That was thirteen months ago. Because Good Pasture’s Syndrome wages a brutal war on her kidneys, Taylor now makes three or four trips a week to Packard Children’s for dialysis. Like many regular patients at Packard Children’s, she’s learned it’s not only medical care that happens there. Her latest diversion has been winning the hospital’s first-ever Holiday Art Contest with her rendering of a slightly rakish snowman grinning on a winter day.
“Our Child Life specialist always brings us fun activities to do – art, or cooking, or some project. One week she told us about this contest. I’ve always liked drawing, so I said sure – and I ended up winning!” she says. With one of her infectious laughs she adds that she’s “kind of a perfectionist.”
Taylor’s diagnosis turned her life upside down, but she does her best to find a new normal amidst the changes. She goes to school as much as possible. She draws and paints. And a day scarcely passes when she doesn’t have a new joke for the world, Lori says. (Exhibit A, told with aplomb: “What does a nosey pepper do? Gets jalapeño business.”) Recently Taylor added dog trainer to her resume; Romeo, a Yorkie puppy who came to her through the Make-a-Wish Foundation, accompanies her on the long treks to the hospital.
Over the months, Taylor has developed valuable relationships with everyone who’s cared for her, from her nephrology doctors, including Orly Haskin, MD, and Scott Sutherland, MD, her rheumatology doctors, like Nina Washington, MD, as well as her pulmonary doctors, the nurses and staff in dialysis and even the pet therapy volunteers. “Everyone has been so loving and caring,” Lori says, “and Taylor really has a special connection with her doctors.”
“They don’t just look at me like a patient there,” says Taylor. “I’m someone they care about. I wasn’t expecting the hospital to be like that,” she says. “My rheumatology doctor, for example, will remember something I said to her, like, six months earlier. They all just really care.”
Taylor is hoping for a kidney transplant this spring. Her mother, Lori, has been increasing her own fitness and will find out soon whether she’s a good donor match for her daughter. In the meantime, Taylor’s sense of humor keeps them both optimistic, and seems to have spawned a broader positivity that belies her youth.
“In the beginning I was nervous and scared, and in denial. But as I got used to it, I’d pass people in the hallway and I’d realize I’d gotten to know them,” she says. “I don’t like being sick, but I’m glad that I’ve had the chance to meet these people, and I’m glad I’m in good hands.”
