Candlelighters aims to raise funds and awareness this September for Childhood Cancer Awareness Month (CCAM).

#ChildhoodCancerAwarenessMonth takes place in September each year. At Candlelighters, along with many other children’s cancer charities across the globe, the charity marks CCAM each year to help increase the awareness of childhood cancers, as well as the work they do and the support they offer to families across Yorkshire.

Nurses on Ward L31 at Leeds

Each year, over 150 children in Yorkshire are diagnosed with cancer. When a child is diagnosed, lives are turned upside down instantly: not just for the child but the entire family. Getting well again can be a long and challenging journey, emotionally, physically, and financially. Supporting children and families throughout that journey is why the charity, Candlelighters was formed more than 40 years ago. Their mission is to bring light to every family affected by childhood cancer across Yorkshire by providing emotional, practical and financial support, as well as bringing hope, by investing in vital research to improve the outcomes and lives of children with cancer.

Leeds Civic Hall shines gold to mark the occasion

Every September Candlelighters looks to turn Yorkshire gold in support of CCAM and this year is no different. Leeds City Council buildings will light up gold, as well as Leeds Direct arena on the 1st and 30th of September to help mark the international campaign. The charity’s campaign throughout the month, encourages families and supporters to help raise awareness about the signs and symptoms of childhood cancer, such as continued, unexplained weight loss, increased swelling or persistent pain in the bones, joints, back, or legs and development of excessive bruising, bleeding, or rash which are just a few of the changes in a child’s body that can signal a problem that may need medical care. In addition to raising awareness, CCAM is also a great way to raise the vital funds needed to be able to support children and families through a cancer diagnosis as well as investing in vital research. You can set up a gold-themed fundraiser by heading to their website, https://www.candlelighters.org.uk/ccam/

Diamond at Leeds Children’s Hospital

As well as CCAM, over the next few months, the charity celebrates its 45th Anniversary! They aim to share some of the amazing things Candlelighters have been able to achieve over the years, as well as taking a trip down memory lane with past patient stories from whom they supported as children. The charity have set up a special fundraising page to help share memorable stories and the opportunity to leave a donation to ensure they can continue creating memories for years to come. You can share your memories here at https://visufund.com/candlelighters-ribbon-wall or why not make a donation? Read more in their latest special 45th Anniversary edition newsletter on their website here!

Niamh, whilst on treatment with her sister Grace and brother Joe

Past patient Niamh Sedgwick from Halifax who was diagnosed with a Wilms tumour at the age of three, recently turned twenty one, a birthday some thought she might never reach. Niamh underwent a seven hour operation to remove the tumour at Leeds Children’s Hospital followed by six months of weekly chemo. Niamh, now happy and healthy says, “I have just finished three years at Northumbria University studying Business with Marketing Management and have just started a years’ paid placement with a Cloud company based in Manchester.” Niamh and her family have fond memories of Candlelighters back when they were receiving treatment at Leeds Children’s Hospital in 2003. She say’s “When we first arrived onto the ward, the whole atmosphere seemed to lift our family’s spirit. There were lots of kids, some toddlers running around with drip stands, driving little cars, lots of colour and activity, and a packed-to-the-brim playroom. We recognised all of the fabulous extras and luxuries which were funded by Candlelighters. For example, the full-time registrar, the family Sunday lunches, the packed playroom and play staff, books, games, parent’s kitchen, wonderful furniture and state of the art equipment, along with many other things. My siblings, Grace and Joe attended the sibling support groups and we went to the Christmas party. We also used the chalet at Primrose Valley where all of the family could spend quality time together relaxing and have fun.”

Niamh Sedgwick, aged 21

Mathinda, Mum to eight year old Diamond, from Leeds who recently had her first week back at school after a long time on treatment for acute lymphoblastic leukaemia (ALL) expands on how Candlelighters staff have made an impact over the last year, “The list is endless but just to name a few: help with laundry, food vouchers and food shopping, referrals for talking therapy, massage offers, always checking on me and Diamond asking if we need anything doing. God knows what I would do without the cups of tea and just for them being there to listen and so often passing those tissues when things get too much.”

Evie was diagnosed with Acute myeloid leukaemia (AML) in August 2020

It’s important to note that, as many families move much closer to a normal way of life, the effect of the Covid-19 pandemic will be felt by families supported by Candlelighters for some time. Natalie Kisby, Head of Family Support at Candlelighters says, “Covid has massively impacted every aspect of our family’s lives. It’s an ongoing journey for them and is still ever changing. The last year has had such a detrimental effect on mental health and wellbeing for families going through childhood cancer and we expect that to affect those families for years to come.” Whilst many of us are enjoying the easing of Covid restrictions, children and families in hospital are still heavily impacted by restrictions in the hospital which remain in place to keep everyone safe. Only one parent or carer is able to stay with their child at the hospital and visitors are not allowed. This means families continue to be torn apart at a time they most need each other. Partners are not able to be together, siblings can’t see each other and grandparents and extended family and friends cannot see the sick child to give their support. Some wards, like the Bone Marrow Transplant Unit continues with the strictest restrictions due to the level of immunosuppression in these children. Families on these wards are unable to leave the wards or hospital at all and children can remain on these wards for months on end.

