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Kawasaki Is Not a Motorcycle: A Father’s Struggle with His Son’s Rare Illness

Jake Camp
Jake Camp
Apr 15, 2019 · 14 min read
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Jake Camp relives the trauma and uncertainty of his son’s battle with the rare vascular disorder Kawasaki Disease.



Cascading Symptoms, Ambiguous Presentations

On a Friday night after a long week, I set the dinner table, lit a candle, and the kids and I sat down to eat one of our favorite meals. Before devouring the great American sandwich, we engaged in our own secular tradition of talking about something we were thankful for. Nothing remarkable was said. We chatted. We ate. Maybe we laughed a little. But something didn’t taste quite right about the hamburgers to my eight-year-old son, Bechler (pronounced Beck-ler). Despite the fact that hamburgers were his second-favorite meal, he complained about the texture of the meat, the seasoning, the graininess of the bun. He couldn’t quite put his finger on it. Neither could I.


At the Mercy of Probability

Our first night in the hospital was filled with a disturbing array of emotions. As I learned more about KD and its potential implications for Bech’s heart (KD is the leading cause of acquired heart disease in children), it became apparent that my starry-eyed sense of hope for my son’s future, for his dreams and aspirations, for his very ability to flourish, rested on the wobbly legs of probabilistic reasoning. A doctor who had experienced this or that. Research that suggested thus and so. At more than one point, doctors told us we had left science and had entered into the art of medicine, where no singular test could confirm KD, and where medical consensus was not necessarily unanimous (one of Bech’s doctors suspected an adenovirus).


False Summits of Suffering

Things never move as fast as you want in a hospital. Despite the fact that the official diagnosis was made on Friday morning, the IVIG treatment didn’t start until that evening. At first, there was a sense of relief about getting to this phase, but after only an hour, Bech started to get hives and had uncontrollable itching. The nurses said this was a side effect of the IVIG. They also reminded us of other possible side effects, like bloating or sterile meningitis. Sterile meningitis. Please no. What if, on top of everything else, my son blew up like a balloon and had a splitting headache for 24 hours? Could I endure watching him suffer in this way?


Not Just a Game

The whole next day and night was a blur. Zigzagging emotions. Worry, fear, sadness, pain, sleep deprivation. I felt like I could barely hang on. Did I make a trip home for a shower and change of clothes? I couldn’t remember. The only thing that kept me afloat was the hope that the fever would stay down. But, alas, the gods were not so straightforward. Bech’s temperature spiked to 101 degrees. A nurse needed to draw blood and couldn’t locate his vein. Screams. Cries. Lightning struck the roof on Children’s Hospital. Thunder. An hour later, the nurse took his temperature again. 99.8 degrees. I let out a breath of air. The storm calmed down. To be clear, a low-grade fever is common after IVIG. The real worry is that it rises, or doesn’t go back to normal, in which case, the KD might be coming back.


Road to Recovery

By the time we checked out of the hospital on Sunday, Bech’s fingers and toes were peeling (a sure sign of KD). He’d lost 10 pounds. He needed supplemental oxygen during sleep. He was exhausted, irritable, ready to leave. They say it takes about six to eight weeks to recover fully. The truth is it took much longer. Bech’s energy was low for months. He had tingling in his legs that required him to come home from school on several days. His personality had mellowed. He didn’t make the typical loud noises when he played. But, his six-week heart examination came back normal, which is what mattered most. No aneurisms. Swelling down. My son was lucky in this way.

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JAKE CAMP is a philosophy professor and department chair. He is the author of two novels, Facticity Blues (Double Dragon Publishing, 2016) and Banshee and the Sperm Whale (forthcoming), and lives in Arvada, Colorado, with his sons.

The Coil

Literature to change your lightbulb.

Jake Camp

Written by

Jake Camp

Philosophy professor and author of two novels, Facticity Blues and Banshee and the Sperm Whale (Pski’s Porch Publishing, forthcoming). https://www.jakecamp.com

The Coil

The Coil

Literature to change your lightbulb.

Jake Camp

Written by

Jake Camp

Philosophy professor and author of two novels, Facticity Blues and Banshee and the Sperm Whale (Pski’s Porch Publishing, forthcoming). https://www.jakecamp.com

The Coil

The Coil

Literature to change your lightbulb.

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