A MUM has told how her eight-year-old daughter died of cancer just three months after her diagnosis.
Rhiannon Davies, 25, from Darlington, described her little girl Amelia as “sassy, happy and cheeky”.
She said Amelia began suffering from stomach pains and constipation in August 2020, and after various tests was diagnosed with neuroblastoma on October 30, 2020.
Amelia lost her short battle with the cancer on January 25 in a tragic turn of events to the devastation of her parents, Rhiannon and Danny Hill, 27.
The family were told at her cancer had improved, and they thought things were moving “in the right direction” before her sudden death.
Despite their heartache, the family is determined to raise awareness of the condition in memory of their “cheeky girl”.
Neuroblastoma is a rare cancer that typically affects babies and children – around 100 each year in the UK.
It affects nerve tissues, and usually starts in the tummy, causing swelling, pain and constipation.
Rhiannon told Chronicle Live that Amelia didn’t have any swelling – her only symptoms were constipation and stomach aches.
“Stomach aches are something that kids complain about all the time so we had no idea it was going to be that serious”, she said.
“She was eating so much through lockdown we thought she might have been eating too much or had developed an intolerance to something.
What is neuroblastoma and what are the signs?
Neuroblastoma is a rare type of cancer that mostly affects babies and young children – around 100 a year in the UK, according to the NHS.
The NHS website says it develops from specialised nerve cells (neuroblasts) left behind from a baby’s development in the womb.
Neuroblastoma most commonly occurs in one of the adrenal glands situated above the kidneys, or in the nerve tissue that runs alongside the spinal cord in the neck, chest, tummy or pelvis.
It can spread to other organs, such as the bone marrow, bone, lymph nodes, liver and skin.
The cause is unknown. There are very rare cases where children in the same family are affected, but generally neuroblastoma does not run in families.
The outlook for neuroblastoma varies considerably, and is generally better for younger children whose cancer has not spread.
Symptoms can include:
- a swollen, painful tummy, sometimes with constipation and difficulty peeing
- breathlessness and difficulty swallowing
- a lump in the neck
- blueish lumps in the skin and bruising, particularly around the eyes
- weakness in the legs and an unsteady walk, with numbness in the lower body, constipation and difficulty peeing
- fatigue, loss of energy, pale skin, loss of appetite and weight loss
- bone pain, a limp and general irritability
- rarely, jerky eye and muscle movements
“I rang the doctors because she couldn’t finish her sandwich and was in quite a bit of pain.”
After calling the GP, Amelia was booked in for an ultrasound at Darlington Memorial Hospital.
The next day, Amelia was called for more testing but Rhiannon wasn’t told much on the phone.
She said: “They said they had found something attached to her left kidney so we didn’t know the full extent of it.”
Doctors discovered it was a tumour on Amelia’s left kidney and she was immediately transferred to the Royal Victoria Infirmary in Newcastle.
There she had more tests and after doctors found some cancerous neuroblastoma cells, which were also found to have spread to the bone marrow.
Amelia’s treatment, including chemotherapy, started on November 4, and quickly took its toll on the little girl’s body.
She was fitted with a feeding tube as her weight plummetted from 31.9kg to 28.5kg.
The tumour pressed on Amelia’s stomach, making it difficult for her to eat.
Rhiannon said: “She struggled to walk, her legs were shaking and she was getting skinnier and skinnier. We were sometimes in hospital for long periods of time and she spent most of her time in bed.
“Trying to get her to go out for a walk around the ward was hard but we managed to do that a few times. When we got home it was a struggle for her to get up and down the stairs so we had to carry her.
“She was really scared and then was she angry, the treatment was really hard and she didn’t want the doctors or nurses anywhere near her but after that, she wasn’t too bad.”
Rhiannon said Amelia was “freaked out” when her hair began to fall out in clumps as a result of the chemo.
“She would have good days and bad days but her personality was always there. She was still her happy self”, Rhiannon said.
Amelia even had treatment on Christmas Eve and spent most of Christmas Day in bed.
But the family felt positive when they were given the good news that the treatment was working as the tumour had shrunk.
Rhiannon said Amelia’s last treatment was on January 13, and she was due to be discharged days later.
She said: “We had an MRI scan which showed that the bone marrow was clear and the tumour had shrunk.
“They said they had found another cell on her left hip bone that we weren’t aware of before but the tumour had shrunk and it was all going in the right direction.”
The family were preparing for Amelia to be discharged until her condition suddenly worsened during a potassium infusion – usually used to treat low potassium caused by chemo.
Rhiannon said: “She was fine and then suddenly she started screaming out in pain and twisting in her bed. We didn’t know what had happened because she was fine a couple of minutes beforehand.
“We tried to calm her and then she started feeling like she couldn’t breathe and couldn’t lift her body. They couldn’t work out what was going on inside her body.
“She was given an adrenaline shot and they were discussing what they should do next. Amelia was fine, she was talking but she said she felt really funny.
“Something just happened and she literally just went.”
Despite best efforts from the medical staff, Amelia passed away.
The family is determined to raise awareness around neuroblastoma.
Rhiannon said: “We just want to raise more awareness around neuroblastoma and help other families.”
She added: “Amelia was always running around, she was sassy, happy and cheeky. She loved going to school to see her friends and she loved spending lots of time with them.
“She was so bubbly she loved swimming and cooking. She was just amazing and we all miss her so much.”
Local resident Jeanine Bekker and her family are fundraising with a challenge that will see them walk or run four miles every four hours for 48 hours from 4am on March 6 until 4am on March 8.
They’ve already smashed their £2,000 target but are hoping to raise as much money as possible.
They hope to raise money for a ‘Buddy Bench’ at the school in Amelia’s name so if a child feels lonely, they can go to the bench as a sign that they need someone to play with.
If you would like to donate, you can do so here.