Aspen was diagnosed with Hemophagocytic Lymphohistiocytosis (HLH) in August 2013, at the age of 16 months.
Following twelve days of high fevers. She started chemotherapy and steroids immediately, continuing treatment for two months before she relapsed for the first time. Upon relapse, her family flew her from Seattle to Cincinnati for a second opinion of care, and made the decision to permanently transfer her care to Cincinnati Children's Hospital.
She underwent a bone marrow transplant in early Feb 2014, spending over ten consecutive months inpatient battling a plethora of life-threatening complications. By the time she was finally discharged for the first time, it was apparent that her transplant had failed.
The next 9 months were spent in isolation at the Ronald McDonald House, with her organs slowly trying to recover from the previous year. In the summer of 2015, Aspen relapsed, twice. The first relapse was controlled with chemotherapy and steroids.
The second relapse, which came only weeks after the first, was treated with a trial medication, not yet approved by the FDA. This medication was given until November 2015, and put Aspen into a true remission. Unfortunately, this remission is almost certainly temporary, and we will explore further treatment options at that time..