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Patient Story

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At 7 months of age, Blake (Figure 5-1) was diagnosed with a rare, progressive malignancy. His initial admission was prompted by swelling of his left lower extremity, and imaging studies revealed an extra-renal rhabdoid tumor. His family experienced a rapid indoctrination into the world of childhood cancer. Blake had a central line placed and chemotherapy begun; his parents faced the accompanying challenges of work absence, needs of their other child, the responsibilities of communicating complicated information to supportive communities, and the fear of losing their infant son. Six weeks later, Blake was admitted for emesis and the detection of brain metastases lent new gravity to his prognosis. A ventriculoperitoneal shunt was placed and bone marrow studies performed. The Palliative Care service met Blake, his parents, and 4 year-old sister shortly thereafter. Blake’s family sought support in managing anticipatory grief, supporting and preparing his sister, decision-making discussions, end-of-life planning, as well as in planning for life after his death. The Palliative Care service also provided symptom control consultation for Blake’s disease- related pain and agitation. Music and art therapies were helpful for diversion and expression of difficult emotions, particularly for Blake’s sister. Blake received palliative chemotherapy which was temporarily quite efficacious and resulted in marked clinical improvement. He would play, smile, engage those around him, and grant his family an unexpected gift of treasured time. Between admissions for chemotherapy, his family was supported by local hospice, as well as the on-call oncology and palliative care staff. Upon admission for a fourth round of high-dose chemotherapy it became evident that the hydration therapy necessary for chemotherapy administration would worsen Blake’s already tenuous respiratory status. His parents, who had clearly expressed that they desired only therapies that would be beneficial for Blake, wished to discontinue chemotherapy. Supportive measures, including opioid treatment for pain and dyspnea, and benzodiazepine infusion for anxiety and dyspnea, were titrated to address clinical symptoms. Team members supported the family through this decision-making process, and offered discussions regarding common occurrences at the end of life. His parents elected to have Blake’s end of life in the hospital setting as they felt most comfortable with the resources there. He died peacefully in the company of his family. The Palliative Care team continues to provide bereavement support.

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FIGURE 5-1

Blake was diagnosed with an extra-renal rhabdoid tumor. Blake appears healthy in his home at an early stage of his disease. His parents elected to have Blake’s end of life in the hospital setting as they felt most comfortable with the resources there. He died peacefully in the company of his family. The Palliative Care team remains involved. (Used with permission from Blake’s family.)

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Introduction

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Pediatric palliative care (PPC) is comprehensive, interdisciplinary, compassionate, inclusive, adaptive and effective. Ideally, it begins at the time a child or adolescent is ...

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