Saving Henry (18 page)

Most of my time was spent in the apartment doing all of Henry's nursing. I would flush his IV lines with saline, program his pump, and hook him up to a medication that took one hour to flow. After a few minutes, I would get the next medication out of the refrigerator to cool to room temperature, line up all the vials of saline to flush his lines, change his bandages, and put new batteries in his pump. It was a twenty-four-hour-a-day responsibility with no room for error. When there was a break, I played games with Henry and Jack. Allen and my mom did all the errands related to meals, restocking the Magic Closet (which miraculously relocated to our apartment), doing the laundry, changing Henry's bedding every day—everything that keeps most of us busy most days without all the medical challenges.

I was depleted and scared. One mistake with Henry's medications or getting air in his lines, anything, could be deadly (or at least it felt that way). We were also severely sleep-deprived. At the same time, we were trying desperately to enjoy the time we had together, which we did not take for granted. Our ultimate goal, after getting Henry better, was to be present in every day, in every good moment. We never knew when something might go wrong, leading Henry to be readmitted, or worse, develop a deadly complication. Allen and I each felt a constant, endless pull between being drained and scared and fiercely determined to smile, laugh, have fun, and energize the kids.

Allen's parents, who were home in the Washington suburbs seeking treatment for Allen's mother's cancer, bought Henry and Jack a battery-operated ride-on car, which the boys rode on the secluded patio outside our apartment in the evening when no one else was out. Henry wore his mask and drove the car with Jack riding
on the back. They were so happy to be back together after such a long absence. We were inventive, figuring out lots of fun things to do without coming into contact with other people. Thanks to some friends from Allen's office, the boys had battery-operated small plastic boats that they could race and crash into one another in the fountain on our patio. We frequented drive-through McDonald's and visited all the Snoopys on display outdoors throughout St. Paul in a tribute to the city's late favorite son, Charles Schulz.

We bought walkie-talkies so Jack could call out to the car and let Henry know what new Batman or Pokémon figures were available in the toy aisle at Target. “Henry, are you there? Are you there?”

“I'm here, Jack. Please tell me you found an Onyx.”

“I'm still looking,” Jack said, although, because he had forgotten to push the button when he spoke, the only thing Henry heard was “king.”

“King? What are you talking about? Jackie, push the button when you talk!”

Jack tried to juggle the walkie-talkie and the Pokémon figures in his hands as everything fell to the floor. I offered to push the button and hold the equipment to his ear so he could deliver the news.

“They have a Pikachu on a surfboard. It's really cool!” relayed Jack, standing starry-eyed before the tall shelves. “Mom said I can get one.”

“I definitely want that too,” Henry confirmed. “But do they have an Onyx? I need an Onyx. It's
really
strong.”

“Mom, is there Onyx?” Jack asked me as he put down the walkie-talkie and wandered to the superhero toys one aisle over. I got on the walkie-talkie to reassure Henry that we had some great finds and we'd be right out.

Our hunt for the Onyx was unsuccessful, but this would not be our last mission.

 

T
he riskiest thing we did was when Allen arranged for the four of us to go to the Mall of America's Warner Bros. store (the distributor of all things Batman and Pokémon) early in the morning before it was open to the public, so Henry and Jack could have a private shopping extravaganza. Allen had called the manager and explained the situation. I think it took her about one millisecond to get on board and agree to what he asked.

As we prepared to go, I heard the beep on the portable IV pump signaling the end of Henry's latest dose of antibiotics, and I disconnected his medication from his central IV line. Henry, still bald from chemotherapy, was singing a song, which he had himself composed, just right for the occasion:
“I have a wish that came true. And I'm getting to go to the Batman Store. It's true. I have a wish, that wish came true. The wish, wish, wish came true.”

