More Than You Can Handle: A Rare Disease, A Family in Crisis, and the Cutting-Edge Medicine That Cured the Incurable

by Miguel Sancho

Overview

Now in paperback. The personally harrowing and medically enthralling story of a family's struggle to save a child from a deadly immune deficiency.

A journey through the deepest valleys and highest peaks of parenting. When a two-month-old baby falls ill, his apparently ordinary symptoms turn out to signal a rare and lethal immune deficiency. For parents Miguel Sancho and Felicia Morton, the discovery that their son, Sebastian, has chronic granulomatous disease (CGD) upends their lives and leaves the family with few options, all of them terrifying. With Sebastian at constant risk of deadly infection, they spend the next six years in some degree of self-quarantine, with all its attendant anxieties and stressors, as they struggle to keep their son alive, their marriage intact, and themselves sane.

The quest for a cure leads them into the alternate universe of the rare-disease community, and to the cutting edge of modern medicine, as their personal crises send them fumbling through various modalities of self-help, including faith, therapy, and meditation. With brutal honesty, Sancho describes how his struggles derail his career, put his marriage on life support, get his family evicted from a Ronald McDonald House, and ruin a Make-A-Wish trip.

Sancho's riveting tale of the diagnosis and treatment of his son's illness takes us deep inside the workings of the immune system, and into the radically innovative treatment used to repair it. Ultimately Sebastian is saved with a stem cell transplant using discarded umbilical cord blood, a groundbreaking technique pioneered and practiced by the medical wizards at Duke University Hospital.

Deeply researched and darkly humorous, this is a wrenching tale with a triumphant ending.

Product Details

ISBN-13:	9780593421369
Publisher:	Penguin Publishing Group
Publication date:	03/01/2022
Pages:	336
Product dimensions:	5.45(w) x 8.22(h) x 0.84(d)

About the Author

Miguel Sancho is an Emmy Award-winning television producer currently show-running and developing series and specials for A&E. For seven years he helped run the ABC primetime news magazine 20/20. Prior to that, he was an investigative producer at 20/20 and CBS News's 48 Hours. He lives in New York with his wife, Felicia Morton, and their two children, Lydia and Sebastian.

Read an Excerpt

Chapter 1
Please Fasten Your Seat Belts

Daddy: a touching term of endearment, an exalted job title, and presently-"Daddy!!"-a blaring distress signal.

The scene: Delta flight 6056, a claustrophobic regional jet as tight on legroom as food options, en route from LaGuardia to Raleigh-Durham, North Carolina. Me in seat 12C, splitting attention between the Sky magazine crossword and my seven-year-old daughter, Lydia, seated next to me and enraptured by the images on the laminated safety card. Two rows back and across the aisle, my wife, Felicia, and our three-year-old boy, Sebastian. The captain had just announced our impending descent in his best The Right Stuff voice of practiced professional calm. The Fasten Seat Belt sign was on.

"Daddy!!!!!"-my wife using my domestic moniker, her voice almost a Jamie Lee Curtis horror movie scream the second time. I whipped my head around, spilling a plastic cup of Diet Coke into my lap as I fumbled for some way to help. I turned just in time to witness a small fountain of vomit, the tapioca pudding variety, spewing from our son's discolored lips onto Felicia's blouse. My wife looked at me with her big brown eyes, silent, blinking back panic. Then she tilted her head down to the convulsing child prostrate in her lap, his head rolled back, lifeless. An economy class pietˆ.

"His head is burning up!" she announced to the cabin, just as he went into some kind of seizure or febrile spasm. I didn't know the difference, which made it all the worse.

There may be circumstances less hospitable to medical emergencies, but aside from some vivid memories of the aftermath of the 2010 Haiti earthquake, none came to mind as I remained strapped, seated, and upright, lifted my arm, and pressed the flight attendant call button-a profile in impotence.

Lydia, preternaturally serene, tugged my sleeve and pointed to the safety card's diagram of a water landing. "What if this happens?" she mused with wonder. I shut my eyes and conjured an image of Sully Sullenberger, mentally beseeching his avuncular, disembodied face for guidance. Waddya think, Sully? How would you handle this one?

The image pursed its mustachioed lips and shook its head.

