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Lily's Story

Lily's family visited the Cotswolds in November 2023.

In September 2020 a month after turning 9, Lily showed us a small lump just below her right knee, it was the size of a pea and in all honesty we really didn't think much of it. Lily has always been pretty accident prone so we presumed she'd bumped it. It didn't hurt her, it wasn't causing any issues, so we said we'd keep an eye on it.

A month later it had grown to the size of a two pound coin. Still no pain. We made an appointment with the GP, who said she wasn't sure what it was and was putting in an urgent referral for an ultrasound. She said she would do it urgently as there were a lot of delays due to COVID. I came away from that appointment thinking it was maybe a cyst that would need draining and how much Lily wouldn't like that. Little did I know - cancer had not even entered our minds.

3 weeks later and on her brother's 7th birthday Lily had an ultrasound at our local hospital. By this point the lump had grown bigger than her knee. We were told it definitely wasn't a cyst and more investigation was needed. Two days later she was back at the hospital having blood tests and x-rays done and we found out that Lily had been referred to the specialist paediatric oncology centre at University Hospital Southampton. The lump was still Lily's only symptom. She wasn't unwell, or in pain, she'd put on weight, not lost weight.

Over the next couple of weeks Lily had lots of appointments, and it still wasn't clear if it was cancer or not. At one point we were told it may be a skin infection. She had a biopsy done which showed the cells looked malignant, but it wasn't the normal types of childhood cancer seen in this part of the body. After two weeks of further testing we were told that it was cancer, but they currently couldn't classify it further than an undifferentiated soft tissue sarcoma. It was aggressive, and they wanted to start treatment immediately. This type of cancer has very little research and no treatment protocol, so they had to use a best guess treatment plan.

Lily underwent 10 rounds of chemo alternating 5 different drugs two weekly, ovarian cryopreservation, surgery to remove the sarcoma and 6 weeks of radiotherapy to two areas where there was potential spread. In September 2021 we were told Lily had no evidence of disease. She has just moved to 4 monthly MRI and chest x-rays and continues to have no evidence of disease. Lily is under a variety of hospitals and teams and is being monitored for a number of issues as a result of the treatment, but is doing really well.

It's Jake, Lily's brothers birthday on Thursday so this weekend will be 3 years since the ultrasound that started everything. Lily's treatment was during Covid, which meant only one parent in hospital with her and no visitors.

She had treatment at 5 different hospitals, which meant our family of 5 spent a lot of 2021 apart.

Breaks like this are amazing, and a huge thank you to Tom and everyone at the foundation, to be able to have that quality time together is brilliant.

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