Saving Henry (21 page)

The phone rang. It was Dr. Wagner who, after reviewing Henry's blood work taken at Georgetown earlier that day, confirmed what we suspected. Henry was in grave danger. We had to return to the bone-marrow-transplant clinic in Minneapolis the next day. We had driven before, but we couldn't do it again. It would take too much time, and Henry's IV pump didn't have a car adapter.

I made a list of all the things we had to do to get to Minnesota within twenty-four hours, and Allen and I took them on, one at a time. Allen started by calling and reserving four seats on a flight the next afternoon, which would give us enough time to finish Henry's eight-hour IV nutrition and to give him his first three IV medications, which would take until eleven a.m. It took Allen a while to make the reservation because he had to explain to the airline agent why we didn't have a return date, and why he thought that we should get a good fare, despite the last-minute booking. The airline wouldn't issue our tickets without a return date, so Allen made up a return
date and took the agent at her word that all Allen had to do was to submit the $4,800 in receipts to customer service at a later date along with a letter explaining the circumstances to be credited with their best fare. This conversation was followed by similar conversations with car rental and hotel booking agents, each of whom were equally uninterested in the intimate and terrible details of our lives, which Allen had to nevertheless explain in order to receive even a small amount of help.

I pulled out our cooler so we could pack two days' worth of Henry's intravenous medications; then it was on to the suitcases, which were still half-packed from our recent stay at Georgetown. We didn't need to bring clothes for Henry since he had lost a lot of weight and his didn't really fit him anymore; he'd be in hospital pajamas anyhow. I threw in enough clothes for Jack and me to last a week. My belly was growing rapidly—I was approaching my second trimester of pregnancy—so it was impossible for me to predict what size clothing I would need beyond a couple of weeks or so. Allen carefully packed Henry and Jack's favorite movies and computer games for the long days and nights in the hospital.

By midnight, Jack was asleep; Henry was hooked up to his nightly feed; we were packed; and we had reservations for our flight, car rental, and hotel. We had left messages all over town; at Jack's school (he'd be out again), at Georgetown's hematology/oncology clinic (we needed to cancel our appointment the next day), my job (they'd have to do with sporadic e-mails for the next while), and on and on. Our parents were put on notice. They would drive us to the airport, cancel the newspaper, forward our mail, cancel Jack's play dates, clean out our refrigerator.

I couldn't sleep. I was too stirred up with worry and fear, so I paid bills and looked through a stack of pictures from better days. I threw away all the pictures that weren't perfect, just in case Henry didn't
return from this trip. Once he died, I didn't imagine that I'd be able to part with anything, even out-of-focus photos. I walked upstairs, past his door, the one with the letters spelling out his name. I wondered whether if he died, we'd ever take the letters down. My mind wandered, horribly, inevitably, to the funeral. I rewrote the eulogy in my head. I'd never be able to deliver it, though, so who would read it? Allen couldn't possibly; maybe my brother. Who would come? Who would officiate? How would I make it through the service, the burial, the day?

The rest of my life?

 

A
t some point, I stumbled into bed next to Henry, who was quietly asleep. I woke up some time later, the beeping of his pump signaling the beginning of another day.

By this time, Henry had lost the use of his left side—we had no idea why—and he couldn't walk. Allen carried him through the terminal. If people stared, I didn't notice. Henry finished his IV meds in the airport lounge, so we didn't have to hook him up in-flight. He slept in Allen's lap. Jack and I read about knights and made snakes out of Play-Doh. A few hours later we made it to our hotel, and Allen loaded Henry up in a stroller and Jack pushed him to the clinic. Henry's hematologist, infectious disease doctor, and a neurologist were expecting us.

Three days later, Henry was hooked up to an IV and the four of us were midway through a Pokémon DVD in the hospital's outpatient bone-marrow-transplant clinic. A nurse came into Henry's room and asked the kids if she could take them for a walk. My stomach dropped, and I felt the hot pricks of fear spread from my scalp to my spine. The doctors had never separated us from the kids to deliver news, and there had been plenty of bad news delivered over the
years. Henry negotiated with the nurse, extracting a promise to visit the vending machine, and then they were off. Jack pushed Henry in his wheelchair.

