by Geeta Anand
“That’s very good news, Doctor,” John said, elated to be told there were years—not just months—for Megan to get on one of those experimental medicines that might save her. Aileen nodded beside him.
“But even though your daughter is strong, she’s susceptible to getting sick fast. She may get very sick in the next year. You need to get her as strong as you can.
“Look, it’s very important that Megan receive adequate nutrition,” he continued. “We should talk about having an operation performed on Megan to insert a tube in her stomach for supplemental feedings. It’s called a gastrostomy. I recommend you do it as soon as possible.”
The smiles disappeared from John’s and Aileen’s faces as they waited in silence for him to explain. They had been feeling relief to hear the doctor confirm his hunch that Megan had a less severe form of the disease. Time had never seemed so valuable, and he had just given them several more years with their daughter, but now he was suggesting something terribly invasive for a baby girl who had nothing visibly wrong with her. The only people they had heard of with stomach tubes were in comas in the intensive care unit.
“Trust me, she’s not going to get any stronger,” Slonim said kindly, reading accurately into their silence. “She’s only going to get weaker over the next year. As her muscles weaken, she’s not going to be able to swallow enough calories. You need to do everything you can to keep her strong so that she can survive respiratory infections that can take a heavy toll on children with the disease. And this is the first thing I would do.
“Look, John, I know it sounds drastic, but I strongly recommend it,” the doctor continued. “I have a patient in upstate New York whose disease was rapidly progressive. We put a stomach tube in for feedings, and he’s now much stronger because of it. Please—trust me.”
The couple nodded somberly. Slonim seemed so knowledgeable and caring that they didn’t doubt his words.
“When do we get it done? Where do we go?” Aileen asked, swallowing rapidly.
“You need to go see a gastroenterologist,” he said. “I know a good one in New Jersey that I’ll send you to. You’ll be in good hands with him.”
“What about your clinical trial, Doctor?” John asked, pointing at the documents on the table. “Could Megan be in your study?”
“It’s too early to enroll patients,” Slonim said, standing up. “There are still some technical issues we need to work through.” He looked from the pile of papers on the table to Randall House and van der Ploeg, who stood together in the far corner. “We’re still working out the design for the trial. We hope to get started this summer,” he said. His smile filled John and Aileen with hope.
“And let me tell you this,” he continued, his eyes resting on Megan, sitting quietly in Aileen’s lap with her pacifier in her mouth. “If your daughter was going to have Pompe, this is a good time to be born with it.”
5
God Doesn’t Give You More Than You Can Handle
Spring–Summer 1998
Walnut Creek, California; Rumson, New Jersey
John and Aileen stood beside Megan’s crib at home in Walnut Creek, watching their daughter sleep. Her room was small and cozy, painted a soft pink. The crib stood against the right wall, the sheets printed with pastel animal figures to match the mobile that swung lightly overhead. Megan lay on her left side, as always, breathing steadily.
“She looks so peaceful,” John said, patting his daughter’s back tenderly. “Other than the metal pole, you would never know she’s sick.”
They had arrived home from the doctors’ visits out east and Easter with Aileen’s parents, and within hours, a medical supply truck had driven up to drop off the IV pole that would hang Megan’s feeding bag attached to her gastrostomy tube. She was still eating normally, but the supplemental feedings through the IV were supposed to make her stronger—or at least keep her from getting much weaker if she didn’t get enough nutrition by mouth. They had taken Dr. Slonim’s advice and had had a gastrostomy performed on Megan while they were still in New Jersey. Since then, a plastic bag of creamy formula had hung on the pole beside her bed every night, draining through a quarter-inch tube into the gastrostomy—the little hole in her stomach made by the surgeon, which closed with a stopper during the day.
“Let’s go make some dinner,” Aileen said, tugging John toward the door. Patrick and John Jr. were asleep in their rooms farther down the hall.
In the kitchen, Aileen boiled a pot of water and opened a box of pasta.
