Childhood cancer is a topic that few of us can comfortably discuss, but for families with a diagnosis, the isolation takes on a whole new meaning. Children may stand a significantly greater chance of recovery, but alleviating the emotional and financial repercussions of treatment, with little to no external support, is a burden itself.
Candlelighters is given legal base by people who really know what it’s like to have lived through it, from parents of diagnosed children and even a former patient themselves. Head of Income Development, Marie Peacock, met with us last week to discuss the diversity of support at The Squaw (a support centre away from the hospital). Staff deserve to be proud of their local efforts. Against national childhood cancer organizations, which raise £200 million per year, Candelighters survives on £1.6 million, and by public donations at that – which makes it even more impressive the money Leeds has helped raise to fund the building of the cottage, which currently stands at half a million pounds.
Marie highlights: ‘”We’re a small charity trying to have a loud voice, and trying to appeal to lots of different people in different ways”. Valuing the children’s creative needs, the team are “making the experience as good as it can be”. The children will experience play leaders, murals and craft activities to help make the wards a happier place, whilst the pavilion building on the ward (opened in 2013) is close enough for medical treatment but still colourful and packed with children’s games.
The clinical feel of hospital, counterproductive to the children’s wellbeing, is now less so. Lacking a personal life during the child’s treatment, parents undergo massages, mindful exercises and even a long-overdue haircuts at the Square, whilst one-on-one therapy for siblings tries to reduce their exclusion and give them a sense of normality. For both, lifelong support groups are in place. Marie considers the children she meets as honest and capable in their illnesses.
“You can’t solve the world” she offers, in response to how staff and parents cope, but reminds us of the worth in “making a difference every day”. If the child passes away, they honour solidarity from parents experiencing the same loss and organise social activities on their behalf. Candlelighters may be nestled here but they are far reaching. A bus takes the wellbeing service to families across the county, whereas numerous summer events will restore a sense of fun for children amidst the experience. Fundraising, she adds, should have the same agenda.
Full emotional support is accessible to those near the city, but problematic for commuting families. A child with cancer costs an extra £600 per month to look after, but if one or both parents stop working, sibling childcare, travel and hotel fees mount pretty fast. The current accommodation service, unavoidably separating families, prevents reassurance for children who need it most. In 2017, the purchase of a derelict cottage on site was the beginning of the emotional sanctuary requested by families, due for completion this September. Four en-suite bedrooms will give much needed privacy, whereas a shared kitchen, living room and garden will introduce families and change the hospital stay for the better, with empathy and real friendships taking its place.
Our typical day, of homemade meals, putting children to bed and sleeping restoratively, is a great motivation, too. Families will experience this normality again. The best thing about the cottage? Families won’t have to pay.
From the cottage designer, whose own child is undergoing treatment, and the project manager, who is working voluntarily and saving the charity £20,000 (his son is a survivor, who is now eighteen and healthy), businesses in Leeds have also helped out. Howden’s Joinery and Curtis Furniture are installing the kitchen and bedrooms free of charge and all the way from Scotland, Donna Wilson have donated quality cushions adorned with woodland animals. A colourful homewares wish list is now live, covering things as simple as lamps to a nursing chair for mothers with a baby.
£638,000 was required for the cottage purchase and refurbishment, but with generosity from the likes of the Kentown Wizard Foundation, donating £250,000 match funding donations.
Candlelighters are calling out on local businesses and communities to help raise the last £108,000. This ‘Just One Day’ on May 18th, look out for a pink First Direct Arena and Town Hall, and check out the bars in Leeds who are serving pink cocktails. If you have influence as business owner, school teacher or colleague, take this day (or any May day, as the charity suggests) as a break from work.
Hospitality members are warming up for the second ‘Industry Boxing’ event on the 15th, whilst Kirkstall Abbey’s gardening and fairy trail on the 19th will donate10% of ticket sales to Candlelighters- so even if you prefer a green weekend, you can still boost the city’s cottage. This is the first time Candlelighters have had a real chance to shine as a charity of Leeds, thanks to the help from the Lord Mayor and the Lord Mayor’s Charity Committee.