Evie at Leeds Children’s Hospital making rice crispy buns!

One family going through this right now, is the Armstrong family, whose daughter Evie has been in hospital for over a year. Evie was diagnosed with acute myeloid leukaemia (AML) in August 2020 and has been in hospital ever since receiving treatment, including a bone marrow transplant. Mum, Katy Armstrong adds, “As I couldn’t stay on the ward with Evie’s Dad, Simon, Candlelighters were able to provide us with some overnight accommodation at The Candlelighters Cottage. This is a beautiful self-catering shared accommodation, home from home, available to families with children receiving treatment in hospital. We are very grateful for all the help they provide and we are able to see first-hand what wonderful work they do! Simon and I were able to have our first dinner together in 6 months and spend some valuable family time with Evie!”

Natalie Kisby carries on to say, “It’s vital that we continue to provide a high level of support for families in hospitals who still face enormous pressures. As well as our team of Family Support Workers in the hospital who provide day to day support for families alongside NHS staff, we provide additional services such as laundry and a weekly shopping service which has been a lifeline for families who can’t leave the wards even to get clean clothes or nice food for them or their children to encourage eating to aid recovery. We’re also reintroducing our Family Holiday service in the new year to provide a much needed break for families who may have struggled with their wellbeing and finances throughout the pandemic.”

In addition to supporting families going through childhood cancer now, Candlelighters has a long history of investing in research into childhood cancer. The charity’s vision is to improve the outcomes and lives of children facing childhood cancer through dedicated research, training and education. CEO, Emily Wragg says “It is vital that we create a brighter future for children diagnosed with cancer to improve survival rates but also that they survive better. For many children that survive cancer, they suffer long term impacts from the disease which can affect them for their whole life. We are have invested in vital research for nearly 40 years now and will continue to do so to achieve our vision.”

Candlelighters have funded £1.6m into a fellowship programme since 2015 across the University of Leeds and Leeds Teaching Hospitals NHS Trust which supports the research training of academic paediatric oncologists and haematologists. This ensures that this expertise is retained in Yorkshire to treat our children as well as discover more about childhood cancer and ways the disease can be treated more effectively.

Research from the Yorkshire Specialist Register of Cancer in Children and Young People, which is also funded by Candlelighters, evidences that survival rates for children’s cancers continue to improve due to ongoing investment into researching treatments. The five year survival for all childhood cancers diagnosed in Yorkshire is now at 86%, compared to just 73% 20 years ago, with the childhood cancer survival rate in Yorkshire now among the best in the world. Professor of Epidemiology, Richard Feltbower, and Director of the Yorkshire Register’s research programme, said, “Collecting and analysing high quality epidemiological data is central to improving cancer care. It allows us to monitor how effective treatments are and identify any major side-effects. By sharing that information with researchers, the clinical community and families of childhood cancer survivors, not just in Yorkshire but across the entire country, we can help focus research on key areas.”

 

Adam Glaser, Professor of Paediatric Oncology and Late Effects at the University of Leeds and consultant at Leeds Teaching Hospitals NHS Trust, follows on to say, “If the progress seen over the last 20 years is repeated over the next 20 years, then we could reach a point where very few children die of the disease.”

 

“That is a tribute not only to the NHS frontline staff who care for young cancer patients but also the teams of researchers and scientists finding new and better ways of tackling the disease.”

Thanks to support from existing and budding fundraisers and families supported by the charity, this year’s CCAM campaign is bound to shine gold across the region, with families at Leeds Children’s Hospital already donning their best #GoGold attire, including a giant gold ribbon!

Will Brown, at Leeds Children’s Hospital who has Non-Hodgkin lymphoma, showing his support for CCAM!

Candlelighters reminds their families that if any of them are experiencing any worries or that feel they need any support at any time during or post treatment or bereavement, Candlelighters’ support is there for as long as they need it, even if they’ve not used the service for a while. The charity says to simply get in touch by calling on 0113 887 8333 or email thesquare@candlelighters.org.uk

If you or anyone you know would like to support Candlelighters during Childhood Cancer Awareness Month, please visit their website www.candlelighters.org.uk/ccam/ to find out more or make a donation online.

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