14-year-old ‘mystery patient’ keeping sense of humour despite difficult diagnosis
What started as a little red mark under one eye has become a medical mystery for Arianna Foley and her family.
The 14-year-old Gananoque Secondary School (GSS) student was enjoying the holidays this past December when she noticed a red mark under her left eye. Foley’s stepmother, Alexis Wakelin, said the family became concerned because “within three days it went from a little red beside her eye to her whole eye [being] swollen shut. It was very bruised-looking, very puffy. So that’s what started us on our journey.”
That journey took them first to Hotel Dieu Hospital’s Urgent Care Centre, where Arianna was prescribed multiple types of antibiotics for an unspecified “orbital inflammation.” However, said Wakelin, “nothing was helping. It was just continually getting worse.”
Multiple return visits to the hospital in January for CT scans and an MRI led to a week-long stay at the Inpatient Pediatric Care Unit at Kingston General Hospital (KGH). Still baffled, the Kingston care team sent Foley to CHEO (Children’s Hospital of Eastern Ontario) in Ottawa.
Wakelin said, “They don’t have a cause yet, [but through] Arianna’s newest full body MRI, which was this past week at CHEO, they have found out that her entire musculoskeletal system — essentially her muscles from her neck to her feet — are extremely inflamed.”
After a week at CHEO, Arianna was allowed to come home, but the family needs to attend follow-up appointments in Ottawa, including a visit today, March 15, for three muscle biopsies and a bone marrow biopsy.
“It’s getting a little scary,” said Wakelin, “especially when you hear bone marrow.”
But she and Arianna’s father, Roger Foley, are thankful for all the support they have been getting.
While the couple has to stay in Ottawa with Arianna, Wakelin said that her sister, Marilyn Wakelin, “is staying at home… managing the home, dogs, and kids (Arianna’s sister and stepbrother), and that’s allowing us to be really focused on Arianna. [Marilyn is] kind of our saving grace at home. She’s been amazing.”
As well, Arianna’s aunt on her father’s side, Jessica Foley, has started a GoFundMe to support Arianna’s family with funds for their travel expenses, a gesture which Wakelin called “amazing.”
“You know, it’s funny,” Wakelin said, “the hospital keeps referring to Arianna as their ‘mystery patient.’ And it sounds crazy, but even with everything — the blood tests, the MRIs, the CAT scans — Arianna kind of likes that she’s the mystery patient.” It has become a source of humour in the midst of the chaos, Wakelin remarked, a little bit of “good in the middle of it all.”
“Hopefully, she’s not [a mystery patient] for much longer, because we desperately want to know what’s going on and how to fix it,” said Wakelin. But it is uplifting to know Arianna still has a sense of humour. “They told her at one point [that] 26 doctors have looked at her scans, and [Arianna said] she’s ‘basically famous.’”
Editorial note: The Jessica Foley referred to in this article is not the same Jessica Foley employed at Kingstonist.
Hopefully, a rheumatologist has been involved- Dr. Joneja at KHSC is really good!