Like any disaster movie, this trip had begun as an exercise in quotidian blandness. Booked on Expedia months in advance, it was conceived as the latest in a long series of medical tourism weekends for our family. Three and a half years prior, Sebastian had been diagnosed with CGD, an extremely rare, often lethal immune deficiency with which he'd been born. The diagnosis ripped through our lives, careers, and relationships like a twister through a Missouri trailer park, and we'd spent every day since in some degree of distress-sometimes quiet, often loud-as we struggled to keep him out of danger, out of the ICU, out of the grave. Vacations were one of several aspects of our lives that had been radically recolored. Now if we ventured outside our domestic safe zone, the destination was usually one of the country's top children's hospitals as we pursued an Arthurian quest for a cure.

That quest had led us to North Carolina. Today's itinerary included this Delta flight to Durham, a rented Dodge Caravan, and an appointment at Duke University Hospital for a meet and greet with the team at the Pediatric Blood and Marrow Transplant Unit, possibly the only people on earth who could rid Sebastian of his disease. The transplantation procedure is among the most grueling in modern medicine, so before we committed, the doctors wanted to walk us through the process, show us the facilities, run some preliminary diagnostic tests, and lay out a timetable for when we'd move down from our Westchester County home to begin a yearlong "journey"-the preferred euphemism for "ordeal." If we had time, over the weekend we'd explore local housing and school options. Simple enough.

Any travel plan involving a chronically ill kid is risky, but Sebastian had been doing so well the past few months Felicia and I summoned enough optimism to forgo travelers' insurance. I even had the audacity to snag two tickets to a Billy Joel show at Madison Square Garden earlier that week. Neither of us is a huge fan-to be frank I'd rather get a Brazilian wax than endure a performance of "We Didn't Start the Fire"-but this was a rare opportunity for us to have a proper date night and recapture some of our pre-kids, pre-diagnosis frisson.

Fate put those plans in the shredder. Five days before our scheduled departure Sebastian came down with a mysterious fever, accompanied by a nagging cough. For most parents of a kid that age, that's a plain-vanilla health issue. Just dose the kid with acetaminophen, crank up the bedroom humidifier, and wait three days for the clouds to part.

Not so with parents of the immunodeficient, who regard fever and cough much as ancient Roman diviners evaluated an abnormal sheep liver or a statue struck by lightning. Bad omens. The first sign of symptoms triggered a response routine that, while well practiced enough to be second nature, was still sufficiently stressful to make our innards do the lambada as we awaited an accurate diagnosis. Calls to the pediatrician, blood draws, cultures, chest X-rays. All the while that merciless cough, a periodic honk in the throat mixed with the hideous sound of mucus whipping around deep in the lungs, marked time through sleepless nights-the body's version of a smoke alarm's low-battery chirp.

The timing simply sucked. I was on the tail end of a labor-intensive project at work-I was a television news producer and late nights of kung pao chicken and 1 a.m. Uber pickups had become frequent enough to pass for a lifestyle. That week my extended obligations at the office meant stiffing Felicia with the lion's share of the parental responsibility. She'd cut back on her professional life as a PR consultant to become Sebastian's primary caregiver years ago, but despite her expertise a situation like this was tough to manage alone. An hour tending to a sick child passes like three hours of regular life; after four days the experience is a masonry grinder for the mind.

The fever oscillated between 102 and 104, but it never broke. A doctor at a nearby hospital eyeballed an X-ray, ruled out pneumonia, and decreed we had nothing but a run-of-the-mill virus on our hands. In theory we could manage that, but as the symptoms persisted, Felicia's customary suspicion of the local sawbones prompted a call down to the experts at Duke for advice. Should we proceed as planned with the trip or postpone until Sebastian was in better shape to travel?

"They didn't hesitate," she reported over the phone as I sat amid a pile of scripts on my office desk. "They said he needs to get down there right away. Whatever he's got, they can handle it best if he's there."

"And . . . "-indecision decelerating the pace of my speech-"what are you thinking?"

"We need to go. Something's not right. I know my child."

That last bit was code for "Don't question me," a declaration of steely resolve that, in this instance among many others, likely saved our son's life.

