Jake Camp relives the trauma and uncertainty of his son’s battle with the rare vascular disorder Kawasaki Disease.
“After great pain, a formal feeling comes —
The Nerves sit ceremonious, like Tombs”
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.
In the morning, we woke to our normal Saturday routine. The kids had breakfast in front of the TV, while I lounged around in the sunroom drinking black tea. Yet it was clear from the moment Bech got up that he wasn’t his normal self. His stomach churned. He had no energy. He was dizzy. Later that morning, when I took him to his final basketball game of the season, he played like he was in a fog. Ordinarily, he’d be a darting ball of enthusiasm; this was the championship game. But his arms were heavy. He was short of breath. Bech sat slouched on the end of the bench for the whole second half.
After the trophy ceremony, the kids and I went home, did our thing for the rest of the day. Some cleaning, some writing, some eating, some playing, whatever. The details don’t seem to matter, except for the fact that all Bech wanted to do was lie on the couch and watch episodes of Scooby-Doo, Bob’s Burgers, and the like. Suspecting the flu, I checked the medicine cabinet. Was the Tylenol expired? Did the thermometer need batteries? Could I find the measuring cup? Everything was in order. Not much else to do except wait for the sickness to pass. With a good night’s sleep, I imagined Bech would feel better and that tomorrow would be a new day.
Tomorrow was not a new day. Bech was quiet and sluggish, his mood flat in a way I’d never seen before. Again, I wondered if he were catching the cold or the flu, but he had no sore throat, stuffy nose, or normal flulike symptoms. The situation was weird. I grew concerned.
Then a high fever hit.
An hour later, he vomited.
Okay, I thought, although the sequence of events was unusual, this was the flu. Not a huge deal, even if it scared me a little because Bech had a history of bad flus. Really bad. A year earlier, he fainted and had a small seizure, which required a trip to the ER. Turned out that it was not serious, and the doctor was skeptical that my son had convulsed. Thankfully, he sent us home with an anti-vomiting medication (Zofran), which felt like a major security blanket. If Bech were to have another vomiting episode in the future, I felt confident he would be fine.
Bech threw up five more times that Sunday afternoon. Each time I grew more uneasy. At that point, I told myself that if he vomited one more time, I would give him the Zofran. He vomited again, and as I held his head over a pot, he convulsed for a few seconds. Convulsed in that same seizure-like way that he had a year earlier. Alarm hit. Panic. Time squeezed tight around my neck like an anaconda. A heavy pressure behind my eyes. I felt horrible for not giving him the medication earlier. Why did I wait? I fumbled with the container, placed a dissolvable pill under his tongue. He stopped puking, and after a precautionary trip to doctor, I firmly believed he had endured the worst of this strange sickness.
Then the rash hit.
A wildfire on his epidermis, flat red splotches spread across his stomach and back. The rash wasn’t itchy and didn’t look serious, whatever that means, yet it was another event that short-circuited my brain, made my parental alarm ring louder. I started searching images on Google. Chicken pox, measles, a reaction to food. Nothing looked quite right. I called my son’s mom, Cheri, and texted her some photos. Cheri called the triage nurse who told her to bring Bech back to the doctor on Tuesday.
Bech’s pediatrician, Dr. Nagel, said it was likely scarlet fever. But the rapid strep test came back negative, in which case some other nasty virus or bacterium was likely to blame. So the normal protocols were in place. Liquids. Rest. Fever management. Cheri stayed with him that night and the next day. She treated him with alternating doses of Ibuprofen and Tylenol every three hours. Bech had no appetite during this time and remained in a dreadful holding pattern. My vibrant son with a huge personality had been reduced to a shell of himself.
On Wednesday, I picked up Bech at Cheri’s. He was still battling nausea, and we were down to two pills of the Zofran. Feeling like the last thing we could risk was another convulsive episode, I took him back to the doctor the following day. Despite my own concerns, which were anchored in a bit of hypochondria and a profound sensitivity toward my son, Dr. Nagel didn’t seem too worried about the cascading symptoms. He renewed the Zofran and told us to come back on Friday if the fever remained.
But on Thursday, Bech’s condition worsened. His eyes were bloodshot. His tongue turned strawberry red. Bech complained that it hurt to pee. His urine was dark orange, suggesting blood.
“What the fuck?”