“It’s cheap, easy, and delicious,” she said with a laugh. John uncorked a bottle of red wine and poured himself a glass.
Both the kitchen and the dining room opened into the family room, and as John took a first sip, he stared at the spot on the carpet where only months earlier a fresh pine Christmas tree had stood.
“I can’t believe we only have six or twelve more months before Megan gets really sick. It just doesn’t make any damned sense,” he said.
“You’re right—she looks terrific. Beautiful and terrific,” Aileen said quietly. She walked over and poured herself a glass of wine.
“Are you sure you want to drink that? You’re still breastfeeding.”
“It’ll help Patrick sleep a little better,” she said with a grin. “He’s Irish. He can take it.”
John relished the evenings when the children were asleep and he had Aileen to himself. There was so much on his mind that he couldn’t express during the day when they were juggling the care of three children aged three and under.
“You know, she is weak compared to the other kids. Look at Patrick. He’s not even two months old and he’s stronger than she is. Something is wrong, that’s for sure.”
“Patrick is really strong,” Aileen agreed noncommittally, her eyes fixed on the pasta as she drained it and divided it into two bowls. She wished John would talk about something besides Megan’s health. She couldn’t think about it all the time or she would drown in sorrow and fear. But John had been an endless talker and planner since the night she’d met him in 1984 at a friend’s Halloween party. He was a senior in high school, dressed as a priest for the party. She, a junior, was too cool to wear a costume. “You never take a crap without coming up with a new plan,” she would often tease in later years. She’d chosen Trinity College in Washington, D.C., in part so she could be close to John, who was at the Naval Academy in nearby Annapolis at the time. They’d both known they would marry, and she wasn’t altogether surprised when John proposed to her several years later on the steps of the Lincoln Memorial, the night before he graduated from Georgetown University. John had worked in the men’s department at Bloomingdale’s over the holidays, one of many part-time jobs he’d taken to save for the two-carat diamond he pulled out of his pants pocket. She watched that same diamond sparkle on her finger as she set the used pasta pot on the stove to clean later.
“You know, this winter we’ll take Megan somewhere warm so we avoid the cold season. We’ve got to protect her until we’re sure the medicine is here,” he said, standing beside her now.
“John, I’m not going to shelter these kids,” Aileen said, her tone gently challenging as she poured a jar of marinara sauce over each of the bowls. “Think about the other two. What kind of life is it for them with a sister who’s locked in so she doesn’t get a cold? That’s no way for them to live.”
“Well, I’m sure the medicine will be here before the winter anyway,” John replied, sidestepping an argument. In the fifteen years they’d known each other, they had almost never fought, in part because Aileen was easygoing and avoided conflict, but also because John gave in on the areas that were considered her domain—the children, the home, their social life. “It may only be another month or two before she’s in the clinical trial anyway.…” he said, his voice trailing off.
“Yeah, we’ll see,” Aileen said, carrying the bowls of pasta over to the kitchen table. “Let’s sit down and eat and talk about something fun. What are we going to do this weekend
?”
“You know, I think we need to go back to Duke and Long Island again soon,” John continued, so preoccupied that he missed Aileen’s obvious effort at diversion. “I want to make sure we’re in their face—the squeaky wheel gets the grease. We need to be on the doctors’ minds when they’re deciding who gets in the clinical trials. People tell you things when you’re in their physical presence that they won’t tell you over the phone. Aileen, I think we should move back east.”
“What about your job?” she asked, dropping her fork with a clatter, looking at him in shock. “We just moved out here eight months ago.”
“I can commute back and forth.”
“You know it’s going to be hard going back and forth. I’m sure we can find good doctors out here,” she said, leaning forward, eyes searching his face—now flushed red with intensity and emotion. Just how far along was he in this thinking? Once John embraced an idea, she knew it was almost impossible to change his mind.
