Saving Henry (17 page)

Four weeks into his recovery, Henry's blood counts were showing a consistent increase. This meant that he was better equipped to fight off infection and that Jack could visit him in the hospital. Before entering Henry's room, Jack stopped at the cleansing station outside Henry's door. He scrubbed his hands and arms for the length of a barely audible rendition of “Happy Birthday,” which was supposedly enough time to sanitize them, and we placed a protective mask over his mouth and nose to ensure that he did not expose Henry to any germs he wasn't strong enough to fight. At three, Jack's face was small, and once he had his mask on, only his eyes showed. They were sparkly. He left his dirty, light-up Power Ranger sneakers outside the door to Henry's hospital room, and eagerly entered.

“Hi, Henry!” said Jack.

“Hello to you,” Henry responded enthusiastically. “Want to
watch a movie?”

And with that, the Dynamic Duo was reunited after nearly four weeks apart. For the rest of the afternoon, and long into the evening, Jack lay in the chair next to Henry's bed and they watched Pokémon movie after Pokémon movie. Eventually Henry fell asleep and Jack took out his Game Boy and played games, content to be with his big brother.

Jack's quiet and calm in the face of adversity brought wisdom and a sense of peace to our family, and made him someone Henry wanted to be around, regardless of how he was feeling. While most three-year-olds have a hard time sitting still or keeping quiet, Jack was content to spend that night—like so many other days and nights—hanging with Henry, even if that meant quietly waiting beside his bed until Henry was ready to wake up.

During these periods of isolation, Jack also seemed to sense his role as Henry's conduit to the outside world. Whenever he ventured out, he often wanted to get something to bring back to Henry. Sometimes it was a map of the local zoo, so Jack could explain to Henry where every animal was, what species or genus it was from, and whether it had any unique characteristics. Other times it was a chocolate croissant or Skittles or some other longed-for food. Jack never made Henry feel as if he was missing out on anything. In fact, I think Jack looked at wherever Henry was as the place to be, and often he couldn't wait to get back there. As long as they had each other—and plenty of movies, cartoons, Batman and Pokémon figures—they were more than content.

 

E
lated.

That is definitely the best word I can use to describe how I felt on Day 34, when Henry was first released from the hospital. Actually, it would be more accurate if I could take the word, blow it up
1,000 times, and surround it with bright flashing lights, Vegas-style. It was a huge milestone because it meant that his bone marrow was functioning and his immune system was strong enough to leave the safety of the hospital room. And more important, it was a major sign to us that his doctors had faith that he would survive.

There had been a lot of small, significant steps leading up to this day, as Henry was slowly emerging from being a very sick boy to being himself. He got out of bed, and we cheered. Then he was strong enough to stand. Then he was allowed out of his room and onto the transplant floor; first in a wheelchair and then walking on his own. He'd wear a protective face mask and trail a very cluttered IV pole behind him—a tangle of pumps, tubes, and bags of medications flowing into his body. On the first day he was allowed outside, Allen sat with him on an overcast day in the hospital courtyard and later told me that for the first time in weeks he thought to himself:
Henry is going to make it home.
I was so happy that Allen had the honor of being the first to see Henry reentering the outside world. Now we each had our own special firsts.

On the day itself—Day 34—I walked into Henry's room, grabbed blue and orange markers, and wrote on the dry-wipe board on the wall, usually crowded with daily medical instructions:
HENRY IS GOING HOME
! We then carefully set Henry, who was still weak from the medication and the number of days he had spent lying in bed, into a red plastic Radio Flyer wagon.

“I can do it all by myself,” said Jack, as he pulled the wagon, and Henry, out of his room, down the hall, into the elevator, across the lobby, and out of the hospital. That's what sidekicks and best friends do.

The apartment in Minneapolis seemed so much more like home once Henry was back with us. We were all so excited, as it was the first time in more than a month that we would all spend the night in the same place. When we arrived at our apartment, Henry had a
package waiting for him from our friend Ashley Stringer from back home. He had sent Henry a huge gold trophy he had won in a soccer tournament and which he wanted Henry to have. Henry loved it. He held it up in the air with a huge smile and a bald head. He was a champion.

