Daithi’s Story: Living with Neuroblastoma

Daithi’s Story

It started with a limp

At first, we didn’t believe what was going on. They told us it was cancer, and we just felt more angry that they had told us his leg was broken.” 

In October 2023, three-year-old Daithi’s parents, Gemma and Connor, noticed that he was walking with a limp. They went to the GP who thought he had pulled a muscle, and then to A&E where Daithi was diagnosed with a broken leg and had it put in a cast. When he was still in pain two weeks later, Daithi’s parents took him back to hospital.  

“By this point, Daithi was in excruciating pain. We were seen by a different consultant who told us Daithi’s leg wasn’t broken, but it was a tumour.” 

Daithi was diagnosed with neuroblastoma, a rare childhood cancer. He needed chemotherapy, surgery and immunotherapy in Belfast, around 80 miles from his family’s home in Londonderry.

“For two months it was torture”

We were going back and forth to the hospital and stuck in traffic sometimes for two and a half hours, or an hour and a half on a good day. It was so hard seeing Daithi lying there in hospital.

Gemma and Connor both had to stop work when Daithi was diagnosed. 

“We were working at the time Daithi was diagnosed. I’m a hairdresser and Connor is a civil servant – it was just tools down as soon as Daithi was diagnosed. You just get on with it – there is only one reason and that’s to get him better. In that moment your life just completely changes – it’s absolutely traumatising. We were lucky enough Connor got full pay for nine months and my boss was really good. Connor then went down to half pay but we still had a mortgage to pay, cars, and life goes on, and so Connor needed to return to work.” 

A helping hand from Young Lives vs Cancer

While Connor went back to work, Gemma stayed at Paul’s House, Young Lives vs Cancer’s Home from Home in Belfast, so she could be close to Daithi in hospital.  

“I didn’t know the Home or Young Lives vs Cancer existed. We just couldn’t have done it without Paul’s House.  

“Daithi also came and stayed at Paul’s House when he could. Once he was there, he had the same room and would have his own comforts. It was just like our home, and it felt comfortable and safe. We met another family from Derry which comforted us too.” 

There were times when it was so hard, and Daithi’s grandmas came for emotional support and stayed at Paul’s House with us. They made us home cooked dinners, making us normal meals and doing our washing whilst I was in hospital with Daithi close by.  

During Daithi’s treatment, he rarely went home as he was so unwell. He spent two Christmases in hospital, and the staff at Paul’s House worked hard to make them special. 

“Paul’s House went above and beyond with Christmas and sorting out presents and putting Christmas decorations out. As a parent you’ll be last minute running around thinking about Christmas presents, because you haven’t thought about that – so it’s nice someone else is thinking about it for you – whether it’s Christmas, Easter or Halloween.” 

Dealing with post-treatment reality

Daithi is now five years old and is having maintenance treatment to prevent relapse. He has started school on a reduced timetable. His cancer treatment has had some long-term effects on his health. 

People don’t realise there are longer side effects going on post-treatment. Daithi is having trouble with his feet and may have to have surgery on them at some point. Everything he went through affected his heart as well and his hearing, and he now needs hearing aids. 

“He is shy, but so crazy when he is comfortable and loves the craic and playing with train tracks.” 

Our work with Young Lives Vs Cancer

Since 2007, we have donated nearly £7.5 million to help Young Lives Vs Cancer provide support for children with cancer and their families. We work with Young Lives Vs Cancer to help ease the financial burdens of cancer and to provide better care for children and young people with cancer and their families.

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