Dr. Margie MacMillan appeared. She was part of the transplant team, and one of the experts on FA. She told us, without adornment, that Henry had a mass of unknown origin in his brain. He would be admitted to the hospital immediately and a neurosurgeon would perform brain surgery as soon as possible. I was stunned. Nothing I had ever read, and I had read a lot, ever noted that brain tumors were part of the transplant recovery. I was tempted to run and grab the kids and leave that awful place.

Henry and Jack returned with snacks, and we explained that Henry would have to spend a few nights in the hospital. We told them that Henry would get to take some sleepy medicine, and then the doctors would look inside his head to see why he couldn't walk or play basketball.

He wasn't worried. By this time, he'd had anesthesia so many times, he knew all about it: what flavors he liked best (bubble gum or root beer), what it felt like. It was more important for him to get his left arm back.

Several hours later, a neurosurgeon came to visit me in Henry's fifth-floor hospital room and told me he was able to adjust his schedule so he could perform the brain surgery the following morning. The sooner the doctors knew what was causing the problem, the sooner and more effectively they could treat it.

In the first months of Henry's life, we were able to learn everything about tetralogy of Fallot, the heart problem Henry was born with, and to shop around for the best surgeon at the best hospital to perform his open-heart surgery. When it came to Fanconi anemia, we had years to learn the language and review the research and then to choose the protocol, doctor, and hospital that together would give Henry the best chance of survival. The fact that I knew next to noth
ing about the brain or neurosurgery or this particular doctor, and wouldn't be able to change that in the fourteen hours between learning of the surgery and handing Henry over to the anesthesiologist, felt incredibly irresponsible, and almost more than I could bear. I didn't even have a computer to Google the doctor, the procedure, the risks, the survival rate. Given that we had no real alternative, our only choice was to follow the advice of Dr. Wagner, in whose hands we had placed Henry's life nearly one year earlier, and to sign the consent forms. At least we had only a limited amount of time to be anxious and scared.

Henry's brain surgery lasted five and a half hours, but it felt more like 19,800 seconds. Allen and I sat in the same waiting room where one year earlier we had learned that Henry had survived the insertion of his first central IV line, signaling the start of his lifesaving transplant. Since then, we had spent hours waiting for confirmation of what was going right, or for clues to solve the mystery of what wasn't. As I sat quietly, I thought, but never uttered out loud, about the risk of stroke, paralysis, and every other awful thing that could happen. I thought about what the doctors might find. I wondered if I would ever be able to talk to Henry again. Brain surgery was hard enough to endure if it alone were the challenge, but on top of a bone-marrow transplant and what felt like an endless stream of biopsies and surgeries, it was more than I could handle. But what choice did we have, really?

 

“
C
ould you get me a chocolate croissant?” Henry whispered this to me, just seconds after waking from the anesthesia.

“Of course I can,” I said as I fought to restrain the tears that threatened to betray my fear and concern as I took note of the enormous bandage that covered Henry's newest battle wound. “I'd love nothing more than to get you a chocolate croissant.” I broke the no-
cell-phones-in-the-hospital rule and immediately called my mom, who had flown in from Washington to help us. I let her know that the surgery was successful, that Henry was alive, and that he required a chocolate croissant. She and Jack promptly left the Science Museum of Minnesota, where Jack was adding to his deep knowledge of everything dinosaur, and managed to find five chocolate croissants—enough for a celebration.

Five days after Henry's brain surgery, Allen and Jack returned from a trip to LEGO Land in the Mall of America and presented Henry with a LEGO-themed basketball. Henry got that look of determination in his eyes that told you he was about to do something extraordinary. He pushed the button to lower his bed and another to call his doctor. Having assembled everyone, he slowly put his feet on the hospital room floor and steadied himself.

Demonstrating natural showmanship, Henry demanded, “Are you all ready for this?”

In unison, Allen, Jack, my mom, Dr. Wagner, and I all enthusiastically answered his call, “We're ready!”