The next morning our plane was wheels up on schedule and it appeared fortune had granted us a respite. Sebastian's fever dipped to 101, not great but tolerable, and his affect was on the upswing as he peered out the window, digging the g-force of the takeoff. Rikers Island, then the Archie Bunker blocks of Queens and the rest of New York, receded behind gray cotton candy clouds. But somewhere over the Chesapeake Bay the shit hit the fan. Fever, barf, spasms, terror.

Our worst-case scenario was now, indeed, the case. It looked like our son was infected with an unknown pathogen against which he was defenseless, and it was spreading throughout his lungs. Most people don't give it much thought, but the biology of infection is as scary as it is gross-another life-form invades the body, feeding off it parasitically as it grows and multiplies. Unchecked, the microbes chew away at healthy tissue, eventually commandeering so much space and resources to trigger organ failure. The body-in this case our three-year-old child's beautiful little body, clothed in a Thomas the Tank Engine sweatshirt and shod in Velcro-strap sneakers-literally gets eaten alive . . . from the inside.

Sporting an expression that somehow conveyed both kindness and exasperation, a flight attendant worked her way up the aisle in response to my call. I noticed that Sebastian had wet himself. The spilled Diet Coke in my lap made a matching mark on my slacks-the shape of a gerrymandered Massachusetts congressional district. I reached for a napkin and covered my crotch as I asked her what could be done. There was some first-aid equipment stowed in the rearmost overhead baggage compartments, she explained, but while the plane was in its final descent it was illegal to access it. We were on our own. The one option was to radio ground control to have an ambulance intercept us on the runway if this was indeed a matter of life and death.

Was it? How the fuck was I supposed to know?

Big decision, little information, even less time. I did what came naturally: I froze.

"Let's give it a few minutes," Felicia said from her seat as she wiped vomit from her blouse with some Huggies baby wipes and stuffed them into the air-sickness bag. "Just . . . give it a few minutes. And pray . . ."

The flight attendant bestowed a sympathetic pat on my arm and worked her way back to her jump seat. I faked a smile at Lydia as she pointed to a carpet of North Carolina oak and hickory trees that had just come into view as our glide path brought the Embraer 170 down from the asphalt sky. The fuselage shuddered from mild turbulence. The captain came on the intercom once more and, in a voice more firm than gentle this time, explained the nonnegotiability of the FAA requirement to stow all tray tables. Apparently a recalcitrant Tar Heel six rows up had her own opinions on the matter.

My son was whimpering; my wife was weeping; my daughter was elsewhere. I gripped the armrest. Instead of praying, I tried to remember how it had all come to this. . . .

It is the immutable duty of any storyteller to recruit a measure of sympathy for the tale's protagonists. With Felicia, that's a layup. An only child, Felicia grew up in the distinctly middle-class Chicago neighborhood of Albany Park.

Her mom was a free-spirited Canadian idealist; her dad, a soft-spoken Appalachian man who'd made his way from the mountains of West Virginia to the big city and a union job on the floor of a large toy manufacturer. Their house had Glen Campbell on the turntable and the Holy Bible on the nightstand. Her dad stayed true to his rural roots, growing berries, beans, and even corn in the backyard, referring to his garage as "the barn." Felicia heard him saying his prayers each night, thanking God for his home and his family.

From that upbringing emerged a well-traveled, outspoken, and independent woman, possessed of what her mother's Finnish forebears called sisu, their word for perseverance or grit. At least that's how she appeared from the outside. By her own account, she also harbored deep insecurities and a need to prove to herself and to the world that she was good enough.

Tall, slender, brunette-she made a great Olive Oyl or Morticia Addams at Halloween. Teenage rebellion for her meant cranking Erasure and New Order, hanging out with dangerous boys, digging the head rush of Djarum clove cigarettes.

On the strength of her own brains and willpower, she'd gone to college and graduate school, lived and worked in Prague for three years, and cultivated a keen taste for fashion and opera. She'd moved to D.C. and launched a promising career as a print journalist, writing for online editions of the Washington Post and the Wall Street Journal. A stint as an online tech columnist left her feeling empty, and, compelled by an innate desire to help others, she moved to Manhattan to try to make a difference post-9/11. She started volunteering for victims' family efforts and landed a job with an international PR firm.

