The Wilderness of Faith
Edited by John Sillito
“In Jeopardy Every Hour”
Susan B. Taber
A woman when she is in travail hath sorrow, because her hour is come (John 16:21).
When my two-and-a-half-year old daughter Abigail and I went to the hospital, I left the pie crusts and rolls I had mixed up that morning on the kitchen table along with the dress pattern I had bought for my new niece. It had been months since I had felt this energetic, and so that morning I had begun a few projects while I waited for our sixth child to be born. The telephone awakened me from my after-lunch nap; the pediatrician wanted to discuss Abby’s blood test results.
The day before he had said that the intermittent fever and leg pains which had plagued her for the previous four days might be symptoms of a bone infection, and he had ordered x-rays and a blood test. Since Abby now seemed much better, I hoped that he had found that she did not have a bone infection but something that could be treated with pink medicine at home. I held her on what was left of my lap, with my chin resting in her soft curls, as Dr. Miller explained that since her white count was 30,000, she probably had leukemia, and he wanted me to take her to the hospital that afternoon.
Although I was already halfway to the hospital in Wilmington, I returned to our home in Newark to grab some clothes and our toothbrushes. I punched down the still-rising dough and left a note on the front door directing the four older children to a [p.156] neighbor’s house. Before I picked up my husband Doug from the university, he left a note on the door of the seminar room cancelling the Institute class I was supposed to teach.
At the hospital I recited Abby’s medical history over and over as she was examined by a nurse, a medical student, a resident, and two hematologists. Doug went home to take care of the other children. Several blood samples were drawn; we were sent downstairs for a chest x-ray; I held her hand while the IV was started. At nine o’clock Abby’s nurse gave her an orange popsicle and pinned her armboard to the sheet so that the IV could not come loose. I eased my unwieldy body onto the cot which she’d pulled out of a chair for me and tried to comprehend what the hematologists had told me.
Ten years earlier I had sat silently weeping in St. Luke’s Hospital, New York. Nine-month-old John, our first born, had been admitted for tests because of his enlarged spleen and liver. After the pediatrician had informed me that the bone marrow test was “suspicious,” I sat wishing Eve had never bitten the apple and trying to prepare myself to give John back to God. My week of anguish before the doctors released John without a diagnosis had taught me a powerful lesson. Doug had administered to John the first night in the hospital and had blessed him that whatever had been wrong with him was gone and that he would be fine. I, however, had expended all my emotional energy trying to prepare for the worst and had found little comfort in the blessing. I would not make that mistake now. Since that time my faith in Doug’s priesthood—based not only on the often prophetic character of the blessings he pronounced but also upon his daily prayer and scripture study—had increased. When Doug and I had administered to Abby the day before, he had said that her intermittent fever was caused by an infection and would go away when the infection subsided. She must, therefore, I reasoned, not have leukemia but something else. I resented every painful procedure and every beep of the IVAC that was making it impossible for me to sleep.
Doug had also given me a blessing that morning and had admonished me to develop my own spiritual resources. He had said that many would turn to me for wisdom and for strength. Neither, certainly, was in evidence now. I was out of control. Before morning I had to regain my composure or I would not be of any use to Abby.[p.157] Opening my Bible, I turned to the Sermon on the Mount. Suddenly the meaning of the “lilies of the field” came clear. I understood that Christ doesn’t mean for us to go without clothing or to be slovenly, but rather that our persons as children of God are so glorious, so exquisitely wonderful that clothing and all our other acquisitions are truly superfluous. At last I was able to pray for strength to help Abby through the bone marrow aspiration and lumbar puncture scheduled for the morning.
