of the hospital, I didn’t see daylight. One day, Ben, a health assistant on the ward, said, ‘I’m going to spend my lunch break with Yumna, and you're going to go outside.’ He made me go; I’m so grateful to all of them.”

In autumn 2022, Yumna started a seven-month course of immunotherapy at GOSH. She was declared cancer-free in June 2023 but continued to have underlying infections.

“We call 4 September her ‘Freedom Day’ because that's when she was found to be cleared of all infections, and her NG tube [a feeding tube] was removed,” Salma says. “I honestly felt like a whole weight was lifted off my shoulders.”

Yumna has returned to school and loves to chat, draw, sing, cook – and help people. Still, Salma says, she and her family are “working out how to be normal”.

“Yumna knows she was sick,” Salma shares. “She calls it ‘the little C’ – not ‘the big C,’ as she was so little when it happened. She missed out on family weddings, birthday parties, even just going to the park or having friends around to play.”

That’s why Salma’s enthusiastic about the new, world-leading Children’s Cancer Centre at GOSH – a place that will help give more children with cancer the best chance and the best childhood possible. It won’t just be a hospital, either; it will also be a school, a playground, a home-from-home and much more.

“Everything being together in one space will be great,” she says. “You spend so much time going here, there and everywhere between different buildings for scans and appointments. It’s tiring when your child’s sick.

“You also spend a lot of time in your child’s room, so if there was a balcony space or a roof garden where children and parents could go out for a five-minute breather, it’d make a huge difference.”

Yumna returns to GOSH every four months for check-ups. At the moment, she’s also being referred to the hospital’s neurology team to investigate memory issues. Salma says that Yumna gets sick often and has lost some of her hearing, too.

Still, Salma and her family continue to celebrate GOSH: “This is the most amazing hospital and has the most amazing staff who see you through the toughest times. We’re very grateful that our kid has been given the opportunity to come here, and I say that for all the parents, not just myself.”