Chapter 1 – The Black Swan Lives

Economists call it a Black Swan Event, that out-of-nowhere piece of news that changes everything.  One morning it shattered the peace of my quiet pre-dawn coffee hour just before the Fall 2018 semester was about to kick off, when a sliver of dark pink sky opened up across the distant Pacific horizon that just about matched in color the cascade of red numbers running down my computer screen inbox, blood numbers, my son’s CBC report from Clinical Labs.   

Kenken had been bruising up like any normal rough-and-tumble ten-year-old kid, his shins pocked with purplish spots of varying shades for months now. My wife Noriko, a Critical Care Nurse in Hilo Medical Center’s ICU, would point out the discoloration once in a while, and I’d always dismiss it, wish it away, deny it. But when a fist-sized purple map of the Big Island spread out over his chest one afternoon while he was wrestling in the pool with a friend, she insisted on getting a blood test. 

And here were the results: these red numbers, WBC, RBC, Hemoglobin, Platelets, ANC, all of them vague and abstract to me…what’s this list on the right, all black? Normal Range…WBC…is that White Blood Cells?…RBC…Red Cells?…Platelets…Normal Range…165-250. 

37 

Kenken’s platelet count was 37. What the hell could that mean? 

You could read the answer on the face of the toughest person I know. Noriko had moved to Hawai‘i at age 26, her English so weak it took her two hours to read a single question in her NCLEX study guide. Four years later she scored in the 86th percentile on that licensing test, even after having blown out a disc along the way lifting huge patients as a CNA. Now she routinely put in 12-hour shifts in the ICU war zone, where the patient load is dominated by “Frequent Flyer” meth addicts who scream “Jap!” in her face as she works to save their lives, again, before returning home to enjoy a nice family dinner with us as though nothing had ever happened.   

Uncharacteristically awake at this early hour—she’d been waiting for this email—she took one look at the screen and— 

—No! No! No! No! No! 

Google said he had leukemia. 

I tried calling Rudy—he had contacts at M.D. Anderson, the Mayo Clinic. 

I tried calling every doctor I knew. 

Chris picked up the phone, all the way in Virginia. Good braddah since 5th grade in Mr. Shea’s class, now deep into a career as a chiropractor that had long since branched out into nutrition: You know anything about blood numbers, brother? 

“Sure. Whose numbers?” 

I couldn’t even answer him. 

“Oh no,” I heard him say. “C’mon. What.” 

I couldn’t even talk. The floodgates just opened right up. 

Kapi‘olani Hosptial for Women and Children, Hawai‘i’s only pediatric hospital, is a plane ride away. At least Barb worked there—I’d known her for more than thirty years, since back when she was an RN there, even then on her way up to a top admin position. She very calmly started talking about Kapi‘olani’s partnerships with Seattle Children’s Hospital, about the incredible…psych team…that transitioned children into and out of…long-term care…months… 

“We’re going to get him the care he needs.” 

Within minutes Noriko and I were living on a different planet with a different color sky. You could sell the rental we’d built on the lot next-door. You could get a couple hundred grand equity out of the house we lived in. Fuck, you could just sell our house too, move to Texas for a year at M.D. Anderson, or Honolulu if it was Kapi‘olani, fly back for classes. And why the fuck had we ever blown like seventy grand on a swimming pool?   

Sell it all. We’d been a one-car family for years, even after Kenken was born. Do we even use the bikes? Isn’t one surfboard enough? That guitar I never play? 

My 401(k): around $150,000. 

Noriko’s: around $115,000. 

A 403(b): another $30,000, plus another $15,000 in Kenken’s 529. 

Yesterday it had really looked like a lot of money.

I looked downslope at the rental we’d built, a little two-bedroom whose mortgage we were chunking down at an ambitious $1800 per month. We hadn’t even really needed any income from it less than an hour ago. We’d only bought that empty lot and built on it so nobody else would, so we wouldn’t wind up living next to an Airbnb. Ryan was living there with his wife Jen and his son Stone. For free. Talk about Black Swan Events—their home had been covered by lava a few months ago when the earth split right down their street. I remember thinking, I’ve gotta help Ryan—he’s lost everything. 

All of a sudden, him, his wife, his son: he hasn’t lost anything. 

Anyway, there was no need for Noriko and me to discuss it. It was all on the table. Every penny. Because if we were to lose Keneken, well, even right there in the kitchen mentally listing off all of the assets I could cash in, I was also simultaneously weighing the best options for just ending my life if we were to lose our son, like, what would be the point of any of it? The only reason we’d built the pool was to attract Kenken’s buddies to our otherwise childless neighborhood. The rental? I’d built it with my own two hands, always with that distant day in mind when Noriko and I were old, ready to downsize so Kenken could raise his own family in our house. The 529? A college fund? 

Right away we both started hustling, grateful, on another level, for the optionality these assets gave us to even consider taking a year off, or flying to Texas or Philadelphia or wherever it was where they had a program that could save Kenken. 

That very day Noriko added three extra monthly 12-hour shifts (one of them just to cover the cost of changing our 80-20 to a 90-10 medical plan). I added an extra class: $7,000 in overload pay. We had to give Ryan a six-month deadline to find a new place so we could finally rent the rental. One of my books had miraculously caught the attention of an indie film producer who wanted to hire me for a one-time consulting gig—it’s happened before but I always turn it down. This time I put the effort into juggling things around right here at the start of a busy semester to make it happen, a four-day trip to Tokyo, five grand. 

Like flipping a switch, we cut all expenses down to where they’d been back in Honolulu when I’d been slaving through grad school on a $12,000 stipend and Noriko had been studying for the NCLEX on nurse’s aide minimum wage. For over ten years I’d run from my department’s nudging to offer summer classes online, both “summer” and “online” standing directly against my religion as an educator. Now I ordered a video camera and signed up for two classes the following summer. It would help me learn—this was pre-COVID—I’d learn how to make this online teaching thing actually work, just in case at some point I’d have to do it from…The Ronald McDonald House…while Kenken worked to grow his hair back…in the Pediatric Bone Marrow Failure Center…the Children’s Hospital of Philadelphia. That, plus, if the two summer courses ran, I’d get another $14,000, and right now, we needed all the money we could get our hands on. 

Then the Pool Guy showed up. 

He pulled his truck up our driveway, as usual, at around 5:00 p.m. on Wednesday. 

Except this time, along with his net and hoses and shock chemicals, he came armed with a brand-new idea, one Noriko and I would never have even considered. 

To Be Continued

The Professor, the Pool Guy, and the Paniolo is a serial novel by Mark Panek, David Gagne, and Shane Kalaniopio.

Image by Rachel Marker.