Carrying Loss; A tribute to Amanda Raffenaud

Some of you may already be aware that another beautiful soul was stolen by Stage IV Metastatic Breast Cancer (MBC) recently who I knew rather well. Amanda Waddell Raffenaud took her last breaths in the afternoon of April 3, 2023 and our last text exchange was March 26th — she liked a few messages I sent her after that but wasn’t able to respond. She’d lived with MBC since 2018 and her experience wasn’t easy. I attended her Celebration of Life recently and was simply blown away by all the love expressed there; her fingerprints were all over the experience.

Amanda and members of her family carry the same genetic mutation that I do (ATM) and you’d like to think that would mean our experiences would be similar, but it wasn’t. While I sat down to write today to honor my dear friend, let me say a few things about what it is like to be alive when someone like Amanda is dead.

There is no reliable way (yet) to anticipate how a disease like MBC will affect an individual person. While there may be specific facts to point to (e.g., a specific mutation that a medication can target) or undergoing more aggressive treatments or being diagnosed at different ages; at the end of the day, there is no good explanation for why one person survives for years and others die more quickly. Carrying the loss of all the people I’ve gotten to know and watched decline and die is no easy thing. There’s also no manual for how to do this, how to carry this much loss, how to continue living and advocating and agitating (as necessary), how to not just collapse under the weight.

I’m approaching the sixth anniversary of my MBC diagnosis and I vividly remember meeting Amanda for the first time in 2019, a few months after her de novo MBC diagnosis in late 2018. I was about two (2) years into my experience with MBC and she had just started. Now she is gone and I’m still here. There’s no good reason or explanation for this — we each made the best decisions we could with the information available to us; our bodies just didn’t respond the same way.

Since I met Amanda, she graciously agreed to participate in several webinars that I moderated with SurvivingBreastCancer.org and I’ve included the links to our discussions on Anticipatory Grief and Handling Progression below. Her wise counsel was so spot on as she wrestled with these issues in real time. So grateful she was willing to share so openly and honestly, of her true self and her own deep work from the traumas in her own life before the MBC diagnosis.

Those who are suffering who extend a hand to others in the midst of their experiences are truly special people. Amanda was one of those once in a lifetime people. Despite all that she had experienced and all that she was going through, she reached out over and over to so many people. When asked to show up, she did. Sitting at the Celebration of Life, I saw so many people grieving for the beautiful soul who’d been so significant to each of them. As one of the speakers said, Amanda was a lot of people’s best friend.

In addition to all of the work and writing Amanda did as part of her career, she also joined me as a writer/contributor for the Social Health Network, where we wrote a series on mentorship together, and she also write a guest post on this platform, all about parenting with MBC.

During the time Amanda lived with MBC, she experienced progression after progression. She knew this trauma. She knew this struggle, deeply and intimately. And yet, to be in Amanda’s presence, even when she was struggling, was to see how she worked towards hope. It wasn’t easy, it wasn’t pretty, it wasn’t a road that she chose. What Amanda did for herself, and for others was to look towards and point to He who gives us all hope. As her family shared below: “The life pulsing through her was undeniable and contagious; unarguable evidence that Jesus brings beauty from ashes. She kept her “eyes up,” believing that God was still writing the most beautiful story – and she is still teaching us to do the same.”

Amanda’s family shared these words:

Amanda Diane Raffenaud, 42, of Casselberry, FL passed away Monday, April 3, 2023. She was born September 17, 1980, in Winter Park, Florida, the daughter of Jerry Wayne Waddell and Diane Hutcheson Chavis.

She married James Raffenaud in 2000 and was widowed in 2016. They have two beautiful, brave boys – James Caspian (22) and Luke Pierre (17). Of all the roles Amanda played, she most cherished her role as mom to Jimmy and Luke. They were the loves of her life.

Amanda grew up in Central Florida, graduating from the Master’s Academy (1999) and from the University of Central Florida (2004) with a Bachelor’s degree in Health Services Administration. She continued on at UCF and subsequently earned her Master’s degree in Health Services Administration (2006) and her Doctorate in Public Affairs (2018).

