33°
“Her ankle swelled enormously, unbelievably,” recalled her mother, Alecia Turnbull. Having moved her family from New Windsor to Fort Lauderdale, Florida six months earlier, Turnbull thought the swelling was due to Sheila-Anne’s contact with some bug-infested floodwater.
Then Sheila-Anne began to report stiffness and aches in her bones and joints. “Her shoulder rose up to her ears and wouldn’t go down,” said Turnbull. Her local children’s hospital diagnosed Sheila-Anne with lupus, an auto-immune disease in which the body begins to attack its own tissues and organs. In fact, Sheila-Anne’s kidneys were malfunctioning so much that her body began to retain significant amounts of water. The resulting arthritis and inflammation prompted Sheila-Anne’s doctors to prescribe aggressive steroids.
“The doctors there sent us home with medication,” said Turnbull. But instead of relieving Sheila-Anne’s swelling, the new medication caused a host of terrible side effects: abdominal pain, nausea and watery diarrhea.
Dramatic declines
“I tell my patients with lupus that it’s often triggered by accident and that the immune system is not able to turn itself off,” said Dr. Christine Hom, pediatric rheumatologist at Maria Fareri Children’s Hospital, a member of the Westchester Medical Center Health Network (WMCHealth). She now serves on Sheila-Anne’s team of care providers. “This is an 11-year-old who was healthy and happy, running around, going to school. All of a sudden, she has advanced kidney disease.”
Throughout the spring, every time Turnbull asserted that the medication was ineffective, her local doctors would either increase the dose or advise her to remain patient, she said.
Finally, when “she couldn’t even walk,” Turnbull had Sheila-Anne transferred to a hospital in Miami, where doctors suggested she begin a course of chemotherapy to help rein in her immune system.
Distressed at the notion of subjecting her daughter to chemotherapy, Turnbull’s thoughts turned to Maria Fareri Children’s Hospital. There, Turnbull’s older son, now 19, had received life-saving brain surgery for hydrocephalus when he was just 6 months old.
“I decided: ‘We’re going back to Maria Fareri Children’s Hospital; we’re leaving,’” she said. “I was positive that Sheila-Anne would recover and get back to her life.”
To continue reading Shelia-Anne's story via Advancing Care in the Hudson Valley, click here.