We met through mutual 9/11 connections and commenced a classic New York love affair. (This was not the first time something beautiful blossomed against a background of crisis and destruction, and for us it would not be the last.) Within months I edged out a wolf pack of other suitors and convinced her to marry me-perhaps our mutual appreciation of inane puns sealed the deal-and we looked forward to starting a family. In the meantime she'd launched her own boutique public relations consultancy. By any measure, she'd done well for herself. Moreover, she was funny, humble, and if anything, too considerate of others. By no means was she a saint, but her imperfections were easy to overlook. She is the hero of this story.

As for myself? I can say this: I've tried. Tried to be a principled person, a loyal friend, a good employee, a devoted husband and father. My ambitions were precisely this: to have a family I loved and a job I didn't hate. But along the way some things I expected to be easy turned out to be hard; some things that were supposed to be hard turned out to be easy. Still others turned out to be too easy. In its own way that can be a curse.

Table of Contents

Introduction ix

Part I Wars Without Guns, May 2012 March 2016

Chapter 1 Please Fasten Your Seat Belts 3

Chapter 2 Welcome to Hospitalworld 15

Chapter 3 Overboard 31

Chapter 4 PWASK 43

Chapter 5 Off to See the Wizard 55

Chapter 6 Zugzwang 67

Chapter 7 A House Divided 81

Chapter 8 Cheever Country 101

Part 2 The Chimera Factory, March 2016-November 2016

Chapter 9 Q-tips 119

Chapter 10 Please Sign Here 141

Chapter 11 Conditioning 159

Chapter 12 Happy Rebirth-day 177

Chapter 13 HODL 189

Chapter 14 Engraftment 203

Chapter 15 Get Out 215

Chapter 16 Repair 233

Part 3 Homecoming, November 2016-October 2018

Chapter 17 High on Gratitude 255

Chapter 18 The Calving Glacier 269

Chapter 19 A Dog Named Hope 283

Acknowledgments 297

Index 301

Editorial Reviews

An extraordinary book…by turns harrowing and heroic and darkly humorous, it is a must read for any family confronting an unimaginable diagnosis. I couldn’t put it down.  You will laugh, and you will cry, and you will be moved by the profound courage of ordinary people."
–Elizabeth Vargas, New York Times bestselling author of Between Breaths

“A heart-wrenching story of what a parent dreads the most: to hear their child has a deadly disease. We are with the family as they struggle to find answers and hope in a situation where there is little of either. A poignant and triumphant story of one family’s journey through the intricacies of medicine in a desperate bid to save their child.”
–James R. Doty, MD, New York Times bestselling author of Into the Magic Shop

“More Than You Can Handle is must-reading for those who glibly think that God will not allow us to be tested to the uttermost if we are just faithful persons. For anyone who has gone through such experiences and come out on the other side, this is medicine for the soul. As it turns out, the road to triumph often leads through, not around, tragedy, but then Christians should know this from the way the story of Christ ends.”
–Ben Witherington III, author of Who God Is

“An extraordinary story in the hands of an equally extraordinary writer. Armed with an unflinching honesty that every parent of a child with special needs (medical or otherwise) will appreciate and recognize, Sancho’s story will help many families see a light at the end of a long, dark tunnel and—even better—how their child (no matter what age) will help them find it.”
–Cammie McGovern, bestselling author of Eye Contact
 
“Filled with insight, uncommon self-awareness, and, yes, humor, Miguel Sancho guides us through the pain, confusion, and challenges of saving a sick child. His honesty about his own struggles and mistakes make this an especially unexpected the story. Without question, an inspiring book.”
–Sharon Salzberg, author of Lovingkindness and Real Change

“More Than You Can Handle is a magnificent achievement. Miguel has written an inspiring book without one sentimental paragraph. His chronicle has many hero's, including the brave young Sebastian; his mother, Felicia; and the doctors and nurses at Duke. One day Sebastian will read the book and realize he is blessed in having such a father.”
–Laurence Leamer, author of Mar-a-Lago

“Miguel Sancho’s memoir of how a rare disease almost killed his young son, Sebastian—and about how his own anger almost destroyed his marriage—is at turns raw, sobering, funny, and provocative. He writes with rare clarity about his own failings, but also about what holds a family together.”
–Amy Davidson Sorkin, staff writer, The New Yorker

From the Publisher