We were busy the next day. The Mormon hotline must have hummed all night, for visitors came in all day long. Our home teacher arrived even before Dr. Benzel, a hematologist, came to perform the bone marrow. Doug said that casseroles were being brought in for him and the children. When he arrived, mid-morning, we were sent to see a woman whose name tag identified her as “Charlotte Sheehan: Pastoral Services: Parent Liaison.” Doug brushed her off by saying that since the diagnosis wasn’t confirmed, it was pointless to discuss how we were going to deal with leukemia at this time. I didn’t want to talk to her either. There was no way she could understand the reality of the blessing which Abby had been given. To let her be helpful, Doug said he would appreciate some information to read if Abby did have leukemia. We agreed there was no point in calling either set of grandparents in Salt Lake City and Seattle yet. When we knew for sure this evening, we would tell the children and call our parents.
Dr. Benzel returned late in the day as I was trying to maneuver two dinner trays, a high chair, Abby, and all her tubes in the small open area of the room. As I squeezed catsup from a plastic tube over Abby’s french fries, he told me that she did indeed have leukemia. He asked me to call Doug to arrange a time when we could both talk to him. Doug had gone back to Newark, twenty miles away, and had been on alert at the university, but he could not come now until after he had fed the children and settled them down. When I flatly told him over the telephone that the diagnosis was definite, his faint “Oh” was like a physical blow. Impossibility became reality.
After dinner with our four oldest children—John, Alan, Lisa, and Christina—Doug drove into Wilmington again. Our home teacher also returned to help Doug administer to Abby. The blessing was very short; Doug said afterwards that he felt she had already been blessed to recover and he couldn’t add to that. Dr. Benzel took [p.158] us into the nurses’ break room where he carefully explained the treatment protocol and the mechanism of her disease. He was quite encouraging and said that he’d rather she had leukemia than some of the other diseases he treats. Doug, ever the scientist, got him involved in a technical discussion of physiology and pharmacology. While he went to the nurses’ station to sign the release forms, I went back into Abby’s room. The IV therapist was all ready to give the first dose of vincristine. She didn’t think the present IV was flowing well enough to inject something as caustic as vincristine, so she began to insert a new one. Four nurses held Abby down while the therapist repeatedly stabbed into her arm searching for a vein.
Finally, at midnight, it was all over and Abby and I could go to sleep. She awoke several times to use the toilet. Each time I crawled back into my cot I had to use deep breathing to become comfortable. Eventually it occurred to me that perhaps this was more than muscle strain and awkwardness. I went out into the hall where I could time my contractions. It was two a.m. and they were ten minutes apart. An hour later I called Doug and asked him to come and take me to the maternity hospital. The night nurses kept offering to call an ambulance, but I heroically refused. Nurses glided silently through half-opened doors to halt the insistent beeping of the IVACs. The cloud of cigarette smoke near the elevator had finally dispersed. The melodramatic qualities of the scene did not escape me. Here was an episode full of drama and pathos—the promise of new life in the very shadow of mortality.
Doug arrived at 3:45 a.m. Julie Ridge, our closest church neighbor, came with him to stay with Abby. On the way Doug ran several red lights and made a couple of illegal turns even though I insisted that it wasn’t necessary; he secretly enjoyed speeding along through the deserted streets. I was excited by both the drama of being up all night and the nonchalance I was able to exude as an experienced mother. This was, after all, my sixth delivery, and I expected it to be quick and unmedicated.
The baby should have appeared by 6:00, but it didn’t. Labor slowed and stopped; after two nights without sleep, my body could not continue. Finally, after a nightmare of pitocin and Demoral, I awoke briefly to see a baby boy on the bed with me, the umbilicus wrapped around his neck. He turned pink and cried, and I went back to sleep for the rest of the day. That night I recorded the [p.159] experiences of the past two days in my journal and then added, “This is a time when our beliefs and philosophy are severely tested, and I must discipline my feelings and thoughts to reflect my testimony and the guidance of the Spirit—perhaps so I can have the Spirit.”
