This month we’re celebrating the successful first year of a pioneering at-home chemotherapy service for children funded by Candlelighters. 

Throughout 2024, we funded a brand new NHS role, the Candlelighters’ Chemotherapy Project Nurse Specialist. The role will be funded by Candlelighters for two years to enable evidence to be built of the benefits of chemotherapy at home. The aim is that it will be incorporated as a standard role, within Leeds Teaching Hospitals NHS Trust. 

Specialist nurse Neil Shaw explains: “This project was about demonstrating the benefits of an at-home chemotherapy service for child cancer patients. Whilst some children remain in hospital for much of their cancer treatment, there are many others who go home and come back to hospital on a regular basis. But this presents its own difficulties.”  

“For a lot of families in Yorkshire, the nearest treatment Centre is Leeds Children’s Hospital. This can mean long trips to and from Leeds, which are time-consuming and expensive. For those using public transport, it can be almost impossible. The long hospital journeys often result in missed school or work, and disruptions to their family life. These challenges have emotional, practical, and financial implications, intensifying an already very difficult time for the child and their family.” 

Emily Wragg, CEO of Candlelighters says: “Candlelighters recognised there could be a tremendous positive impact for children and their families by administering chemotherapy at home. Our introduction of an at-home service has quickly demonstrated numerous benefits to families.”  

Sara Akers is mum to Alfie, aged four and Poppy, two. Alfie was diagnosed with medulloblastoma, a type of brain cancer, in September 2023, as part of a routine eye test, when he was three years old.

Sara, based in Horbury, Wakefield, explains the benefits of the at-home chemotherapy service. “The impacts of a child cancer diagnosis are massive – the shock and worry are huge. But there are also additional unexpected difficulties, during treatment. In the first few months it put a big divide between us as a family unit, I was mainly with Alfie in hospital and Phil my husband was at home with Poppy. We spent a couple of weeks together at Christmas and then straight into chemotherapy. Phil is self employed, so when he took time off initially he didn’t get paid, which also put a strain on us.”  

She adds: “There haven’t been many pleasant surprises in Alfie’s cancer journey, but how he was going to receive chemo was one of them. Chemo at home meant that for us, Alfie only had to be physically in hospital for 20 planned days over the eight month period he was under treatment. This was an absolute game changer, because for the first part of our journey I was in hospital a lot with Alfie, which meant I barely saw my little girl and husband.” 

“The main benefits for us were minimising disruption caused by treatment. Luckily for Alfie, for the most part, he was able to continue living his life including going to nursery when he was well. During his cycle we were able to arrange a time that worked for us, which mostly was at the end of the nursery day. This meant I was able to have both children with me at home and do the usual tea and bed time routines.” 

“My husband Phil would often need to take time off to be in hospital with us or to look after our daughter, but he didn’t need to do this when we were at home, which was a huge benefit. It just made life that bit easier, which we so desperately needed. Most importantly we have been able to stay together as a family unit.” 

Sara is full of praise for specialist at-home chemotherapy nurse Neil Shaw. “Having the same warm friendly face was, without a doubt, one of the most important elements. Alfie built a trusted bond with Neil.”  

She says: “Neil cares, not just about Alfie but all of us. I looked forward to Neil’s visits as I desperately relied upon him when I was having my bad days. He knew Alfie’s case inside out, he was present in the oncology meetings and above all he knows his stuff. He was able to listen and support in a way he knew I needed. 

“I’d say this personalised service was probably the key benefit. As people, we like to feel respected, understood, seen and heard. Receiving life-saving treatment is no exception to that. Neil was able to do all that and more.” 

Emily Wragg of Candlelighters says: “This pioneering role is the first of its kind, and we’re hoping to inspire other teams across the country to adopt similar approaches. Already after one year, we’re seeing huge benefits for children and their families who are finding this service incredibly valuable.”  

Candlelighters receives no government funding. We are able to provide a huge range of support to children and their families through a childhood cancer diagnosis because of the people, communities and businesses that fundraise for or donate to us. 

In the years since Candlelighters was formed, survival rates for children with cancer have greatly improved. But so far, little has been done to improve the experience of living through and beyond cancer. The side effects of treatment can be traumatic, permanent, and even deadly, not to mention the practical and emotional tolls families face. A year ago we launched our pioneering supportive care research centre, looking at better ways to care for children with cancer.

