Meet Yumna, the three-year-old who loves dancing

“I had never seen GOSH. I didn’t know where it was; I didn’t know much about it. It is something you hear about but don’t know about.”

On 28 November 2021, two weeks after her second birthday, Yumna and her parents, Salma and Matin, arrived at GOSH’s Elephant Ward.

A week earlier, after months of Yumna being unwell on and off, her mum, Salma, had found a lump on the side of her daughter’s tummy. Their local hospital confirmed it was a mass and referred Yumna to GOSH.

A few days after arriving, Salma and Matin discovered their daughter had stage four high-risk neuroblastoma.

“It felt like a whole mountain fell on my head. I literally felt dizzy,” Salma says.

“We were in utter shock, and everything felt so surreal.

“Cancer hasn’t touched our immediate family; no one in my family has ever had cancer before, so we didn’t really know anything about it.

“The consultant gave us a plan ... to start induction chemo first, then surgery, then high-dose [chemotherapy], then radiotherapy and then immunotherapy.”

Yumna started induction chemotherapy straight away.

“We would come in and out. Every 10 days we would come in for a few days, do the induction chemo, and go home again.

“The first cycle was ok; she was fine. The second cycle, she was alright; she was a little bit sick, but she was ok. By the third cycle, she started losing her hair, which was really hard,” Salma explains.

“On the fourth cycle, her hair was falling out like autumn leaves. It was going in her food, going in my clothes, and I had to keep changing the bed covers because it was everywhere.”

As well as losing her hair, Yumna became withdrawn during this time.

“She turned into this little zombie; she didn’t speak, didn’t respond, didn’t really talk. We just lost our Yumna - the Yumna that we knew and loved,” Salma says.

“She stopped looking in the mirror. It surprises me because she was only two years old; how does a two-year-old understand all of this?”

Once Yumna completed induction chemotherapy, her team decided she needed the high-dose chemotherapy before the surgery.

“The doctor said, ‘I am really sorry, we won’t be able to do the surgery now because the chemo has shrunk the tumour, but it hasn’t done enough for us to be able to take it out. Plus, where it is sitting, it is connected to the main vessel of her left kidney’,” Salma says.

“So, they had to switch the plan around.”

After eight weeks at home, it was time for Yumna to head back to GOSH.

“Eventually, I got a call a week into Ramadan, at the beginning of April 2022,” Salma says.

Yumna’s team explained to Salma and Matin the side effects Yumna could experience while undergoing high-dose chemotherapy.

“She had nothing,” Salma says. “And then bam! In the third week, one thing after another, she started getting all the side effects. The worst one was Veno-Occlusive Disease, basically the liver starts swelling up and retains water and it gets very big.

“She had a very swollen tummy, her whole body was puffy, and she was really uncomfortable with the swelling,” Salma explains. “Because of her tummy, she couldn’t sit down, she had to be on her back most of the time or sit on my knee. She couldn’t sit straight because her tummy would get in the way.”

Yumna’s skin was also affected by the high-dose chemotherapy.

“She had ‘chemo skin’, as they call it,” Salma says. “The skin started breaking, and she had an infection. She got ulcers in her mouth, in her throat, in her tummy. She completely stopped eating; she was put on a TPN (total parenteral nutrition) feed through her line.”

At one point, Yumna also experienced a seizure – which Salma describes as a “very very horrible experience”.

“When her tummy started going down, she got a really high temperature. [It] was so high she basically had a seizure where she completely stopped breathing.

“I jumped off the bed and pulled the emergency button, and everyone came running.

“Helen, the ward sister and the manager … held me so tight. She took me out of the room and just hugged me while I cried my eyes out."

Yumna stayed at GOSH for just over two months during the high-dose chemotherapy.

“Yumna was unwell for a long period, and they needed to monitor her during that time,” Salma says.

After that, she slowly recovered.

“We went home eventually, and then she had surgery in the summer – to remove the tumour.

“During that time, we were told that she might lose her left kidney, but luckily that didn’t happen because the surgeon was amazing. She managed to scrape off all the tumour off her vessel without damaging her vessel or her kidney.”

Before this surgery, Yumna had keyhole surgery to remove and preserve her ovaries. Yumna’s consultant had previously mentioned to Salma that this could be an option for Yumna – because high-dose chemotherapy can affect fertility.

“I said yes,” said Salma.

After the surgery to remove the tumour, Yumna had radiotherapy at UCL, which Salma describes as being “not too bad”.

Immunotherapy – the final part of Yumna’s treatment plan – started in October 2022 and lasted seven months.

“Yumna was declared cancer-free in June, [but] she continued to have underlying infections...” Salma explains. “The family call 4 September her ‘Freedom Day’ because that is the day she was found to be cleared of all infections and her NG tube was removed.”

While immunotherapy marks the end of treatment, it won’t mark the end of Yumna’s time at GOSH.

“We will still be here for the next five years,” Salma says. “We will be seen every three months for scans, and then it goes to six months, then annual check-ups, just to make sure. We will still be a part of all of this.”

Leaving Elephant Ward will be “bittersweet” for Salma, as the family have formed such a close connection with the ward and its staff.

“I am going to miss everyone. They became my shield, and they are the reason why I have been able to get through this,” Salma says.

“Yumna loves the nurses; they are fun, happy and calming.”

GOSH psychologist Anita has been a source of support for Salma.

“Anita was my biggest support during the hardest times,” Salma says. “She just lets me talk about anything and everything and it makes me feel better without having to talk about my problems or what I am feeling.”

The Play team, funded by GOSH Charity, has also played a huge part in the family’s GOSH journey so far.

“They are just amazing,” Salma says. “Chloe was the first person Yumna interacted with when we arrived, and she quickly became her favourite. She loves sitting down with her and playing Play-Doh, doing drawings and roleplay.

“We love GOSH. It’s the most amazing hospital and has the most amazing staff who see you through the toughest times,” Salma says. “I didn’t think I would ever feel this way about a place, but I do.”

And how does Salma feel about GOSH’s future Children’s Cancer Centre?

“The larger rooms will be amazing,” she says. You spend a lot of time in your own room, so having a balcony space where parents can go outside for a five-minute breather will make a huge difference to their mental health.”

“To be able to be on the balcony just for a little bit, breathe in some air and come back into the room, it would make a huge difference.”