Julie said that Abby’s nurses were amazed by our support system. Doug took the two boys to stay with a ward family who happened to live on our school bus route. The girls went to stay with another neighbor and colleague of Doug’s. Julie would spend another day with Abby while Doug made arrangements to come and stay with her while I recuperated. The Relief Society president halted the flow of casseroles since no one was home and arranged for women to help me when I was released from the hospital. The ward held a day of fasting and prayer for Abby, and the Primary children made cards and sent small gifts to her. We had lived in Delaware for just a year; and as willing arms picked up our duties and loving hearts shared our burdens, I felt that Abby belonged to the ward almost as much as to us. Three years earlier when in the fourth month of my pregnancy I had nearly lost her, our church friends in Tennessee had cared for the other children, brought in meals, and even helped us move across town. When she was finally born, I felt that the ward had sustained her life. Once again we were in the Lord’s hands.
The telephone was almost an appendage. I spent hours listening to and cheering up the other children as well as consulting with Doug about arrangements for the month that we expected Abby to be in the hospital. I wanted their lives to be as normal as possible; the less disruption, I felt, the less they would worry about Abby or miss me. Our families called us and so did friends and relatives from Tennessee, where we had formerly lived. Over and over I comforted callers as I explained Abby’s good chances for a remission. The more I said, the more I wondered if I were deluding myself. Was I really the pillar of strength that people said I was, or was I just not facing reality? Julie reassured me by telling me that when she was with Abby she felt the presence of the Comforter; Doug reminded me of his impression that she would recover.
By the fifth evening my post-partum euphoria had worn off. I was tired and scared. I had spent too much time talking and not enough time sleeping. An officious nurse who had not been on duty [p.160] since Robert was born came in to discuss my plans. She was skeptical and told me to go home to bed before going to stay with Abby and to leave Robert with someone else.
Tuesday morning Robert wanted to nurse every half hour, and I could hardly get dressed or eat my own breakfast. Robyn, my visiting teacher, came at 8:30 to take me home where three other ward sisters were waiting to help me clean the house. One went to the store to buy disposable diapers, baby wipes, and other necessities while I sorted the laundry and packed. I got out clean sheets for all the beds, but I couldn’t change Abby’s new rainbow sheets. They had been a graduation-from-the-crib present; and although it had been only a week since she had slept in her new bed, we had entered a world forever altered.
Neighbors dropped by to bring the mail they had collected or just to say hello. They, too, marvelled at the Relief Society cleaning crew. Had I been less desperate I would have been humiliated by the overpopulated refrigerator and the sticky kitchen floor, but I was grateful for the clean rooms and fresh sheets which were tangible manifestations of the prayers offered by ward members. Although I had once been a Relief Society president, I gained a new appreciation for the power of organized religion. By noon the house was clean! Julie Ridge stayed behind to hang up Doug’s shirts from the dryer and took a load of laundry to her house. Robyn, my visiting teacher, drove me back to the hospital so that Doug could teach his afternoon class.
The baby had been very cooperative. He had slept peacefully while I whirled through the house, and then had given me time to unpack and write in my journal that afternoon, but he refused to go to sleep again after his eleven p.m. feeding. After several hours of alternately nursing him and walking through the corridors with him, I finally remembered the bottle of formula which the hospital had sent home with him. I groped around the top shelf of Abby’s locker until I found it. Two hours later, at 6:30, the phlebotomist arrived to draw blood for Abby’s daily CBC, and a new day began.
And we end up making an incredible tragedy out of it, instead of being able to look at life as a challenge, we look at it as a threat. Instead of at the end of life celebrating all the things that we have been able to share and to give and [p.161] receive, we mourn the loss as we drown ourselves in self-pity. And all great moments we, in a way, turn into tragedies.… Unconditional love. It’s the only thing that helps you not only not to be afraid of living, but of dying (Elisabeth Kubler-Ross, “To Live Until You Die,” transcript, Nova, PBS).
Gradually Abby, Robert, and I began to establish a routine. Abby enjoyed having Robert with her in her bed while we kept him awake in the mornings. Usually, the nurse bathed Abby while I bathed Robert from a small basin on the rolling bed-table. Afternoons we all slept, at least for a short time.