So far the Centre has:

• Set up a Families and Young Person Board, an Advisory Board, and a Management Board to help set the priorities of the research, utilising the real-world experiences that families face and expert knowledge from professionals to map the future of the research.
• Won a bid from the University of York to run parental support courses.
• Opened a project looking at how to manage febrile neutropenia – (the increased risk of risk of serious infections that treatment for cancer produces) and begun developing a clinical trial bid.
• Created a job opportunity for a PhD student to be employed in the new academic year.
• Begun collaborating to supervise a PhD Fellow at the Leeds Dental Institute to improve access to treatment to prevent mucositis (the severe sore mouth, sore stomach and diarrhoea that can happen after cancer treatment).
• Been improving access to information from other studies that could help manage nausea and vomiting in children.
• Been invited to present to national and international audiences.
• Produced a dozen academic papers.
• Won four academic prizes.

This research is helping children and young people like Libbie, who was diagnosed with acute lymphoblastic leukaemia in January 2017, aged 13. After her initial treatment, Libbie later relapsed in September 2018 and required a bone marrow transplant. She spent a significant amount of time in hospital and suffered traumatic side effects from treatment.

Libbie says, “The treatment is amazing because it works the majority of the time for my kind of cancer and it’s got a big survival rate, but I think managing the side effects better needs to be a priority. The side effects were the reason why my mental health got so bad with the sickness and even the acne from the steroids. I think also being home, being in my own bed, having my family around me, and my friends coming to visit would have made things a lot better as well. I think getting young people home is especially important for sleep; during treatment, you need sleep, and hospital just isn’t the right place for sleep.

No one really appreciates how difficult it is to go through it – the sickness, the isolation, the side effects, everything together makes it horrible to go through. If it can be made even slightly better, one thing at a time, I think that’s the most important thing.”

In October, we were overjoyed when we were chosen as children’s charity of the year at the Yorkshire Children of Courage Awards! The awards began in 2011 to recognise the region’s bravest and most courageous children and young adults as well as the charities that support them.

For almost 50 years, Candlelighters has supported children and families across Yorkshire through childhood cancer. From the hospital wards, to at home support and financial aid, we have helped thousands of children and families through some of the worst times imaginable for a family. We have also invested in better futures for children with cancer with our dedication to funding vital research focused on children’s cancer.

Emma Sutcliffe from Ilkley nominated us for the award after receiving our support when her 17-year-old son was diagnosed with cardiac angiosarcoma, a rare and aggressive cancer that begins in the heart.

Emma shared the nomination she sent for Candlelighters…

“When you are suddenly and unexpectedly plunged into the realisation that your child is ill, seriously ill, you have no idea what to do. Then, gently but with reassurance, quietness, support, understanding and love you are wrapped up by the care, warmth and experience of Candlelighters staff and their service. It’s far more than a service, but I’m not sure how to explain it. What a blessing this charity is.

Candlelighters work tirelessly to give families like mine support, precious family experiences and moments when time is running out. Candlelighters family support centre, The Square, is the most wonderful environment on the doorstep of Leeds General Infirmary when the endless corridors and sterile rooms, noise and tension become frankly, all too much. The warmth of staff, the smiles, the giggles, the quiet rooms, therapy, and listening ears are perfectly balanced against helping with the reality of life at its worst.

The events they provide, the words of wisdom coupled with the efforts they go to, to make dreams come true for children, teens and families is simply incredible. It’s so hard to say just how much they have done for our family from the beginning and ongoingly. They helped me find an inner strength and determination in those early days and brought light to our darkest times.

I will be forever grateful and will continue to raise funds and awareness for the unique and wonderful service that they provide. I can’t think of a more deserving charity. It is time for them to shine for all that they do. It’s so special and so appreciated.”

A number of the children who are supported and involved with us were also recognised at the awards:

12-year-old Elliot Gunn from Halifax won the Fantastic Fundraiser award. Elliot created his own fundraising team in 2019 dedicated to raising money for Candlelighters. His team has raised almost £30,000 for families.

