by Geeta Anand
From his years as a devout Catholic, John looked in his heart for what he could hang on to now. He’d been an altar boy. He still had the second grade CCD book he’d used in preparing for First Communion the year his dad had died. He’d kept his religious faith in the face of that monumental loss—or perhaps because of it.
John had continued going to Mass each day as a freshman at Georgetown. At Harvard, he continued to attend daily, finding in the ceremony of Mass that sense of peace and space for reflection that was absent in the rush of life. These days, he’d been stopping at St. Paul’s Church in Princeton at 6:45 each morning on his way to work. The priest there, Monsignor, Nolan, had lost his wife and newborn child years earlier during childbirth, and John felt he could relate to personal loss.
What would happen to Megan if she died? Mass or no Mass, John had to admit he didn’t really know if there was a heaven—but he believed. He believed because he wanted to believe, and because he was certain there was a force at work in the world, something bigger and better than ourselves.
“God chose you for a reason,” many people would later say as they tried to understand how John and Aileen ended up with two children with such a dreadful disease. John would nod agreeably, but in truth, he didn’t believe God had had that strong a hand in causing the children’s sickness. He’d read somewhere that nature wasn’t cruel, just brutally random, and he believed there was truth in that statement. Religion was about how you lived that life you’d been randomly given. It was, he believed, about choosing to do things that are good, even when life delivers the worst.
When Aileen arrived, Hofley and his team were still struggling to keep Megan alive. Hofley came out of the emergency room and asked Aileen and John to wait down the hall in the room where Megan had spent the past few days.
“The next couple of hours are critical,” the doctor said tensely. “You need to be prepared that there’s a good chance Megan may not live through the morning.”
Aileen sat nervously between her father and John, unsure how she was supposed to prepare. Her eyes were red-rimmed, but dry. She didn’t know what to think. She didn’t even want to think. She found herself just waiting for something to happen. Hofley appeared every so often over the next few hours to tell them he was still working on Megan and that she remained unstable.
John excused himself and went back to the pay phone. He wanted to tell his mother and his brother Joe what was going on. He reached Joe at the police station in Baltimore where he worked. As he began to talk, he began to cry. He couldn’t stop. Joe, accustomed to being the one supported by his older brother, struggled to find words of comfort. “I’m so sorry, John. I’m so sorry,” he repeated.
At about noon, Hofley showed up again. This time, the lines around his mouth had smoothed and the intensity in his soft voice had been replaced by resignation, as if he had endured a long battle that had ended. John was just not sure how it had ended. He wanted to ask, but he was afraid to know the answer, so he waited, holding his breath, for what the doctor would say.
“I know this has been a long, difficult few hours,” Hofley said when he finally spoke. “And I am very pleased to be telling you that your daughter is now stable. Come, I’ll take you to visit her. I’ve given her a drug to temporarily paralyze her because when she regained consciousness, she started pulling at the breathing tubes and resisting the breathing support.
“Your daughter is some little fighter,” he added softly, shaking his head and looking from John to Aileen. “I wish she would just close her eyes and rest, but she’s determined to stay awake.”
As they entered the PICU, John and Aileen saw Megan lying on her back, her eyes open, scanning the room. Her eyes settled on them and immediately filled with tears. Aileen rushed over to kiss her.
John, still incredulous that Megan had lived through the morning, rubbed her matted hair gently. “All right, kid,” he said, staring gravely into her big dark eyes. “If you want to fight, we’ll fight, too.”
For the next few weeks, Megan battled what Dr. Hofley diagnosed as a staph infection that she must have picked up since being admitted to the hospital. The infection had turned into sepsis, a condition that is often fatal because the organs in the body shut down. Hospital rules prohibited people from sleeping in the intensive care unit, so there was no pull-out chair for John and Aileen to sleep on. The nurses urged John and Aileen to consider taking a room at the Ronald McDonald House nearby, but they couldn’t fathom leaving a two-year-old alone anywhere, let alone one who was critically ill. They took turns all night in the straight-backed chair beside her bed.