“Show us what you got, big man,” encouraged Allen.

“Get ready for some razzle dazzle! Here it comes!” Henry exclaimed as he proceeded to dribble the basketball with his left hand, which only days earlier he had been unable to lift. Then he did a victory walk around the room, hands in the air, stopping in front of each of us for a much-deserved high-five.

On May 24, 2001, at 4:30 p.m., without a clear diagnosis of what had caused the problem in Henry's brain, or why somehow now it was all right, Dr. Wagner told us we could go home. Scared that he'd change his mind, we rushed to make a ten p.m. flight home to Washington. After five weeks of living out of a suitcase; eating vending-machine and takeout food; removing Jack from his school, friends, and his own life; and handing Henry off to a bunch of strangers who
performed brain surgery, a bronchoscopy, an MRI, and three skin biopsies, we couldn't wait to escape.

A few hours later, sitting on the plane, I pulled out my wallet. I still had those two tickets to Funland that I'd stuck in there a year earlier. Funland was just below Disney World on Henry's list of things to do when he got Super Better. For months, through the bone-marrow transplant and the stays in Hackensack and Baltimore, through the return trips to Minnesota, and the brain surgery, every time I took out change for the hospital vending machine or a parking meter, I looked at those increasingly worn green tickets and just hoped like hell that each of my boys would get to use one.

On June 14, less than three weeks after sitting on that plane, we were driving down Route 50 toward Funland with the window down. Because we couldn't fit an IV pole in the car and Henry needed all his daily doses of medication, I extended my arm, gripping Henry's IV bag out the window to ensure that it was positioned properly to flow into his IV line. We arrived at the beach just in time for Funland to open. I disconnected Henry's IV and he was free to go. Once there, I handed Henry and Jack each a ticket and they boarded a boat. There they were: Jack flashing his to-die-for dimples, ringing the bell on his boat like a lunatic; and Henry smiling big, surrounded by the stuffed animals he had won at numerous games in the arcade, unaware of the catheter line hanging out of his shirt and the brain-surgery scar on his head.

We had decided to make a short vacation of this trip, and that night, as we got ready for dinner at Nicola Pizza, home of the famous Nic-o-Boli, Henry turned to me. “Can we go to Funland again tomorrow?” he excitedly asked.

“I can't think of anyplace I would rather be,” I said.

We would go to Funland again because at that moment in time, Henry was well enough to go. And because, although we hoped we
had seen our last long hospital stay, we knew enough to go when the going was good. Sure, we had to go right when it opened to avoid the crowds, and we had to carry loads of antibacterial wipes, but the next day, we went again and we had a ball. We understood that trips to Funland were part of what Henry was fighting so hard for.

A
lthough most calendars don't officially mark this date, July 6 is, at least in our household, a very important holiday: Henry's Other Birthday. The first time we celebrated this was in 2001, to mark the one-year anniversary of his transplant. In our backyard, among hundreds of water balloons, face paint, and a huge cake, Henry was surrounded by his cousins, aunts and uncles, grandparents, and a few friends. Compliments of the water balloons he had smashed on his own head, Henry's seven-year-old cousin Michael was drenched. He had scribbled with black Magic Marker all over his face and he proceeded to dunk his entire head right into the “Henry Is Great” cake. I thought Henry and Jack were going to pee in their pants. “Remember when Michael smashed his face in the cake?” became the statement that nearly always followed the mere mention of Michael's name. On subsequent holidays, birthdays, and other occasions, Michael's face always found a way into the cake, and Henry and Jack never got tired of it.

As much fun as that day was, nothing could compare to the excitement we felt two months later. When Henry was born, we learned that it was unlikely that he would make it to kindergarten—an event that stood firmly on the other side of open-heart surgery and a bone-marrow transplant that, according to every available piece of information, had very little prospect of success. But on Tuesday, September 4, 2001, the alarm rang at 5:45 a.m. I woke up excited, and went to work starting the first of four IV medicines that
Henry, age five, had to take prior to starting his day. At 7:45, Henry put on his backpack and the four of us walked out the front door.