One night I read the books which the parent liaison, Charlotte Sheehan, had given Doug. They had depressed him, especially the sections on preparing children for death. From the maternity hospital I had tried to bolster his courage by stressing her 90 percent chance of achieving a remission. Had she been in a car accident, I reasoned, 90 percent would sound very good. I didn’t realize until I read these pamphlets that only 50 percent of children with leukemia are actually still in remission after five years. In the case of most accidents or other illnesses, the time before it is known whether the child will survive is relatively short. In the case of cancer, even when in remission, there is no certainty that the danger period has passed. There are only statistical probabilities. I mustered every reason I could think of why Abby’s chances should be better than 50 percent, but I cried too.
Autumn had fully come as the days stretched toward two weeks. The streets were covered with dead leaves. Many afternoons Doug drove in so he could relieve me while I took a walk. I hoped to regain my vitality as well as lose my baby fat. A favorite route led through a park along the Brandywine River where the trees were gloriously colored, though the wind was often bitter. One afternoon as I walked back up the hill to the hospital, the street was suddenly flooded with light, and a strong feeling of peace and hope came over me. I felt that whatever happened, my test would not be losing Abigail. When I told Doug about it, he said that it was most important that we help Abby love life and develop a healthy personality in spite of the years of treatment ahead of her.
One afternoon I happened to watch a television program about the work of Elisabeth Kubler-Ross. I was deeply moved by her [p.162] emphatic affirmation of the importance of life, even under the most difficult of circumstances, and of the possibilities for hope and fulfillment even while dying. My tears were not only of pity for her patients and their families and myself but also of gratitude for the eternal aspects of life which she espoused: love, service, honesty, and acceptance.
Abby had been hospitalized for just two weeks when her doctors decided that she was doing well enough to go home and finish her chemotherapy as an outpatient. They performed another bone marrow aspiration and lumbar puncture, but now I was allowed to stay in the room with her. At first I wondered if she would feel that I was an accessory to the pain that was inflicted upon her if I stayed with her, but she allowed me to comfort her during both procedures. I have since found that my being there has helped Abby endure these procedures and express her feelings freely. She learned to trust me as I learned to tell her exactly what would happen each day. After she learned what to expect, she did not cry or fuss until the actually painful part. More than once, the doctor, nurse, and I all ended up with tears of admiration in our eyes.
We all came home from the hospital after an absence of seventeen days on Doug’s birthday. The after-school sitter had baked him a cake, and Doug’s sister and family from Texas visited us for the weekend. My heart and eyes followed Abby as she silently moved from room to room Saturday morning, quietly playing in each of her favorite haunts. Now that I was sleeping in my own bed, my tense shoulders began to relax and my head stopped aching. The worst was behind us! We had come through relatively unscathed.
The next week we drove to the hospital three times for chemotherapy. Robert usually slept in his infant seat during the procedures. Then I’d wake him and nurse him during the hour that Abby was being observed for possible allergic reactions. Neighbors brought in dinners on our commuting days, and the children helped keep the house straight and fold diapers for Christmas spending money. On the last night of the induction phase of chemotherapy, Abby woke up crying with the pain in her legs. We had expected that the bone marrow aspiration scheduled for the next day would reveal that she was in remission. Why was she having bone pain now for the first time in four weeks? She must have relapsed already or not even have gone into remission. As I knelt beside her bed trying to comfort [p.163] her, Abby seemed like a changeling. Her face and body were bloated from the prednisone, and there were bald streaks among her honey-colored curls. Of what use had all this treatment been? When I went back to my room, I pled with the Lord for her life, carefully adding, “Thy will be done.”
In the morning Dr. Benzel was jubilant. “We did it!” He said just to give Abby some Tylenol for future bone pain. When I called my parents that night, my mother’s relief was audible. Her sister Fern had died twenty-two years earlier of leukemia. My father sounded for the first time as if he thought Abby had any hope of being cured.
