Kylen’s story: diagnosed with Acute Lymphoblastic Leukaemia aged three

Kylen, 3, was diagnosed with Acute Lymphoblastic Leukaemia and has been receiving treatment at Great Ormond Street Hospital.

His family have been supported by a Young Lives vs Cancer social worker throughout his treatment, helping them to access financial support and being a source of emotional support too.

Kylen had been back and forth to the doctors suffering from chest infections. He became unwell again in June but this time he had several other concerning symptoms like swollen eyes and being tired all the time. His parents took him to see their GP again and they suggested going to A&E as they suspected meningitis. When they got to A&E, they did a blood test on Kylen.

“When they first said ‘we need to take further samples’ I just thought he was anemic or something, I never thought he had cancer. They moved us to a pediatric area and then the doctor came back again and that’s when they had the results of the white blood cells being low and he just said ‘I can’t totally confirm it but it looks like there are signs he has blood cancer leukaemia’ and that was four hours after going into A&E that day and thinking he just had another chest infection or something like that.

“I was so shocked and my first thing was I thought I’d done something wrong, it’s your first instinct as a parent, you’ve done something wrong or not looked after them – he gave me a polite telling off and said ‘don’t ever think it’s you that’s done something’ He said we would probably end up going to GOSH in the next few days and then a few hours GOSH wanted us the next day because his levels were so low. It was diagnosed that he had leukaemia the next day.”

Kylen was then transferred to GOSH, where he had surgery to insert his porta-cath so he could start on the four weeks of induction chemotherapy.

He has since moved onto the ‘consolidation’ part of his treatment, he now has 22 months of treatment left to go.

Kylen’s mum Flo was heavily pregnant with her second son, Amari, when Kylen was first diagnosed.

“I’m so glad Amari is here now, the pregnancy was just a faff, the bump was in my way and I couldn’t hold Ky during treatment and I was getting very annoyed because my body was getting weak. It was a blessing my pregnancy flew by and I was only in uncomfortable pain the last few weeks. Having pregnancy hormones as well as trying to deal with the emotions of Kylen being sick was quite hard to try and keep calm and positive and stay strong for them which I hope I hopefully managed well.”

Kylen’s parents had to juggle the hour and a half journey from home to hospital and back so they could be split between Kylen’s bedside and being home for their newborn, Amari.

Their Young Lives vs Cancer specialist social worker has helped them to access financial support to face the extra costs of travel to the hospital, as well as be a source of emotional support to them both when facing the challenges of childhood cancer.

“Young Lives vs Cancer has done everything that’s not medical and people don’t realise there is so much that’s not medical things when you have a child with cancer and it can be so overwhelming like filling all these forms and figuring out where we can get a grant or vouchers or financial help – Young Lives vs Cancer has totally covered that for me.

“It’s also just nice having someone to talk that is sweet and caring and understanding.”