Wholly unnerved, I took a trip to Walgreens, purchased an over-the-counter test for a urinary-tract infection. The test was negative, which gave me a sense of vertigo. Now 3:30, I needed to pick up Bech’s brother, Alejandro, from school. What should I do with Bech? I couldn’t leave him alone for 45 minutes. So, I took him with me, which felt like a mistake. The drive was horrible. My son’s sensitivity to sights, sounds, and smells was otherworldly. Especially smells. Any type of an off aroma — a banana peel, exhaust, bad breath — genuinely pissed him off, battering his senses, forcing him to take every psychological measure not to vomit in the back seat of the car.
When we got home, my mind was tattered, vision blurry. I could hardly see past my nose. My entire being felt like it was being squeezed by a vice-grip. I called Cheri. She came over after work to take Bech back to the doctor. When Dr. Nagel examined my son this time, he knew it could be serious. Cheri gathered some overnight items and rushed Bech to Children’s Hospital Colorado. When Bech arrived, a team of infectious disease doctors, heart specialists, and general practitioners examined him. After running a barrage of tests, the team of doctors suspected the worst — a rare vascular illness that affects around 5,000 children in the United States annually. Of those 5,000 children, 80% are aged five and under. Given that my son was eight years old, this means he is one of only 100 or so kids in the U.S. his age to have acquired Kawasaki Disease (KD). First recognized in 1967 by a Japanese pediatrician named Tomisaku Kawasaki, KD is a condition that most Americans are unfamiliar with. I was. Prior to March 2016, I only knew “Kawasaki” to be a motorcycle brand.
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).
Meanwhile, as medical professionals continued to assess the situation and to discuss treatment contingencies, my son’s condition took a downward turn. His fever went sky-high. He’d developed pneumonia. He needed oxygen. He could hardly talk. And the world was spinning fast. The engine on the Kawasaki motorcycle revving way too high. And I wanted to slow it down, needed it to slow down. Like now. Time to hit the brakes. Time to stop the dirt bike from spinning cookies across all of our lives.
The first line of treatment for KD is intravenous immunoglobulin (IVIG), where antibodies are introduced into the blood stream to help fight inflammation. IVIG comes with an 85% success rate, which means that even after two doses, it doesn’t always work. In the event that IVIG and a high dose of aspirin failed to bring down the fever, the last line of treatment for KD is an immunosuppressive drug called Remicade®. If neither IVIG nor Remicade® was effective, there’s a 25% chance of permanent cardiac involvement (an aneurism, for example). Moreover, the treatment must be administered within the first 10 days for it to have any chance of success.
Now approaching day seven, I felt totally destabilized, my emotions cooked over an open fire. Popping noises. Sizzling. The sap within me started to burn. I closed my eyes in silence, tried to pretend I was in another place. No chance. Anxiety held me tight, moved me closer to the flames. Helplessness took hold. Sadness. Anger. Metaphysical anger. Anger at the world itself for being designed the way it is. Anger at the very possibility that my son’s future could be compromised by a cruel disease whose cause is unknown.
To be clear, I’m a philosophy professor, and for better or worse, and I’d say certainly worse in this case, big questions have always occupied my thoughts. Does life have any meaning? Are we free beings? Is there a God? Can said God be reconciled with all the cruelty and suffering that we see in the world? In my everyday life, I tend to find satisfaction in contemplating these questions. But in relation to my son, my nature had been turned against itself, and all I wanted to do was fade away, disappear, escape, rewind the clock on reality and cry. Which I finally did. I cried and cried and cried in the dark corners of Children’s Hospital that night. I cried and cried until my eyes turned to cinders. I cried out to the world. I cried out for someone to make my son better.
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?
The night passed by slowly. Very slowly. Like a train grinding to a halt, metal on metal, screeching noises. Lying on the couch beside Bech’s bed, I listened to his groans over bubbling sounds from the oxygen drip. I listened to beeps from the monitor. Nurses scuttled in and out of our room every hour. Doors opened and shut. The only saving grace that night was Cheri, who slept with Bech, tried to keep him cool, tried to keep his mind off the itching and the fever and his very poor state of existence. She did a good job. Her motherly powers left me in a state of awe.