We had celebrated our son Alan’s birthday in Abby’s hospital room and Lisa’s a week after we came home. Thanksgiving was another strictly family day. Because of Abby’s suppressed immune system, we had neither invited nor been invited as guests. I spent the day preparing a traditional turkey dinner complete with two kinds of pie and broccoli, which was miraculously still growing in the garden. As I worked, I felt gratitude for Abby’s life, especially toward all the parents who had allowed their children to receive experimental treatment. Without the things that had been learned from their suffering, we would not have any hope of keeping Abby with us. I thought about Keats a lot, too. A tinge of mortality certainly did add a poignant zest to life.
Except for vincristine which she received once every four weeks at the doctor’s office, Abby’s medications were all given by mouth. Every Tuesday I took her to a nearby laboratory for a blood test; then the nurse would telephone that afternoon to give me the dosage levels for the coming week. She also had a weekly lumbar puncture with methotrexate to prevent meningeal leukemia.
Dr. Bean, the neurologist, always seemed very concerned about the effects of Abby’s illness on the rest of the family. I always assured him, somewhat defensively, that we were all communicating with each other just fine. “Sometimes,” he told me, “fathers escape by going to work. It’s an acceptable way to be less involved.” I felt satisfied with Doug’s level of participation but found myself increasingly short-tempered on Wednesday mornings. By the seventh time I didn’t want to go alone, so I insisted that Doug come with us.
By the time Dr. Bean arrived, Doug was quite impatient, Robert had slept too long, and Abby and I had exhausted all our [p.164] amusements. I was helping the nurse hold Abby in position when Dr. Bean asked, “Are you all right?” I looked up, startled, but he wasn’t talking to me. Doug was very pale and began talking in the fast, incoherent way he does when I’m in labor. Dr. Bean asked him to lie down, but Doug said he’d just walk around until he felt better. Finally he did sit down. Afterwards Doug claimed he hadn’t been upset. Dr. Bean asserted that he had been affected more than he’d realized. Later at home Doug and I shared our sorrow; I realized that we had been so busy coping that we really hadn’t had time to share our feelings.
And his disciples asked him, saying, Master, who did sin, this man, or his parents, that he was born blind? (John 9:2)
Robert’s one-month weight gain was less than it should have been, though Dr. Cohn commended me for keeping up the breast-feeding in spite of our hectic medical schedule. “I guess you could even nurse in a telephone booth,” he remarked. He also said that it was hard to understand why illnesses such as leukemia had to strike such nice families. “Perhaps,” he ventured, “it is because they have the strength to handle it better than others.”
When the incomprehensible happens, we seem compelled to explain it. When my uncle drowned during polio therapy, my parents explained that he must have fulfilled his earthly mission and had gone on a heavenly one. My eight-year-old mind could not quite understand how Heavenly Father could need Uncle Bill in the spirit world more than my aunt and six cousins needed him; but when I was fourteen, I accepted Aunt Fern’s death as a release from her sufferings, wondering only why a God who had created the world had also created such suffering.
When I read Sterling McMurrin’s Theological Foundations of the Mormon Religion for an Institute class my junior year in college, I eagerly embraced the concept of a nonabsolute God who had created neither evil nor suffering but was in fact involved in overcoming both. My anguish over John had largely been a struggle to accept emotionally this philosophy. Although I had realized that I would have been at peace if my faith had been stronger, I had been grateful for the spiritual watershed of that experience.
[p.165] All these things shall give thee experience and shall be for thy good (D&C 122:7).
Someone in our ward philosophized that this had happened to make us a better family. How can I accept a divine program of family improvement predicated on the suffering of a two-year-old? I could find no reason other than the laws of probability for Abby’s illness. Even the first night in the hospital I had been acutely aware of how fortunate Doug and I had been during our lives. Since then in almost every situation, I could see the Lord blessing and helping us. It reminded me of the week a few years before when all four children and I had been ill while I was working on a major church assignment. I had been very aware of receiving just enough strength to get through each day and had felt the spirit guide me as I decided how to spend my limited energy.
