My little girl’s face kept swelling after she fell over learning to walk – it broke my world when we got the diagnosis
A HEARTBROKEN mum says she "nearly died" hearing her little girl's diagnosis - after the tot's face kept swelling following a tumble.
Little Nicola Francis fell and hit her mouth when she was learning to walk at just nine months old.
Her mouth swelled up and went down after a week. But the left half of her face kept swelling.
Her concerned mum, Iveta Kosova, 40, said of the accident in 2019: "Like every baby she tried to start walking and fell over, like you do.
"She hit her mouth, which started to swell up but half of her face went down after a week and the other half kept growing.
"I kept going to the GP and dentist but nobody knew what was going on, all while Nicola's mouth kept getting bigger and bigger."
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Then, while the pair were waiting for an appointment in her local GP, Nicola fell and hurt her cheek and the swelling in her mouth.
She was sent to Northampton Hospital by her mum where they operated to take some teeth out.
Iveta, a stay-at-home mum, from Kettering, Northamptonshire, said: "Two weeks after the operation her mouth still kept growing."
Doctors suspected that something was not right with the growth in her mouth and performed a biopsy.
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This revealed she had a giant cell tumour - a rare and aggressive condition that causes painful growths in and around the jaw.
Iveta said: "When we got the diagnosis, I nearly died - I was so broken.
"The results came back and said that Nicola had a giant cell tumour.
"It broke my world because I knew the next few years would be tough.
"I didn't want to leave her side as I knew what was coming."
Nicola was transferred to Great Ormond Street, London, in March 2020.
The tumour continued to grow and every seven weeks, the tot would undergo an operation to remove it.
"Every seven weeks, the tumour would grow to the size of my fist," Iveta said.
"They didn't have a treatment so they just kept operating every seven weeks."
Then in 2020, Nicola started getting chemo injections into her leg to stop the tumours growing, which worked for three years.
What is happening to her breaks my heart, it has been five years of ups and downs
Iveta Kosova
But in July 2024, Nicola had to stop the injections as doctors were concerned the chemo would start damaging her body.
Nicola has now had 20 operations to remove the tumour.
Now, Iveta said the family are in limbo as they don't know what treatment will work.
Iveta says: "Right now, we don't know what will happen next, we are currently in limbo and don't know if there is a cure.
"The tumour has just kept growing and growing, doctors don't know a treatment so just keep operating to remove it.
"Two weeks ago, she had an operation to have a plate fitted into her jaw as when they last removed the tumour they took a bit of her top jaw.
"The plate is fitted so she can eat and be more comfortable."
Despite everything she has been through, Iveta said Nicola, 5, continues to be a "happy" girl who loves going to school.
Iveta said: "Nicola is a happy little girl who loves going to school when she is well enough.
"Her family and friends could not be prouder of her courage, but behind her smiles is a daily struggle - one that is emotionally, physically, and financially exhausting for her family.
"You wouldn't even think that something was wrong with her, she is so happy.
"What is happening to her breaks my heart, it has been five years of ups and downs."
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The family have started a GoFundMe to help raise money for travel expenses to the hospital - visit their page .
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What are giant cell tumours?
Giant cell tumours (GCT) are non-cancerous tumours that develop in the bone.
They mostly occur in the long bones of the the arms and legs.
The condition often affects people between aged between 20 and 45 years old.
Although they are benign, GCTs often behave aggressively.
They can grow quickly and damage the affected bone, as well as spread to the soft tissue around it.
In a very small number of cases, they can become cancerous.
The most common symptoms of GCT are:
- Pain
- Swelling around the tumour
- Fractures in the bone caused by bone weakness
- Restricted movement
Treatment of the tumours will vary between individuals - but it could involve surgery or a biological therapy called Denosumab.
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