Through teaching, research, administration, and service, Amanda served in multiple roles in the higher education community at both UCF (2004-2016) and AdventHealth University (2016-2023). She also taught at Rollins College, Valencia Community College, and Brown University. In the midst of teaching, Amanda published in peer-reviewed journals, contributed to many healthcare administration textbooks, and delivered countless podium and poster presentations, all in the name of advancing the field with meaningful research findings. In April 2016 she was awarded the Excellence in Undergraduate Teaching Award at UCF. Most recently, she was promoted to the rank of Associate Professor at AHU in 2021.

Throughout her educational and professional pursuits, Amanda’s greatest joy was rooted in her deep passion for educating and supporting students in their personal growth and professional development. She prioritized the well-being of her students, recognizing that their mental, emotional, and spiritual health were critical to their success. Amanda saw service as an essential part of her ministry and work, embracing her role not just to teach but to inspire and guide students to become compassionate and engaged members of their communities. Her dedication to these values made Amanda a truly exceptional educator and mentor.

As impressive as Amanda’s educational and career accomplishments are, they are dwarfed by the beautiful, miraculous ocean of love she built around her boys. Her nurturing care and attentive support for Jimmy and Luke never waned, even in the face of overwhelming and unthinkable challenges. To know Amanda and her boys, and to see how she cared for them, was to witness the purest, fiercest, warmest, truest love that has ever been and ever will be.

Amanda somehow also had an incredible surplus of love and care that she shared generously with her expansive community of family and friends. To know Amanda was to be loved by Amanda – and to be loved by Amanda was to know a deep, abiding love. Amanda’s community reciprocated by showering her and her family with love a thousand times over in a million different ways, both material and intangible. Every single meal delivered, text message sent, ride offered, hand held, card written, and moment shared is a testament to how important Amanda was to her people, and how important her people were to her.

After her cancer diagnosis in December of 2018, Amanda made it her mission to live even more fully – to chase life and joy, especially alongside her boys. The life pulsing through her was undeniable and contagious; unarguable evidence that Jesus brings beauty from ashes. She kept her “eyes up,” believing that God was still writing the most beautiful story – and she is still teaching us to do the same.

In addition to her boys and parents she is survived by her sister Katie Sanders (Travis) and nephew Henry; her sister Jessica Waddell Tabor (Luke); her sister-in-law Danielle Hudson and her children, Averie, Zachary, Faith, and Grace; her in-laws, Patsy Grannan (Mike) and Pierre Raffenaud (Marcella); along with many beloved aunts, uncles, and cousins.

She is preceded in death by her paternal grandparents, Wayne and Octavia Waddell, her maternal grandparents; Everett and Ellen Hutcheson; her uncle, Charlie White; her aunt and uncle, Nancy and Tom Burgiss; her step-mother, Sheryl Waddell; and her most loyal pup, Leo.

In lieu of flowers, please consider donating to the causes close to Amanda’s heart:


METAvivor
Joining the chorus of the metastatic breast cancer (MBC) community – Amanda always said, “Stage 4 Needs More” – teaching us that only 5-10% of research dollars go to stage 4 breast cancer research. METAvivor, a volunteer-led, non-profit organization, exists to sustain hope for those living with stage 4 metastatic breast cancer, funding vital research to help improve the longevity and quality of life for MBC patients. Please visit https://bit.ly/donatemetavivor and select, in the pink box, “In memory of.” If you would like the family to be made aware of the gift, please include RememberingAmanda2023@gmail.com for the recipient’s email.

AdventHealth University
The Amanda Raffenaud Memorial Scholarship will provide an opportunity for AHU students to continue their studies despite hardships and challenges they face. The scholarship continues to demonstrate Amanda’s legacy of selfless giving and commitment to guiding and inspiring students to achieve their professional goals. Please visit https://bit.ly/donateAHU. 

Amanda knew how hard it would be for her dear friends to describe her to all of us. In true Amanda fashion, she provided her own words to be read at her Celebration of Life, demonstrating for all of us how she saw not just her own death, but also how she would live on. I have no better words.