Three-year old Annabelle Threadgill of Ottawa, Illinois was born with a lump in her arm caused by a condition called aggressive fibromatosis, which can be a difficult disorder to diagnose. The tumors it causes are usually not cancerous, but can spread to nearby tissue and organs. In Annabelle's case, however, the tumor was a soft tissue cancer.
|PATIENT STORY: FAMILY BENEFITS FROM
EXPERIENCE OF PEDIATRIC CANCER CARE
The Threadgills were referred to a group of pediatric oncologists at the University of Chicago Comer Children's Hospital who have experience with this rare disorder.
Charles Rubin, MD, of the University of Chicago Pediatric Hematology/Oncology group, has been Annabelle's physician at Edward, where he is Medical Director for Pediatric Hematology/Oncology.
Dr. Rubin also serves as Director of Edward's Pediatric Cancer Committee, whose goal is to make sure that young oncology patients receive the highest quality care. Members include oncologists from Edward, Comer and Hope Children's hospitals; nursing leadership; a pediatric emergency physician; a pediatric pharmacist; a social worker and child life specialists. The committee also discusses staff education, support programs, new drugs and technologies, quality assurance measures, and policies and guidelines.
"We want them to have the opportunity to meet other people who understand what they are going through," says Dr. Rubin. "We try to schedule appointments so that other children will be receiving chemotherapy at the same time. The patient also sees the same doctor and the same nurse practitioner throughout their course of treatment."
Annabelle's nurse, Alison Slaney, and Nina Sittler, a child life specialist at Edward, are other important sources of support for the Threadgills.
"I don't know how I would have gotten through this past year without Nina's help in entertaining and distracting Annabelle," says Julie. "She made things less scary for Annabelle and more like a game. Annabelle says, 'I love Miss Nina.' And I love her too."
For more information, visit www.edward.org/cancer.