I’ll make them understand, Harmony thought.
Chapter Three
Greg and Amanda Wincott had plans. Both were high achievers. They would work, build their careers and then within a predetermined window, they’d have their first of two children.
Greg ran Wincott Enterprises, a real estate investment and management group that survived the commercial building excesses of the 1990’s. With occupancy now nearing 100 percent, business was booming.
Amanda crashed through what remained of the glass ceiling at Hastings, Brood, and Smith, an international accounting firm. As vice-president for Audit Management, she supervised over one hundred CPA’s.
They lived in a beautifully restored Victorian in the Piedmont Hills above Oakland.
Considering their achievements and compulsive personalities, one would guess that they might not be a couple with whom you’d like to spend an evening. Exactly the opposite was true, for the key to their success was as much based on caring and accepting personalities as it was for their abilities. In spite of severe limitations on their free time, both volunteered, not for the arts or the aristocratic causes of their class, but in support of the community free clinic and women’s reproductive rights programs.
They endured three years of trying to get pregnant, and a cornucopia of unpleasant hormonal manipulations. At the age of thirty-nine, neither Amanda’s ovaries nor her pituitary gland, nor her psyche always knew which way was up.
One morning in March, Greg awakened to the blue-banded urine dipstick fluttering in his face. “We’re pregnant,” she laughed.
Greg embraced his wife, smiling broadly. “I don’t know about the ‘we’ part of that.”
They organized as only compulsive perfectionists could. After her amniocentesis, they prepared Ian’s room, she arranged for a leave of absence, and they had Piedmont Hills, the area’s most prestigious nursery school, on speed-dial.
The 8lb 6 oz, dark-haired Ian made his debut just after midnight at the end of the first week in November. While both thought they’d managed every detail in preparation for this event, they were unprepared for and felt overwhelmed by the raw emotion of Ian’s birth and the strength of the love they instantly felt for their boy.
Amanda’s misgivings, do I possess those maternal instincts everyone says I do, vanished when they first placed the screaming Ian on her abdomen immediately after delivery.
“Isn’t he just beautiful, Greg? He looks just like you.”
“To me, he looks like Edward G. Robinson, but don’t worry, the effects of the delivery on his face shouldn’t last more than a year or so.”
She ignored his last comment. “Look at all that hair, the fat cheeks, and the bow legs–genes don’t lie. He’s your son.”
After the third month, Amanda knew she would not fulfill the promises she’d made to her firm. She couldn’t conceive of her boy at home or anywhere else that put him in the hands of another. Financial considerations were not an issue, they had more than enough, and Amanda knew, on a most primitive level, that staying home with Ian was her true calling.
Amanda laughed at herself when she recognized that her compulsive nature had followed her home from the boardroom. She walked into the baby-blue room. The wall opposite the large bay windows had an original mural by a local artist, a brightly lit forest and lake scene with detailed renderings of forest animals. Cheerfully, she organized the painted cubicles alphabetically from baby books, to diapers, clothes, and finally toys. Amanda was helpless in the face of disorganization, and smiled self-indulgently as she straightened each item.
I have to stop this before Ian catches my compulsive personality.
Amanda filled the kitchen bulletin board (she’d abandoned her organizer) with reminders, and had mounted a large Kansas State University developmental milestone chart for the first year of life, her Bible. The yellow marker entries on the chart showed Ian’s accomplishments as of the third month, the motor, sensory, language, and social skills. He was well ahead in all arenas especially the social skills, smiling at six weeks and playing peek-a-boo. By his 9th month, Ian functioned at the 12-month level, speaking eight words, walking without assistance, and drinking from a cup without help.
At eighteen months, Amanda noticed subtle changes in Ian’s behavior, primarily a slight decline in his usual high level of activity. Shortly afterwards, she saw that even when play began at its normal pace, within minutes Ian stopped to rest.
At dinner, she stared at Greg. “Ian hasn’t been himself for the last week.”