Jack smiled and chimed in,
“I'm gonna choose. Hmmm. I'm going to get a Batman.”
Just before we left our apartment, Henry put on his protective face mask to mitigate the risk of dangerous germs. The two boys sang and danced all the way to the car, then from the car into the mall and up to the closed metal door blocking their passage into paradise. The mall was quiet but for their Batman-related chatter. All of a sudden, the door clanked and slowly rose. Henry and Jack ducked under, ran inside, and darted from one display to another. After weighing all the options and making some hard choices, they each picked a few special things. We paid for everything and left without seeing another customer. Jack and Henry tore the wrapping off their new toys, and the Pokémon battles started before we even left the parking garage.

We understood that for the period of one year, we would be stuck in a complicated maze of difficult options, having to constantly weigh the risks associated with exposure to germs with
Henry's and Jack's emotional wellbeing. We would use our well-tested “no regrets” policy as a guide—decide what we were comfortable doing, do it, don't look back, and hope like hell that we got it right.

 

O
n the September day that all of Henry's and Jack's friends started preschool back in Washington, Henry was under anesthesia in the operating room at University of Minnesota Children's Hospital.

Here, doctors extracted a small piece of his hip bone and a sample of bone marrow to get a close look at whether the donor's cells had made their way to Henry's marrow and were starting to produce new, healthy cells. Later that day as Henry recovered in his hospital room, we learned that his bone marrow was filled with 100 percent donor cells, which was incredibly promising news. It indicated that we had benefited from the new protocol and managed to avoid graft failure, a major complication that had previously taken so many young lives. We were joyful and relieved.

Hours later, however, we were deeply saddened. While standing in the hallway outside Henry's room in Unit 4A, Allen and I heard the news that a little boy with Fanconi anemia who had been fighting for his life in that same unit long before we arrived and well after Henry was originally discharged to outpatient status, took his last breath. We had not known the family, but earlier that day had seen them in the hallway, quietly talking to the doctors, holding on to one another. My heart ached for his family and friends who suffered through his diagnosis, cherished every day of his life, celebrated the success of his engraftment, worried through the sudden loss of his bone marrow graft six months post-transplant, and now mourned his premature, tragic death. It wasn't lost on me that they, too, had celebrated victories like ours that day.

Our lives became defined by the same endless routine. Each
day began with a blood test to determine whether Henry needed a blood transfusion. The kids would be well into their first movie when, an hour or so later, we'd get the results, which more often than not indicated that he did. We would wait another hour or more for the blood product to arrive and then spend hours waiting for the transfusion to run its course. Often we would arrive mid-morning and leave for our apartment in the late afternoon. With three or more movies behind them and some Pringles, M&M's, and hot chocolate in their bellies, the kids were doing fine, and they'd happily walk out of the clinic, excited to get back to the apartment. Allen and I, on the other hand, were exhausted and the long and uncertain road to recovery was an everyday reminder of the consequences of our failure with PGD.

But we felt lucky. Because we
were
lucky. Despite living in a world where from time to time we had to clear the hallway as the body of a small child hidden under a drape was transported from the transplant unit to the mortuary, we were doing relatively well. Allen and I had two beautiful, resilient children. We had a life filled with good people who loved us, and good values. I felt cared-for and connected to a wonderful community and an amazing husband. We had the best doctors in the world, who were doing everything they could to save our son.

When we first arrived in Minneapolis, Henry's doctors told us that if everything went as planned, we would be able to return home to Washington in October, sometime around Day 100. The last month of our stay in Minneapolis, therefore, was marked with a manic pull between the nearness of our planned departure date and the reality that Henry was still being admitted to and released from the hospital with fevers and infections. He was also still dependent on blood transfusions. As he spent yet another day in the hospital, he had to undergo blood cultures, skin biopsies, and other tests to determine the cause of his complications and identify the most effective
treatment plan. With each blood draw, transfusion, or other medical treatment, Henry would grin and exclaim “Let's just do it!” so he could get out of the hospital and get back to living his life. The tests were often inconclusive, but his fever would dissipate, his energy would increase, and we'd be sent back to the apartment a little less confident and a little more scared. I willed him to get better, and every time he overcame another challenge and got good results on the latest test, I'd fall asleep dreaming about the day we could return home. My desire to go home was so strong that when I woke up the following morning, I swore I could taste the fajitas at our neighborhood favorite, Cactus Cantina.

