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At the End of Too-few Days By Marina Dundjerski • Photography by Ann Johansson No family should be alone when facing the death of a child. UCLA’s Children’s Pain and Comfort Care program helps them to endure the ordeal. T he news Jeannie Malabanan received in January 2014 was devastating. Following a year of difficult and aggressive chemotherapy for a rare bone tumor, the cancer at the base of her daughter Ashlee’s spine had metastasized to her brain. After a recurrence of her symptoms, Ashlee began to have seizures and was re-hospitalized at UCLA. The Children’s Pain and Comfort Care (CPCC) team was called in to assist. “They talked to us and supported us and provided Ashlee with as much quality care as was possible during this end- stage of her life,” Malabanan says. “Basically, they helped our family to process and survive this ordeal.” Ashlee decided to forego further treatment and to stay in the hospital. “It was a hard choice for us to accept — as a parent, you want to keep your child alive for as long as you can,” Malabanan says. “But I know keeping Ashlee alive was not what she wanted. She didn’t want to just be breathing and not have any quality of life.” In the two weeks that Ashlee was hospitalized, the CPCC team worked with her primary medical team and others to provide whatever assistance was possible. “They came by regularly to make sure her last days were as comfortable as possible, as she fell deeper into her terminal illness,” Malabanan says. “They let us know that we were not alone and that if we wanted them, they would be with us every step of the way.” The Chase Child Life Program of Mattel Children’s Hospital UCLA created a plaque with Ashlee’s palm print, and the CPCC team had her fingerprint replicated on more than a dozen pendants for family members to wear. When Ashlee lost consciousness, her wishes were known. Arrangements were made so that family members could stay with her, and until the end they never left Ashlee’s side. She was 21 years old when she died. Since it was established in 2008, UCLA’s CPCC program, which is within Mattel Children’s Hospital UCLA, has worked to succor pediatric, adolescent and young-adult patients, like Ashlee, in their days of need and to help their families grapple with the unfathomable: the death of a child. While the broad-based CPCC team includes a psychologist, three physicians, nurse practitioner, social worker bereavement coordinator, chaplain, child-life specialist and administrative assistant, the front-line clinical-service team, including the physicians and nurse practitioner, sees some 200 patients a year in the hospital setting and another 325 patients through its outpatient clinic. Taking an interdisciplinary approach to address the core goals of care decisions, pain and symptom management and bereavement support, the team has a mission to enhance the comfort and quality of life for children with complex medical conditions and for their families. They work to relieve symptoms of disease or its treatment and to address psychological, social and spiritual needs. U MAGAZINE 33