Our last installment (for now) focuses on the medical care she received from nurses and nurse practioners, which all NET patients and caregivers might agree is essential for a healing journey. Special bonds also develop between patient and practitioner.
Kristin has been in nursing 22 years and the last three in research, but she has to think about neuroendocrine tumors and the impact on her patients in a much different way than other cancer patients.
Nurse Kristin (University of Iowa Research team) first met Khloe on the phone, and one of her first tasks was to establish good communication with the family as she and other team members began to direct Khloe's care for a new clinical trial that could shrink Khloe's tumors. Kristin was experienced in adult oncology so working with a child and her family required a more focused approach.
Nurse Andrew was the first nurse on #Team Khloe when he was randomly assigned to her care at the University of Maryland outpatient clinic after the family met Dr. Teresa York at Children’s Hospital (following the initial ER visit that diagnosed her neuroendocrine tumors). Andrew says at first he felt like he was “winging it” when nurses at his clinic with many more years of experience than him did not have answers about neuroendocrine tumors. Thanks to a connection Dr. York established with Pediatric NET specialist Dr. Sue O’Dorisio and her team (including Nurse Kristin) in Iowa, Andrew learned more about NETs and it soon became clear he and Khloe had developed a very special bond.
Nurse Andrew and “Nurse Andrew” with Khloe
Marie Cook is a Pediatric Nurse Practitioner with 42 years of transplant experience. She also met Khloe for the first time on the phone as she communicated with the family about what to expect when Khloe was listed for a pancreas and liver transplant at the University of Minnesota Masonic Children’s Hospital. She was an important part of a medical team that now spanned three states. In all of her long experience, Marie had “never seen a child with neuroendocrine tumors get a liver transplant.”
“ I would describe Dr. York as a loving and friendly doctor. She has been there from the start. I would describe Dr. O as intelligent and smart and loving and she got the ball rolling with my treatment. I would describe Dr. C as a warmhearted person and precise. He was the one who did my transplant and got me cancer free. I feel great and strong, like I can do anything I put my mind to do.”