Aileen became expert at watching the numbers on the monitors carefully so that she picked up immediately if Megan’s fever was up or her heart rate falling or her oxygen saturation low. Megan’s heart stopped beating three times during those early weeks. Each time, as doctors and nurses scrambled around her, Aileen, calm and dry-eyed, held Megan’s hand, adjusted her tubes, and made recommendations. John handed out copies of the Duke and Pharming press releases about the clinical trials to make sure Dr. Hofley and the intensive care nurses knew there was hope for Megan, reason to fight to save her despite her dire prognosis.
Many times, Aileen’s parents felt like they’d walked into a scene out of ER—one in which their daughter was playing a leading role. Marty Holleran had always known his daughter was firmly grounded, big hearted, and kind. But he couldn’t think of what in her life experience had prepared her for this. Her life thus far had been utterly carefree, except, perhaps, for the stress of her family’s frequent moves as her father advanced up the career ladder first in the U.S. Army and then at General Electric Corporation. But even those moves never seemed to bother her. She had maintained a steady B average and a throng of friends in every school. Until now, Marty had been certain that his daughter’s adult life would be an extension of her easy, joyful childhood.
After about three weeks, Megan’s condition improved enough that John felt comfortable returning to work full time. His boss and colleagues at Bristol-Myers were so supportive that they’d already finished and filed his business plans for him so that he met the September 30 deadline. During those early days and nights beside Megan’s hospital bed, he’d completed the paperwork to start his Pompe foundation and mailed it to the Internal Revenue Service. He even called the IRS and spoke to a worker, telling her about Megan’s illness and how he needed the foundation to raise money to help her. The worker said she would push to get the papers approved quickly.
John also began to recruit members for his new foundation, cold calling down the list he’d gotten from Slonim of children with the same nonclassical form of Pompe disease as Megan and Patrick. One of the first people he reached was Greg Assink, the branch manager of an equipment rental company outside of Grand Rapids, Michigan.
“Hey, Greg, Dr. Slonim told me about you. My name is John Crowley and I’m a father of two children with Pompe disease, the same nonclassical form as your Kelsey, I understand,” John began.3
“We’re in the same boat, then,” Greg responded with sympathy. “I have two children with serious disabilities, too. My two-year-old boy is autistic, and then we have five-year-old Kelsey who has Pompe. I am so happy you reached out to us. How are you and your wife coping, John?”
“We’re okay, but there are days, you know. It hasn’t been easy, Greg,” John said, amazed, for the second time in his life, at how easy it was to talk to complete strangers who shared the same terrible experience of knowing they could lose their child any day. The first time John had known that ease was when he met the Walter family at Dr. Chen’s office. Today, as then, the words just tumbled out, and John shared things he hadn’t said even to some of his closest friends. “We almost lost our little Megan, who is two years old. She’s still in the hospital, in the intensive care unit. Our youngest, Patrick, is only one year old and he’s still strong, but he has it too. Megan’s nearly dying has convinced me that we can’t afford to wait, Greg. Time’s the rea
l enemy. All of us parents of children with Pompe disease need to band together. All of the clinical trials are being done on infants. If we want to save our kids, we’ve got to drive research forward for toddlers and older kids.”
“How are you going to do that?” Greg asked.
“I’m a director, soon to be vice president at Bristol-Myers,” John said, proud to be able to use his latest promotion to gain credibility. “We’re not personally wealthy, not even close, but we are well connected. I went to Notre Dame Law School and Harvard Business School; my father-in-law was a vice president at GE. We’re starting up an organization, the Children’s Pompe Foundation, to raise money for research and clinical trials for children with Megan and Kelsey’s form of the disease. We intend to use every connection we have to raise money to start clinical trials for children with the nonclassical form of Pompe.”