7-year-old Theo Hampson of Hull who was diagnosed with acute lymphoblastic leukaemia last year was awarded the Sporting Superstar in the Under 10 category.

11-year-old Lola Pinder from Leeds who was diagnosed with medulloblastoma was awarded Sporting Superstar in the 11 to 18 age group.

16-year-old Bethany Martin from York who was diagnosed with acute lymphoblastic leukaemia earlier this year was awarded the Beyond Bravery award for 13 to -18 year olds.

Emily Wragg, CEO of Candlelighters said, “We are so incredibly proud to receive this award. The courage that children and their families show when they’re going through the most unimaginable times is so humbling. We are honoured that children and families place their trust in us to help them through childhood cancer, and we are so incredibly thankful for our supporters giving their time and money to enable us to provide support to families. This award is a recognition of the dedicated staff, volunteers, and supporters of Candlelighters who enable us to be there to hold the hands of countless children and families affected by childhood cancer.”

Last week was Play in Healthcare Week! This is an awareness week showcasing the importance of providing play to children in hospitals. Our Outreach Play Specialists, Tracy and Rachel can continue this therapeutic play for children diagnosed with cancer within their own homes.

Tracy says, “I feel very privileged to work with children, young people and families within their own homes. Children are often more natural and feel more in control when in safe and familiar surroundings which enables a more relaxed approach.”

Meet Cayde

Tracy was introduced to Cayde when his family was given the sad news that his treatment was no longer working. Cayde had spent a lot of time in hospital with the play teams so it was a great opportunity through the outreach role for this play support to continue within Cayde’s own home.  Tracy spent time with Cayde at home and, through play, was able to make many memories with Cayde’s family and created precious mementos along the way.

Cayde’s mum, Susie says, “When Cayde went on to end-of-life care one of the first thoughts we had after the shock and tears was of all the things Cayde would miss out on. With the help from Cayde’s amazing play specialist Tracy and the Candlelighters end-of-life package and support, Cayde got to take part in so many fun and wonderful things. 

When Tracy first came round, she asked about Cayde’s interests and things he liked. From this Cayde got a holiday and trip to Gruffalo World with Grandma and Grandad which gave them chance to make lots of precious memories, and we got a seaside holiday with Cayde’s cousin which helped them make even more memories together. We had a visit from lots of animals including Cayde’s favourite – a bearded dragon and a snake. He took part in a music session and Tracy tried to arrange horse riding for him but unfortunately Cayde didn’t make it to this. 

We have so many precious keepsakes made with Tracy and Cayde’s cousins. She even made sure all the family got something including a lovely surprise for me. The weekly sessions with Cayde’s cousin were such a lovely time for them to make memories together. They were always creative and lots of fun.

I am so grateful for everything Tracy and Candlelighters did for us as a family and for Cayde himself. Cayde loved Tracy and her visits and she always made them fun and accessible to Cayde’s needs. I am so pleased Tracy got to come and do a session with him a few days before he passed. The memories of his smiles that day I will treasure forever.

We now have a Cayde wall with all his canvases on including his framed one.  There is a space for his casts which I can’t wait to see.  I wear Cayde’s fingerprints jewellery every day and I love that I have a piece of him to wear with me at all times.”

Tracy says, “It was an absolute privilege and pleasure to spend time with Cayde and his family, a truly happy and amazing little boy who just loved to play and explore. I always left Cayde’s home with a smile on my face, he was a true delight to be around. I am so grateful that I was given the opportunity to spend time with Cayde and his family, and create some precious momento’s that I hope bring comfort to his family.” 

These vital roles are entirely funded by your donations and fundraising. Thank you for helping to bring joy and comfort to children and families through outreach play. If you’d like to support these roles, you can make a donation here.

We’re delighted to announce we’ve been shortlisted for the Community Impact Award at this year’s Connect Yorkshire Awards. Plus, our CEO Emily has also been individually recognised in the Inspirational Leader category!

The Connect Yorkshire Business Awards take place annually and exist to recognise and celebrate the exceptional contribution made by businesses and non-profit organisations to the Yorkshire region.

Emily said, “I am so proud of the amazing team we have at Candlelighters and the work they do every day to support families experiencing what is often the most challenging period of their lives. For this to be acknowledged in the wider community is wonderful and we hope it helps raise awareness of the impact of childhood cancer, as well as encourage even more of the wonderful Yorkshire community to help us in providing support to those children and their families.”

