Her mum, Zoe, shares their story to raise awareness.
Ivie's main symptom was pain in her right leg. It started as a shooting, stabbing pain which mainly occurred at night. Initially the pain was not excessive, and there was no lump or redness. The pain started in May 2023.
At first, we thought Ivie had been overdoing things from playing football and netball or was experiencing growing pains.
By June 2023 the pain was getting worse and started to keep Ivie up at night, so I decided to take Ivie to the GP. I was told by the GP practice that the only available appointment was in five weeks' time, so I queued outside the practice from 7am the following morning so Ivie could be seen.
I'm so glad that I pushed for the appointment for Ivie. Initially the doctors suspected growing pains or a sports injury, but she was sent for an x-ray and bloods for further investigation. The x-ray form stated a suspected hairline fracture, and nothing could have prepared us for what came next.
The scan showed a 26cm tumour going from Ivie's knee to the top of her leg.
My whole life fell apart when I received that call from the doctors. It was so shocking, I cried my eyes out and my whole body was full of sheer worry and panic.
Ivie was sent for a biopsy at the Royal National Orthopaedic Hospital (RNOH) and was diagnosed with a peripheral nerve sheath tumour of the bone, also known as Spindle Cell Sarcoma of the Bone, which is extremely rare.
The journey from the phone call to the official diagnosis was heartbreaking, worrying and emotional because I knew it was cancer and we had a month gap before any treatment started. My immediate family were also very shocked and worried.
Ivie started chemotherapy on 2nd August 2023 at University College London Hospital (UCLH). In total Ivie had six cycles of chemotherapy. For each round she was given ifosfamide and doxorubicin over three days and nights.
The chemotherapy made Ivie extremely sick and she lost her hair.
We took it slowly speaking with Ivie, but overall she took it well. Once she realised what was happening to her, her outlook was one of sheer strength and determination to get herself through treatment.
I remember one thing she said to another patient at UCLH when she was admitted for treatment, which was:
I don't care about losing my hair, I just don't want to die.
On 14th November 2023, Ivie had surgery to remove the tumour. The whole of her femur and knee joint was replaced with a metal prosthesis, which was custom made for Ivie in New York. The implant is a growing prosthesis which means Ivie will not need further surgery as she grows... fingers crossed.
After surgery Ivie had to learn to walk again and had extensive physiotherapy to help her bend her knee. She still uses a crutch at school but has regained a lot of her strength over the past few months.
Sadly, she may never be able to play sports again.
In December 2023, Ivie finished her chemotherapy and she is currently followed-up every two months at University College London Hospital (UCLH).
Ivie was so brave throughout all her treatment and has so much respect for the surgeons and nurses that treated her. Ivie's message to others is 'be strong, you can fight this'. I would add don't forget that there is help and advice out there, and acceptance helps with the fight on this tough journey.
Ivie has such a rare cancer with no major signs or symptoms, so I feel strongly that parents need to be made aware of this disease. I always say to people who ask me 'how did you know?' that I didn't know.
I thought at first it was just growing pains or over exertion. Then, one day, something just felt wrong. Ivie had fallen asleep during the day, which is so unlike her, so I knew that something was not right. Trust your instincts and never give up.
I was told to wait five weeks to see a GP, but I insisted that Ivie was seen, and this could have saved her life.
GPs also need more training and awareness around this type of cancer. We were so lucky the GP took us seriously and sent Ivie for an x-ray, but I have met so many parents whose children were sent away and whose diagnosis was delayed.
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