We couldn't return to DC for at least another two months because Henry had to continue to see his doctors daily, but at least we were all back together. I had attended an hour-long discharge class at the hospital a couple of days before Henry was ready to leave the inpatient transplant unit. By that time, I was proficient at changing the sterile bandage that protected his catheter site. My prior experience had merely involved Neosporin and Band-Aids over scraped knees. To change Henry's bandage required wearing a mask and sterile rubber gloves and unfolding a disposable cloth on which I laid out alcohol swabs, Betadine antiseptic swabs, gauze pads, adhesive tape, adhesive remover, and a sterile Primapore bandage. The first time I saw this display of materials and observed the bone-marrow-transplant unit nurse doing the “sterile bandage change,” I hearkened back to the day we brought Henry home from the hospital when he was born. I had watched my mom change his diaper and his undershirt and thought to myself, “I'll never be able to do that on my own.”

The day before we left the hospital, Henry had a nurse who tended to him twenty-four hours a day; the day we left, he had a mom who did. When we arrived at our apartment in Minnesota, a nurse met us with a week's worth of medical supplies: dozens of vials of heparin and saline; 10cc and 5cc syringes; catheter valves and replacement caps; cannula clamps; a case of alcohol swabs, Betadine swabs, and Primapore bandages; a pump to deliver Henry's IV nutrition; tubing for the pump; a cooler with three bags of his IV nutrition (more would be sent after the following day's blood test revealed other nutritional deficiencies). This filled four large
cardboard boxes and, when added to the supply of cyclosporine, fluconazole, acyclovir, Bactrim, and nystatin that Henry took by mouth a total of seventeen doses daily, it looked like more than my background in public relations and community development could handle. I listened intently and wrote furiously as the nurse showed me how to program Henry's pump so it would administer the nourishment he needed through the night to grow stronger. Back at the hospital, each of these things seemed like one more thing that would help Henry get better. In our apartment, each seemed like one more opportunity I had to mistakenly kill him.

There were so many things to learn and do, it was easy to avoid finding time to figure out what to be scared about or what to talk about with Allen or my mom or anyone else. By the time I hooked up one antibiotic, it was time to take the next medication out of the refrigerator or to give Henry a sponge bath or to try to convince him to eat something—anything. Before I could complete whatever I was trying to do, the pump would beep, signaling the end of one medication and the start of another. With more than eighteen different medications a day, this routine continued around the clock. It was rare that I slept more than thirty minutes at a time.

Once Henry was discharged from the hospital, one of the first things he asked was if he could get a karate instructor so he could begin working on his white-belt basics. After seeing Batman put his karate skills to masterful use, Henry wanted to give it a try. Plus, he was incredibly determined to get strong. The strength of the chemotherapy was apparent from Henry's bald head, but it was powerless against his endless desire to master new skills, build his strength, and defeat Fanconi anemia. Henry and his martial arts instructor, Anthony, who, to Henry's enormous delight, had played a Blue Power Ranger in the
Power Rangers
television series, worked together several times a week.

After his lesson one afternoon, Henry announced, “I'm ready to
show you my form. It's called the Young Han.” Anthony nodded to Henry, who was dressed immaculately in his white karate uniform cinched with his white belt. They each stood with their feet together and took a bow.

Anthony yelled, “Ready stance! Fighting stance!”

Henry followed Anthony's commands and together they yelled, “Hi Ya!”

Anthony continued: “Step. Punch. Two kicks. Step. Knife hand. Snap punch. Turn. Step. Punch. Step. Knife hand. Two kicks. Snap punch. Turn.” Henry methodically did every move with Anthony and at the end exclaimed, “Hi Ya!” just before he took his final bow. Jack, my mom, Allen, and I gave him a standing ovation.

I was thrilled one day, not long afterward, to get a call from my friend Val Syme.

“How's it going?” she asked.

“He's back with us,” I said, unsure, exactly, of how to answer that still-unanswerable question.

