Five years of 'ups and downs' for Kettering girl diagnosed with rare tumour after falling while learning to walk

Nicola Francis fell and hit her mouth when she was learning to walk.

Her mouth swelled up and went down after a week but the left half of her face kept swelling.

Concerned mum, Iveta Kosova, 40, of Kettering said she went back and forth between the doctors and dentist, but her daughter's jaw kept growing.

Then, while the pair were waiting for an appointment in her local GP, Nicola fell and hurt her cheek and was sent to Northampton Hospital.

Doctors there suspected that something was not right with the growth in her mouth and performed a biopsy which revealed she had a Giant Cell Tumour - a rare and aggressive condition that causes painful growths in and around her jaw.

Nicola was referred to Great Ormond Street Hospital where she has undergone 20 operations to remove the tumour.

And now Iveta said the family are in limbo as they don't know what treatment will work.

Iveta, a stay-at-home mum from Kettering, said: "When we got the diagnosis, I nearly died - I was so broken.

"I didn't want to leave her side as I knew what was coming.

"Every seven weeks the tumour will grow back to the size of my first.

"She has had more than 20 operations over the last few years.

"Right now, we don't know what will happen next, we are currently in limbo and don't know if there is a cure."

In 2019, Nicola was just nine-months-old when she fell while learning to walk.

She hit her mouth on the floor and her mouth swelled up, instead of going down her face continued to swell.

Iveta said: "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."

In 2019, Iveta and Nicola were waiting at her local GP when Nicola tripped and the swelling in her mouth popped.

She was taken to Northampton Hospital by her mum where they operated - to take some teeth out - but doctors found something more sinister.

Iveta said: "Two weeks after the operation her mouth still kept growing.

"Doctors suspected that something was not right and they did a biopsy.

"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."

Nicola was transferred to Great Ormond Street, London, in March 2020.

The tumour continued to grow and every seven weeks, Iveta would undergo an operation to remove it.

Then in 2020, Iveta started getting chemo injections into her leg to stop the tumours growing.

"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 they started injecting her with chemo to stop the tumours growing."

For three years, the tumours stopped growing thanks to the chemo injections but in July 2024, Nicola had to stop the injections - as doctors were concerned the chemo would start damaging her body.

But the tumour continued to grow and Nicola has had 20 operations to remove the tumour.

Iveta said: "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."

Iveta said she and her family are now in limbo and not sure what the future will hold or what treatment options are available.

But, despite everything she has been through, Iveta said that Nicola 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."

Since Nicola's diagnosis, Iveta has stopped working to look after her and her dad has had to take time off work.

The family has started a GoFundMe to help raise money for travel expenses to the hospital.