Cancer is one of the hardest subjects for any family to think about, especially when it affects children. Yet knowing the signs and symptoms of childhood cancer could make all the difference, as early diagnosis can significantly improve treatment outcomes.

Despite cancer being the leading cause of disease-related death in children under 14, only around 3% of cancer research funding is spent on childhood and young people's cancers. Greater awareness, faster diagnosis and increased research are desperately needed.

September is Childhood Cancer Awareness Month, and in this blog we're sharing the stories of two incredibly brave girls, Lily and Sophie. Their mums hope that by telling their daughters' stories, more parents will recognise the warning signs of childhood cancer, trust their instincts, and seek medical advice sooner.

We know this is a difficult topic to read about. But if sharing these stories helps just one family receive an earlier diagnosis, or encourages more conversations about childhood cancer awareness, then it will be worth it.

What are the signs and symptoms of childhood cancer?

Many childhood cancer symptoms can also be caused by common childhood illnesses, which is why diagnosis can sometimes be delayed. However, persistent, unexplained or unusual symptoms should always be checked by a healthcare professional.

Knowing the early signs of childhood cancer can help parents seek medical advice sooner.

Common childhood cancer symptoms include:

• Persistent pain that doesn't go away, especially in the bones, joints, back or legs, or pain that wakes your child during the night
• Unexplained lumps, swelling or firmness anywhere on the body
• Excessive sweating, particularly at night
• Persistent headaches or dizziness, especially in the morning
• Sudden, unexplained weight loss
• Blood in the urine, stool or vomit
• Difficulty or inability to pass urine
• Ongoing tiredness or fatigue
• Unexplained bruising or bleeding
• Unexplained seizures or fits
• Changes in the appearance of the eye, including an unusual white reflection in photographs
• Flu-like symptoms that don't improve or repeated infections

When should I see a GP?

If your child has any of these symptoms, particularly if they persist or you simply feel something isn't right, make an appointment with your GP.

At Mini First Aid, we always say that parents know their children best. If your instincts tell you something isn't right, trust them and don't be afraid to seek medical advice again if symptoms continue.

Lily’s story: A rare childhood sarcoma

Lily’s first sign of cancer was a pea-sized lump below her right knee which appeared in September 2020 when she was 9 years old. Being a bit accident prone, Lily and her parents assumed she’d just bumped it. But a month later it was the size of a £2 coin.

The GP referred Lily for an ultrasound which took place 3 weeks later. By this point the lump had grown bigger than her knee. Lily’s parents were told more investigation was needed and a month of tests and a biopsy followed. Three months after the lump first appeared, Lily was diagnosed with cancer. It was a really rare cancer – an Undifferentiated Soft Tissue Sarcoma – meaning there was no treatment protocol in place. Lily’s treatment plan was a “best guess”. It involved a gruelling 10 rounds of chemotherapy, ovarian cryopreservation, surgery to remove the sarcoma (the lump) and 28 radiotherapy sessions. Proving the lack of recent funding and research into childhood cancer, the newest of the drugs used in Lily’s treatment dated back to 1987.

We heard from Lily’s mum Kirsty:

“We now know how incredibly lucky Lily was that our GP referred her for an ultrasound after only one visit. We also now know that she is very much in the minority. Other than the lump Lily had no other symptoms of childhood cancer. She wasn't in pain, and she'd actually put on weight, not lost it. It never occurred to us that it could be cancer, you never think it will happen to your family.

She currently has no evidence of disease, and is doing well, but as there is little research into her type of cancer, we don't really know what the future holds. We also don’t know the extent of damage the treatment has done, although we do know she will require more surgery as her left leg (where the sarcoma and spread was) will not grow at the same rate as her right. This is why there needs to be earlier diagnosis for children, more research and better treatments that are kinder to children’s bodies.”

Sophie’s story: Recognising the signs of childhood cancer

The first sign of Sophie’s cancer was tummy pain and nausea which lots of children suffer from so unsurprisingly, this didn’t ring any alarm bells. This was July 2020. However, by August Sophie was confined to bed for several days, unable to eat or move due to the pain and nausea. Sophie’s worried parents contacted their GP who felt her tummy and checked her over, before a bowel infection was deemed the culprit and Sophie was sent home to recover.

