The first months of Sierra’s life were uneventful, she was not sick for a single day. In May of 2017 when she was ten months old, after a series of ongoing fevers, plummeting energy levels, inexplicable leg pain and a yellowish tinge, Sierra was admitted to the emergency room of the internationally recognized Children’s Hospital of Philadelphia (CHOP). After reviewing blood labs, the medical team determined that leukemia was likely the reason for Sierra’s condition. A bone marrow biopsy was conducted to confirm the diagnosis, Acute Lymphoblastic Leukemia with KMT2A (MLL) Gene Rearrangement, a disease that only 30-50 children in her age group have annually in the United States. Following diagnosis, Sierra and her family stayed inpatient on the oncology floor at CHOP to complete the first cycle of chemotherapy, finally being discharged July 7, a few days after Sierra’s first birthday. Subsequently and over the course of ten months, Sierra has completed 4 cycles of chemotherapy, with the majority of her time inpatient. Sierra has endured surgical and diagnostic sedation procedures, over 40 blood, platelet and immune globulin transfusions, has suffered numerous side effects of chemotherapy, and has taken an enormous number of medications. Through all of this, she learned to walk, to speak two languages, and has remained cheerful, playful and trusting. We have gotten to know the amazing stories of so many children and families, have experienced our health system with all of it’s fantastic benefits and challenging shortfalls firsthand. So many families have traveled this journey before us, and so many travel the same journey with us now. We are enormously grateful for all that has been offered to us by friends, family, colleagues, and the medical team and systems that make treatment for ALL possible.
Currently Sierra is in her fifth cycle of treatment, the “maintenance” cycle, a less intensive treatment protocol, largely delivered at home. While Sierra’s treatment is ongoing until October 2019, we would like to take the opportunity to give back to the larger community through a blood drive. Please consider giving blood to support pediatric cancer patients and their families as they complete life saving treatment.
To read more about our journey, please see our Caring Bridge journal: https://www.caringbridge.org/visit/sierraraejohnson/journal