Posted on Wednesday 27 May 2020

Benji’s story – “I went to A&E and I wasn’t going to leave until I had answers.”

After months of struggling with leg pains and numerous doctors’ visits later, Benji was diagnosed with leukaemia in 2014 at the age of three. He had six months of intensive chemotherapy followed by two and a half years of maintenance treatment before finally ringing the end of treatment bell in October 2017. Today, he’s starring in CLIC Sargent’s emergency appeal advert on TV. Here, Benji’s mum shares their story.

Benji, 8, stars in CLIC Sargent's Emergency Appeal TV Advert

“In 2014 Benji started waking up in the night saying his legs hurt and that carried on for the whole summer. The doctors would say it was growing pains or they would say it was a virus. Then the week before he was diagnosed he got a really bad bout of tonsillitis which antibiotics weren’t getting rid of. I went to A&E and I wasn’t going to leave until I had answers.

“Leukaemia was always in mind. When he started having leg pains I googled it straight away and the first thing that came up was leukaemia. But every time a doctor told me it wasn’t, I thought they must be right.

“It was September 13 2014 that we got the diagnosis. In A&E I got a really good doctor, who did a thorough exam, and she found a little mark on his stomach and said he could have had meningitis. They did lots of blood tests and then we were told to go into another room. That’s when we knew it was bad because they normally tell you things at the bedside. The consultant haematologist came in and said Benji was anaemic and that it is a sign he could have leukaemia.

“I felt heartbroken, but it just wasn’t really a shock. It was almost a relief knowing that we were being taken seriously and knowing something was going to be done to make him better. We were taken straight on to Ward M3 for lots of blood tests and they put him on a drip and the next day he had a blood transfusion.

“At the time I was just dealing with it, going through the motions. Even today if you go on M3 you don’t really register where you are – on a children’s cancer ward. Benji just got on with it.

“The worst moment for me was in that first week when he had just come back from theatre and I was lying on his bed cuddling him as he came round from the anaesthetic and I just burst out crying. I was just sobbing. That was when it all just hit me and I felt so sad. He had just had his first chemo that morning. I just suddenly felt it – “my kid’s got cancer”. He had only just turned three.

“After that, Benji had six months of intensive treatment followed by two and half years of maintenance treatment.

“The first six months were really intense. The chemo destroyed his legs. He was unable to walk. It was horrible. Because of the steroid he was so bloated, and his tummy and upper body and face were ballooned but his legs were stick thin and he couldn’t carry his own weight. It was heartbreaking to see him try and walk, because he just couldn’t.

“CLIC Sargent were there from almost the beginning. I think it was two days after Benji was diagnosed I got a visit from social worker Liz. She arranged to come and meet us at home and talked through stuff. I was in work at the time and I had had a meeting that day with my boss who had said I would have to have unpaid leave. She stepped in and helped me get sick pay, and I was signed off work for six months. I wouldn’t have had that without Liz. I would have been looking after Benji and I would have been completely skint.

“Liz also helped us applying for a blue badge, and with the DLA. We would never have known anything about that if it wasn’t for her. She offered us counselling, but because I have a close family I decided not to go for it. But she also applied for a holiday at Amy’s retreat for us.

“Even today she always stops and asks how we are doing. She is just such a caring person. She’s the only person who looked out for me as Benji’s mum. Throughout everything we went through, everyone was – understandably – asking after Benji, checking how Benji was doing. CLIC Sargent were there for all of us.

“We also got a grant. That helped for things like hospital food. All of a sudden I found myself paying for things I wouldn’t normally pay for – parking, petrol, food. That grant made it that much easier to cope with these costs.

“Benji had countless stays in hospital for the day, and 57 overnight stays during his treatment. When he finally got the chance to ring the bell, I wasn’t expecting it to be as emotional as it was. Clinic was really busy that day and it was quite chaotic and everybody just stopped to watch. They said the little poem and then Benji rang the bell. Everybody stopped and clapped. He was really nervous but it felt really special. It was the day he had his last IV chemo so just knowing he was going to have nothing else put into his blood. We went out for tea and had a proper celebration.”

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