Lily's Sarcoma Appeal

Raising funds for research into soft tissue sarcoma

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Lily's Sarcoma Appeal is a Special Named Fund at CCLG raising money for research into soft tissue sarcoma

Here is Lily's story, told by her mum Kirsty:

In September 2020, Lily, who had turned nine the month before, showed us a tiny little lump that had appeared on her right leg, just below her knee. Lily's quite accident prone so we presumed she'd just bumped it, but over the next few weeks it grew. In October we went to the GP to have it checked out, by which point it was the size of a £2 coin. Our GP was unsure what it was, so referred Lily for an ultrasound. Three weeks later, on 2 November, the lump was now larger than her knee, and Lily had the ultrasound. It was confirmed that it wasn't a cyst, and more tests were required. Two days later when Lily arrived at our local hospital for tests and scans, we discovered that the oncology team were now involved and this is where a whirlwind of scans, tests and appointments began.

Perhaps naively, it had never occurred to us that this fast-growing lump could be cancer. Lily was completely well, very happy and active, and the lump didn't cause her any pain except occasionally when she was kneeling on it. There was no weight loss, and in fact it was the opposite, Lily had gained weight. Her blood tests were completely normal and even when she first met with her oncology consultant and the paediatric surgeon at Southampton General Hospital, they were quite upbeat and thought perhaps it was just a skin infection.

A biopsy was arranged for the 19 November, but it wasn't until 1 December that it was confirmed she had cancer, a sarcoma. However, the histology from the biopsy couldn't determine what type of cancer Lily had, despite all the usual tests being done, so it had been sent to sarcoma specialists around the country. 

 Further tests still couldn't classify the exact type of tumour, so it came under the umbrella of a high-grade undifferentiated soft tissue sarcoma. This is very rare - we recently found out one in 16 million people a year are diagnosed with it in the UK. It’s so rare that there’s no set protocol for it and a 'best guess' treatment is undertaken. For Lily, this was the protocol that’s used for Ewing's sarcoma. 

After 10 rounds of chemotherapy, ovarian cryopreservation, surgery to remove the sarcoma and six weeks of radiotherapy, Lily’s now finished her treatment and is cancer free. 

Lily will suffer from several side effects because of treatment, including her right leg growing at a slower rate than the other, which will require intervention. The chances of relapse for an undifferentiated soft tissue sarcoma are as vague as the protocol. We've been told there’s a 40-70% chance of relapse, which is a huge range. 

Lily is a fun, happy, bubbly, friendly and caring child who loves art, drama, reading, writing, singing, and dancing. She’s always been incredibly active and started walking at 10 months and hasn't really stopped dancing, climbing, or riding her bike since.  At one point, we were told that the surgeons felt an amputation and ultimately a prosthetic would provide Lily with a better chance of using her leg, because of the size and position of the sarcoma and the expectation that radiotherapy would need to be used on the area. We've been very open with Lily throughout her journey, but this was something we didn't discuss with her until the surgeons had a clearer and more definitive plan. Thankfully, the sarcoma responded incredibly well to the chemotherapy and shrank enough so that it could be removed with good margins, and no radiotherapy was required to the area, which would have compromised the use. Lily spent three months in a leg brace and using crutches or a wheelchair after her surgery. Two weeks after the leg brace came off Lily was on a pogostick determined to master it while terrifying me! This speaks volumes of her character - fun and determined, and maybe a little bit stubborn, too! She’s completely fearless and once she decides to do something she’ll persevere until she can do it.

When the consultant first told Lily she had cancer she started to cry as she didn't want to lose her hair. But when we arrived home, she was deciding what colour wig she wanted and thinking about how she could fundraise as well as use this as an opportunity to teach her friends and classmates about cancer. When she was having her Hickman line fitted the play specialist on the ward said she'd never met a child so well adjusted to their prognosis.

 Lily started painting and selling ceramics after a fellow patient suggested it and she chose five charities to fundraise for, all charities that were helping her or us a family, as well as the two wards she was receiving shared care from. The nursery where Lily and her brother and sister went decided to hold a fundraising month in honour of Lily and another child who’d previously attended it and had been diagnosed around the same time as Lily. They raised £15,000 in one month and split it between them to go to the charities of their choice.

So many people did things to raise money including Lily's classmates, our family and friends, and people from the local community. We held a bake sale on our drive prior to Lily going to London for radiotherapy, raising over £1600, and in September 2021 for Childhood Cancer Awareness Month (CCAM) we organised a fun day at the local community centre. The day raised over £10,000. We also found out Lily was officially disease free that month, so it felt like a fitting time to bring that round of fundraising to an end, with £5,000 raised for each charity. 

 There’s very little research into sarcomas, especially ones as rare as Lily's, so we have no idea what our future holds. There needs to be more funding, more research, and better treatments and that’s why we’ve set up Lily’s fund with CCLG. We're now keen to raise as much money as possible for research into childhood soft tissue sarcomas and have various ideas on how to do this, including hopefully another fun day, and I'm planning on walking the Clarendon Way. Lily can't believe how little funding there is specifically for childhood cancer research and is determined to change this. 

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Text CCLG 5 LILY to 70300 to donate £5.

CCLG will receive 100% of your donation. You may also be charged for one text message at your network’s standard or charity rate.

You can make a donation or pay in funds raised by cheque, payable to CCLG, to CCLG, Century House, 24 De Montfort Street, Leicester LE1 7GB. Please ensure you make it clear that the donation is for Lily's Sarcoma Appeal so that your donation is allocated to the correct fund. 

Funds raised will support research into soft tissue sarcomas