“Maybe good, but I don’t have time for good. I want the best for Megan,” he said, a tremor in his voice. He reached across the table to hold Aileen’s hand.
John’s emotion moved Aileen, and her eyes filled with tears. Taking a deep breath, she squeezed John’s hand and said, “Honey, I love you. Of course I want the best for Megan. Tell me what you think we should do.”
“I think we need to move back east,” he said, biting his lower lip in an effort to compose himself.
“Okay, then,” she said. She straightened her shoulders and wiped her eyes with her napkin. “Let’s just do it.”
By the end of May, Aileen had flown east with the children and settled into her parents’ brick five-bedroom house in Rumson, New Jersey. Even after their children were grown and had their own homes, Aileen’s parents still bought big houses—the family was all to them. Most of the paintings on the walls were gilded portraits of their children and grandchildren. They wanted enough space so their three children—Aileen was the middle one, the only daughter—could all come and fit comfortably with their spouses and children on the holidays. Even with Aileen and the three kids, the Rumson house didn’t seem overcrowded.
At her parents’ house, Aileen could finally get some rest. Someone was always visiting and willing to lend a hand. Even better, poor John Jr.—who, as the oldest and healthiest, hadn’t been getting as much attention as he would like—suddenly had four adults to fuss over him. Her brother, Marty Jr., lived outside Philadelphia, and showed up on many weekends to take little John out to McDonald’s. Her dad spent hours lounging on the back deck with the boy, emptying the hot tub and letting him fill it up again with the garden hose. Some weekends, the whole family headed to the beach. On other Saturday afternoons, they invited friends and family over for barbecues. Aileen’s parents were always ready to host a party, and Aileen, who was as extroverted and social as they were, enjoyed the distraction of the constant stream of people. Most of the time, she could pretend everything was okay.
John came only on weekends at first, spending his weeknights in their house in California, which was empty save for the master bedroom furniture and his clothes. But within a month or two, lonely and exhausted, he had persuaded his consulting firm to let him work out of its company’s Stamford, Connecticut, office. That way, he could live with the family at Aileen’s parents’ house. He still had a long commute—two hours each way—but at least he wasn’t flying across the country each week. He began looking in the employment section of the newspaper for jobs with shorter hours and offices closer to Rumson. He had never considered a job with a drug company, but the newspapers were full of advertisements for positions in the area; New Jersey was often referred to as the pharmaceutical capital of the world. Aileen’s Aunt Sandra, who worked as a senior human resources executive at Bristol-Myers Squibb Company, got him an interview at the big drug-making company. Soon he had a second interview set up.1
At play dates and in the park, Aileen remembered Dr. Birnbaum’s warning that each child stood a 25 percent chance of having Pompe disease, and she constantly compared Patrick with other babies. Her stocky, blue-eyed baby looked easily stronger than babies a few months older. He nursed vigorously. He was able to put some weight on his chunky legs. She told herself that she didn’t need to worry about this infant who looked and felt like a little wrestler.
In July, John scheduled follow-up visits with Dr. Slonim and Dr. Chen, whom they had seen after the appointment with Slonim on their first trip east following Megan’s diagnosis. John told Aileen they needed to find out what was going on with the trials and make sure Megan was included. “We need to send the message that we’re willing to be anywhere and everywhere at a moment’s notice,” John insisted.
This time, their first visit was with Dr. Chen at Duke University Medical Center. Moving had depleted their bank account, and the best airline price John could find to Raleigh-Durham Airport was $800 a ticket. So instead of flying, they packed their Ford Expedition for the six-hour drive to North Carolina. They left little John at home and brought Patrick along so that Aileen could keep nursing him and her mother wouldn’t have to take care of two kids.
It was a long, hot drive. They drove past the brick buildings of the U.S. Marine Corp base in Quantico, Virginia. John, seeing Patrick awake in the backseat, began to tell him about it.
“You know, Patrick, you’re going to grow up to be big and strong like Daddy and his daddy,” he said. “Grandpa was a tough Marine. He was with the Second Force Recon. You know what that is, Patrick?”
