Schoolgirl, 11, given devastating rare diagnosis after her symptoms were ‘mistaken for growing pains’

A school girl underwent life-saving surgery to remove a rare cancer after originally dismissing her symptoms as 'growing pains'.

11-year-old Ivie Adams' mum Zoe began to feel concerned about her daughter around last May, when she started to complain about having pains.

At first the family just assumed these pains were age related or aches from playing football and netball.

However, Zoe, 47, began to worry much more when Ivie started waking up in the middle of the night feeling the same pains.

When Zoe called the GP in hope of getting an appointment she was told that they would have to wait five weeks.

The mum explained: “I queued the following morning at 7am to get Ivie seen when she should have been having her induction at her new school. It is lucky as after she had an X-ray, it found she had bone cancer in her femur.

“It’s scary to think about what could have happened if she didn’t get seen early on.”

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Ivie was then diagnosed with malignant peripheral nerve sheath tumour (MPNST). Only one in 100,000 people are affected with this disease.

MPNST is a cancer of the cells that form the sheath which covers and protects peripheral nerves, which are those outside of the central nervous system.

Ivie had a surgery to remove her femur bone after doctors discovered a 26cm long tumour going up from the top of her knee through her leg.

The schoolgirl now has to live with an artificial leg and hip and has had to completely learn how to walk again.

Ivie, from Sittingbourne, Kent, said: "Even though I didn’t think much of it when I was first diagnosed, all I knew is that I didn’t want to die.

“The first round of chemo was really horrible as it made me sick and I was worried it was going to happen again when I had the second dose.”

Zoe described how she felt while receiving the diagnosis from the doctors as 'horrific', as were the months 'of hell' Ivie had to go through while she was recovering.

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Ivie’s chemotherapy started in August and she lost her hair because of the treatment.

But, as doctors were unable to see if the chemotherapy was effective in killing the cancer cells, they decided the best option was to replace Ivie's femur with an artificial hip and knee.

She had the surgery on 14 November at University College London Hospital in Euston, and has since then had to learn how to walk again in an extensive course of physiotherapy to ensure she could bend her knee.

The doctors have 'rung the bell' which means that Ivie is now cancer-free. However, the pupil will still have to attend checks once a month for the next two years.

The 11-year-old is now back in school and her family are doing what they can to raise awareness of rare cancers that sometimes do not have clear symptoms so that tumours can be spotted from the get-go.

Zoe said: “We both want to help people recognise the symptoms of bone cancer, called sarcomas, and help any families that get into what we have had to endure.

“Ivie is an inspiration and has a great story to tell, to help people like her in the community.”

If you’ve been affected by any of these issues and want to speak to someone in confidence, contact Macmillan’s Cancer Support Line on 0808 808 00 00, 8am–8pm seven days a week.