Around 150 children in Yorkshire are diagnosed with cancer every year. We provide a range of services on the oncology wards at Leeds Children’s Hospital, as well as emotional and practical support services at our Family Support Centre, and our dedicated home–from-home accommodation, The Cottage, to accommodate families who have had to travel long distances to receive treatment. We also offer grants to families who are often financially disadvantaged by childhood cancer diagnosis and support vital research into childhood cancers, with global impacts.

Emily continues, “As experts in supporting children with cancer and their families, we are constantly aware of the devastating impact a childhood diagnosis of the disease can have. It’s really important to us to provide the comprehensive support that families living with a childhood diagnosis of cancer need and eventually improve the outcomes and lives of children with cancer by also investing in vital research. We’re grateful to Connect Yorkshire for recognising the wide-ranging impact of our work.”

The winners of this year’s Connect Yorkshire Awards will be announced at a prestigious black-tie dinner at the Royal Armouries in Leeds on 28 November 2024. Keep your fingers crossed for us!

As a charity, we’re proud to be trailblazers in pushing for and funding new and better ways to make lives better for children with cancer. We’re especially proud of the commitment we’ve given to funding play for children. For over 25 years, we’ve funded additional play team roles in the children’s oncology department at Leeds Children’s Hospital. This is the only department in the hospital that has had this extended play provision which enables a 7-day-a-week play service. 8 years ago we also began funding an innovative outreach play specialist role, enabling the provision of dedicated play support to children with cancer both on the hospital wards and as outpatients at home.

Play is vital for children with cancer – it helps them find ways to understand and cope with their diagnosis, prepare for procedures that can be painful and upsetting, and support mental health during long stays in hospital away from home, school, family, and friends. We’ve ensured that children in the oncology department of Leeds Children’s Hospital have had access to play from specialist play workers through our funding, to provide an enhanced and 7-day-a-week service.  In addition to our own Family Support Workers, this has given children in the oncology department at Leeds Children’s Hospital access to a higher level of support than is usually seen in other children’s wards across the country.

We are delighted that the NHS has now recognised nationally the need for 7-day-a-week play service for children in hospital. At Leeds Children’s Hospital we are so pleased that the hospital, with support from Leeds Hospital Charity, will fund additional roles to provide a 7-day-a-week play service for children in all wards at the hospital. We’ve seen how important this has been for children in the oncology wards so are delighted that children in other wards will now receive better play support.

With the introduction of increased play across the whole hospital, this means we will now work alongside Leeds Hospital Charity to provide the play provision for children with cancer in hospital. The hospital charity will provide funding for the roles and will continue to fund the materials used for play, as well as supporting the décor and environment. We will continue to fund the outreach play specialists for children with cancer, providing this vital at-home play. The outreach play specialists work outside of the hospital, taking play to children’s homes who require support at home. This can be from helping children prepare for going into hospital for procedures, to supporting a child and their siblings when they have been given a palliative diagnosis. These vital roles are not funded by the NHS and provide a huge benefit for children and their families and we are incredibly proud to be a leading role in providing this type of play provision.

We are delighted to have led the way in how children can be better supported in hospitals with play, to see this extending to benefit all children at the hospital makes us so proud.

For Childhood Cancer Awareness Month this year, we want to highlight the difficulties faced by children who receive their treatment as an outpatient and their families. Whilst some children have to be hospitalised for much of their treatment, there are others who are able to return home and come back into hospital regularly for treatment. But this is not without its own difficulties. 

Childhood cancer treatment is a huge burden for children and their families. On top of their fear and the often painful and debilitating side effects of treatment, several families must also travel great distances. For a lot of families in Yorkshire, the nearest treatment centre is Leeds Children’s Hospital. For many, this means long trips to and from the hospital, which is time-consuming and expensive, and for those using public transport it can be almost impossible.  

We recognise that there could be a tremendous positive impact for children and their families by administering chemotherapy at home. In December 2023, we began funding a brand new NHS role, the Candlelighters Chemotherapy Project Nurse Specialist. Neil Shaw took on this role to lead the initiative and develop an at-home chemotherapy service for eligible children. 