“Sure he does, John. All four-month-olds know that,” Aileen said, rolling her eyes.
“He’s listening to me, Aileen,” John said. “Look back there—I can see how his head is positioned. I can tell he’s listening.”
Patrick, his car seat facing the rear, was quiet. He had a habit of staring with his piercing blue eyes at whoever was talking, seeming to comprehend. John was sure he was listening now with the same infantile intensity, even though he couldn’t see his daddy. Megan, beside him, was asleep in her forward-facing car seat, head flopped down on her chest, hands and arms outstretched.
“The Second Force Recon are the elite of the Marines, Patrick. They’re the Special Forces. Your grandpa got a lot of bad guys. Your daddy used to wear a uniform and march around, too. I spent a week here at Quantico with the Marines one summer many years ago, shooting machine guns and jumping out of helicopters, when I was at the Naval Academy.”
John fell silent then, as he always did when he talked about the Naval Academy. In part because his father had been a Marine, he often wished he’d stayed at the Academy instead of transferring to Georgetown after a year and a half. He had grown frustrated with the heavy load of math and science courses, and discouraged over being scheduled for a second tour at sea, this time over Christmas. John remembered the rush he used to feel at lunchtime as he raced from his room in Bancroft Hall, his forefinger feeling for the corner of his belt to make sure it was in line with his shirt, into the massive courtyard where five thousand plebes and upperclassmen stood at attention for their three-minute inspection. He had been a model midshipman.
“Patrick, you know, a life in the military may be more meaningful than anything else for you,” he said after a time. “It may be more meaningful than anything your daddy can do with his Harvard MBA.”
“Oh, John,” Aileen said, rubbing his shoulder. She, more than almost anyone else, knew how much he’d struggled over his decision to leave the Academy. Even though John’s father had died when John was in second grade, he had instilled in his son the belief that part of a truly rewarding life involved serving your country in the military. John wanted to impart the same deep sense of respect in his children for those who had sacrificed in America’s wars. Maybe his sons would carry on the military tradition that had somehow skipped a generation.
“In twenty-one years, Patrick, you will be Second Lieutenant Patrick Francis Crowley, an officer of the Marines,” John said grandly. “Then you’ll make
your daddy and grandpa very proud.”
* * *
They arrived on the first Thursday of the month, which was clinic day for Dr. Chen. The large waiting room was full of children with genetic disorders, the doctor’s specialty. Aileen and John stood in line to check in, parking the double stroller so that it faced them, Megan in front, Patrick behind her. Aileen turned around and saw a brown-haired boy in a stroller behind them who looked eerily familiar. His face was a little flat and almost entirely expressionless. His mouth didn’t close completely and his tongue protruded a little. She looked up at the parents and saw that they were staring at Megan with the same look of recognition. It was the first time John and Aileen had seen another child with Pompe disease.
“We’re here to see Dr. Chen,” Aileen said, smiling at the couple.
“You’re seeing Dr. Chen? So are we,” said the boy’s mother. “I’m Debbie Walter. This here is my husband Bo, and this is our Joseph.” She smiled down at her son. She said they had come up from Pinson, Alabama, for three-year-old Joseph to be examined.
Aileen and John checked in, and then waited by the counter while the Walters finished. The couples walked together to the waiting area.
“When was Joseph diagnosed?” Aileen asked.
“A year ago,” said Mrs. Walter. “It’s been really hard on us because our eldest son was killed in a car accident a couple of years ago.”
Aileen was stunned, and her eyes glazed over. “Oh my, I am so sorry,” she whispered. John shook his head and said he was sorry too. All it took was one conversation with someone in a worse position to help you stop feeling bad for yourself.
“Is that your younger one?” Mrs. Walter asked, trying to see behind Megan in her denim Mermaid jacket, her Winnie the Pooh pacifier in her mouth.
