A few months after Dandelion’s first birthday, she started getting a lot of bruises — one so severe it made her mother, Natalie, scream when she saw it. Nearly a year after that incident, doctors at Children's Hospital of Philadelphia (CHOP) diagnosed Dandelion with Evans syndrome, a rare autoimmune disorder that requires regular monitoring through bloodwork and an immediate visit to the Emergency Department if she gets a high fever.
In November 2018, Natalie was getting Dandelion ready for a bath and discovered a huge bruise that seemed to cover her entire back. “It looked like if you would touch it, it would pop,” says Natalie. When Randall heard Natalie scream, he ran upstairs. “I remembered the day before she fell backwards onto a Matchbox car,” he says. “But it didn’t seem to cause her any pain.”
Their pediatrician wasn’t concerned, and Dandelion had no other symptoms. Then months later, she began developing low-grade fevers. A new pediatrician performed bloodwork, and the results were abnormal. “They thought it could be leukemia,” says Natalie. “It was terrifying.” The family made an appointment at the Hematology/Oncology Clinic at CHOP’s Specialty Care & Surgery Center in King of Prussia, 15 minutes from their Phoenixville home.
Dandelion was seen by Julie Stern, MD, a pediatric oncologist who specializes in treating children with cancer and bleeding disorders. After many rounds of bloodwork, Dandelion was diagnosed with Evans syndrome, a condition that occurs when the immune system produces antibodies that mistakenly attack the white blood cells, the red blood cells and the platelets.
‘Terrified and stuck in traffic’
These three components of blood perform different functions, so when each one is attacked and their numbers reduced, the effects are different. When Dandelion has low numbers of white blood cells, she’s susceptible to infection, which means a fever can be life-threatening. In October 2019, a high fever sent the family to CHOP’s Emergency Department in Philadelphia. “It was rush hour,” Natalie recalls. “We were terrified and stuck in traffic.” Adds Randall: “It took two hours. It was nerve-wracking.” Luckily, after they arrived, the fever went down and she didn’t need to be admitted. When CHOP’s new pediatric Emergency Department in the King of Prussia hospital opens, one additional cause of stress — the uncertainty of traffic conditions on I-76 to Philadelphia — will be eliminated for families seeking emergency care.
If Dandelion has low numbers of red blood cells, which deliver oxygen to the body, it can result in anemia. Low platelets, which help clotting, can lead to easy bruising and bleeding. When this has been the case with Dandelion, Natalie and Randall must monitor her activity to keep her from falling and hitting her head. “She’s supposed to keep one foot on the floor at all times. Try keeping a 2-year-old from climbing!” Natalie says with a laugh.
Although Dandelion’s blood cell numbers have at times dipped, they’ve never been low enough to require treatment, and since May 2020, her numbers have been basically normal. “Dr. Stern said if she didn’t know Dandy had a disorder, she wouldn’t know it from the bloodwork,” says Randall.
Now 3, Dandelion enjoys hiking in the woods, coloring, reading and singing. She’s excited to start at a preschool provided at Randall’s workplace. Once needed weekly, her bloodwork appointments now happen every three months — and the procedure is made significantly easier by phlebotomist Emily Cuevas. “She’s incredible,” says Randall. “Drawing blood can be scary, but Emily does a great job by being quick and kind — Dandy has grown to like and trust her.”
Although Dandelion is doing well, Natalie and Randall must remain vigilant. For parents of children with chronic conditions, where trips to the Emergency Department always loom as a possibility, CHOP’s new hospital in King of Prussia will be transformative: lessening their anxiety and getting care and answers faster.