“We’ve been giving to the AMDA,” Greg said. “Our church and our family have all been giving to the AMDA,” Randall’s organization.
“The AMDA does wonderful work,” John said, not missing a beat. “They’ve done a great job funding research. But I think there’s room for more than one organization, and for an organization like ours with a specific purpose.”
“That’s true,” Greg said, liking the enthusiasm he heard on the other end of the line.
“Give it some thought, Greg,” John said. “We’re only doing this because we’re running out of time. If we wait around and let trials go forward only in infants, it will be too late for Megan and Patrick and Kelsey and all the other children like them by the time the companies are ready to treat them.”
“John, I feel like we’re the same kind of person,” Greg said. “We’re both Type A personalities.” Then he laughed. “Well, if I’m a Type A, it sounds like you’re a Type Triple A. I would like to work with you. Let me talk to my wife and see what she thinks.”
A few days later, Greg called John back. He told John that after their last conversation, he’d spoken seriously with his wife. Their children’s illnesses had made them intensely religious, and they’d prayed that night for guidance. Greg discussed John with the group of six men in his Bible study group, and even called Slonim to ask what he knew of John Crowley.
“My family and my church all feel that we should work with you,” Greg said. “You have all of our support.”
In between the phone calls to families, John also called a moving company and arranged for the boxes and furniture he and Aileen had stored in her parents’ basement to be transported to their new house. They had been planning to move into the house in late September, a few days after Megan was admitted to the hospital. Of course, they’d had to postpone.
John Jr.’s new preschool, Hopewell Presbyterian, had started three days a week and was a few blocks away from the new house. John settled into a routine of camping out in the new house in sleeping bags with his namesake son, surrounded by their unopened boxes, on the nights before he had preschool. Then John would drive to work, and afterward he’d show up at the hospital for several hours.
Some nights he stayed at the hospital so he and Aileen could take turns at Megan’s bedside—one of them sleeping in the waiting area while the other sat in the intensive care unit. On other nights, John would go home to his in-laws’ house to try to get a decent night’s sleep. The au pair program they had applied to had sent over a young German woman named Anne, and she was also staying at Aileen’s parents’ house. Aileen’s mother and Anne were managing the care of Patrick and little John. Aileen, meanwhile, had spent forty-two nights in a row at the hospital.
One night, John told Aileen he had a surprise. He left the hospital and returned to Megan’s bedside a short while later with an Italian take-out dinner and bottle of Chianti, already uncorked and hidden in a brown bag. Megan had fallen asleep, and Aileen sat in her usual perch in one of the two straight-backed chairs by her bed. With a sly smile, John poured the contents of the brown bag into a Styrofoam cup and handed it to Aileen. Then, filling a cup for himself, he sat in the chair beside her and pushed it until it was flush with her seat.
They sat together, drinking the Chianti a little too quickly, joking about whether the nurses at the other end of the room had figured out their ruse. Before long, the bottle was empty. John, stealing a quick look in the nurses’ direction, wrapped both arms around Aileen and pulled her toward him, kissing her passionately. “Honey, you are so beautiful,” he whispered, when he finally drew a few inches away from her face.
Aileen rolled her eyes, running one hand through her hair, and giggled, “I can’t remember the last time I put on makeup. I look like a sight.”
“You’re always ravishing,” he protested, kissing her fingers, her chin, and her forehead. Then, looking intensely into her eyes, he said, “I’m so sorry this has been so difficult. I never knew you could be so strong.”
“You know I love you,” Aileen whispered, smiling.
“Do you remember the first time we kissed?” he asked.
“Of course I do,” she said. “On the couch in your mom’s house watching the end of The Spy Who Loved Me. The song “Nobody Does It Better” came on and you kissed me for about ten seconds and looked at me and said, ‘That was nice.’ ”
John let out a little laugh. “The nurses are probably watching us but pretending they don’t notice,” he joked.
