An 8-year-old girl died in her parents’ arms just two weeks after complaining her arm felt “unusual”.
Little Emily Smith was on holiday when she told her family her left limb was numb, but they concluded it probably wasn’t anything serious as it didn’t hurt.
The strange feeling then spread to her right leg and mum Sarah and dad Andy grew concerned and called 111.
Callers 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 tumor.
The Smiths, from St Albans, Hertfordshire, were shocked as the boy hadn’t shown any of the typical symptoms of nausea and headaches.
Emily was transferred to Addenbrooke’s Hospital in Cambridge and surgery was scheduled to remove as much of the tumor as possible and radiation therapy to slow its growth.
In the children’s ward, Emily was still able to walk with help and continued to paint in the playroom and explore the garden.
However, while waiting for her surgery, the student’s tumor began to bleed and swell, and her condition rapidly deteriorated.
After her collapse, she was taken to the operating room for emergency drainage and a biopsy to confirm that she had diffuse midline glioma – a fast-growing, high-grade brain tumor common in children.
Emily never woke up and passed away on August 8, 2022 — less than two weeks after she first mentioned something was wrong.
Sarah said: “She died in our arms.
“The physical pain as our heart broke was like nothing we had ever felt before.
“Nothing anyone could have done would have ultimately changed Emily’s outcome because there is no cure for the type of tumor she had.”
Andy added: “The nature of the tumor was just so unstable and aggressive, but just as silent. The worst of the worst.”
“It’s difficult when you don’t have the time to do something about treatment.
“We wouldn’t have wanted her to suffer any longer, but you have a typical cancer story in your head – a diagnosis and a treatment phase where you deal with things.”
“Things can go fast, but with Emily it went a lot faster.”
“One day she just skipped school and then didn’t come back.”
She died in our arms. The physical pain as our heart broke was like nothing we had ever felt before.
As a tribute to their little girl, they described her as “very popular” and “the sunshine of our family”.
Sarah said, “Emily was incredibly bright, creative and loved playing the piano.”
“She was a graceful ballet dancer, talented in acting, hiking, swimming and rock 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 helped them through their grief.
Andy, who works as a physical therapist, said: “As Sarah is a teacher and this is Harry’s first summer vacation away from Emily, we see this challenge as a way to ease the pain of losing her during the long six week break.”
“It feels like Emily is 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 is a small step in that direction for us.”
“For us as a family, being outside is important and it helps us get back in nature.
“We have fond memories of the Lake District having taken several family holidays, so we can imagine Emily going with us.”
The 17-day hike also marks the 12th month with Angela, the family’s Tom’s Trust psychologist.
“She was our greatest support during the worst time of our lives and helped us deal with the unbearable loss of our daughter,” Andy said.
“We don’t know how we could have managed this without their help.”
What are diffuse midline gliomas?
DIFFUSE midline gliomas are cancerous tumors that originate in the part of the brain called the brainstem.
They develop from cells called astrocytes.
Symptoms related to the internal pressure exerted by the tumor 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 behavior.
- With increased pressure in the head:
- nausea and vomiting
If the tumor has spread to the spine, you may also notice the following:
- back pain
- difficulty walking
- Problems with bowel and bladder control
Diffuse midline gliomas are usually treated with surgery, radiation therapy, and chemotherapy.
Unfortunately, very few children are cured.
The median overall survival rate is less than a year and generally ranges from eight to eleven months.
About 10 percent of people live at least two years after diagnosis, and about two percent survive at least five years.
Research suggests that if you’re under the age of three and over the age of 10, have fewer symptoms, and have smaller tumors, it could help you live longer.
Source: NHS and The Brain Tumor Charity