Kaysan’s story: “Even until today my son doesn’t know that he’s got cancer”

Kaysan was diagnosed with leukaemia after his Mum noticed bruising and marks on the back of his legs – then one day while boxing he seemed very tired and not like himself. Now, Kaysan is having treatment at Great Ormond Street hospital. 

“He spiked a bit of a temperature and I just thought it was a normal temperature. Normally he was very well, he would never fall ill. I just thought it’s just that time of the year, he’s just a little unwell. Gave him paracetamol and he was fine but then as days went by he just looked more and more pale, more lethargic and then I noticed he had some red spots, those petechiae spots, around his leg and I think that was more alarming for me than him having a temperature or feeling a bit weak. I just realised he also had some bruises around his body but, again, with bruises with little kids on the legs it’s quite common so I wasn’t as alarmed but he had one on his shoulder, which I thought ‘he can’t have hurt himself on the shoulder’”

Kaysan’s Mum, Sultana, took him to the doctors and showed them the red spots and the bruise but they didn’t seem worried. However, because of his shoulder they wanted him to have a blood test.

“I waited a few days to go for the blood test because he was in school and he seemed fine and then one evening we had booked boxing for him. We went boxing but his performance was not great at all – where he was able to do a lot of press ups, he couldn’t do one and he was so tired he couldn’t punch properly.”

Kaysan later said that his chest was hurting so his Mum took him to see an out-of-hours GP. They thought it was something viral. Sultana took Kaysan for his blood test and at 2am in the morning they got a call.

“I was at my mums and two o’clock in the morning the house phone went off. They were asking to speak to Kaysan’s parents. Before the phone call came me and my husband didn’t go to sleep, we were feeling restless for some reason but we didn’t know what it was. My son woke up in the middle of the night, he had some bleeding around his gum and I said to my husband ‘something doesn’t seem right, shall I just take him to A&E’ and he said ‘it’s just some bleeding of the gums it’ll be fine, wait for the morning and we’ll see what to do’. A few hours later, the hospital called from 111 to say that they’d done his recent bloods, the results came back and it doesn’t look right.”

They said they would send an ambulance to bring them to the hospital. When they arrived, they were met by a team. They checked his bloods again a few times and it kept coming up the same.

“The doctor that was on shift said his blood levels keep coming back the same and it looks like he might have something called leukaemia or lymphoma but they didn’t know which one it was. We were just sat there really shocked.

“They sat myself and my husband, there was the doctor and two nurses who sat us down and explained to us. It was a blur, they were telling us and it was coming in one ear and out the other, it was too much to take in in the very first month. I felt like I couldn’t concentrate and my husband felt the same way.”

The next morning, they were met by their CNS, oncology doctor and things started to happen very quickly – an ambulance came and transported them to Great Ormond Street Hospital where he started treatment.

“Even until today my son doesn’t know that he’s got cancer. What he knows of cancer is that ‘that’s it, it’s end of life’. So even til today, I make everyone around him to not use the word cancer with him because he doesn’t actually know he has cancer. He knows he’s got leukaemia.

“What he knows is that we all have good blood and bad blood in our body and it’s balanced out but his body is producing a lot more of the bad blood that’s eating at the good blood, that’s how we’ve put it to him and he understands that.”

Kaysan is currently on maintenance chemotherapy. He has now finished his intensive chemotherapy which meant being in the hospital for many weeks at a time. He now has half a year of maintenance treatment to go.

Throughout their treatment, Kaysan’s family has been supported by a Young Lives vs Cancer social worker, Barbara.

“Barbara is amazing, honestly, she’s always been so supportive – honestly I cannot thank Barbara enough, I do tell her and I won’t stop telling her. She may not realise how much she has helped me, financially, mentally. If I’m feeling a little bit low and I need something to be done, I know I can call Barbara.

“We were in hospital for three months, we were in a one bedroom house and she wrote us a letter to help us get a bigger place. When we moved into the house, moving from a one bed to a four bed, getting all the furniture – she helped me to apply to get furniture through here and there. I can’t tell you how much she helped and is still helping.”