“He looks fine to me. What’s up?”
“You know Ian, never a moment’s rest, but lately he’s slowed down. He’s eating and sleeping well and I haven’t noted any other changes. I’m just concerned.”
“Let’s give it a little more time. Maybe it’s a virus or something.”
Over the next few days, Amanda spied on her son. He seemed his usual happy, contented self, but after ten minutes playing with friends, she’d find him squatting in place, his mouth wide open, panting for air. It frightened her. Soon, he even refused to try to play. Something was terribly wrong.
Their pediatrician, Steven Brooks, listened to Ian’s history and performed a thorough examination. “He looks anemic to me. This easily explains his symptoms.”
The doctor’s comment alarmed Greg at once. “Anemia, why should he be anemic?”
The pediatrician drew several vials of blood from the screaming Ian. Two days later, he called with the results. “Ian is very anemic. His red blood cell count and hemoglobin are so low that it’s surprising that his symptoms are not even more dramatic. What concerns me the most is that the blood tests fail to explain an anemia so severe. He’s going to need a pediatric hematologist. I’ve arranged for Harry Richmond at Sanford University to see Ian tomorrow.”
Amanda held Greg’s hand. “What could it be, Steve? My mind’s going crazy with all the terrible things that kids can have. Could this be cancer or leukemia?”
“I doubt it. I don’t know why he’s so anemic, but Harry is the best. We’ll find out soon.”
They sat in Greg’s Lexus, holding hands and staring at each other. Amanda wept. Greg was terrified and couldn’t find appropriate words.
“I’m so frightened,” she said. “How could this happen? He was doing so well. What have I done?”
“Don’t do that to yourself, there’s no way you did anything wrong.”
They drove over the crowded Dumbarton Bridge across the southern part of the San Francisco Bay. Boats of all sizes and shapes moved through the flat green-gray bay waters with a relaxed urgency. Commercial airliners, on final approach for arrival at the nearby San Francisco Airport, cut paths perpendicular to the bridge span as they roared by a hundred feet overhead.
Enduring commuter traffic every day is no way to live, Greg thought.
When they finally found their way through the Stanford medical building complex to the Lucile Packard Children’s Hospital, an information clerk directed them to the Hematology/Oncology Section.
Dr. Harry Richmond, the Chief of Pediatric Hematology, was a jovial man in his fifties. He smiled broadly as he greeted them, and then stroking his grey-streaked beard, he sat next to Amanda and Greg on his office sofa.
“I know how difficult this is for you. The unknown is usually worse than reality. When I looked at Ian’s chart, I was concerned. Severe anemia in an otherwise healthy child with normal levels of the factors that the body needs to make blood means that Ian’s bone marrow isn’t responding to his body’s strong signals to make the red blood cells he needs. To sum up, we must examine his bone marrow,” he paused, staring at them, “today.”
The “today” startled Greg. “You must have some idea about Ian’s case, Doctor. Can’t you share your thoughts?”
“I’m not trying to be evasive. I know parents always dread the worst, but there are so many possibilities that I generally don’t use diagnostic words, alarming words, which often prove to be baseless.”
“My secretary will make all the arrangements. We’ll do the bone marrow examination tonight and we should have answers by tomorrow morning. Let’s meet here at 10:30.”
When they got home from Stanford, Ian slept in bed with them, a real treat. The boy seemed at ease. They were anything but.
The next morning, when Dr. Richmond entered the consultation room, his somber look told all. No smile for them this time. “I’ll have Kelley, Ian’s nurse, stay with him while we talk. Come with me to the conference room.”
Amanda turned to Ian. “Stay with Kelley. We need to talk to Dr. Richmond.”
“I want to go too, Mommy.”
“Mommy and Daddy will be back in a few minutes.”
Amanda couldn’t remember the short walk to the conference room at the end of the hallway, and she had limited memory of what came next.
“It’s bad news,” Greg blurted.
“Yes, I’m so sorry,” Harry said with anguish in his eyes.