“Great. I'm coming to visit you,” she said from her cell phone in New York.

“That's crazy!” I told her. “You have no idea how insane it is here.” A few days later, Allen picked Val up from the Minneapolis airport and that night, my mom insisted that she stay at the apartment with the kids while Allen, Val, Steven Goldstein, and I go out to dinner. Val is loud and funny and reminds me a lot of myself when I'm not scared and in desperate medical straits. Sharing tales of the life of a single New Yorker over food that did not come delivered in a paper bag, she made me laugh out loud, which felt so good and so hopeful, and like something I hadn't done in a very long time.

When we returned to the apartment, relaxed and full, Val turned to my mom. “Nana, what did you have for dinner?” she asked.

My mom confessed to not have eaten anything. Val looked at
her in disbelief, and then grabbed my mother's hand.

“You're coming with me.” At ten p.m. Val was out with my mom, sharing her second dinner of the evening.

That dinner was the very least of everything that my mom deserved. She did so many things that made our life easier while we were in Minneapolis—and even when we weren't—that it is impossible for me to adequately describe, and even harder for me to properly thank her. She made a pot of hot coffee each morning. She stocked our refrigerator with vegetarian food for me, dairy-free food for Allen, and everything that Jack or Henry even mentioned that they liked to eat. She bought books for Jack; and Pokémon and Batman figures for Henry. She took phone messages and returned calls. She helped me negotiate with the insurance company. She encouraged me and Allen to take a walk or Rollerblade around the lake so we could share some quiet time.

She held us all together.

 

D
r. Wagner, Henry's transplant specialist, was also the doctor for the other PGD pioneering family, the Nashes. They had long since given up waiting for us and had found other doctors in Chicago, who gave them a chance to save their daughter, Molly, through PGD. While we were still in Minneapolis, the Nashes arrived with Molly and new baby Adam, conceived through IVF and PGD. The stem cells from Adam's umbilical cord enabled Molly to sail through her transplant. I was genuinely happy for them, but it was hard to have a front-row seat to watch PGD fulfill its promise.

While they recovered from their transplants, Henry and Molly slipped out of their isolation rooms so we could take a group photo of the two families. We had suffered the same diagnosis, held on to the same dream, but no longer shared the same fate. It was hard to
sort out the tangle of feelings. I felt vindicated by the success of their PGD, victimized by our own failure, and overwhelmed with fear for Henry's life. I was certain that pursuing PGD over and over again had been absolutely the right thing to do. Molly Nash was living proof of this.

The media surrounding the Nashes' story was phenomenal. It spawned articles focusing on the miracle of science as well as warnings about eugenics and the creation of life for spare parts. Online discussions raged about embryo destruction and murder. While the media didn't address what would happen if we turned back the hands of time and took away the science, as Henry was hospitalized with yet another serious infection, we knew what could happen without PGD.

We spent the next seventy-five days in Minneapolis doing our best to protect Henry from viruses, germs, and other things that would threaten his fragile condition. We bought air purifiers for each room, a top-of-the-line HEPA-filtered vacuum cleaner, and what seemed like every antibacterial cleansing product in the Twin Cities area. My mom, Allen, and I scrubbed our apartment until our hands were raw. We visited the bone-marrow-transplant clinic every day, where Henry and Jack spent hours watching DVDs on their portable player or playing with their Game Boys, eating vending-machine food, waiting for results, transfusions, good news. Every day while we were out, my mom vacuumed and cleaned our apartment since Henry couldn't be around the dust. We washed Henry's clothes and sheets separately in hot water; always left the top of the washing machine open when it wasn't in use to minimize the chance of mildew; scrubbed the bathtub after each use; never left wet towels out; didn't bring home any fresh fruits or vegetables; used paper towels instead of sponges or kitchen towels; never shared food or drinks with Henry; avoided public places and sunshine; avoided
fresh paint and construction sites; carried a portable potty and urinal in case Henry needed it on the ten-minute drive to and from the clinic; and hoped things would get easier.