In 2013, Lumina served nearly 2,000 people, including the patient’s support system of family and friends. This program is offered free of charge to BJC Hospice patients thanks to generous donor support.
In 2010, at just 29 years old, Jorie Rogers began a valiant battle with a rare and deadly form of cancer, known as paraganglioma, that causes tumors to develop in various parts of the body. After chemotherapy and radiation treatments, Jorie thought she wouldn’t be able to have children. So she was surprised and overjoyed to discover she was pregnant in 2011. Yet she faced an agonizing choice: should she continue cancer treatments that could save her life or stop treatment and give her baby the best chance possible?
For Jorie, the baby came first. In March 2012, her son, Tristan, was born. But Jorie’s health was rapidly declining.
By early 2013, doctors suggested BJC Hospice for Jorie’s final few months of life. Through holistic care and special programs, hospice provides a circle of support for people fighting a life-limiting illness. Hospice helps patients and their loved ones celebrate life, be comfortable, and enjoy whatever time remains.
Through BJC Hospice, Jorie was introduced to Lumina, an awardwinning program that offers patients the opportunity to preserve the stories, values, ideals and experiences that define their lives. It’s a key part of care for hospice patients of all ages.
Above are illustrations from the book the Lumina volunteers helped Jorie create for her son as a lasting gift after she was gone.
“Jorie considered the Lumina program a last opportunity to share recollections and express feelings of love and appreciation for life’s blessings.” says Jorie’s mother, Annie Muñoz. “The Lumina program provided life-affirming, everlasting documentation of Jorie that we wouldn’t have had otherwise.”
One of several BJC Hospice programs, Lumina encourages patients to preserve stories of their lives through books, letters or videos to create a lasting memory for future generations and loved ones. “Through the process of sharing stories with volunteers, patients like Jorie can feel a sense of completion, a realization of what they have accomplished, and how they have mattered,” says Eileen Spinner, Lumina coordinator. “Lumina has tremendous healing power.”
Lumina is supported in part by gifts to The Foundation for Barnes- Jewish Hospital from individuals and through the Harvey Kornblum Foundation. Lumina volunteers are specially trained to understand the impact of death and dying as they work with more than 150 patients and families each year.
“Our group of nearly 50 Lumina volunteers is devoted to thoughtfully listening to patients and families reminisce and helping create specialized legacy items for them,” Eileen says.
For Jorie and her family, Lumina was a lifeline. “Creating keepsakes for those she was leaving behind gave Jorie a purpose,” Annie says. “Jorie felt fortunate to have spent the last few weeks of her life under hospice care, finding ways to say goodbye to family and friends, and creating a legacy of love for her son, Tristan, through Lumina.”
With the help of Lumina staff and volunteers, Jorie recorded a CD of spiritual songs that could be played to her son at bedtime. She also conceived an ABC book of her wishes and dreams for Tristan. The book was illustrated by a talented volunteer Lumina artist.
In addition, Jorie made birthday cards, full of advice and comments, to be given to Tristan each year until he turns 21. “Every year he’ll know that there is a small piece of me that is there with him to wish him a happy birthday and to know that I wished I could be there with him,” Jorie said before she passed away. “He’ll have these mementos to teach him who I was and to know how much I loved him. It will be my story for him.”
The Lumina program also helped Jorie share her love with other family members through final letters to all her loved ones, a scrapbook of memories for her mother, and a memory box for her father. Jorie said she felt these mementos were a way to “find closure and say goodbye to my family members and friends, to make my peace, and to make the best of the days I have left.”
From the day Jorie began hospice care, all she wanted was to live long enough to see Tristan’s first birthday in March. The terminally ill mom got her wish and then fought on for another six weeks before finally saying goodbye to her “miracle” baby on Mother’s Day 2013.
Annie knows that the legacy items Jorie created through Lumina have helped dissipate a huge cloud of grief after losing her daughter. “Looking back now, a year later, I am so grateful that Jorie and our family had Lumina to help us work through our feelings. I don’t have Jorie, but I feel truly blessed to be able to keep her alive in my heart with the Lumina ‘treasures’ she created.”
Annie continues: “Mother’s Day this year was a bittersweet day for me since it was the first anniversary of Jorie’s death. Luckily, I could reread the goodbye letter she left for me from the Lumina program. Her words allowed me to focus on deeper healing and coping with my loss. It helped me reflect on all the things I now appreciate more about life because of Jorie’s amazing journey.”
Please support the Lumina Program Fund at the Foundation to help more hospice patients and their families. Make a gift online or call 314-286-0600.
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