Ella’s legacy: Turning tragedy into an international advocacy network for PVNH

By Yolaine Dupont Ella She was born in Vancouver, British-Columbia at 39 weeks, weighing 5 lbs. and 7 oz. With a nearly flawless APGAR score, her father’s mouth and nose, along with my eyes and full set of dark hair. Just as I imagined she would be, Ella was picture perfect. Still, I had an uneasy feeling. Ella was frail, and her breathing seemed off. I mentioned it to her doctor and nurse, only to be quickly reassured that all was okay. After five days, I took her home. But that upsetting feeling would not go away. The old expression “Mom knows best” turned out to be true. By Ella’s second month, she was admitted to the emergency room and was diagnosed with bronchiolitis, following a few tests. After a short stay, we were sent home. Two weeks later, cutting our trip to introduce her to family short, Ella went back into the hospital. A follow-up x-ray had shown a clear progression of lung disease, and doctors were careful to rule out food aspiration and the more scary diagnosis of cystic fibrosis. But nothing prepared us for what was to come. At 3 months old, Ella “the Zebra” (as she became known) was puzzling doctors. Her lungs were badly damaged, plagued by emphysema. We were told she was too young for lung resection or a transplant, despite the fact she was struggling to breathe. Her saturation would suddenly drop as low as the 40 and 30s. Ninety-six is the normal saturation at room temperature. After spending one month in the hospi...
Source: Thrive, Children's Hospital Boston - Category: Pediatrics Authors: Tags: All posts Diseases & conditions Our patients’ stories Research cytomegalovirus our patients' stories PVNH Source Type: news

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Source: ABC News: Health - Category: Consumer Health News Tags: Health Source Type: news
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Source: Journal of Medical Mycology - Category: Biology Source Type: research
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Source: International Journal of Nursing Sciences - Category: Nursing Source Type: research
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Source: Artificial Cells, Nanomedicine and Biotechnology - Category: Biotechnology Tags: Artif Cells Nanomed Biotechnol Source Type: research
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Source: Best Practice and Research Clinical Haematology - Category: Hematology Source Type: research
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Source: Best Practice and Research Clinical Haematology - Category: Hematology Source Type: research
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Source: Journal of Pediatric Hematology Oncology - Category: Hematology Tags: Original Articles Source Type: research
We report a relapsed ALL patient who presented with 2 separate chloromas and cerebrospinal fluid lymphoblastocytosis, and outline a treatment plan of systemic chemotherapy and CNS-directed radiation therapy. A review of the literature indicates that multiagent chemotherapy combined with CNS radiotherapy is effective, with hematopoietic stem cell transplantation used in half of reported cases. We conclude that intensive systemic multiagent chemotherapy with CNS-directed radiation therapy can be successfully used to treat relapsed pediatric ALL with CNS lymphoblastic chloroma.
Source: Journal of Pediatric Hematology Oncology - Category: Hematology Tags: Online Articles: Original Articles Source Type: research
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Source: Journal of Pediatric Hematology Oncology - Category: Hematology Tags: Online Articles: Original Articles Source Type: research
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