A few days later with Sophie feeling better she set off on holiday with her grandparents. During the holiday Sophie started bleeding down below but was too embarrassed to tell anyone. On getting home, her mum Charlotte noticed blood when doing the washing – by this point Sophie had been bleeding for 8 days and it was getting heavier. With the GP and 111 dismissing it as Sophie’s first period, despite Charlotte adamantly telling them it wasn’t, the family had no other choice than to go to A&E. Shockingly, due to a lack of knowledge on childhood cancer, 53% of children are diagnosed with cancer at A&E, compared to 22% of adults.

At A&E, a doctor checked Sophie’s tummy and asked “how long has she had this lump for?” Charlotte was utterly horrifed as she replied “what lump?” Over the next few days Sophie had scans, tests and an MRI revealing a 12cm tumour that urgently needed removing. Unfortunately, due to the position of the tumour only 95% could be removed, and complications meant Sophie needed 7 days recovery in hospital following surgery.

A week later Sophie started 9 rounds of aggressive chemotherapy. She was devastated to lose her hair and was really sick but despite all this, Sophie’s happy personality shone through and she was incredibly brave and positive. During this time, Sophie also needed daily radiotherapy and as it was during the second lockdown, the family were very isolated.

Very sadly for Sophie and her family, in June 2021 a new 2.5cm tumour was found at the site where Sophie’s first tumour had been removed. This area had already undergone so much treatment, and due to toxicity from the previous treatments, it was impossible for Sophie’s body to take any more. 

Charlotte, Sophie’s mum says:

“We were told that anything we give to Sophie was about giving her time not a cure. We made the heart-breaking decision with doctors to stop treatment. We were honest with Sophie throughout her treatment and involved her in the decisions. We felt this was her body and she was the one that had to endure the treatment. Sophie was so positive and believed throughout the first treatments that the doctors would make her better. When she relapsed she didn't want any more treatment and didn’t want to spend more time in hospital. She knew what this meant but wanted to live the time she had left at home with her family. A very brave and grown up response to something that is everyone's worst fear. Sophie set out writing her bucket list and had some incredible experiences despite being in so much pain - some days I didn't think we would achieve them but with Sophie's true grit and determination she did. She also wanted to change a number of things nationally and wrote these on her bucket list for me to achieve in her memory. Sophie sadly died aged 10 on 18th September 2021 surrounded by her family at home. Sophie's personality remained right to the end and she never lost her incredible spirit.”

So what can be done to change outcomes for children with cancer?

Sophie’s mum Charlotte has set up Sophie’s Legacy and created the visual below which shows why something has to change:

Why earlier diagnosis of childhood cancer matters

Many people believe childhood cancer is extremely rare. However, statistics show that the average GP practice in the UK is likely to see a case of childhood cancer every 1.8 years.

Sadly, many children are only diagnosed after multiple visits to healthcare professionals or after attending A&E, by which point the cancer may have become more advanced.

Earlier recognition of the symptoms of childhood cancer, increased public awareness, better GP education and greater investment in research all have the potential to improve outcomes for children and their families.

Both Lily's mum, Kirsty, and Sophie's mum, Charlotte, would like to see a national awareness campaign to help parents recognise the signs and symptoms of childhood cancer.

You can learn more about childhood cancer symptoms through The Children's and Young People's Cancer Association, and support research through Lily's Sarcoma Appeal and Sophie's Legacy.

Trust your instincts

Charlotte's advice to parents is simple: 

“You know your child better than anyone. If you think something isn’t right then keep insisting for them to be seen again. Listen to your gut instincts.”

At Mini First Aid, we couldn't agree more. Parents are often the first to notice subtle changes in their child's health, and speaking up could make all the difference.

A huge thank you to Kirsty and Charlotte for sharing such personal and heartbreaking experiences. By telling Lily's and Sophie's stories, they are helping raise awareness of childhood cancer symptoms and encouraging earlier diagnosis for future families.

Thank you for taking the time to read and share this blog. Together, we can help more parents recognise the warning signs and ensure more children receive the treatment they need as early as possible.

All the best, Mini First Aid x