A mum has revealed her shock after her daughter's swollen stomach turned out to be a rare cancer. Dulcie O’Kelly, five, from Telford, Shropshire had been complaining of abdominal pains so her parents took her to the doctors in January 2021.
While GPs believed her swollen stomach could be caused by constipation, Dulcie's mum, Debbie O'Kelly 39, pushed for more answers, believing her daughter could have a food intolerance. In November last year, Dulcie underwent a scan, which uncovered a mass measuring 17cm by 12cm in her stomach.
A biopsy the following month revealed Dulcie had stage 4 Neuroblastoma, an aggressive form of cancer which had spread to her pelvis, bone marrow, legs and spine.
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Dulcie is now going through intense chemotherapy.
“The diagnosis was such a shock," Mrs O'Kelly says. "I cried in disbelief, 'how can my daughter have cancer?' We have gone through every emotion possible and our entire world has crashed around us.
"Never in a million years did we suspect it was cancer. We had never heard of Neuroblastoma.”
The family are now keen to raise awareness about the condition, so that other parents know the symptoms to look out for.
"If we had known sooner what Dulcie was suffering with, it may not have spread so aggressively through her body," Mrs O'Kelly says.
“We were completely unaware that her symptoms could be something so life threatening and all we can do now is pray doctors have still caught it in time."
The particular symptoms the family want to highlight include a swollen tummy and constipation.
“It can also cause children to walk quite unsteadily and have a weakness in their legs," she adds.
“A loss of energy, weight loss and loss of appetite are all signs too."
Mrs O'Kelly adds: “You don’t think it will ever happen to your child, it is a rare cancer but GPs and parents need to recognise the symptoms and if you have any concerns, push for more tests.”
Dulcie is now on her is now on her 5th round of chemotherapy, with doctors looking into the prospect of surgery to remove as much of the tumour as possible once she has completed seven rounds.
“Neuroblastoma is the second most aggressive cancer in children," Mrs O'Kelly explains.
“We need to stop the tumour in her stomach growing and spreading further around her body."
At the moment the treatment plan for Dulcie in the UK is expected to be between 12 to 18months.
"It’s a long road to recovery and could take two years to be in remission," Mrs O'Kelly continues.
“There is the potential that she [Dulcie] will never be cancer-free because of the type it is.”
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If the treatment in the UK doesn’t work, the family will look into the possibility of taking Dulcie to the US and have launched a £200,000 fundraising appeal to pay for potential lifesaving treatment there.
“We have started to fundraise for this possibility now, because we need to know we have enough funds for the treatment in the US," the mum-of-one explains.
“It would need to start 60 days after the end of the treatment here, so we can’t risk having to fundraise closer to the time and not having the money to take her. Whilst we hope going to America won’t be necessary, we have to be prepared to do everything possible for our little girl."
Mrs O'Kelly says that if they are in the position when Dulcie doesn't need to take the trip to the US, any funds raised will be either passed to another family who do need it or donated to childhood cancer charities.
For now, the family are focusing on Dulcie’s chemotherapy.
“Dulcie is a superstar, she smiles through it even when she is tired and she bounces back," Mrs O'Kelly says of her daughter.
“She is very grown up for her age, she knows she has cancer but she asks questions that I can’t answer, she wants to know why she has cancer. It breaks my heart to see her going through this," she continues.
“I have my good and bad days, but her strength gives me strength and most days she is coping really well.”
What is neuroblastoma?
According to the NHS neuroblastoma is a rare type of cancer that mostly affects babies and young children.
It develops from specialised nerve cells (neuroblasts) left behind from a baby's development in the womb.
Symptoms of neuroblastoma can vary depending on where the cancer is and whether it's spread.
The early symptoms can be vague and hard to spot, and can easily be mistaken for those of more common childhood conditions.
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
The main treatments for neuroblastoma are:
surgery to remove the cancer
radiotherapy – this may sometimes be used after surgery to destroy any remaining cancer cells in the affected area
high-dose chemotherapy followed by a stem cell transplant – where stem cells are collected, frozen and stored prior to intensive chemotherapy, and are given back to them afterwards
immunotherapy – where a medicine that directly targets the neuroblastoma cells is given.
Additional reporting Caters
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