Amanda’s head spun. Her world became dark as she slumped in her chair, and then slipped toward the floor. Greg caught her before she hit.
They placed her on the sofa with a cold washcloth on her forehead.
Amanda struggled to right herself. “I’m sorry. I don’t know what’s wrong with me. This has never happened before.”
“Please go ahead, Doctor.”
“We’re an internationally known referral center for blood diseases, yet we’ve only seen a handful of Ian’s illness over the last ten years. He has Blackfan Diamond Anemia, an extremely rare disease where the bone marrow cannot produce red blood cells. We know about 600 to 700 cases worldwide. We don’t understand the precise cause, but in 25% of cases, including Ian’s, we find a genetic error on chromosome 19.”
Greg stared at the doctor. “What does all this mean? What can we do?”
Richmond paused a moment in thought, framing his response. “First, Ian needs a transfusion. He’s too anemic, and there’s too much strain on his heart, that’s why he has trouble playing, and it explains why you see him squatting. Then we’ll start him on cortisone-like medication which usually helps the anemia, and if all else fails, Ian will need a bone marrow transplant.”
Amanda stood and paced the room. “Why don’t we have any specific treatments for Ian and others like him?”
Harry shifted in his chair. “I really don’t want to have this discussion with you at this time. It doesn’t feel right to lay off my frustrations on you.”
“No, it’s okay,” Greg said.
“This will sound awful…and it is,” he paused. “There’s no money in developing treatments for a disease like Ian’s or similar diseases that affect a few hundred to a few thousand children. They call the medications used to treat these children ‘orphan drugs’ since few pharmaceutical companies want any part of them. They make a hell of a lot more money creating drugs for insomnia, anxiety, and erectile dysfunction.”
“Can’t we do anything?” Amanda said.
“The Orphan Drug Act passed in 1983, and since then manufacturers have brought approximately one hundred drugs to market, a drop in the bucket. What we really need is more stem cell, or more particularly, embryonic stem cell research, but as you know, the influence of the religious right on the ideological geniuses who control our federal government have crippled this research. In my opinion, that’s criminal. Gene therapy might be another promising area for research.”
They didn’t know it yet, but Dr. Richmond’s portentous words were to change their lives forever.
Chapter Four
“No more, goddamn it,” Maureen Trask said, as she grunted and expelled Reuben Allen, her eighth, and with the Lord’s help, her last child. She thought she was through with it all at the age of forty-seven, and having gone through ‘the change’. The missed periods were expected as part of the process. What caught her unaware was the dreadfully familiar clues, morning nausea, fatigue, and swollen breasts, the undeniable signs that she was pregnant. For the second time in her life, she considered terminating the pregnancy, although this conflicted with her ingrained fundamentalist beliefs.
The Trasks sat in the family room of their manufactured home in central Florida. Clarence, the patriarch, who more often than not, couldn’t remember the names of his children, sat in his La-Z-Boy and gazed over his swollen belly. “It’s another blessing of the Lord.”
For the next six years, Clarence continued to drink heavily. Being drunk or working with the little grey matter he had left, hadn’t put a dent into the brutal beatings he administered on a daily basis to his wife and children. When his older children, especially his sons, put a stop to it by fighting back or leaving the home, Clarence was even angrier. Reuben, the youngest at age six, took the brunt of his fury. Reuben was too small to fight back and Clarence became even more infuriated when the boy sought refuge in his mother’s arms.
“What the hell kind of pussy boy are we raising,” his father shouted as he brought the black leather strap down on his son’s bare back. The pattern of violence continued until Reuben reached the age of ten. Instead of wilting under his father’s attack, Reuben repeatedly challenged his father, laughing and insulting him during the beatings, driving his father into an uncontrollable rage. The attacks finally put the small boy into the hospital and under the wing of child protective services. Clarence spent a week in jail. The court placed him on probation, and forced him into an anger management and parenting program.
Some good that will do, Maureen thought.
