A mother recounts a year in her family’s life as they confront their newborn’s devastating diagnosis.
In 2000, Dutch novelists de Jong’s third child was born with a strange bump on her back. A skin biopsy revealed that the baby had congenital myeloid leukemia, an exceedingly rare disease for which there was no standard treatment protocol. Her sympathetic pediatric oncologist could offer only chemotherapy but cautioned that it was so harsh that it might cause blindness, infertility, or death. Stunned, de Jong and her husband, Robbert, decided to forgo that option. The author quietly conveys the couple’s sense of desperation as they returned to their home in a seedy section of Amsterdam to watch and wait. She took a leave from her job to care for her infant and two young sons, determined to nourish, protect, and love the baby for whatever time she had left. At the hospital for her daughter’s bone-marrow biopsy and at weekly visits to the oncologist, de Jong observed the terrifying world of childhood cancer: pale, skinny children weakened by chemotherapy, hollow-eyed parents frustrated by their powerlessness. She felt as if she had entered a “portal of death.” At home, they were supported by a motley assortment of neighbors: a friendly young prostitute working out of a brothel across the street; an eccentric man living with his aging mother; another man who grew sicker each day. All offered sympathy and prayers. In contrast, people she hardly knew, impelled by “morbid curiosity disguised as empathy,” intruded with shocking, sometimes bizarre, remarks. After one disturbing visit, de Jong dug “a deep moat around our house” and “pulled up the drawbridge.” Since watching and waiting do not in themselves yield a lively narrative, de Jong shares details of family outings, childhood memories, and surreal dreams. In one, she is running home with her children on streets made of quicksand. Happily, readers know from the start that this story ends well.
A tender evocation of fear, hope, and love.