‘It's not just about treatment, it's everything else too’: Meet Umar

“We first noticed something was wrong in February 2019,” Fahim says. “Umar had continuous temperatures, he was losing weight and complaining of stomach pains.”

After several trips to the GP and A&E, Umar was diagnosed with high-risk neuroblastoma and referred to GOSH.

“We were sent to Lion Ward, and he started chemotherapy that night,” Fahim explains.

“I had to stay strong because Khadija [Umar’s mum] was very upset. When I was left alone, I would cry in the corner. I didn’t know what to do.

“But we had to fight it. And GOSH was there to support us, always.”

Umar’s treatment began with an intense course of chemotherapy called rapid COJEC, which is induction chemotherapy given over a short time period.

“I had heard the word chemotherapy, but I didn't even know what it was,” Fahim says. “Umar would cry because it was burning him. Watching him take it in was such a shock.

“After a couple of days, the side effects started to kick in. He stopped eating, there was lots of vomiting, and he lost his hair. These things were all new and scary for us.”

Unfortunately, when the chemotherapy was finished, scans showed Umar needed more treatment. Over the next four years he underwent multiple courses of chemotherapy, radiation and two clinical trials.

“We used to take turns; I would stay one night [at GOSH], and Khadija would stay another,” Fahim explains. “I remember in 2021, I spent more nights in hospital than I spent at home.

“There are not a lot of treatments left for him now. He can’t have surgery because his primary tumour is near a vital vein. But he’s stable, which is good.

“I pray that he has fought it, and that as he grows older this thing will vanish out of him.”

For Fahim and Khadija, trying to stay positive was important.

“In the beginning I thought, ‘why me?’. But now I get to appreciate things more. Khadija and I both believe in God, and we always had faith that we were going to get past this.”

Umar spent many special moments at GOSH, including three birthdays and three Ramadans. Khadija would stay at GOSH one day before Eid, and after Eid prayer Fahim would come to the hospital.

“We gave each other presents,” Fahim says. “I bought new clothes for Umar, and on top of that GOSH Charity gave us lots of Eid gifts.

“The night before his birthday, I decorated his room. When he woke up all the nurses on Giraffe Ward came with presents.

“The Play team [which is fully funded by GOSH Charity] came every day and he loved it. They played on a magical carpet with different toys, and he liked playing pool with the Play worker because he used to win!”

While the treatment and care Umar received at GOSH was world-class, Fahim says that access to separate spaces and outside areas was often difficult to find.

“After putting Umar to bed, I tried to go outside, but I couldn’t go when he felt down because he’s a light sleeper and wanted me next to him.

“Having a balcony or a roof garden close by will help parents feel comfortable going outside and save them time. Just standing out for five minutes in the fresh air makes a huge difference.

“If there were family rooms, you wouldn’t disturb other people coming into the kitchen. I think that would be a good idea.”

The new Children’s Cancer Centre will be built with children and their families at its heart. A place where access to the outdoors is a priority, and patient bedrooms will be large enough for families to stay together in comfort.

Umar has stopped all treatment and is back home with his family. Fahim says they are glad to be spending quality time together and to have a routine.

“Umar is back at school, and I am back full time at work. We are living a normal life after four years and I don’t have to worry about anything.

“We still go to Great Ormond Street every three months for scans, but right now Umar is enjoying the things he loves, like playing table tennis and badminton.”

Fahim says that GOSH is like a second home to his family.

“Since Umar’s diagnosis, I’ve told everyone about what an amazing place the hospital is. It’s not just about treatment, it’s everything else too.

“Even as they give a chemotherapy drip, a Play specialist will come and bring joy to the child. That’s what makes it different to a normal hospital, and I recommend it to every single person.”