September 28, 1965 - September 13, 2017
When Sue was first hospitalized with life threatening anemia and was in her first hospital room, we had no idea of the cause. While waiting for an official diagnosis, we were asking for information, but were told to wait for the results. Thanks to LLS, there was a table with pamphlets and volunteers in that hospital’s lobby that day allowing us to get an inkling of what might be the case before we got the diagnosis. That initial insight LLS provided into how best to confront leukemia continued for over a decade, giving Sue the tools to get better care, to learn the good and the bad that lay ahead, to pursue knowledge from top doctors, researchers and other patients from all over, and many other forms of assistance. Throughout, LLS was always there with kind and supportive words.
In the last 11 years of Sue’s life, although there were stretches of hospital stays and some limitations, Sue continued to live a full life. There were family weddings, beach weeks, mini-honeymoons, Thanksgivings, Passover Seders, High Holidays and on and on. At work, with accommodations for her physical ailments and hospital time, Sue continued to excel, rising to the top level of her position and receiving the highest recognition for her professional and thoughtful work. As a lawyer, Susan was a paragon of the law -- ethics and justice tempered by concern for each of us. Sue had many circles of friends. She had abundant love towards others.
LLS was with us every step of the way with numerous informative and practical phone and in person sessions as patients and caregivers. In return Sue helped LLS and others, including speaking at a major health conference in support of putting patients first. Sue knew that any health system that overwhelms patients with paperwork and bills and that did not put the patient at the center of their agenda, was failing their patients, patients who already had enough work fighting the disease and the side effects of the treatments.
Sue was a pioneering patient, When she had a relapse in her brain, it was devastating. However, Sue became perhaps the first patient to use a drug still going through clinical trial process to effectively succeed in conjunction with standard treatments to clear the tumor in her and go into a lasting remission. After Sue’s apparent remission, several other patients have also had similar success thanks to Sue’s clinical trial of one. Throughout, Sue wanted to use her experiences to help others who were similarly diagnosed by maintaining a public blog: http://www.suecharen.com
Although all the various treatments helped to defeat the leukemia, they took a toll that may have increased the chance of losing to an opportunistic infection. We hope that you will make a contribution to LLS, to not only find more successful treatments, but also those that lessen the negative impact of those treatments. Sue depended on LLS and wanted people to contribute to LLS, because LLS knows that there are no new cures without the brave patients like Sue who volunteer for groundbreaking clinical trials that LLS supports in hospitals and research centers across the country.