‘My 4 year old daughter's common symptom turned out to be something far more sinister’

Rebecca Herbert’s daughter Summer, now seven, was diagnosed with acute lymphoblastic leukaemia (ALL) in April 2022 after she was found lying on the floor in her bedroom, unable to walk or use her legs. Summer, from Hampshire, had been “constantly poorly” and bruising easily in the weeks prior, but when Rebecca, 33, visited her GP, she claims the doctor said Summer was “faking it” and told her to “go home and dose her up on Calpol”.

The GP did advise an x-ray that evening though. Rebecca reached the nearest medical centre but was told Summer was not booked in for an X-ray, so instead decided to take Summer to Royal Hampshire County Hospital, Winchester, that same evening, where she had blood tests. One week later, after being referred to Southampton General Hospital, it was confirmed Summer had leukaemia, aged four.

She said Summer had more than two years of chemotherapy, meaning she lost all her hair and missed school, swimming lessons and seeing friends – but after finishing her treatment in June, she had a party to celebrate and was treated like “a proper princess”.

READ MORE:BBC Strictly Come Dancing's Pete Wicks left red-faced over Blackpool announcement

READ MORE:Dexys Midnight Runners star Andy Leek, 66, tragically dies after Parkinson’s battle

Reflecting on Summer’s diagnosis, which she said was very nearly missed, Rebecca wants to urge other parents to trust their gut instincts.

She told PA Real Life: “When I went to the doctors with her, they basically said that she was faking it. They literally said, from their mouth, ‘She’s faking it’. I said: ‘Why would she fake it? It’s half-term.’ I’d understand if it was my son and he didn’t want to go to school, but this wasn’t the case.

“They said, ‘No, no, just go home and dose her up on Calpol’ … I thought, ‘No, this isn’t right’.” She added: “Just always go for your mother instincts. You know when something’s wrong with your kids … and even if you’re not sure, go and get checked.”

Rebecca, a former care worker, described her daughter Summer as a “fireball” – she said she was full of energy and always smiling. In early 2022, Rebecca noticed that Summer was bruising more than normal and she was “constantly poorly” – but assuming she just had “the normal common cold”, she “didn’t think anything of it”.

When Summer slipped on her skateboard and “smashed her head open”, requiring stitches, Rebecca said she then noticed the wound was not healing properly, which was “weird”. But when Summer’s brother discovered her lying on the floor in April 2022 during the Easter holidays, unable to move, Rebecca knew it was “something serious”.

“We went to a museum and she looked very pale, but I just thought, because she’s had a long day, she’s just tired,” Rebecca explained.

“But then the next day, she was upstairs in her bedroom – I just went down for a coffee – and her brother was screaming, ‘Summer can’t get up from the floor!’

“So I went upstairs and she was just lying there and I thought, ‘Something’s wrong’.”

Rebecca said Summer had a temperature of 39.9C and she called her GP to book an emergency appointment, which she secured for later that afternoon.

Rebecca, who lives with her husband Martin, 36, an engineer, said she was trying not to “panic” – but when she saw her GP, she claims they said Summer was “faking” her symptoms and she should just “dose up” on Calpol. According to Rebecca, the GP did also send her for an X-ray, but when they got to the minor injuries department that evening she was told Summer was not booked in so there was not one available.

With her gut telling her it was more serious, Rebecca said she drove to Royal Hampshire County Hospital that evening – and while waiting for further tests, she started looking up Summer’s symptoms.

According to Cancer Research UK, symptoms of childhood acute lymphoblastic leukaemia (ALL) can include breathlessness, looking pale, picking up infections easily and bruising or bleeding easily – and with Summer having many of these, Rebecca feared the worst.

“I pre-warned myself and when I told my husband, he said, ‘No, no, it’s probably something else, she’s probably anaemic’,” Rebecca said. “But then a week later, after going to Southampton General Hospital, we found out that she had leukaemia.”

According to the charity Young Lives vs Cancer, which supports children and young people (0-25) with cancer and their families, one in every 450 children under 15 develops a cancer in the UK. One of Rebecca’s first questions after hearing the diagnosis was, “is she going to lose her hair?”, but she said her mind just went “blank” after this.

Summer then started the first of several rounds of chemotherapy and, within 10 days, Rebecca said her hair was “shredding”. Despite side effects of hair loss and fatigue, and missing school, parties and seeing her friends, Rebecca said Summer continued smiling and never complained during the following two years of treatment.

“Us girls, we love our hair, so I would be distraught if I lost my hair,” Rebecca said. “I even said to Summer, ‘If you want, I’ll cut my hair off too’, but she said, ‘No, mummy, you’re old and it will take forever to grow back, so I can just get a wig’.

“When I tell you this child bossed it, from start to finish, I’m not kidding. Any picture you see, she has a smile on her face.”

Due to Summer’s chemotherapy treatment, she is “very behind” on her schoolwork, and she missed out on swimming lessons, going to the park, birthday parties, soft play and riding a bike – but she is gradually catching up.

Her treatment finished in June this year, and the family held a large party to celebrate her reaching remission, with a “massive cake” and everyone wearing orange as leukaemia is represented by this colour. “My husband’s brother made a bell, so she rang the bell in front of everyone, it was very emotional, and there was a big teddy next to it,” Rebecca said.

“We bought her a brand-new dress and a hairdresser came to our house. She was treated like a proper princess that day – she had her makeup done, all her nails done.”

Rebecca said the family is “back to normality” now, which feels “scary”, but Summer is regularly going for check-ups and blood tests to ensure the cancer does not return.

She wants to encourage other parents to read up on childhood leukaemia, as many of Summer’s symptoms matched medical information provided online, and to get any unusual symptoms checked.

Speaking about Summer now, she said: “I am that mum that will say, ‘I’m proud of my children’. She’s always wanting to learn and she’s smashing life at the moment.”

Young Lives vs Cancer ’s specialist social workers are available from the moment of diagnosis to help young people and families, like Summer’s, get the right support at the right time.

A statement from Summer’s GP, shared through lawyers acting on their behalf, stated: “(The GP) were sorry to hear that (Rebecca) felt her daughter’s symptoms were not treated seriously and would like to reassure her that this is not the case.

“(The GP) was very concerned about (Rebecca’s) daughter, who presented with pain in her lower right leg, and who he recorded was unable to weight bear.

“(They) recorded that she needed an X-ray to exclude the possibility of a greenstick fracture and asked (Rebecca) to take her to the nearest A&E department for an X-ray that evening.

“(Rebecca) and her daughter in fact attended the local minor injuries unit, who recorded that they had been sent by their GP for an X-ray.

“(The GP) was also conscious that there might be a malignant cause for the leg pain and recorded a plan to consider the need for a paediatric review if the X-ray was normal and if (Rebecca’s) daughter was still unable to weight bear the next day.

“(The GP was) pleased to learn that the various NHS departments worked well together to diagnose and treat (Rebecca’s) daughter and wish her and her family well.”