Our goal now was life as usual, though there were adjustments. Since Abby could not go into stores, I had a sitter come in twice a week so I could run errands. I had resumed teaching Institute even before we came home, but on Sundays Doug and I split up for church. I took the older children and went to choir practice and sacrament meeting. Doug and I switched places during Sunday School and then he taught the deacons’ quorum and brought everyone home.
Doug and I had always been active, almost to the point of fanaticism, but I found it surprisingly easy to sink into my bed after feeding Abby and Robert while the rest of the family was still at church. Singing in the choir became one of the pillars of my spiritual life. Most of my journal writing was done in doctors’ waiting rooms. One day I recorded in a confused metaphor that I felt as if I were spinning dizzily on a speeding downhill roller coaster. One day feeling unable to concentrate on any of the tasks at hand, I went into the bedroom to pray. As I knelt to beg for help, I felt that instead I should express gratitude for my blessings. Suddenly in the middle of giving thanks for Doug and for my children, I caught a glimpse of the eternal glory of their spirits. On Christmas day, we were all able to attend church for the first time in two months.
If in this life only we have faith in Christ, we are of all men most miserable. But now is Christ risen from the dead,[p.166] and become the first fruits of them that slept (1 Cor. 15:19-20).
The next Sunday though I had to take Abby to the doctor while the others went to church. Her high fever was not responding to the antibiotic prescribed the day before. When the pediatrician saw the infected-looking blisters on her fingers and legs he thought she had chicken-pox, often deadly to children on chemotherapy. As I drove home to pack, I prayed, “Why does Abby have to suffer so much? What purpose is there to all this?” The thought formed whole in my mind, “The bonds between you and Abby will be stronger even than death.” Before Doug took us to the hospital, he and Doug Ridge administered to her as she sat in her high chair. Doug “rebuked” the infection and said she would soon be well.
We were ushered into a tiny isolation cubicle with two cribs but with no telephone, television, or privacy. The outside window overlooked the cemetery. The doctors prescribed antibiotics and acyclovir through the IV while they tried to find out what she had. Drugs were injected into the solution practically every hour of the day and night. By Tuesday the infection was flourishing, and I wondered when it would be “rebuked.” A huge pustule had appeared on her leg, making ten or twelve large ones all together. I wept in the shower; I sobbed aloud walking beside the frozen Brandywine River. Wednesday night when a rash broke out on Abby’s legs and feet, I was afraid she had toxic shock. The cultures eventually grew staph, and the doctors began to believe that she did not have chicken pox. One of them told me that on a healthy person her raging infection would have been a mere pimple.
As I watched over her Thursday morning, grateful that her temperature was no longer climbing between 104 and 105, I envisioned her peacefully asleep in a coffin. When I raised the window blind, there were grave diggers actually digging across the street. Expecting poor Yorick’s skull to be tossed up at any moment, I leaned my head into the corner and quietly let self-pity and despair wash over me. It had been easy to be brave during the two months when things were going according to plan, but I had wondered if I could be so if they weren’t. I was embarrassed when the head nurse came in and sent me to talk with Charlotte Sheehan; I had been found out, but I was not willing to reveal what I felt was my abysmal [p.167] lack of faith. After Charlotte told me that she had lost a child to Tay-Sachs disease, I was able to share with her my concerns about John’s anger and Lisa’s frequent headaches. Eventually I explained that I did believe that Abby would recover, but that I was having a hard time keeping that faith strong.
That evening we were moved to a larger room on the regular floor. Abby rode regally in a small wheel-chair; and as soon as we were settled, she demanded and ate two bowls full of the Cheerios which Doug had brought from home. It was another full week, though, before she was strong enough to go home. We had spent exactly a month out of the preceding two and a half months residing in hospitals. Robert now slept through the night, and Abby expected to have all my time and attention. Now I knew why the doctors had told us to call at the first sign of any illness. In February Abby developed pneumonia and I felt that my promptness in calling the doctor for an antibiotic had made it possible for her to be treated at home instead of in the hospital.
