Your Summer Update
The Chime is your supporter update, created especially for you. We hope you enjoy reading about how you’re making a difference!
Thank you to all of you amazing people who donate, play our raffle and raise money to help more children with cancer ring the end of treatment bell.
Ceylian was diagnosed with Ewing sarcoma in 2017 when he was just two years old. His mum, Marina, shares their story so far.
Towards the end of 2016, we noticed that Ceylian started to have difficulties walking. His GP sent us to our local hospital to have an MRI scan, which showed a tumour the size of an orange in the back of his head. Ceylian’s condition deteriorated very quickly and his amazing neurosurgeons had to organise emergency surgery.
Ceylian’s nine hour surgery was a success and the doctor called it a “Christmas Eve miracle”. Unfortunately, one week later, we were told that the tumour originated from a cancer on the bone of his forehead. That was the first time we were told that Ceylian had Ewing sarcoma. Not knowing what was round the corner made us try to enjoy every day as fully as we could.
In September 2018, we were contacted by Ceylian’s oncologist. He informed us that the bone on his forehead showed some changes and our little boy had to go back into surgery. Despite his amazing recovery, in May 2019 the tumour returned. This time, it was 2cm and had grown very quickly. Ceylian had to go back into surgery again to have a new round of 12 cycles of chemotherapy. After more than 120 injections and many blood transfusions, Ceylian got much stronger and never forgot to smile!
Ceylian finally rang the End of Treatment Bell in March earlier this year, which was an amazing moment for us all. Almost immediately after, the pandemic struck and we began post-treatment life in lockdown. We were used to confinement and isolation, to being alone and afraid of germs. It was the way we had to live every day with cancer in our lives, so the lockdown wasn’t a really big change for us.
Just as we thought we had reached the light at the end of the tunnel, we were dealt another blow. At the beginning of April, we noticed a bump on Ceylian’s head and an MRI scan revealed that his cancer had returned. I can’t tell you how devastating that was to hear.
As I am writing this in June, Ceylian’s latest surgery has gone well. However, we are still waiting for some test results to find out if all of the visible tumour was removed or if he needs further surgery and treatment. We’ve been told that chemotherapy is no longer an option for Ceylian as it’s proved to be ineffective, so we are waiting to see if he can receive a new genome treatment which is more tailored and targeted. It’s especially difficult going through this during these uncertain times, but we are hoping for the best and staying positive.Read more about Ceylian's story
This helps to support children with cancers so they can be with their families for longer.
Thanks to your amazing support, we are able to fund research projects for very rare types of cancer such as rhabdomyosarcoma. This cancer is very hard to treat and it affects more children than adults, with an average of 70 children diagnosed each year in the UK.
As part of our research grants programme, we awarded £408,585 to Dr Zoë Walters at the University of Southampton. Dr Walters has discovered that a protein called EZH2 is present at high levels in tumour cells. This project focusing on rhabdomyosarcoma is currently looking at whether new drugs attacking this protein can help create more effective, targeted therapy with fewer long-term side effects.
Dr Zoë Walters answers your questions on the research project:
Over the last 20 years or so there has been very little change in the treatment regime for rhabdomyosarcomas. My work is testing innovative new treatments for rhabdomyosarcoma patients that we can rapidly progress to clinical trials. The hope is that the more targeted approach may have less severe side effects and improve survival rates for rhabdomyosarcoma patients with a poor prognosis.
Without this grant I wouldn’t have been able to start my career as an independent researcher, so to me personally it means the world! It also means that I can follow my dream of working towards a better therapy for children with rhabdomyosarcoma and other cancers. This grant has allowed my team and me to assess the use of the new treatments not only for rhabdomyosarcoma, but also for other cancers affecting children.
My hope would be that we will have a really good idea of how to effectively execute precision medicine for patients based on genomic profiling and other information from a patient’s tumour, which will allow us to accurately tailor treatment to best fight that tumour. We are rapidly moving towards this goal, and I believe targeted therapies, alongside other innovative therapies, will really come into their own in this arena.