The introduction of this service offers numerous benefits to families. The long hospital journeys often result in missed school or work and disruptions to their family life. These challenges have emotional, practical, and financial implications, intensifying a difficult time for the child and their family. 

We spoke to mum, Vikki, and her daughter, Nina, from Holmfirth, West Yorkshire, who have experienced the positive benefits of this role. 

Nina was diagnosed with a rare brain tumour when she was just one year old. Although she had surgery to remove the tumour two weeks later, because of its position, the team were unable to remove all of it and a follow up scan confirmed further growth of the tumour. Nina began chemotherapy with further surgery eight months later to reroute the blood supply to her brain after a scan showed concerning pressure on a major artery. 

Vikki said, “The impact of the diagnosis is hard to put into words. It’s a bit like a grenade being thrown into your family life and everything changes, whilst you try to continue as best you can. It isn’t possible to continue with life as it was before the diagnosis and chemo – but we’re thankful for every minute of time we have as a family. 

Because her chemotherapy initially could only be administered at Leeds Childrens Hospital, we had to travel, through rush hour a lot of the time, which would take upwards of an hour on a good run, normally missing school or work to do so.” 

Nina became eligible to take part in an early trial of chemotherapy at home and was treated by Neil. Vikki said, “It made life a lot easier and the treatment a lot less traumatic. It transformed very tricky days into just a small amount of time: Nina still has some difficult memories of being in the hospital, so being able to be in her own home, in a space she felt comfortable, was an incredible improvement for us all. She could even pick out her own plasters afterwards. Although this sounds so small, it made such a difference to how she was able to cope during the process away from a clinical environment.” 

Vikki’s elder daughter, Ismay, also benefitted from the outreach chemotherapy treatment. Her parents could take her to school as normal whereas, before, her day-to-day life was disrupted. She could also get to know Neil, be there for Nina’s treatment and understand what was happening, which previously hadn’t been possible at Leeds Children’s Hospital. 

Neil says, “Parents have been able to spend more time either with their child, or going to work, and they haven’t had to travel long distances each way, paying for parking, food, petrol, or accommodation, which has positive financial implications. We aim to be flexible with the treatment and, if possible, administer the chemotherapy before or after a child’s school day, so they can go to school as normal and not miss any of their education.”

This pioneering role is the first of its kind, and we’re hoping to inspire other teams across the country to adopt similar approaches. 

Join us this Childhood Cancer Awareness Month to make lives better for children with cancer. You can make a donation here.

Children’s cancer charity Candlelighters hosted a weekend of fun and respite at Lineham Farm for 34 children whose siblings face a cancer diagnosis.

Around 150 children in Yorkshire are diagnosed with cancer every year. A childhood cancer diagnosis devastates the entire family. It can be especially difficult for siblings to process the emotional difficulty that a cancer diagnosis causes, as well as being apart from their brother or sister and parents, as they need to focus on a sick child in hospital.

Children’s cancer charity Candlelighters recognises this impact on siblings. They provide therapy-based sibling groups throughout the year and host an annual sibling residential trip, to help children escape the harsh realities of childhood cancer and enjoy a weekend of fun.

This year’s sibling residential took place at Lineham Farm near Leeds. The weekend included fun activities for the children, including archery, low ropes, bushcraft, and exploring the grounds. They met the animals including guinea pigs and fed sheep as well as playing lots of games with friends made at the Candlelighters groups.

Natalie Kisby, Head of Family Support at Candlelighters told us “It’s important that siblings can enjoy the company of other children with a shared understanding of the difficulties of childhood cancer. The Candlelighters sibling residentials offer the opportunity for children to make wonderful new memories whilst making friends and finding companionship in each other.”

Two of the attendees this year were brothers William and Sonny Welsh from Skipton. Sadly, their brother Rory died in 2016 at just 18 months old, after he was diagnosed with leukaemia. Their mum Laura told us that Candlelighters have supported their family since Rory was diagnosed and following his death.

The family attend bereavement support groups for parents, siblings and grandparents. Rory’s brother, William, who was three years old when his younger sibling died, attends the Candlelighters Bereaved Sibling group, which has provided him with friendships that have shared his experience of childhood cancer.