“They probably feel sorry for us,” she chortled softly. “I don’t care anymore anyway. I just miss you, John.”
Whispering in Aileen’s ear that he had another surprise, John led her outside the intensive care unit and down a corridor. Suddenly, he pushed open a door on the right side and yanked her inside. Aileen found herself standing inside a cleaning closet with a wall of wet hanging mops on each side. “I scoped this out on my way in this evening,” her husband was whispering excitedly. “It’s been four weeks since we made love. I couldn’t wait one more day.” Aileen silenced him with her lips, reaching for the blissful mix of love and comfort and pleasure that she had only ever known through him. Sandwiched between the walls of mops, they made love that night with a tenderness they hadn’t known before, their passion heightened by the pain of shared suffering.
When they returned to the intensive care unit, they found it as quiet as when they left it. Megan was still asleep and the nurses continued to talk among themselves, their eyes trained on the monitors at the command center. Aileen, blushing, her hair tangled, sat back in the chair, and John covered her with a blanket, tucking it in around her. He kissed her cheek and straightened the crooked parting in her hair. Then he walked down the hallway, his hands in his pockets, smiling, heading for the waiting room for a few hours of sleep.
Since the night when she choked and nearly died, Megan had been on a ventilator almost constantly. John told Dr. Hofley that to qualify for the first clinical trial, Megan needed to be able to breathe on her own. “I don’t know if she can do it, but we’ll try,” Hofley said. He tried to wean her off the ventilator several times, but she was unable to breathe on her own and once went into cardiac arrest.
“Her muscles aren’t strong enough to breathe anymore,” Hofley said after the last frightening try. “She needs a tracheotomy.”
Reluctantly, John and Aileen agreed. Aileen asked if Dr. Michael Tavill, an ear, nose, and throat specialist they knew and trusted, who had treated the children before, could perform the surgery. Hofley made the arrangements, and a day later, John and Aileen accompanied Megan, sitting up in a blue hospital gown on the surgery gurney, to the edge of the operating room and kissed her good-bye. Tavill wheeled her into the operating room and performed the half-hour surgery, cutting an incision in her throat through which a breathing tube was connected so that she could use a ventilator permanently. At the age of two, Megan would never again breathe on her own unless a treatment was developed to reverse the disease.
As they sat together outside the operating room, leaning forward in the straight-backed metal chairs, Aileen asked the question she had
been suppressing since she’d realized the tracheotomy was inevitable.
“John, does this mean she’ll never get in the clinical trial?”
“Along with her not being a baby, this will make it harder to get her in the trial,” John admitted, sounding tired. Then he straightened, and conviction filled his voice. “But I sure as hell am going to find a way.”
Finally, after Megan had been at the hospital for six weeks, Hofley said he was ready to release her. In the short term, Megan couldn’t even go home unless her parents learned not only how to operate the ventilator but also how to replace the tracheotomy, the tube connecting the machine to her throat. At home, they would have some nursing help, but they needed to be able to care for Megan themselves because the nurses wouldn’t be there around the clock.
Dr. Hofley decided to release Megan to a nursing home for children on ventilators called the Children’s Specialized Rehabilitation Hospital. In Mountainside, New Jersey, the center housed some children temporarily while their parents learned how to take care of them; others lived there permanently. The director recommended a three-week stay to train parents, but John and Aileen insisted they could learn everything in a week. They were desperate to get Megan home.
In the meantime, Aileen’s relatives, eager to do something to help besides bring food and toys to the hospital, volunteered to get their new house ready for them. Aunt Sandra, the one who worked at Bristol-Myers, her sister Marsha, their husbands, Jim and Jay, and another cousin, Beverley, spent a weekend unpacking all the boxes and setting up all the furniture. They joked that they were Mennonites doing a barn raising, and got so caught up in the spirit that they even put clothes in the closets, pictures on the walls, books in the shelves, and mums out front on the doorsteps.