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Highsted Grammar School pupil Ivie Adams, from Sittingbourne, has ‘life-saving’ surgery to stop rare cancer
05:00, 05 May 2024
An 11-year-old underwent “life-saving” surgery to stop a rare bone cancer which was originally put down to “growing pains”.
Ivie Adams was about to start her first year at Highsted Grammar School in Sittingbourne when she was diagnosed with a form of the disease which only affects one in 100,000 people.
Last May, her mum, Zoe Adams became concerned about Ivie’s health when she complained about having pains but the family believed these were age-related or fatigue from playing football and netball.
However, the 47-year-old, of Borden Lane, Sittingbourne, started to worry more when the youngster was waking during the night and complaining about the pain.
Zoe called to get a GP appointment at the town’s Memorial Medical Centre but was told it would be in five weeks time.
“I queued the following morning at 7am to get Ivie seen when she should have been having her induction at her new school to get her seen,” Zoe said.
“It is lucky she was seen as after she had an X-ray it found she had bone cancer in her femur bone.
“It’s scary to think about what could have happened if she didn’t get seen early on.”
Other than the pain there were no other symptoms such as a lump or redness around the 26cm long tumour going up from the top of her knee along her leg.
To check to see what type of cancer it was, the doctors ordered a biopsy, which was conducted on July 24.
The family found out on July 31 it was a high-grade malignant peripheral nerve sheath tumour sarcoma.
Zoe said receiving the phone call from the doctors was “horrific” as were the months “of hell” Ivie had to go through to get better.
On August 2, she had her first round of chemotherapy at UCLH Euston.
She would have six, three-day rounds of the treatment and lost her hair as a result of it.
After a delay to see if the chemotherapy had worked, doctors were unable to see how many cells the treatment had killed and decided to remove her femur and replace i with an artificial hip and knee.
Ivie had the surgery on November 14.
She said: “The first round was really horrible as it made me sick and I was worried it was going to happen again when I had the second dose of chemo.”
“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.”
After the surgery, Ivie has had to learn how to walk again and has had extensive physiotherapy to ensure she could bend her knee.
It will be at least a year to 18 months before Ivie can return to playing sports, if she can at all.
While the doctors have ‘rung the bell’ – meaning she is cancer-free – the pupil will need to attend checks at UCHL twice a month for the next two years.
She has also had genetic testing so the disease can be further researched and understood.
Ivie is now back at school, which she has thanked “for supporting” her throughout her battle with the cancer as well as the doctors and nurses.
The family want to raise awareness of rare cancers that sometimes do not have clear symptoms so tumours can be spotted early.
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.”
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