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?
“Could 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.
Although 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.
Destination: kindergarten.
As Allen and I watched Henry reunite with Ari and Jake and his other friends from his preschool one year earlier, we snapped some photos and fought back the tears. He had a catheter hanging out of his shirt, was swollen from steroids, and his brain-surgery scar was still visible, but he had made it. Enthralled with all the stuff that makes kindergarten a fantasy world, Henry barely even said good-bye.
Henry’s Favorite Things
• Making funny faces at Joe
• Saying “cheese” or “queso” right before a photograph
• Getting a hole-in-one in mini-golf
• The color gold, particularly when it is sparkly
• Chasing (and popping) bubbles
• Finding lucky pennies
• Slurpees, preferably a cherry/cola mix
16
BELIEVE
Henry left this on my pillow
The Strongin Goldberg Family
Henry was sure about a lot of things. He was absolutely positive that Batman was the best superhero ever, and that Cal Ripken was the greatest living baseball player. He was certain that eating ice cream first wouldn’t ruin his dinner, and that what he had with his girlfriend Bella was true love. He was confident that his Tae Kwon Do training would restore his strength and agility. He knew that root-beer-flavore
d anesthesia, Batman Band-Aids, and the sword that his Papa Sy gave him made all the needle sticks and surgeries hurt a little less.
One thing he wasn’t so sure about was the tooth fairy.
“How can she fly all over the world and collect all the teeth?” he asked suspiciously.
“How do you know there is only one?” I replied. “Maybe there are lots and lots of tooth fairies,” I posited.
“Good point,” he said.
During his first few months in kindergarten, Henry’s friends started to lose their teeth. But not Henry. Henry’s teacher took advantage of the growing number of missing teeth to reinforce her lesson in the use of tally marks. Every week an increasing number of gap-toothed smiles produced more tally marks, but not one of them was for Henry. His teeth wouldn’t budge. He tried wiggling them. He tried wishing them loose.
“Try now,” he said, asking me to feel how loose his tooth was.
“It’s a little looser than yesterday,” I replied. “Definitely.” But in truth, there was nothing doing.
To make sure he was prepared for the big day whenever it came, I bought Henry a small, light blue, silk tooth fairy pillow. It smelled of lavender. The pillow had a little pocket sewn on with small white sequins, and featured the black outline of a tooth. When Henry’s first tooth fell out, he planned to put it in the pocket and then put the small pillow under his big pillow in the hopes that the tooth fairy would pay up just like she did for all his friends.
“Come on, you can tell me. Is she real?” he asked at the dinner table one evening, still a little unconvinced.
“She visited me when I was a kid, how about you, Allen?” I replied.
“You bet,” he said.
“How much did she give you?” Henry asked. Clearly the kids at school were talking.
“I hear the going rate is five dollars for the first tooth,” I said.
“Wow,” he responded.
Henry’s smile in his kindergarten graduation photo showed a mouth full of baby teeth.
By that summer, Henry’s doctors had determined that they needed to extract five of his teeth. The radiation and chemotherapy he had undergone to prepare for the transplant had predictably begun to cause tooth decay. Henry’s still-compromised immune system was too weak to fight infection, making it critical to remove the teeth immediately.
“Will it still count?” Henry asked on the way to have surgery at Georgetown where, in addition to removing five teeth, doctors would also insert a tube to stem his ongoing weight loss, yet another harrowing and enduring transplant complication.
“Of course,” I said.
“How will she know where to find me?” He sounded pretty worried.
“Trust me,” I said. “She will. She’s magic.”
An hour or so later, Henry’s doctors found Allen and me in the hospital waiting room. The surgeries were successful they told us, before presenting us with Henry’s teeth.
“We got the teeth, big man,” said Allen as Henry awoke from his anesthesia. We all went upstairs to settle into Henry’s fifth-floor hospital room for yet another multiday stay. As night approached, Henry stuffed the teeth into the pocket of his tooth fairy pillow, which he carefully tucked under his hospital-issued pillow. Eventually he fell asleep.
As they did whenever he was in the hospital nearby, Henry’s grandparents came to visit. Pop Pop Teddy was first. Figuring that Henry deserved some extra cash, given the anesthesia and all, he rolled up $10 per tooth—or $50—and tucked it into the pocket. Nana and Papa Sy offered up a matching gift and tucked in another $50. When Henry woke up that morning, he reached under his pillow, grabbed the $100, and exclaimed, “She found me!”
The next day Henry shared his news with Jack. “Jackie, the tooth fairy gave me a hundred dollars!” Jack started wiggling his teeth that afternoon, hoping the tooth fairy would find him soon. With a going rate of $20 per tooth, he figured it was a better way to make money than a lemonade stand.
Within days, Henry was discharged from the hospital. Before heading home, Henry insisted that we go to Best Buy, where he procured two new Nintendo Game Boy Advance players, one for him and one for Jack, compliments of his tooth fairy bonanza.
