Sixteen-year-old Daniel, “Dano” to his friends and family, loves adventure. And, like his big circle of friends, he enjoys climbing, hunting elk, winning at board games, socializing at school, and going to summer camp. Unlike his friends, Daniel has a rare bone marrow disease, and sometimes his health keeps him from doing the things he and his friends enjoy. Daniel has a powerful imagination; he also has a tremendous capacity for resilience and bravery.
Because caring for children with serious illnesses is complex, Daniel is receiving treatment at Seattle Children’s Hospital as well as Hospice of the Northwest. Specialists at Children’s partner with the medical staff at hospice in order to deliver concurrent care to Daniel and his family. Daniel’s mom, Sally, appreciates how his hospice care team provides local expertise and brings care to their home, eliminating the need to leave work for trips to and from Seattle.
Daniel’s treatments can wipe him out and keep him at home. He doesn’t mind the time at home too much, especially when his Hospice of the Northwest massage therapists, music practitioner, spiritual counselor, and his volunteer (and friend) named Rusty come to spend time with him. His hospice team helps him focus on what he likes to do. They help him be a kid.
“I really appreciate all the people who have been able to be here with Daniel, whether it be music therapy, art therapy, or Rusty coming in to play board games with him. It has meant a lot to us to have people actually be able to come into our home and be with Daniel, to get his mind off of our monotonous medical schedule. It’s a nice little getaway,” said Sally, Daniel’s mom.
Hospice of the Northwest music practitioner Dia worked with Daniel for more than two months to create his very own Quest Song. Thanks to donors who support the use of Integrative Therapies for patient care, experts like Dia can spend time with Daniel to create a unique experience. By using song writing, guided imagery, singing, and music therapy relaxation techniques, an experiential journey through story and sound evolved. Along with Dia’s harp, Daniel plays a turtle whistle and his mom beats a traditional hand drum in the Quest Song. The special turtle whistle came from his Hospice of the Northwest volunteer, Rusty (to view a video performance, click on Quest Song.)
Daniel is proud of his Quest Song, and he likes that it tells a story about adventure, friendship, and courage.
Daniel and his family are members of the Swinomish Indian Tribal Community, a very rich Coast Salish culture with strong and supportive members. For Daniel, it is important to be a part of his community’s celebrations, gatherings, and to honor his sacred heritage.
Daniel and his hospice care team work together to help him be comfortable, maintain quality of life, and to set and achieve goals, like enjoying the summer outdoors with his friend and constant companion, Queen Charlie.