A tribute to Pat Killingsworth – Amelia Island patient advocate and author

Submitted by Susan Hardee Steger
February 13, 2016 10:19 a.m.

Editor’s Note: Amelia Island resident Pat Killingsworth, noted blogger and patient advocate for multiplemyeloma passed away on February 11, his 60th birthday. I learned of  the impact of Pat’s work when a friend from New Mexico who suffers from myeloma and her husband visited me. A portion of their visit included coffee with Pat, someone they got to know through Pat’s blog multiplemyelomablog.com.

Later I met Pat and his wife Pattie at a library event. I knew we had an amazing couple in our community; such happy people in our midst! Pat touched those with and without myeloma.  I became an avid reader of his blog which always ended, “Feel good and keep smiling.” Our condolences to Pat’s wife Pattie and his family.  We share with you samples of tributes to Pat for his work in the myeloma community.

The  International Myeloma Foundation

“The team at the IMF remembers Pat Killingsworth as being a powerful and passionate patient advocate. Missy Klepetar, one of the IMF’s InfoLine coordinators noted that Pat had such a strong voice in the myeloma community – one that people respected. Paul Hewitt, IMF InfoLine coordinator also noted that Pat was a continuous source of information for patients and caregivers – a true “Beacon” of light for the entire myeloma community.”

And from the Myeloma Crowd Foundation
By Jenny Myers Ahlstrom

“Yesterday the multiple myeloma community lost a leading voice and dear friend. Pat Killingsworth died yesterday morning of a cerebral aneurism in Jacksonville, Florida on his 60th birthday.

The loss is profound. He was a dear friend and non-stop champion of a cure for us all. I considered Pat to be a friend long before I actually met him. I didn’t know him well before 2014, but I felt like he was a kindred spirit. Anyone who has followed his blog knows what I mean. He spent hours each day preparing a post of unfiltered information about myeloma—science, research, treatment options, experts’ views, the pharmaceutical and biotech industries, patient and professional organizations, other bloggers, personal stories, and more. If you had a question about anything related to myeloma you could find the answer in his blog or, at a very minimum, get a map with directions to find out where you needed to go to get answers. And if you shared your opinion or sent him an email with a question, he would respond with a hand outstretched. He hid a lot about the pain he was going through with myeloma but the one thing he couldn’t hide was how much he cared about others—everyone, really. Pat only saw friends and friends to be.

His blog wasn’t just about the facts and figures of myeloma. What made him unique was that he was completely real. He shared his frank opinion about new announcements or treatment options. He wasn’t afraid to question icons in the field if he was unconvinced. He did it in ways that were never confrontational or condescending. But you never doubted his sincerity.

We all knew Pat because he shared his world with us. We grew to love his wife Pattie as much as he did. We journeyed with Pat and Pattie as they moved from Wisconsin to the Florida Gulf Coast and then on to Fernandina Beach on the northeast corner of Florida. We took joy in their daily walks and his love of his dog Finnegan. We started pulling for the Wisconsin Badgers, sometimes even when they were playing our teams. We rallied for his victories and happy times and gave our advice when he shared his doubts with us. We encouraged and supported him when he faced setbacks.

Myeloma was not easy for Pat. He was diagnosed in April of 2007 and started treatment on Revlimid and dexamethasone. When that began to fail, he had a stem cell transplant that was not effective. Over the following years he tried a variety of combination therapies and went in and out of relapse. His myeloma became non-secretory, which means that it could no longer be tracked by an M-spike. In 2014, doctors told him that he was out of options. Because he was a fighter, he chose to continue with aggressive treatment. He finally achieved complete remission and was myeloma free.”