A EIGHT-year-old girl died in her parent’s arms just two weeks after complaining that her arm felt “unusual”.
Little Emily Smith was on holiday when she told her family that her left limb was numb, but they decided it probably wasn’t serious as it didn’t hurt.
The strange feeling then spread to her right leg, and, growing increasingly concerned, mum Sarah and dad Andy phoned 111.
Caller handlers advised the couple to take their daughter straight to the nearest hospital, where Emily underwent an MRI scan.
It revealed the family’s worst nightmare – Emily had a cancerous brain tumour.
The Smiths, from St Albans, Hertfordshire, were shocked as the youngster hadn’t displayed any of the typical symptoms, such as sickness and headaches.
Emily was transferred to Addenbrooke’s Hospital in Cambridge and plans were made for surgery to remove as much of the tumour as possible and radiotherapy to slow its growth.
On the children’s ward, Emily could still walk with help and continued to paint in the playroom and explore the garden.
However, while waiting for her surgery, the schoolgirl’s tumour started to bleed and swell, and she quickly deteriorated.
After collapsing, she was rushed to theatre for emergency drainage and a biopsy to confirm she had diffuse midline glioma – a fast-growing, high-grade brain tumour common in children.
Emily never woke up, and she passed away on August 8, 2022 – less than a fortnight after first mentioning something was wrong.
Sarah said: “She died in our arms.
“The physical pain of our hearts breaking was like nothing we had ever felt before.
“Nothing anyone could have done would have changed Emily’s outcome ultimately because there is no cure for the type of tumour that she had.”
Andy added: “The type of tumour was just so unstable and aggressive but equally silent. The worst of the worst.
“It is difficult when you don’t get that time trying to do something to treat it.
“We wouldn’t have wanted her to have to suffer longer, but in your mind you have a typical cancer story – a diagnosis and a period of treatment, coming to terms with things.
“Things can happen quickly but with Emily, it was just so much quicker than that.
“She just skipped out of school one day and then didn’t come back.”
She died in our arms. The physical pain of our hearts breaking was like nothing we had ever felt before.
Paying tribute to their little girl, they described her as “very popular” and “the sunshine in our family”.
Sarah said: “Emily was incredibly bright, creative and loved playing her piano.
“She was a graceful ballet dancer, talented at drama, hiking, swimming and climbing.
“She was a kind friend to many and a loving daughter and sister to her older brother, Harry.”
To mark the anniversary of Emily’s death, the Smiths are walking 192 miles “coast to coast” from St Bees in Cumbria to Robin Hood’s Bay in North Yorkshire to raise money for Tom’s Trust – a charity that has been helping them through their grief.
Andy, who works as a physiotherapist, said: “With Sarah being a teacher and this being Harry’s first summer holiday without Emily, we see this challenge as a focus away from the pain of losing her during the long six-week break.
“It feels like Emily’s going to be a part of it.
“We never wanted to live this life without her, but we need to learn how to live our lives now, and this gives us a small step towards doing that.
“Being outdoors is important to us as a family and it’s helpful to us being back in nature.
“We’ve got fond memories of the Lake District, where we had several family holidays, so we can picture Emily walking along with us.”
The 17-day trek also marks 12 months of having Angela – the family’s Tom’s Trust psychologist.
“She has been the most amazing support to us throughout the worst time of our lives, helping us try to bear the unbearable loss of our daughter,” Andy said.
“We don’t know how we could have faced this without her help.”
What are diffuse midline gliomas?
DIFFUSE midline gliomas are cancerous tumours that originate from the part of the brain known as the brain stem.
They develop from cells called astrocytes.
Symptoms, which are related to the internal pressure that the tumour applies, include:
- Swallowing problems
- Slurred speech
- Facial weakness
- Abnormal gait (the way the child walks)
- Difficulty with tasks such as handwriting
- Gradual decline in school work
- Changes in personality and behaviour.
- If there is increased pressure in the head:
- Nausea and vomiting
If the tumour has spread to the spine, you might also notice:
- Back pain
- Difficulty walking
- Problems with bowel and bladder control
Diffuse midline gliomas are usually treated with surgery, radiotherapy and chemotherapy.
Unfortunately, very few children are cured.
The average overall survival rate is less than one year, generally ranging from eight to 11 months.
About 10 per cent of people live at least two years after diagnosis, and around two per cent survive at least five years.
Research suggests being younger than three, older than 10, having fewer symptoms and having smaller tumours could help you live longer.
Source: NHS and The Brain Tumour Charity