A TWO-year-old boy died after half his face collapsed on a surprise family holiday to Disneyland.
Doctors assured little Dax Peek’s family that his symptoms were likely as a result of Bell’s palsy – a temporary and treatable weakness or lack of movement.
In reality, the youngster was battling something far more serious – but his parents Devon and Jonny had no idea.
They continued with their trip as normal – laughing on rides, eating sweet treats and enjoying the magic of the theme park in Paris, France.
But their worlds came crashing down when they returned to the UK.
Within days, Dax, from Dunbar, Scotland, started vomiting, losing his balance and struggling to walk in a straight line.
“He was very different from the little boy who was normally running around with his sister,” Devon said.
“We were extremely worried.”
He was rushed to hospital, where MRI scans revealed an acoustic neuroma – a type of non-cancerous (benign) brain tumour.
It was “the size of a peanut” and he was discharged, though medics later said he could also have neurofibromatosis – a genetic condition that causes tumours to grow along the nerves.
Sadly, Dax’s condition worsened and the tumour grew aggressively in the following six weeks, now spreading out of his ear canal and making it bleed.
After surgery to remove it, he was diagnosed with cerebellopontine parameningeal rhabdomyosarcoma – a rare soft-tissue cancer.
Devon and Jonny were hopeful their son’s chemotherapy was working as he was making improvements and learning to walk and talk.
But further scans showed the “monster” cancer had now spread to his spine and there was nothing else doctors could do.
Dax’s body couldn’t recover and his parents made the heartbreaking decision to take him home.
He passed away in his mum’s arms a short time later.
Devon said: “Losing Dax has blown apart my life.
“For a moment I had what I imagined was the perfect family – the two kids, the nice home – then all of a sudden, Dax’s cancer came along and took our child away.
“You just lose yourself when you lose a child.”
He was vomiting repeatedly and could no longer balance to stand or walk unaided.
Devon Peek
The family flew to Disneyland Paris in March 2020 as a birthday surprise for Dax’s sister Darcie.
“We were all so excited, but once we arrived we realised something wasn’t right with our son,” Devon said.
“One half of his face was barely moving. We were really worried so we took him to the hospital while we were in France.”
Dax was “checked over” and given the all-clear that it was likely Bell’s palsy, but doctors said he should have an MRI once they returned home to “rule everything else out”.
“They assured us he was safe to finish the trip and celebrate his big sister’s birthday and I’m glad he did because he loved the magic of Disney,” Devon said.
“One of his favourite films was Frozen and they had a Frozen event on at the time so he loved seeing Elsa and the special parade with all the songs and characters.”
As soon as they landed in Scotland, the family drove straight to the children’s hospital, where Dax was given steroids to treat his Bell’s palsy.
But weeks later, he was “really poorly all of a sudden”.
“He was vomiting repeatedly and could no longer balance to stand or walk unaided,” Devon said.
After racing Dax to A&E, scans revealed his tumour. But because it wasn’t cancerous, they were told to “watch and wait” and return in three months.
“My husband and I were overwhelmed by it all and so trusting, but we soon became frustrated,” Devon said.
Unable to stand the delay, they found a specialist surgeon in the United States to remove the tumour, but Dax started bleeding from his ear before they could travel.
“Alarm bells were really ringing for us as it was on the same side as the tumour,” Devon said.
“But over the next two weeks, we were repeatedly told it was impossible, and that it was a foreign object that Dax had gotten stuck in his ear and also an ear infection.
“We were given multiple different ear drops and antibiotics but nothing was working, it kept growing.”
What is Bell’s palsy?
BELL’S palsy is a temporary weakness or lack of movement that usually affects one side of the face.
It can last months at a time, but it is usually easily treated with steroids.
As well as changes to one side of the face, other symptoms include:
- A drooping eyelid or corner of the mouth
- Drooling
- Dry mouth
- Loss of taste
- Dry or watering eyes
- Difficulty closing one eye
A 10-day course of steroids, eye drops and ointments, and surgical tape to help keep eyes closed can all be used to treat it.
Symptoms usually clear up within six months.
If you or your child has symptoms of Bell’s palsy, you should ask your GP for an urgent appointment or call NHS 111.
However, call 999 if somebody’s face droops on one side, they cannot left up both arms and keep them there, or they have difficulty speaking, as these could be signs of a stroke, which is a medical emergency.
Source: NHS
On May 16, 2020, Devon and Jonny had had enough and took their little boy back to the hospital.
Staff discovered his oxygen levels were low and, two days later, their “world really started crumbling”.
“It was only six weeks since the last MRI but his tumour had grown aggressively, was now very large and was displacing Dax’s brain stem greatly from its growth and pressure,” Devon said.
“They didn’t know what kind of cancer it was yet but they knew it had to be cancer. It was bad.
“All the medical teams seemed to jump into action and although it was a relief, it’s what we’d been desperate for weeks ago but they wouldn’t listen.”
TRAGIC TWIST
Surgeons managed to remove 70 per cent of the tumour, but in a tragic twist there seemed to be an exact replica of it forming on the opposite side.
That’s when they found out Dax had rhabdomyosarcoma – a soft tissue cancer which affects around 55 children in the UK every year.
He began treatment, but suddenly started having seizures so was put on a ventilator in intensive care and had fluid drained from his brain.
Devon and Jonny then discovered his tumour had grown again and there was now cancer in his spine and cerebrospinal fluid.
“We were told there was nothing more they could do but make him comfortable,” the mum-of-two said.
Dax, who couldn’t move his face and became deaf in both ears, moved to end-of-life care and “soldiered on” for six weeks longer before the family made the “heart achingly impossible” decision to stop all treatment.
“We could see that even with a miracle his little body had been wrecked from the cancer; it just wasn’t fair to him to continue,” Devon said.
Dax passed away in his mum’s arms at home on August 31, 2020, aged two years, seven months and one day.
Devon said: “Those final days with Dax were spent in bed. All of the family were able to come and just cuddle up with him.
“He’s greatly missed and loved every single day.
“We talk of him all the time, have his photos up and even his little hat and jacket hang in our hallway along with his shoes.”
Devon shared her experience as part of the charity Children in Cancer UK’s ‘Real Stories’ campaign to raise awareness for other parents going through bereavement.
She said: “To be a cancer parent, and a bereaved parent is heavy, but there is a lot of support out there.
“I would always say to reach out because it’s really beneficial to speak to people.”
What is rhabdomyosarcoma?
SARCOMAS are a group of rare cancers that develop in the bones and soft tissues.
This includes fat, muscles, cartilege, blood vessels, nerves, deep skin tissues and fibrous tissues.
Rhabdomyosarcoma (RMS) is one type that affects the muscles that are attached to the bone, mostly around the head and neck.
It is the most common type of soft tissue sarcoma in children in the UK, affecting about 55 kids every year.
Experts don’t know exactly what causes RMS, but children with certain rare genetic disorders, such as Li Fraumeni syndrome, have a higher risk of developing it.
It is most common in children under 10, peaking aged one to two in girls, and three to four in boys.
Symptoms usually involve swelling or a lump, and, depending on the location, discharge from the nose, stomach aches, difficulty going to the toilet and blood in the urine.
A combination of chemotherapy, radiotherapy and surgery is likely to be used to treat RMS.
The five-year survival rate in children is 70 per cent.
Source: Children with Cancer UK
Sarah Carter is a health and wellness expert residing in the UK. With a background in healthcare, she offers evidence-based advice on fitness, nutrition, and mental well-being, promoting healthier living for readers.
