For the first time ever, I felt good about taking my 8-year-old girl to Chicago to meet with her rheumatologist.
Six summers ago, my daughter suddenly broke out in a rash on her face, hands and legs. Her face and hands began to swell. She started covering her legs in Blue’s Clues bandages. We figured out, much later, that this was her pre-school attempt to make her muscles hurt less so she could get up and down the stairs.
After two months of stumbling from private dermatologist to private dermatologist, one at the local children’s hospital took a single look at our daughter, limp as wet rag in my arms, and told us she had juvenile dermatomyositis, an autoimmune disease related to lupus with no known cause or cure.
The doctors started pumping her full of steroids and her red, blotchy little body started ballooning. Her immune system was forcibly suppressed so low that stupid little things, like a stubbed toe I didn’t clean and bandage soon enough, developed into staph infections. In the hospital stays that followed each new complication, I learned to slide a feeding tube up my daughter’s nose and down her throat, and how to inject a chemo drug into her thigh every week.
In between this, I was trying to figure out how to cheer up my wife, who was suffering from guilt, overwork and the fact her daughter was diagnosed on her 37th birthday with what could be a fatal disease. I was trying to pay some attention to my newborn son. More often than not, I was spending a lot of time crying in my car then staring blankly at the red lights of the CVS sign before sucking it up to go inside for another three prescriptions.
In many of our past trips to Chicago, my hope for good progress reports usually crashed early on. The rash just didn’t look any better. Her muscles and joints remained weak or stiff. Her nail fold beds looked aflame with twisted capillaries.
I knew it’d be different this time. Only the vaguest scarring from the rash remained on the back of her knuckles. The heliotrope spots on her eyelids were fading. I was confident to the point that, without a trace of denial on my conscience, I could tell the doctor that the only reason my daughter’s strength tests were a bit below par today was that she was dogging it because I woke her up too early that morning. (The girl confirmed my diagnosis with a snicker later over chips and salsa at the airport Chili’s Too.)
Meganmedal”She looks great. This is the best I’ve ever seen her,” the doctor said. She also expressed amazement that my girl had never developed calcinosis, painful hardened lumps of calcium under her skin.
“I won’t say it won’t ever happen, but at this point, it’s very very unlikely,” she said.
Pending the results of her latest round of blood draws, we could continue our slow tapering off one of the half-dozen meds she was on. The doctor’s look said she did expect any problem with the tests.
I felt great because my daughter felt great. I stepped out of the exam room during the last bit of her strength testing to get a celebratory drink at the water fountain.
That’s when I saw the ghost.
She hopped onto the scale on prednisone-swollen legs. Her face was red as an Atlantic beach sunrise and round as a cartoon moon. She was probably about 4 or 5, maybe a bit older and stunted from all the immune suppressants in her bloodstream.
Her Mom quietly held the girl’s stuffed animal, a beat-up floppy brown thing. It could have been a rabbit or dog or a monkey. Her Dad held a clipboard of papers and the expression of someone who was having the wind knocked out of him every day from every direction.
Our eyes meet. I tried to give a nod of reassurance that would mean something because I’ve met many kids who have gone into remission and led normal lives. I might even by the father of one someday.
But I’ve also met the parents of children who died helplessly from complications of a disease that is not fully understood.
I opened the exam room door and went back in, slowly and silently.