On Tuesday, September 13th, the call came: “Something’s not right with your mom. We think you should come home and bring her to the ER.” First Daisy had just been feeling “droopy” and was losing weight, but then colleagues noticed that she couldn’t do simple tasks, like turning on a computer or unlocking a door.
Everyone dreads that call, but in Daisy’s case, it came out of the blue. She was an active woman, and except for a nagging cough, she seemed to be in great health. She had just traveled to Indiana and North Carolina. Although she was “retired,” she had taken on a part-time job managing the religious education programs at her parish. She was eagerly looking forward to the birth of her second grandchild and planning to learn ancient Greek in her spare time.
Daisy was not convinced she was that sick, but she went to the ER. She was admitted, but they were initially not concerned. But strange things popped up in her blood work, including a possible autoimmune condition, so they kept her overnight for observation. Doctors ordered an MRI, but it did not seem urgent. When they finally did the MRI on Friday, they tentatively planned to release her the next day—since despite increasing fatigue and confusion, she could still walk, talk, and eat.
Then the MRI results came back: a “shower” of infarcts caused by mini-strokes all over her brain—both hemispheres, left, right, front, back. Not only was this atypical (strokes usually concentrate in one area), but doctors were also confounded about a cause, as subsequent tests ruled out the usual suspects. Even more ominously, Daisy began a rapid and “striking” decline—she lost her ability to walk or even stand, and eventually she could no longer sit up or talk or feed herself. Her blood work continued to show unexplained abnormalities, but nothing connected. More tests were done, but gave no answers. The ongoing strokes did not explain the decline; they were only a part of a larger problem. The neurologist at the hospital had never seen anything like it. (He in fact recommended transfer to a NYC teaching hospital, but her insurance would not cover that).
After several weeks, her condition initially seemed to have stabilized. But then she began suffering abdominal pain, and the doctors discovered that she was excessively bleeding internally from an unknown cause. She needed five transfusions to make it through the night, and then a few days later had a second bleed (this one less dangerous but in her GI tract). To prevent further bleeding, doctors took her off Heparin, a blood thinner used to prevent strokes.
Daisy remained in the hospital for over five weeks. Doctors did test after test to try to determine the cause of her illness, but still turned up no answers. Only one test remained: a brain biopsy, but it was too risky to try this in the affected areas of the brain. Instead, she was transferred to a skilled nursing facility in the hopes that she can learn to walk again and ultimately continue her recovery (or live out her illness) at home. Because her disease is still undiagnosed, she has no prognosis. The family does not know what medical challenges she will face in her recovery. New issues are still popping up (most recently, they discovered lesions on her liver, which will mean more tests).
Some financial challenges, however, are already apparent. Medical bills are piling up. Even after Daisy is released from rehab, she will require ongoing nursing assistance. Her home is not wheelchair accessible, and In order for her to live at home, the family will also have to complete substantial repairs and renovations (including a new entrance and ramp). In the long term, if Daisy recovers enough, other renovations—such as moving the laundry to the first floor—will be needed.
Just as urgently, her daughter Grace has taken an unpaid leave of absence from her job in Manhattan to move home and care for her parents. Prior to getting sick, Daisy was also the caregiver for her husband Don, who was mostly homebound due to health issues. Grace currently has no source of income, and she has already used up much of her savings to help her parents.
Daisy remains a medical mystery, but one thing is clear: the family needs help with all of these expenses. If you are unable to help financially, please support Daisy and her family with your prayers.