 

M
ore than four months and a lifetime after departing for Minneapolis, on October 23, 2000, Day 100 arrived. When the clock struck midnight that day, there were no fireworks. Instead, it started and ended much like almost every other day since we'd arrived in Minneapolis. Henry took about seventeen doses of antibiotics, had spent the previous night on an intravenous nutrition pump since he had not yet regained his appetite, and suffered with chronic and painful diarrhea. We remained isolated from other people and spent hours in the bone-marrow-transplant clinic getting platelets and red-blood-cell transfusions and other supportive therapies. We arrived that day, just like we had every other day, with enough provisions to guarantee a good time even if we were confined to a small, sparsely appointed treatment room lacking the benefits of basic cable or anything else to distract the kids from how far away from anything fun we were. We were do-it-yourselfers, equipped with bags filled with entertainment options, including our DVD player and a host of movies, Game Boy players and games, quarters for snacks, Batman Band-Aids, and books and magazines to read.

We arrived at our appointment with Dr. Wagner, desperately
hoping that he'd tell us that we were clear to go home. In his office, he explained that a recent culture showed some sign of “acid-fast Gram-positive bacterium.” Once again, Allen and I struggled to understand the consequences of words that we had never heard before. Dr. Wagner was hesitant. He said that we could bring Henry home (which was a good thing, since the car was packed and the plane was waiting), but Henry would have to take additional antibiotics. As soon as the appointment ended we headed to the airport, beyond excited to leave Minnesota and close the chapter on our daily struggle between life and death. While we knew that Henry was still vulnerable and would live in isolation from his friends for a full year, we believed the hard part was over.

Thanks to the incredible generosity of the Honeywell Corporation, Henry, Jack, and I flew home on its corporate jet, and were home in a little more than two hours' time. The Honeywell executive on the flight kindly dropped us off in Washington prior to flying to his meeting. This flight was part of the Corporate Angel Network, which arranges free air transportation for cancer and bone-marrow-transplant patients traveling to or from treatments, using empty seats on corporate jets flying on routine business. Flying commercially was out of the question due to poor air quality and too-close proximity to too many people. Henry's eighteen-hour daily IV nutrition, constant diarrhea, and need to avoid people and public places made driving impossible. Allen drove our car home alone.

I thought I would be so grateful and elated to be home. And I was, in a way, as I walked into our house, which was decorated with Welcome Home banners. But I was also surprised to find how out of place I felt; how drained, scared, and lonely I was. I didn't even feel comfortable in my own home. Once a haven, it was now a dirty, scary place that could kill Henry, despite the hours my mom and Abby had spent scrubbing it from top to bottom. The evening of our return, as I waited for Allen to get home, hundreds of friends gath
ered on our front lawn. The sun had just set and they had all arrived to welcome us back. They were holding glow sticks, bundled in jackets, and serenading us. It was a lovely sight, and a moving and touching gesture. But as I looked out my window, these friends of ours morphed from lifelines into threatening carriers of germs that Henry was too weak to fight. I savored their thoughtfulness and was touched by their kindness, but I wished they'd hurry and leave.

We were too far away from our doctors and the hospital that knew Henry best, and from other people who, through their own life experience, understood ours in a way that everyone we knew from before couldn't. I was overwhelmed. Standing there, behind the curtains, locked inside and away from these people I loved, I realized that I had lost such a big part of who I had been. I doubted that I'd ever get that back. As my brother had always said, I was the life of the family: the spark that started the party; the fun, funny, spontaneous, unworried one. But the failed PGD attempts and the intensity of the fear associated with the transplant had beaten the happy-go-lucky right out of me.