My daughter's medical journey did not begin with a blood cancer. It actually began with a progressive terminal lung disease called Pulmonary Arterial Hypertension. After battling this disease for all of her life, Katy received a double lung transplant at the age of 14 in November of 2013. Her lymphoma and leukemia stories started seven months after her transplant.
In June 2014, Katy was diagnosed with a type of non-Hodgkins large B cell lymphoma called post-transplant lymphoproliferative disease. Katy spent three months in the hospital, after her diagnosis, including one month in ICU, due to complications from chemotherapy. \
In order to be treated near her transplant team, at Lucile Packard Children's Hospital, we lived in away from home for eight months, away from my husband (Katy's Dad), and Katy's younger sister. The treatment for this lymphoma greatly debilitated her.
In February 2015, Katy and I returned home to Utah. She began a long recovery, which culminated in her returning to high school in August 2015. She spent one normal, glorious year in high school.
In the summer of 2016, her platelets started dropping severely. In September 2016, Katy was diagnosed with acute myeloid leukemia (AML). The leukemia is most likely treatment related from the lymphoma. It has turned out to be resistant to treatment. However, Katy is still alive one year later, and actually doing well, although not completely leukemia free.
We hope that she will still make it to a bone marrow transplant before the end of this journey. This time around, we all agreed that Katy would be treated in the Salt Lake City area. We will be attending the Light The Night event for the first time in Salt Lake City as a family. I call Katy our one in a billion child. We are so lucky to have such an amazing and resilient daughter.