Reuben continued to challenge his father and tried to provoke him into another attack. He came close several times. When Reuben had his growth spurt and towered over his smaller father, physical attacks were no longer on the agenda.
Reuben, an ‘A’ student, entered high school bored by it all and with a chip on his shoulder. He became the class bully, attacking the weak and intimidating many of his teachers. By the age of seventeen and still a sophomore, they expelled him for bringing his father’s gun to school.
When he enlisted in the Marines and left for basic training at Parris Island, South Carolina, the neighborhood rose to cheer and gave a collective sigh of relief.
Reuben became the perfect Marine recruit. Physically and mentally tough, he thrived on the rigid structure and the discipline. Though fighting between recruits was common, even encouraged, the NCOs became concerned with the brutal beatings Reuben administered to Kenny Parker whom all the recruits in the platoon called the fag. Kenny required hospitalization and Reuben received counseling from the marine chaplain, Bernard Brothers.
Bernard, or Bernie as everyone called him, was an intimidating figure, six feet six inches tall, and two hundred forty pounds of solid muscle. In spite of his calling and dedication to Jesus Christ, Bernie combined intellectual and spiritual argument with, on occasion, a baptism of physical persuasion for the more obstinate.
Bernie and Reuben hit it off right from the start. Here, for the first time, was someone whom Reuben could respect.
Bernie was an evangelical Christian and encouraged Reuben’s participation in his religious activities and studies. With Bernie’s encouragement, Reuben completed his GED. Near the end of basic training, Bernie convinced his young friend to enroll in the Military Police School at Fort Leonard Wood, 130 miles SW of St. Louis.
The staff at MP school had mixed feelings about their decision to admit Reuben. He had the intelligence, the determination, and the physical characteristics of a police officer, but they were concerned about his ability to maintain emotional control at all times. Their concerns proved accurate, as one evening, Reuben found two marines engaged in a homosexual act and nearly beat both to death. A Court Marshall followed and Reuben received a general discharge from the Marine Corps.
He returned home to rural Florida, found work as a deputy policeman, and eventually enrolled at Florida Bible College in Kissimmee, where he met Francine Potter. Three months later, she became his wife. The relationship nearly ended one night when
he found her in tears. She told him that at fifteen she’d had an abortion. “It was the biggest mistake I’ve ever made in my life. I hope for His forgiveness and yours, too.”
Reuben rose, turned, and walked out, not uttering a word. Three days later, he reappeared. “We are forgiven our sin by accepting the forgiveness God offers through the sacrifice and resurrection of Jesus Christ. Do you accept Jesus as your personal savior?”
“Of course,” she replied.
“Say it, Goddamn it!”
“I accept Jesus Christ as my personal savior.”
After graduation, Reuben met with Herbert Walter, the Senior Pastor at First Glory Church in Sanford, Florida. “We believe the Bible is God’s inerrant Word, and affirm the Apostle’s Creed, the Statement of Faith of the Evangelical Free Church of America, and the Dubuque Declaration. These are statements of our faith.”
Reuben took the position as the Pastor of Adult Ministries, but soon he proved too argumentative and too judgmental even for such a fundamentalist organization. When persuasion, counseling, prayer, and threats failed to curb his enthusiasm, they asked Reuben to leave.
He returned to work as a deputy, but gradually he became involved in the in the political evangelical movement. After several years, he finally became a senior official, and then the leader of Evangelicals for Life (EFL), one of the more militant and authoritarian fundamentalist political action organizations. Reuben, created by God in his image and having been given an instruction manual, the Holy Bible, had found his place in the world.
Chapter Five
Jack tossed in bed, and then finally sat up, his legs dangling to the floor.
“What is it?” Beth groaned. “Another sleepless Rachel Palmer night?”
She didn’t wait for Jack’s reply, but crawled to her knees behind him and began massaging his neck and shoulder muscles, pressing her sleep-warmed body against his back.
The Plague Within (Brier Hospital Series) Page 3