I kept busy to avoid brooding, but I was always aware that I might not be able to fulfill my commitments. All my life I had projected myself into the future; now the present was everything—the future nothing. Easter Sunday took me by surprise. Practicing the music had soothed and elated me, but that morning I discovered a new dimension of the gospel. I had struggled for years to understand the Atonement, but that day the promise of the resurrection resonated through my soul, and I realized that I apprehended it in a way that had not been accessible to me before.
And why stand we in jeopardy every hour? (1 Cor. 15: 30)
At the beginning of May, Dr. Benzel increased Abby’s chemotherapy to the level that had wiped out her white count at New Year’s. I was apprehensive all month, but nothing happened until the second Saturday in June. After a picnic and a swim, Abby seemed very tired. By morning her temperature was 103, and since her white count was very low, she had to go to the hospital. This time, however, after we had moved in, they told the doctor that Robert couldn’t stay with us. How could even the Relief Society take care of a seven-month-old baby who would not take a bottle, and how would I [p.168] survive? Eventually they relented, but I knew I would have to start weaning Robert.
I was chagrined to find my faith plummeting as Abby’s temperature rose and stayed above 104. Although she really was not as ill as in January, her temperature stayed high for several days. Was she in greater danger than I had supposed? I prayed constantly that her fever would break. The words of the blessing that Doug had given her came into my mind as I pled with the Lord. He had promised her that she would be able to rest, eat, and drink as she needed to get well. She was doing none of those. That afternoon, I decided, I would make sure she slept, at least. I rubbed her back and held her hand until she fell asleep. Several nurses came in and out, sometimes talking loudly and always leaving the door open when they left. I made a sign, “SLEEPING: Please keep door closed,” and clipped it to the door. When Robert awakened from his nap, I took him into the hall for another hour while Abby slept. The nurse ordered popsicles and chocolate milk which I gave Abby at every opportunity. That afternoon her temperature did not go quite as high, and she was able to go to sleep more easily that night.
When her temperature had been normal for two days, I asked the hematologist if these infections were an expected part of therapy or if Abby were unusually susceptible. He looked down at the floor and then explained that their strategy is to keep her right on the edge. Infections come when the chemotherapy has been pushed too hard. “But,” he added, “these are inevitable because if we didn’t push too hard occasionally, she would not be getting enough chemotherapy.”
Today the nurse removed the IV and tomorrow we’ll go home. Again we pick up the threads of our life. Abby will tumble in the living room with her sisters, swing in the backyard, and in a few weeks go to the pool. I’d like to keep her in her own room like Rapunzel, but of course, I can’t. Doug says he’s realized that we have to think in terms of “when Abby is hospitalized again” not “if.” My spirit continues its tightrope walk between hope and dread. While here I’ve read some of the Book of Mormon and reread my journal. It reminds me of the hope and comfort that surrounded us when Abby first became ill. I pray constantly that I correctly understand that spirit.
* * * * *
[p.169] Just two years later, on 3 June 1986, Abby came home from the hospital for the last time. Leukemia had invaded her bone marrow in January and it had taken until the end of April to achieve another remission. She was immediately scheduled for a bone-marrow transplant in mid-June, the earliest possible time. On 8 May, however, Doug stated in a priesthood blessing that Abby would be happy “when she returned home to her Heavenly Father and would be glad to be there.” He told me that he felt she had months, not years, left with us. I was anguished and when her bone marrow was completely clear two weeks later, mystified by the incongruity. The next week she was given another course of high dose ARA-C to maintain the remission, but just a week later there was leukemic cell in her daily CBC report. A bone marrow aspiration revealed that she had gone out of remission again. Since her doctors advised us that further treatment would not achieve a long-term remission, we brought her home to enjoy the summer with her family, friends, toys, and swing set.
On 7 August 1986, Doug and Doug Ridge administered to her for the last time. Half an hour later she died peacefully in her sleep.[p.171]