Summer’s story: As soon as they said ‘leukaemia’ I switched off

Summer was diagnosed with leukaemia at just four years-old and has been on treatment at Southampton hospital ever since. During half term her Mum found her one morning lying on the floor unable to walk. After several visits to the hospital, a blood test revealed she had leukaemia.

Summer’s diagnosis had a massive impact on the entire family. Since the moment of diagnosis, they have been supported by Nicky, a Young Lives vs Cancer social worker, who has helped them navigate everything cancer has thrown at them.

“Summer was telling me that her arm was hurting so we thought maybe she just slept on it funny, I gave her some calpol. A couple of days after her neck was hurting so I thought maybe she slept funny on that.

“A couple of days passed, we went out to the museum on the Monday, the first day of half term, she was running around just being her. Then Tuesday we had a lazy day and Wednesday I got up, made myself a coffee, and my eldest said ‘Summer can’t walk’. I ran up the stairs and she was just laying on the floor like a mermaid, that’s all I can describe her like. She was crying and I said ‘it’s ok don’t worry’. I phoned my partner and I said ‘i think I’m going to have to phone the doctors’. I phoned the doctors around 7 in the morning and got an emergency for 3 in the afternoon.

They went to the doctors who referred Summer for an X-Ray. She stayed at Winchester hospital for a couple of days, where they took her bloods each morning. As it was the Easter holidays, Summer’s Mum Becky asked if they could go home and bring her back each morning, so they could be with her son.

“I think we had two days at home and we got a phone call to say Summer’s bloods had dropped and she needs to be in ASAP.

“They did her bloods again, we stayed overnight and then we went straight away to Southampton. When we were in Southampton we were looking it up, it did come back as leukaemia but we were so in denial, we were like ‘no, she’s running around, she’s only four, surely you can’t have leukaemia at four years old’.

“They got the play nurse to come in and said ‘we’re going to have a chat with you but they’re going to play with Summer’ and I just knew it. I looked at my partner and I said ‘yeah it’s bad news’ because they would have said it in front of my daughter. That’s when we got told she had leukaemia.

“As soon as they said ‘leukaemia’ I just switched off. Because Summer had really really long hair – my question was ‘will she lose her hair?’ – and they said unfortunately she will.”

Summer had a central line put in so that she could start treatment. She started to have chemotherapy once a week every Friday.

“She’s getting us through this. Even when she lost her hair, there’s me and Martin crying our eyes out whilst we were brushing her hair and she just looked at me and said ‘what’s the matter?’ and I was like ‘your hair’s coming out now babe’ she said ‘that’s ok, we knew it was going to come out, I’ll just be bald for a bit’.”

Summer went to a hair salon where she was fitted for a wig from the Little Princess Trust.

“When her hair started falling out she wouldn’t look at herself in the mirror then when we went to the hair salon, there was another little girl who had no hair. This little girl come up and chatted to us, she must have been Summer’s age. Summer was staring and I said ‘see Summer it’s ok to look like how you’re looking’ then she just had this massive smile, she looked in the mirror and smiled.”

When Summer was diagnosed, her older brother Jayden had to stay at his grandparents house because he had never had chicken pox, which meant there was a risk he could pass it on to Summer.

“Me and mum come to an agreement that she can tell Jayden about Summer and if he has any questions or anything then he can phone me. My grandad died last year of cancer – my son and my grandad were very close so he thought that because Summer’s got cancer she’s going to die. He’s only eight so it’s been really hard for him.

“Sometimes he says ‘I don’t get attention, Summer gets attention’ and I’m like ‘you both get the same attention, Summer’s getting a little bit more attention because she needs it’. I think Summer just can’t wait until he comes home, we all can’t.”

Summer’s diagnosis has also had a huge impact on the family’s finances.

“Because we’re indoors, electric is on all the time. Today, we had a random trip to Winchester – I only filled up on Monday so who knows what they’re going to come back with. I’ve got my car booked in for a MOT on Friday so I think that’s going to fail. It’s things like that that you don’t realise – where me and Martin both had an income and quite a good income coming in, if our cars needed doing ‘yep, chuck some money at it see you later’ but now I’m like ‘10, 20, 30 pounds I’ve got this week’.

“The way that Summer eats at the moment I have to get more food. She’s really aggy if she doesn’t get fed on time. She was having three bowls of cereal – I felt like I was in the kitchen more than I was sat in the living room or doing something else.”

Since Summer’s diagnosis, her family have been supported by Nicky, a Young Lives vs Cancer social worker.

“She came round and introduced herself and said ‘what bills have you got to pay?’ and she said ‘we’ll get you sorted with a grant, to pay off some rent or whatever you need to do just do it’ she applied for it, we got it.

“She’s constantly asking ‘are you ok?’, not ‘how’s Summer?’ but ‘are you ok?’ Because that’s what you need sometimes you need someone to ask are you ok. It’s a horrible thing Summer’s going through but sometimes you just need that ‘are you alright? Are you coping?’”