“Candlelighters have been there from day one. Over the years we’ve had many special memories, made possible by Candlelighters”

Elsa was first diagnosed with Rhabdomyosarcoma (RMS) in 2016, a rare type of soft tissue sarcoma when she was just two years old. Elsa and her family, including Mum Hayley, Dad John, Sister Amelia and older Brother Kai, have all been a part of Elsa’s cancer journey. After responding relatively well to her first round of treatment, Elsa quickly became a character on the ward, known for her sassiness and for always making people smile.

At the age of five, Elsa’s family were told that her cancer had returned, and more recently, in early 2020, the family got the devastating news that Elsa’s cancer had developed rapidly and the diagnosis was now terminal. Because Hayley and her family had been living most of Elsa’s life on the wards at Leeds Children’s Hospital, they decided to bring Elsa home to care for her there. Although Hayley and John knew that one day Elsa would pass away, it was always going to be an incredibly hard time for all of them as a family.

Despite everything that Elsa had been through, she still managed to keep her ‘sassy-self in check!’ Sadly, however, in April 2020 when COVID-19 was at its worst, Elsa passed away. For all families facing such devastating news during this period, it was made extra challenging with Government restrictions resulting in the usual support networks being limited, school closures adding additional pressures on the family unit and the challenges caused as a result of funeral restrictions. Hayley and her family didn’t know where to turn.

Tracy, the Outreach Play Specialist at Leeds Children’s Hospital, a role which is funded by Candlelighters, was introduced to Hayley and her family at the time of Elsa’s relapse. Tracy’s role plays an incredible part in a family’s cancer care, working with patients, siblings, parents and close family to provide additional play support within their own home. This might be to help work through anxieties around a procedure or diagnosis or difficulties in adjusting to life at the end of treatment. Tracy comments, “I am so lucky and privileged to be welcomed into the family’s homes at such a difficult time and to be a part of their journey is a real honour.”

Tracy was able to provide support for Hayley and her family in a number of special ways, pre and post bereavement. An example of this support is the memory-making that Tracy was able to work on with the family. Tracy would deliver craft sessions for both Elsa and her Sister, Amelia, creating special items for them both to remember together. Tracy also created memory jewellery with Mum, Hayley, using Elsa’s fingerprints, jewellery which the family can keep forever as a loving memory of Elsa.

For Amelia, seeing Elsa so poorly was extremely difficult emotionally so Tracy began visiting her at her school. Taking this time away from home gave Amelia the chance to talk to Tracy in a comfortable environment, where they had the space to discuss how Amelia was feeling. They talked about what might happen to Elsa when she passed away and how that might make her feel. Hayley said, “Tracy was such an incredible support for Amelia, it’s been so hard to know how to talk to our daughter about Elsa, especially at this time when there’s not been any distractions, it’s been full-on for us all.”

Tracy also used play therapy activities with Amelia, helping her to deal with any fears and anxieties she might have knowing that her sister was so poorly. Hayley added, “Tracy made me feel a lot happier, she knew exactly what to say to all of us. She was a huge help in chatting to us as parents about how we can continue to talk to Amelia about Elsa’s death. Tracy explains things in a way that’s so honest and clear, but completely appropriate for children. Amelia really looks forward to seeing Tracy.”

Hayley and her family hugely appreciate the support Candlelighters have offered over the past four years and said, “Candlelighters have been there from day one. Over the years we’ve had many special memories, made possible by Candlelighters. We’ve been to Centre Parcs, Primrose Valley, Amelia has been to Flamingo Land, plus lots more. The difference that Candlelighters have made on those wards is just so nice to have at such an awful time. It makes such a difference to have a friendly face on the ward, to make you a cup of coffee or someone you can chat to.”

But even now as we strive to build a new normal and ease out of lockdown, for families facing childhood cancer, whose lives have already been turned upside down, the emotional and financial lockdown will continue. For these families, Candlelighters will continue to bring light to children and their families in the darkest of times. When the time is right, Amelia is hoping to attend the Bereaved Sibling Group at Candlelighters and older brother Kai has recently started Talking Therapy through Candlelighters. Tracy will continue to see Hayley, John, Kai and Amelia for as long as they need her.

Hayley and her family feel comforted knowing that Candlelighters will continue to be there for their family, and many other families during this challenging period and long into the future.

“Tracy was there for us all, she supported the whole family in a way that worked for everyone. She’s made life a lot easier for all of us”