Alice Kelly-Enright - Beyond the DX; How We Chose to Thrive
5/16/26
Life is good for Alice and Tom Enright. They have two wonderful adult children who live nearby. Alice loves attending live theatre and concerts. She meditates and eats mindfully. Tom volunteers at the local food bank, handing out food to those in need. And he competes in a men’s tennis league. They just returned from a trip to the Dominican Republic where they won first place in a local bachata dance contest.
It has been 11 years since Alice was diagnosed in January of 2015 with uterine leiomyosarcoma. She went to the emergency room with heavy bleeding. A biopsy confirmed the worst. For Alice, It felt like a punch in the gut . For Tom, things felt out-of-control.
A year later, Alice had a lung metastasis. She declined chemotherapy and instead had it surgically removed with video-assisted thoracic surgery (VATS).
Discouraged by the doctors and online information on how aggressive and terminal leiomyosarcoma was, Tom searched for positive information and Googled, “leiomyosarcoma thriver stories.” He was thrilled to find the long-term survivor story of Sharon Anderson. They read all the thriver stories on the LMSDR blog. Tom contacted Sharon and joined the LMSDR Facebook support group. There, Alice and Tom quickly learned to advocate and push for what they wanted. Tom shared, “we went from despair to hope.” It changed the course of their journey.
Tom attended Rare Disease Week on Capitol Hill and persistently advocated for insurance to cover patients to be seen at large sarcoma centers. Through all these dealings, Tom learned there was something that existed called an “umbrella clause.” Using that information, Tom negotiated getting their insurance to pay for Alice’s treatment with Dr. Suzanne George at Dana Farber. They continue to fly from their home in Maryland to Boston for annual scans and follow-up care.
At first, Alice didn’t want to join the support group and relied on Tom to do the research. However, after Tom’s reports about the information and resources he found, she joined the LMSDR group. Alice later joined Dana Farber’s weekly sarcoma group online and met up with other leiomyosarcoma survivors in person through the Sunflower Brigade. She also participated in the local LMS Ladybugs support group of women and men who met locally in Maryland.
Looking back over their 11-year journey with leiomyosarcoma, Alice and Tom have valuable lessons to share with new leiomyosarcoma patients. First, they learned the importance of being present in the moment and finding support through connections with other survivors..They only talked about the situation with people who would be helpful. They reframed the course of “wait and watch” to “look and live.” When it comes to worry, Alice’s cousin taught them, “don’t own what you don’t have.” Lastly, they advise patients to not let insurance dictate your treatment, don’t take no for an answer, find other LMS survivors and caretakers, and go to a sarcoma specialist.
Today, Alice has been NED (no evidence of disease) for the last 10 out of 11 years. Alice and Tom share their story, to pass their hope forward.