The Chime is your supporter newsletter update, created especially for you. We hope you enjoy reading about how you’re making a difference!
Thank you to amazing people like you who donate, play our Grand Draws and raise money to help more children with cancer ring the end of treatment bell.
Nieve was diagnosed with Extra Renal Wilms’* tumour with metastatic lung disease when she was just five years old. Her mum, Angie, shares their story.
We had taken Nieve to the hospital as we had noticed a slight lump in her lower abdomen. At first, the doctors found it difficult to know exactly what is was, but after a month of tests we were given the devastating news. Our little girl was diagnosed with Extra Renal Wilms’* tumour with metastatic lung disease shortly after her fifth birthday. Chemo started quickly but then a new despair hit when she had to undergo an emergency 12-hour operation 2 weeks into treatment. The tumour that was already causing so much anguish was haemorrhaging into itself.
Thankfully, the main tumour was fully removed but Nieve had further smaller tumours too. The next wait was for her recovery in intensive care before chemo could restart. With the risk of further growth, every minute felt like days before we could get her back into the oncology ward.
*Wilms’ tumours are a type of kidney cancer which affects children, thought to develop from immature cells in the embryo.
Even when chemo resumed, we faced the distress of seeing Nieve continuing to struggle. Her only option was to be fed through a nasogastric tube but her body couldn’t keep anything down. It was heart-breaking to see her so weak with weight loss and this continued to be a challenge throughout her treatment.
Luckily we had a happy ending. Eventually we found food she was able to keep down, and while she faced over 10 months of gruelling chemo, as well as radiotherapy and other procedures, she is now cancer-free. Ringing the end of treatment bell in October 2018 was a day we’ll never forget!
It’s because her family kindly agreed for Nieve to feature in our TV ad as well as other fundraising materials. The appeals Nieve has featured in, including our TV ad, have helped raised hundreds of thousands of pounds for children facing cancer.
Sharing real stories of what children with cancer and their families are facing is absolutely crucial to our charity for raising awareness. It’s often a very emotional process to share their experience with us and we’re so grateful to her and her family, as well as every other child, and their loved ones who choose to share their story with us.Watch Nieve in our TV ad
If you’ve been touched by Nieve’s journey, please help us keep investing in crucial childhood cancer research that could otherwise go unfunded. With 12 more children and young people diagnosed with cancer every day in the UK, we need to do more but only can with your support:
If you would like to read more about Nieve’s cancer journey. Nieve’s mum Angie has shared their story.Read more about Nieve
If you would like to share your story, or know someone affected by childhood cancer who may like to share their story with us, we’d love to hear from you. Please email us at email@example.com. You can read the stories that other children have shared here.
Thanks to amazing supporters like you, we have joined forces with Cancer Research UK to co-fund five new, innovative research projects to transform our understanding of children’s and young people’s cancers and find new ways to prevent and treat these complex cancers.
As two of the biggest independent funders of children’s and young people’s cancer research in the UK, joining forces allows us to fund more research into children’s and young people’s cancers and accelerate our progress to improve survival.
Professor Richard Houlston at the Institute of Cancer Research is leading a research project focused on understanding why some children inherit a greater risk of developing cancer and relates to cancers such as Wilms’ tumour like Nieve had, as well as a range of other cancers including glioma and neuroblastoma.
Inside our cells is a genetic code that determines what they become and how they behave. It also determines whether a cell will be healthy or whether it will become cancerous. Errors in this genetic code are called mutations. Most mutations are harmless, but not if they happen in a cancer-predisposing gene (CPG).
Some cases of cancer in children and young people are associated with inherited mutations in these CPGs, but very little is known about them. This limits our ability to care for children and young people with cancer or prevent them from developing cancer in the first place. Although some CPGs have already been identified, there are still more to be found. These are what Professor Richard Houlston’s team are seeking to identify.
By identifying previously unknown CPGs, the team hopes to determine new ways to monitor children and young people with inherited CPG mutations, ensuring that we can diagnose cancer sooner. The insights they gather could also have important implications for how we treat cancer, allowing doctors to better tailor each child’s cancer care, ensuring that they get the right treatment for their cancer and the best possible life afterwards.
“It’s so humbling that there are so many kind people willing to give money to such a worthwhile cause close to our hearts. The money raised can hopefully be used to fund research into better targeted treatments with less side effects for children. We hope with more research thanks to funding from donations, more children will survive childhood cancer.”
Arun, Nieve’s Dad
Find out more about our research projects in partnership with Cancer Research UK
The impact of the pandemic has been huge for everyone including all of us at Children with Cancer UK. We would like to thank all of our incredible supporters for being truly remarkable and never ceasing to support children and families affected by cancer.
Fundraising for us since 2018, ActionCOACH have been taking on many challenges including 12km to raise awareness for the 12 children and young people diagnosed every day in the UK. So far, they’ve raised over £19,000 for us!
Finnley took on running the stairs at his family home 2000 times over 10 days. His amazing 26k steps raised £473.75 and even appeared on BBC East Midlands ‘Make a Difference’ campaign! Thank you so much!
This year Daniel Byrne is running the London Marathon for the first time, in memory of his niece Ada, who very recently passed away from an aggressive tumour on her kidney. He’s already raised an amazing £12k in his first 2 weeks! Wishing him and all of our fantastic runners the very best of luck!
Many small businesses kindly help us by through sales of their products and services, so we’ve found an even easier way for you to get involved!
If you run or work for a small business and would like to start supporting us, simply sign up and pledge your donation here: workforgood.co.uk/charities/children-with-cancer-uk/
Read some of the different and inspiring ways you find to support us.
Thanks to the amazing support of people like you, we have continued to run special experiences for children with cancer and their families. Due to the pandemic, these have been virtual to help bring lots of fun for them while keeping everyone safe.
Back in the Spring, we held a very special baking party on Mother’s Day. We were joined by 50 families affected by childhood cancer to create some yummy treats! Each family received a baking kit in the post to create chocolate shortbread biscuits, and they cooked along to a live tutorial. Families were also included in a mini treasure hunt, true and false game and even learnt how to create their own butter from cream.
We’re so grateful for all the families that joined in from home and to all our supporters, like you, who help to make these fun experiences possible for children affected by cancer. We will continue to run virtual events but also hope to invite more families impacted by cancer to a physical experience soon.
10 year old Phoebe said…
We loved making the delicious cookies and had loads of fun with my sisters and the other families. We are going to share them with everyone at a Mother’s Day tea party and show Grandma on Zoom this afternoon.
If you’re a family affected by childhood cancer and would like to hear more about our virtual events and activities as well as be kept up to date with future events, sign up to our family newsletter
Fancy yourself a bit of a baker or like enjoying food out with friends and family? You could get involved with your own bake-sale and fundraise for us at childrenwithcancer.org.uk/perfectpicnic
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