Back home, he couldn’t wait to get back to school. By late fall of 2001, it was his favorite place. He was so excited when it was his turn to be Door Holder, one of the special jobs his teacher doled out. He thought being Milk Helper was pretty great too. And when the time finally came to have his central line removed, he brought it to school in a plastic bag to share at Circle Time.
“This is my line,” he explained to his gaped-mouth classmates. “I finally got it out.” Then he passed it around the circle. The kids were a bit baffled by the piece of white plastic tubing Henry dangled in front of them. Apparently they hadn’t noticed it hanging out from under his T-shirt for the past year. Later, when I asked his teacher, Mrs. Singer, how the children had responded, she explained that the kids—and everyone else at the school for that matter—didn’t look at Henry as being sick, just as a really nice friend, and a really determined student. When Henry would get tired, he would go to the school office and lie down with a blanket and pillow in the spot his teacher had created for him to take a nap. When he was done, he would get up, smile, and say to the school receptionist, “Gotta go to class. See you later!”
And then off he would run.
The only job he was never assigned in school was that of the Get Well Card Helper. This special job was reserved for the times when Henry had to be absent for days and weeks at a time. One student would be asked to collect all the handwritten cards and pictures drawn by the others, put them in an envelope, and get them ready to send to Henry. This job was a quality-of-life saver for Henry, and was, unfortunately, needed a lot more than any of us would have liked.
Henry’s Favorite Things
• Climbing trees
• His bright blue Pokémon bicycle
• Mastering his white-belt basics
• Patagonia long underwear
• Lightsabers
• Wearing flip-flops
• Joe
17
A MOMENT IN TIME
Joe, joy and calm amidst the storm
The Strongin Goldberg Family
Mosquitoes love Jack.
Therefore, it didn’t worry me too much when Jack started to scratch his belly and the first couple of bites popped up. “I’m itchy” just didn’t rank high on the list of concerns in our house, or probably anyone else’s for that matter, especially one week after September 11, 2001, when it felt like the whole world was falling apart.
An hour later, Jack was still scratching, so I lifted up his shirt and noticed that he had about a dozen red bumps on his belly. I gave him some Benadryl and put some calamine lotion on the bites and he rejoined Henry, who was watching Pokémon 2000 for the two-thousandth time. I returned to the kitchen where Allen and I resumed our position in front of our small black-and-white TV, watching the jaws of death make its way carefully through the pit of destruction that was once the World Trade Center. The camera focused on the sad, shocked faces of family members walking through the streets, cradling pictures of missing loved ones whose lives they didn’t even have a chance to save. Watching this horror, for a few moments I forgot about my problems.
But then something struck me: it didn’t seem right. “Why are the bites only on Jack’s stomach?” I asked Allen. Before he could answer, I added, “I don’t have any, and I always get more than anyone.” Jack and I were in the backyard blowing bubbles together the night before. Allen said he’d go take a look.
While Allen was in the other room, my mind started to wander. Could it be a rash? But Jack had never had a rash on his body before. We hadn’t used any new detergent and he hadn’t eaten any new foods.
Could it be a bad thing—the bad thing? Could it be chicken pox?
“No!” I yelled to Allen in the other room, as if we had been having a conversation about the possibilit
y. “No way. There is no way that is chicken pox!”
Jack had gotten vaccinated against chicken pox four years earlier when he turned one, mostly to spare him from getting the virus, but also to protect Henry. When the chicken pox vaccination, Varivax, first became available in 1995, it was an enormous blessing for parents of immune-compromised children like Henry, because a disease like chicken pox can cause bacterial infections, such as pneumonia, which his body was too weak to fight. We vaccinated Henry and Jack at our first opportunity, and every teacher and friend knew to call us immediately if they heard of a case of chicken pox, so we could watch and pray that it passed over our house.
“I think it’s just a bunch of bug bites,” Allen said, walking back into the kitchen. I wasn’t so sure. I turned off the television and went straight to my computer. While I searched the Internet to confirm that Jack could not possibly have the chicken pox, Allen called our pediatrician to describe Jack’s symptoms: itchy red bumps that resemble bug bites, no oozing, no bleeding, and no fever. Jack was a little uncomfortable and tired, but otherwise was fine. They couldn’t make a diagnosis over the phone, so Allen drove Jack to the doctor for an assessment while I called Dr. Gillio to see what we needed to do if Jack had the chicken pox.
As I waited for Dr. Gillio to come to the phone, I continued to Google “chicken pox” and frantically looked for more information: What chicken pox looked like. Whether you could get it after being vaccinated or from someone who had been vaccinated. Whether Henry’s bone-marrow transplant could have rendered his vaccinations useless. How chicken pox were transmitted. How they were treated. Whether there was anything we could do at this point other than wait. And if getting them really meant Henry could die.
Saving Henry Page 19