Laura told us “As William has grown up and got a better understanding of what happened to Rory, he has had questions and anxieties, which the Candlelighters team have been able to help him with through these groups. We have since had another son, Sonny, and from the age of five, he has also been able to attend the Bereaved Sibling group.  This has helped him understand what happened to our family before he was born.”

William and Sonny both attended the recent Candlelighters Super Sibling residential trip. “This is the highlight of the year for William, and Sonny was very excited to be able to join him this time. The residential trip is for all siblings of children with cancer, whether they are going through treatment, have completed treatment, or are bereaved.  Understandably, when you are in a family with a poorly child, they tend to take up a lot of time and attention, even after they have completed treatment.  When you suffer a bereavement, the lost child continues to be a major part of the family and the sadness and grief caused by their loss affects your home life forever. The sibling trip allows the children to get away from that, and have a fun-filled weekend where they are the focus.”

We’re delighted that two of our fundraising groups will be hosting fabulous fundraising balls this August.

Ilkley Candlelighters and Knaresborough Candlelighters would like to invite you to their summer balls to help raise vital funds for children and young people with cancer. Find out the details below…

Ilkley Candlelighters

Dance the night away and raise money for children with cancer.

We’re delighted to announce that the Ilkley Candlelighters fundraising group are hosting their fabulous Summer Ball this August. Book your space for a night to remember! The band is booked, and a delicious three-course meal awaits you and your family and friends.

When: Saturday 31 August 6:30pm – 12:30am

Where: Ilkley Golf Club practice ground, Nesfield Road, Ilkley

Dress code: Black Tie

Tickets: £150 per person

Places to this spectacular event will go quickly so make sure you get your tickets booked asap! Email Alison at [email protected] to book your place.

Tables seat up to 10 so spread the word and gather your friends and family to eat, dance and be merry, all for a great cause!

Knaresborough Candlelighters

The wonderful Knaresborough Candlelighters fundraising group is back with a brand-new event!

They’d love to invite you to join their Ladies Lunch event on 17 August, at Knaresborough Golf Club.

You’ll be treated to bubbly on arrival, a delicious three-course meal, music, games and lots of laughter!

Tickets are £35 each. Contact Julie on 07980882127 for yours!

Both are sure to be brilliant events as always, hosted by the hard-working committees of Ilkley and Knaresborough Candlelighters. We hope you’ll support them in these fantastic events!

Candlelighters have been trialling opening our family support centre, The Square, on Saturdays to increase access to our support for our families. On Saturdays at The Square, Lucy Peel and Jess Burton, two of our Family Support Workers have provided wonderful crafts, fun activities, and food offerings. Our Sarnies and Smoothies on a Saturday have gone down a treat! They have also ensured that spaces in The Square can be used to their full capacity such as the homework corner and the reading nook.

Our Family Support Manager, Lucy Junni, conducted research with families that showed the importance of sibling support during childhood cancer treatment. Opening The Square on Saturdays provides families more opportunities to spend time together while enjoying engaging activities like crafting or catching up on homework. The Square is a wonderful space that offers families a break from the clinical hospital setting.

Families have appreciated having access to The Square during the weekend and have given us some wonderful feedback.

‘I’m so grateful to be able to step away from the hospital to have this personal time to support my other child.’ – a mum visiting to complete some fun crafts with her child.

‘It’s amazing that I can come from the ward, have a drink and time for myself before taking some lunch back to the ward with me to have with my son.’ – a parent taking advantage of our Sarnies and Smoothies on a Saturday.

‘Having the space has allowed me to step away with my daughter and do something fun and nice where we are not next to her sister’s hospital bed.’ – another mum completing crafts with her daughter.

‘We’re not from Leeds and have had a hard journey for the last eight weeks. This is our first time at The Square and it was the first time me and my wife walked together, holding hands, and having a laugh since we came her, all thanks to you and this space.’ – dad of a patient on the ward enjoying The Square’s wonderful setting and atmosphere.

We are so pleased to be able to extend the accessibility of our resources and provide parents, siblings, patients and other family members with a comfortable and welcoming environment. If you’re a family supported by Candlelighters, please feel free to pop by to say hello, participate in the activities, or just enjoy a sit-down with a brew!