Current treatments, whilst effective, can be very harmful in other ways and this includes impacting upon the immune system. Any treatment that reduces the ability of the immune system to fight infections is extremely risky with an aggressive virus like coronavirus so prevalent at the moment. More targeted treatments would hopefully reduce the impact on the immune system and so may be more likely to target the cancer without suppressing the immune system. This would mean the immune system can continue to effectively fight off other viruses.
Children with Cancer UK is an amazing charity. The work they fund has been vital in making a difference to all aspects of childhood cancer research, to funding ground-breaking research into new and more effective treatments. On a personal level, they have been unbelievably supportive and encouraging throughout my fellowship so far and have helped me make huge strides in my research. Without the generosity of Children with Cancer UK’s supporters, none of us would be able to carry out our work. You are vital and amazing. Thank you so much!
If you would like to find out more about Dr Walters’ projects:
Thanks to generous supporters like you donating to our urgent appeal in the midst of the pandemic, we raised over £166,000 to help children with cancer through these uncertain times.
Not being able to physically meet up hasn’t stopped our special events team from putting on events for children with cancer and their families. Two virtual parties were hosted and led by Fairy Sparkles and Pirate Pete.
Our hosts provided games, dancing and some magic tricks, allowing the children to forget about lockdown, COVID-19 and cancer for a little while.
“I think what Tilly has missed recently is the planning and anticipation of an event. This last week she has practiced her outfit and makeup two or three times before she decided what to wear, it was such a treat. A huge thank you to Children with Cancer UK.” – Sarah, Tilly’s mum
Even during these worrying and uncertain times, you have continued to support us and many of you have come up with new and creative ways to carry on fundraising.
Thank you to all of our amazing supporters! Take a look at some of the brilliant ways our supporters have been fundraising:
After the postponement of the Virgin Money London Marathon, James ran 873 laps of his garden instead in 4 hours and 57 minutes, raising over £3,000.
Evie and Tommy have raised over £10,000 as part of our Mini Superhero Challenge.
For The 2.6 Challenge, Alexa raised £212 for us by running 2.6km on the treadmill.
Hollie celebrated 10 years all clear from leukaemia by cutting 14 inches off her hair and raised just under £200 for us.
From marathons to charity car washes and their incredible Tour De Branch cycling challenge, our partner Kwik Fit successfully raised £1 million for our vital work.
Children with Cancer UK first partnered with Beads of Courage UK in 2019. Our funding ensures that their special beads programme, which helps children record their cancer journeys, is available to all young cancer patients being treated across the UK.
Ted was six months old when he was diagnosed with infantile leukaemia. He was given the all clear eight years ago, but still continues to have check-ups. Today, he has over 2,000 Beads of Courage. His family launched Beads of Courage UK in 2013.
With your incredible support we have already raised £156,000 to support the Beads of Courage UK oncology programme.
Every year, 4,500 families will be given the devastating news that their child has cancer. With the help of our supporters, we are ensuring that every child and young adult will be supported by the programme. The Beads of Courage are an essential support tool as they have a positive impact on the mental health and wellbeing of children going through difficult treatment journeys. Each bead represents a different aspect of treatment.
Collecting these beads throughout treatment motivates young cancer patients to get through unpleasant or distressing procedures, and helps them feel rewarded and proud for completing them.
Many children find it difficult to put their journey into words, so the beads help them express what they have gone through by providing a visual representation of their treatment.
You can donate or find out more about the Beads of Courage UK oncology programme:Read more
We recently launched our Remembering website, giving our supporters the opportunity to pay tribute to a loved one by setting up a page in their memory. It’s a beautiful way to share wonderful memories, photos and stories with family and friends while helping to fund vital research into childhood cancer.
For more information, visit our Remembering website:Find out more