BETH Phelps passed away days before her 13th birthday, after her parents spotted a strange symptom as she brushed her teeth.
While the 12-year-old got ready for bed, parents Ben, 48, and Aby, 49, noticed a “protruding lump” on her shoulder, visible under her t-shirt.
SWNSBeth Phelps was diagnosed with a rare disease after her parents spotted a lump in her shoulder as she brushed her teeth[/caption] SWNSBeth was diagnosed with Ewing sarcoma, a rare form of cancer that affects the bones and soft tissues[/caption] SWNSShe underwent her first round of chemotherapy in Christmas 2020[/caption]Tests at Jersey General Hospital revealed Beth had a 7cm tumour on her left lung.
The family was told Beth had Ewing sarcoma, a rare and aggressive form of bone cancer.
“Our world in the blink of an eye was completely tipped upside down,” her dad Ben, from Jersey, said.
“She had no symptoms that stood out. Beth was a healthy little girl.
“But she took all the treatment in her stride, despite being terrified of needles.”
After chemotherapy, surgery and radiotherapy she was given the all clear – only for it to return nine months later in her right lung.
“When we were told her cancer had come back, we were shocked and heartbroken,” Ben said.
Beth’s parents were offered a clinical trial, but chose palliative care to make “her time left as comfortable as possible”.
She died 12 days before her 13th birthday, on October 3, 2022.
Ben, an HR director, is cycling from Land’s End, Cornwall, to John O’Groats, Caithness, Scotland, to raise money for the Bone Cancer Research Trust (BCRT).
“We’d never heard of Ewing sarcoma before,” he explained.
“That’s why I’m trying to raise as much money as I can, so we can find kinder treatments to help more people survive.
“Beth is my guiding light and inspiration always; this might be a tough physical challenge, but doesn’t compare to anything she endured.
“We miss Beth every day, and we are determined to make a difference in her name.”
SWNSBeth had no other obvious symptoms of the cancer[/caption] SWNSAside from chemo, she also underwent surgery and radiotherapy[/caption] SWNSBeth was declared cancer free, but her cancer returned nine months later in her right lung[/caption]Ben and Aby spotted the first lump in December 2020, prompting her GP to send them to A&E Jersey General Hospital, where Beth was given a CT scan, x-ray and MRI.
On Christmas Day 2020, Beth began her first of four rounds of chemotherapy.
In May 2021, Beth underwent surgery to remove the tumour and the entire left scapula at Stanmore Hospital.
Back at Southampton General Hospital, Beth received three more rounds of chemo before she underwent six weeks of radiotherapy at University College London Hospitals.
What is Ewing sarcoma?
Ewing sarcoma is a type of cancer that begins in the bones or soft tissues.
The bones most commonly affected by Ewing sarcoma are the:
Pelvis Thigh (femur) Shin (tibia) Ribs and shoulder bladesEwing sarcoma is most often found in teenagers and young adults, but it can happen at other ages. It is slightly more common in men than women.
Sometimes Ewing sarcoma can start in the soft tissue near the bone, which is called extraosseous Ewing sarcoma.
Pain is the most common symptom of bone cancer, including Ewing sarcoma. But symptoms may vary, depending on what part of the body the cancer is in.
The area may be swollen or painful when touched.
Primary bone cancer is sometimes found when a bone breaks after a minor fall or accident. This is because it has been weakened by the cancer.
Most of the time, these symptoms are caused by other conditions that are more common than bone cancer.
But if you have any swelling or unexplained bone pain, get it checked by your GP.
Tell your GP if the pain happens at night and when you are resting.
Source: Macmillan Cancer Research
“This was agonising as a parent to watch,” Ben said.
“The nursing and play staff were amazing at helping to keep her calm, but nothing prepares you for some of the procedures that take place in order to give treatment.”
After nine months of treatment, Beth was declared cancer-free and returned home.
However, in June 2022, she started to experience pain in her right shoulder.
The pain increased and an x-ray revealed that the cancer had returned.
Ben said: “We had to make a decision whether to put Beth through a clinical trial which meant more time away in hospitals and the possibility of never seeing home again.
SWNSBeth’s dad Ben is cycling 600m in memory of his daughter[/caption] SWNSHe described Beth as his ‘guiding light’[/caption] SWNS‘Beth was funny, quick-witted and beautiful,’ Ben said[/caption]“We chose palliative care and set out to make her time left as comfortable as possible, giving her the dignity and love that she so truly deserved.
“She took her last breath surrounded by me, Aby, the dog and our cat, Monkey.”
In Beth’s memory, Ben will cycle from Land’s End, Cornwall, to John O’Groats, Caithness, Scotland, from June 22 to July 5.
The dad said: “Beth was funny, quick-witted and beautiful. She is with me forever and especially on this challenge.”
Louise Everett, senior regional relationship manager at the BCRT said: “This is an incredibly inspiring challenge that Ben is taking on.
“We’re grateful that people like Ben want to keep raising vital funds and awareness so no other family has to go through what they went through.”
You can contribute to Ben’s fundraiser here.
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