Dad continues to recover from his biopsy two weeks ago. The stitches were removed at the back of his head yesterday and the incision seems to have healed well.
His speech is mostly unintelligible now and he is being fed through a stomach tube. Dad’s loss of muscle control in his face and neck made it too dangerous to try swallowing–too easy to choke or aspirate his food. He sleeps a lot, and he’s lost nearly 20 pounds since entering the hospital for the first time in June.
The doctors have finally narrowed their diagnosis to a condition called PML (Progressive Multifocal Leukoencephalopathy). At least it’s not Creutzfeldt-Jakob Disease, which is probably the worst thing he could have contracted.
PML is probably the second worst.
It’s an opportunistic infection that occurs in people with inadequate immune response, like people with chronic leukemia. At least 80% of the adults in the United States have been exposed to JC virus, but very few develop PML. In PML, the JC virus infects and kills the cells that produce myelin, which is needed to form the sheath that surrounds and protects nerves.
PML is usually very aggressive. The time between the onset of symptoms and death can be as little as one to six months. That fits with Dad’s symptoms; they came on just over two months ago and now he’s confined to a hospital bed, basically helpless.
After some discussion, his doctors today began a course of treatment with a drug called Cidofovir. Some studies with small sample sizes–less than two dozen people–indicate about a 1 in 3 chance of improvement.
Leave it to Dad to come down with a disease that, when he recovers (God willing), guarantees he’ll be written up in medical journals.
But then, maybe that’s just what God wants…