Layla’s story: “In five days our world had changed”

“You know what cancer means or at least you think you do. I cannot explain how devastating it was to such a fit and healthy child that was surfing five days before. The scary thing was Layla was so well.”

Layla was away on holiday with her mother and grandmother in August 2020 when she started to notice leg pain followed by an ear ache that did not go away.

The doctor sent Layla to see a dentist, who also could not find anything wrong, but suggested a full blood count was carried out.

Louise said: “It was then that I started thinking to myself what the hell is wrong. I was adamant it was an ear infection because she had been suffering and then when it wasn’t, I thought teeth.

“The day after Layla’s blood test we had a call telling us to go straight to Doncaster Hospital. I stayed calm for Layla’s sake but then I went to the doctors to pick up her blood report.

“I got in to the car with Layla in the back, singing away as she always does.

“It said ‘suspicious of ALL’ on the paper and I thought there was something wrong with the blood test. Then I had a Google and I thought ‘oh no, it’s leukaemia.’”

Once at the hospital the family were given the news that Layla had Acute Lymphoblastic Leukaemia.

“In five days our world had changed,” Louise said.

“It was really upsetting and really sad. You know what cancer means, or you think you do. I cannot explain how devastating it was to such a fit and healthy child that was surfing five days before and did absolutely everything that was thrown at her.

“I couldn’t take it all in and I don’t think Layla did for a good few days. The scary thing was Layla was so well.”

Treatment began at Sheffield Hospital the day after diagnosis.

Louise said: “You try to be as upbeat as possible, it has got to be done, that kind of thing.

“The photos that I took of her went from a happy kid laying on the bed, then there was the definite diagnosis and she had to have an operation for a port to be inserted under her skin, then a lumbar puncture and she was just looking worse and worse.

“Then the chemo started. It was an awful nine days in hospital for the first stay, there is no description that can sum it up.”

When one of the chemotherapy drugs caused damage to Layla’s legs, Louise had to adapt the house.

“I think the thing that hit was how things changed so quickly,” she said.

“One minute she could just stand and then she was not able to walk and had to be pushed around in a wheelchair. That part really shocked me, when I think about how active she was to how she is now, you just think it is such a shame she is in this situation.

“Layla had surgery on her legs- the muscles have now been snipped as have the tendons at the back of her heels. She had to wear splints 23 hours per day. She is 11 years old and five foot three so having to lift her in and out of the bath is just dreadful.

“And during all this time she was not been able to have any chemo because her counts are so low and I worry that she is not having her treatment. You think that it’s the ALL that is the issue and obviously that is the case and without treatment it is no good but then the effects of all the treatment are so brutal. There are lots of worries.

“We have had to change the maintenance chemo drug, Layla was really struggling with the mental side of things, to the point where she had planned to take her own life.

“It is difficult, I have to tell myself that how she is being is because of the treatment or the drugs that she is on. We sit and hug and cry, I just hold her and reassure her and tell her how sorry I am that she is ill.

“She has had so many side effects and infections since all this began. Sometimes it seems like she gets over one thing then it is another.

“Layla normally is a happy, smiley little girl. She makes sure everyone else is okay. She is so caring to other children. It is so brutal to see them in the hospital, you have your own poorly child and there are poorly kids all around too, it absolutely drains the life out of you.”

Louise says that the support she has received from Young Lives vs Cancer social worker Pat has been invaluable. He was introduced to the family during their first hospital visit and has been at their side ever since. Part of this support has been funded by Children in Need through a grant.

“Pat has got me whatever grants I have been allowed to have, he has been absolutely fantastic,” Louise said.

“He just helps you, he is just that person who makes things a bit easier. He has been fabulous all the way through and Layla loves him, they get on really well.”

The bond between Pat and Layla was highlighted when she asked for him to be with her while she was having a nasogastric tube inserted to aid feeding.

Louise said: “Even though he was working in his office he came down and sat with her and told her how well she was doing.

“I would have got myself in a pickle without Patrick. You just panic.

“Layla wanted this and that while she was in hospital and I thought I am skint how can I do this. It is all these kinds of things that you do not think about. I wouldn’t have been in the situation I am in now without Pat. He knew how much I was struggling, being on my own and after losing my Dad to cancer last year.”

Social worker Pat Percival said: “Money raised for Children in Need allows grants to be awarded to Young Lives vs Cancer, which helps children like Layla and their families. These grants mean that social workers can provide support in many different ways, from financial and practical to emotional, to help bring light to otherwise dark times.

“Layla has had difficult times throughout her treatment but has dealt with everything that has been thrown at her with huge bravery and amazing cheerfulness.

I always really look forward to seeing her in clinic and was very impressed with her when she went for a blood test on her own.”

Although Layla’s treatment will continue until January 2023, she is now attending secondary school when she can.

Louise said: “Our mantra is to take every day as it comes. I try to plan nice little things at the weekend but it is the not knowing which is hard. I don’t think that people understand that the treatment goes on for so long and for everyone else, life carries on. You just hope somehow that along the line you can help someone else.”