This is the second installment in a special CommonHealth/WBUR series,The Life of Riley: A Rare Girl, A Rare Disease. It’s the story of a remarkable nine-year-old girl born with a one-in-a-million disease that creates increasingly aggressive “lumps and bumps” on and in her body. The only treatment, so far, has been surgery. But right now, at Children’s Hospital Boston, Riley is trying an experimental drug that may—or may not—help her.
This week, Riley lay confined in the claustrophobic tube of an MRI machine for more than two hours. Even for such a veteran of the magnet—this was her 32nd MRI scan—that was long, and even with a movie to watch on goggles, the time in forced immobility passed too slowly.
But the test was a critical one: If there was a significant new growth on her spine, she might be knocked off the Children’s clinical trial—and possibly face another operation. (“Any past surgeries for her?” a nurse asked Riley’s father, Marc. “Yes,” he responded matter-of-factly. “She’s had like 14 surgeries.”)
The MRI was a test at another level as well. When a scan looms ahead for Riley, it is naturally a time of dread for her and her family, because so often in the past the results have meant more danger, more surgery. “It’s hard to get around the anxiety,” said Riley’s mother, Kristen Davis, “because almost every MRI has brought up something significantly new and bad.”
In the photos by WBUR’s Jesse Costa above: Riley draws comfort from a favorite blanket; it was mainly new silky-soft fabric, but Kristen had also sewed onto it the tattered scraps of “blankies” past that have helped Riley through her countless days in hospitals and doctor’s offices.
The blue clip held closed Riley’s hospital johnny, and Marc stayed in the room with Riley the entire “creepy” time she was in the magnet. Day to day, it is Kristen who gives Riley most of her medical care, but company in the MRI is a longstanding father-daughter tradition.
In the video diary below, Riley talks about her feline comforter-in-chief, the “big fuzzbucket” Mongoose, and about her strategies for getting through an MRI: Relax, deep breaths, think about her cat. She also interviews Kristen about her own tactics for overcoming her pre-MRI worry.
Please stay tuned for this scan’s results next Friday. In the coming weeks, we’ll also get to know Riley and her family better, and meet her medical team, who will guide us through the ongoing research into diagnosis and treatment of CLOVES, Riley’s disease.