Meanwhile, my mind wandered to dark possibilities. An extended hospital stay. Permanent cardiac involvement. Or worse. And I continued to think about the worst. Because I was weak, and Uncertainty was strong. And because children do, in fact, die from KD. What if this were to happen? Could I endure the worst? Could my humanity survive such a thing? I clenched my teeth, pinned my face against the corner of the wall, and contemplated certain ideas I never had before. Maybe it was an unconscious association with the name “Kawasaki,” but thoughts of Japanese culture entered my mind. The ancient samurai warrior philosophy of seppuku, more specifically — of taking one’s own life in the face of the enemy.
“Dad,” said Bechler. “I don’t itch anymore.”
I jumped up from the couch. It was 6 a.m. There was a little gusto in his voice. We called in the nurse. She ran the thermometer across his forehead. 99.7 degrees. The fever had come down a lot. However, it was too early for optimism. It could be the temporary effects of the IVIG keeping his fever at bay. We would have to wait and see if his temperature would stabilize.
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.
At lunchtime, Bech ordered some spaghetti and a juice box. His appetite seemed to be returning, which was a good sign. A knock on the door. Grandpa Dana entered the room, along with his oldest brother, Dillon. Bech’s eyes lit up. His mouth made a spaghetti-sauce grin.
“How ya doing?” said Dillon, who squeezed Bech’s arm gently.
Dillon scanned the room. Cards. Flowers. Balloons. Games. “Bored? Wanna play a game?”
“Sure!” said Bech, his first show of excitement in a week.
Dillon set up the game. In normal fashion, Bech started buying properties, wheeling and dealing in manic fashion, as if he were a young venture capitalist building his empire. In no time at all, he’d established houses and hotels on the yellow and green properties. Dillon’s turn. He landed on Marvin Gardens with three houses. Oh, too bad.
“That’ll be $850,” gloated Bech.
Dillon’s turn again. A one and a four. Bummer. He landed on Pennsylvania Avenue with a hotel. A $1,400 bill to pay. Time to start mortgaging. Dillon was down to virtually nothing. Three turns later, he landed on one of the railroads. “Game over,” said Bech, his spirits clearly heightened.
A nurse entered the room. Time to take his temperature again. Bech was 12 hours post-IVIG, so this was a big moment. Had his temperature gone down? Had it stayed down? She ran the thermometer over his forehead. Drum roll.…
A huge sense of relief. Though he still had a low-grade fever, the IVIG seemed to be working. Moreover, a heart ultrasound later that afternoon confirmed that Bech’s blood vessels had begun to normalize. If the fever stayed down for another 24 hours, the treatment would be considered successful. The KD on its way out the door.
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.
Fast forward three years. Bech is doing well. Very well. He’s an excellent student and a skilled guitar player. In terms of physical prowess, he plays basketball and is close to earning his black belt in taekwondo. Bech is self-motivated, loving, smart and has a killer sense of humor. I really couldn’t be prouder of him. In terms of the KD, I think he’s recovered, and maybe even some good came of it. Though he still gets sick more than average, and though his body still does strange things (e.g., high cholesterol), his illnesses seem less severe. Overall, he seems healthier. His diet is better. We are all more cognizant about health. But KD does change a person. While I couldn’t prove it, I feel like something about his body chemistry is different.
The KD changed me, too. Though I don’t want to paint it all black, the experience took a toll. I gained 20 pounds that I haven’t taken off. I’m gun-shy of sickness in general. Basic colds have a more intense quality. The volume on fevers has been turned up. The prospect of encountering a rash scares me. I’m hyperaware of my son’s health. The color of his lips and eyes. The quality of his skin and fingernails. Is he overweight? Under-active? How’s his energy level?
I’m also less comfortable with the seasons. Winter is when KD is more prevalent. They don’t know exactly why. Could be an infectious agent carried by the winds during certain times of year. Could be that illnesses hang in the cold, dry air. Could be that we congregate more indoors during the winter months. It’s likely that certain people have a genetic predisposition to KD. I hope they discover its cause in my lifetime.
On the other hand, KD did help me finish my second novel, which I’m thankful for. And I think I see the world through a sharper lens. Although it brings me little satisfaction to write about the experience, I feel good about adding to the KD narrative. I hope other moms and dads can feel a little less alone. Beyond that, I want my son to have a record of what happened during those difficult weeks when he was eight years old. I want him to know how much he is loved and how strong his spirit really is. When the Kawasaki motorcycle raged, and when the engine burned his thighs, my son rode that bike to safety until the motor died out. Weak, tired, but still in control, he stepped off, put the kickstand down, walked away.