Diagnosed in 2004 at age 41; Passed away in September 2017 at 53
Elisabeth bravely battled FHC for 13 years. Her cancer was found fortuitously – her primary care physician, trained in China where liver disease is common, ordered a complete liver panel during a routine physical and found a few liver enzymes very slightly outside the normal range. After many retests and a move from California to Massachusetts, doctors at Mass General Hospital found a mass they believed to be a benign hemangioma on the edge of her liver. After a liver resection in December 2004, the grapefruit-sized mass was identified as fibrolamellar. Follow-on scans showed more lesions, so she had a second resection 6 weeks later. By late 2005 she had several inoperable tumors, so she underwent radiofrequency ablation followed by a liver transplant with adjuvant chemotherapy (doxorubicin) in February 2006.
After her transplant, Elisabeth had almost 2 1/2 cancer-free years, then a period of abdominal and thoracic surgeries every 6-12 months to remove “single tumor” recurrences. By 2012, she had multiple inoperable tumors in her lungs, so she started a series of systemic treatments, including everolimus, FOLFOX, MGCD 516, ENMD 2076, cabozantinib, sorafenib and regorafenib. Of the systemic treatments, MGCD 516 gave her the best results — nearly 1 year of shrinkage/stability. FOLFOX and regorafenib also gave her brief periods of shrinkage/stability. In addition to the chemo/targeted therapies, Elisabeth underwent multiple rounds of radiation and bronchoscopies to shrink or abrade lung tumors that were impinging on her spine and blocking her airway. By 2016 the cancer had spread to her bones and abdomen.
In August 2017 Elisabeth was hospitalized for the last time. By the end of that month, the cumulative effect of the cancer and the treatments had weakened her to the point that additional medical intervention would have been futile. She entered hospice in September 2017 and passed away at home on September 21, 2017.
Early in her FHC journey, Elisabeth’s biggest fear was missing seeing our two sons, Merritt and Travers, grow up. Since she was diagnosed when they were in 2nd grade and 4th grade, witnessing their high school graduations initially seemed to be an unreachable goal. As was her way, she greatly over achieved, attending both sons’ high school graduations as well as Merritt’s college graduation in June 2017. She saw both boys mature into fine young men – Merritt, currently a PhD student, and Travers, a data engineer for a start-up company. She endured a lot, but faced it with strength, grace and dignity. We miss her dearly.