Rooftop adventures

Sweet sixteen

Eliot* had an advanced cancer affecting most parts of his body, including his brain. He was a pragmatic young man who understood what was to come, and had already made plans for his remaining days, including what bucket list items he realistically could achieve, and what he wanted to leave behind for his loved ones to tick off on his behalf. He was also just shy of his 16th birthday, and was determined to have one last celebration with his friends.

We wanted Eliot to dream big, telling him that we as a team love a challenge. Eliot decided that he wanted a rooftop party at sunset with his family, friends and teachers. Though this was a simple request at the surface, the logistical planning that went into this was pretty extensive.

Photo by Ashe Walker on Unsplash

The first thing we needed to do was to obtain approval to use the hospital’s outdoor ‘green space’ out of hours, so that we could hold this party on site in case Eliot needed to return urgently to the ward. This was perhaps the easiest step to coordinate, as the hospital were more than happy to honour this request.

Due to the way the cancer affected his brain, Eliot needed a cocktail of specialist mediation to control his seizures. He was also at risk of what we call a ‘catastrophic bleed’ which would again require immediate specialist medication and support. As such, we made sure to organize special nursing escort for this party so that trained nurses could be present. This required formal written requests and official approval of additional funding in advance - not that any of the ward team would have missed the opportunity to escort sweet Eliot.

We then had to arrange for security support in case a rapid evacuation of guests was required due to a medical emergency - not a scenario we hoped would happen but something we had to prepare extensively for, given the risks due to his burden of disease.

Photo by Keagan Henman on Unsplash

Eliot already had a specialized wheelchair that was able to fit into the lift, but he wished to sit out in a ‘normal chair’ that didn’t take as much space so that people could sit closer to him without leaning across the large cushioned armrests of his wheelchair. This needed some creativity and work, and the team were able to put together a recliner of sorts that he could both be comfortable in, and still be wheeled around in without being in his usual wheelchair. We arranged for hoist equipment to be on standby on the rooftop in case he needed to be in his wheelchair for comfort during the party.

The team reached out to charities that offered special catering support at short notice. Eliot wished to invite some of the other young people he knew from his cancer support group, most of whom had special dietary requirements, and all this was thoughtfully and carefullly organized to make sure everyone’s needs were catered for.

Decor required careful planning as well. Bright fairy lights, as well as regular nighttime building lighting were all unsuitable due to Eliot’s high pre-disposition to seizures. A canopy was set up using the trees and different shades were projected onto screens instead, cascading a beautiful mountainous view amidst the sunset in the background.

Last but certainly not the least, the team were able to source musicians and a good portable sound system so that everyone could enjoy the playlist that Eliot had put together for his final party. A local live band performed pro bono and even accommodated song requests from Eliot and his fellow party-goers that evening.

Photo by Ingridi Alves Photograph on Unsplash

Alas, the party was a success. Sweet Elliot was able to celebrate his final birthday surrounded by his family, friends and teachers. We marveled (and teared) at the photos taken with the beautiful backdrop and sunset, and laughed at videos of his friends competing against their teachers in different games. Sweet sixteen took on a different meaning for all of us during that season of planning.

Elliot died a lifetime too early, but the memory of this beautiful rooftop party will live on for a long time. What an honour it was to be able to plan this alongside him and his family. I am so proud to work in a specialty that doesn’t say no to a challenge - there is not much a palliative care team cannot achieve, when we put our minds to it.

What do you remember of your sweet sixteen - how different was it compared to this?

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This piece is from my secondment into paediatric palliative care, where I continue to marvel at the beauty and satisfaction of working in a specialty that brings so much meaning.

*Names and details have been changed to protect patient confidentiality