On August 31, Elizabeth receives her first round of chemotherapy. The doctors tell us they will give her intensive chemotherapy right from the start because she has Stage IV cancer. It’s brutal. For five days, she sleeps day and night. On the sixth day she begins retching. How can this be? Two weeks ago, Elizabeth was swimming and riding her bike, and now she lies pale, weak, and prone in a hospital bed. On the seventh day, we bring Elizabeth home. She’s thin and frail, but her engaging smile dispels some of my worries. Olivia helps her out of the wheelchair and onto the sofa in the family room. I cook shrimp, Elizabeth’s favorite food. After eating two shrimps, she says, “Thank you, but that’s enough for now.”
Concerned about her flushed face, I take her temperature. The thermometer reads over one hundred degrees. At his earlier instruction, I call Dr. Kin, and he says to bring Elizabeth back to the hospital. My heart sinks, and Elizabeth starts to cry. Neither of us has the strength for another ordeal.
About 8:00 p.m., Olivia and I support Elizabeth as we slowly walk to the car. At MGH, they have a double room ready for us on the pediatric floor. Dr. Kin enters, and Elizabeth gives him a weak smile.
“I’m sorry you had to come back here, Elizabeth, but we need to give you fluids to bring your fever down. We’ll set up the IV and won’t have to disturb you very often. You should have a quiet night.”
Elizabeth nods and soon goes to sleep. She has to spend one more week in the hospital to get the underlying infection under control.
Over the next few months, the relentless march of treatments carries on. Each treatment leaves Elizabeth weaker than the one before. In a different way, my daughter Olivia is suffering greatly, too. She’s a freshman in a high school with six hundred students in her grade, far greater than her eighth-grade class of sixty. She sees her sister, who is her best friend, perilously weak, and she’s terrified about the possibility that her sister might die. And, in the midst of this trauma, I decide to leave my domineering then-husband and move into my sister’s home—but rather than feeling stressed, my daughters and I actually feel greatly relieved. My sister Susie’s home is stable and loving, and we are well cared for.
One night, when Elizabeth and I are in the hospital, the doctors deliver more horrible news. Elizabeth also has tumors in her right femur, hip, sternum, lungs and skull. She starts trembling and hyperventilating. I hold my daughter’s hand and watch as the nurses administer injections of Ativan to calm her. I stay awake all night sitting by my Elizabeth’s bedside holding her hand when she reaches out to me. With tears streaming down my face, I silently implore, Why, God, why does Elizabeth have to suffer so? Can’t You make her better? Where are You?
The following morning Elizabeth asks Dr. Kin, “Are there any experimental treatments that could help me?”
“I’m going to a national conference next week,” he responds, “and I’ll ask everyone about any treatments that could help you. When I return, I’ll let you know what I learn.”
The following week, Dr. Kin tells us about an experimental treatment being done at the Mayo Clinic in Minneapolis. A radioactive liquid is injected into a vein and the liquid coats the tumors cutting off their supply of blood which they need. We’re elated! There’s hope! This treatment has only been done at the Mayo Clinic in Minneapolis, but Elizabeth is too weak to travel. With persistence, Dr. Kin gets approval for the experimental treatment to be done at MGH. Three months later, Elizabeth receives this treatment of radioactive fluid. She stays in the hospital in isolation for three days and returns home happy.
It’s the beginning of May, and we have hope that the experimental treatment will arrest the advancing cancer. We know the impact of the treatment will be temporary but devastating for Elizabeth. During the first week of the month, Elizabeth has seven stem-cell transfusions, one platelet transfusion, and two blood transfusions. By the end of the week, her blood cell counts return to normal. We’re ecstatic to learn that Elizabeth’s primary tumor, in her right femur, did not grow in the previous month. It’s wonderful news!
During the next week, I collapse. I can no longer cope with my exhaustion. Then out of the blue, my friend Lisa calls me and invites me to spend twenty-four hours with her at her home in Newport. Susie agrees to look after Olivia and Elizabeth. Thankfully, there are no medical treatments planned for the next few days. I kiss my daughters good-bye and head off to my favorite city by the sea. When I get there, I fall into my friend’s arms, crying.
After a restorative lunch and nap, I walk along a beach. A brisk wind is blowing, and surfers in full bodysuits ride the waves. After a while, I sit on the beach next to a large boulder that protects me from the wind, but which gives me a full view of the ocean. The warmth of the sun on my face is comforting. I’m not sure how much time goes by, but I waken with a yawn. By the sparkling sea, I feel God’s presence and peace.
Back at home, I’m clobbered by a new reality. One month after the experimental treatment, the latest test results show more growth of Elizabeth’s primary tumor. We’re faced with another decision. The doctors recommend radiation to slow the growth of the tumor, but that has risks. Her femur is already weak, and radiation could cause a fracture, leading to cancerous cells invading her bloodstream. A fracture could lead to amputation. Despite the risks, Elizabeth wants the radiation to help relieve her pain. I can’t bear this. Foreboding haunts my dreams.
Radiation helps to reduce Elizabeth’s pain, but we learn that the tumors in her lungs are multiplying. It’s more and more painful for her to breathe. She’s given oxygen to help her breathe more comfortably and a morphine patch to help control the pain in her leg.
The wall of my denial breaks. I can no longer hope for her recovery. I have to make the end of her life as comfortable and loving as I possibly can. Olivia and I are by Elizabeth’s bedside day and night. My sisters, parents, and closest friends visit a few times a week. Life goes on around us. Some days, I hear the bang of the basketball as my neighbor’s son tosses it at the backboard, see children on bikes, and watch people jog by. But I’m no longer living in that world. I’m on a barren shore watching my youngest child drift away from me.
One evening, Elizabeth whispers to me, “I’m ready for hospice care, Mommy.”
Numb, I make the call the next day. Soon nurses and social workers arrive. Not only do they care for Elizabeth, but the social workers also take time with Olivia, too. Calmly and quietly, they come and go. They gently prepare me for what will happen next. I shift from being calm to wanting to scream. But I can’t. Not now. Then one evening after Elizabeth has held on for as long as she can, she drifts away from us and dies in my arms. Olivia and I are inconsolable.
At Elizabeth’s service, two ministers, who were chosen by Elizabeth, preside. In their own way, each speaks of Elizabeth’s compassion, strength in adversity, humor, and the impact she had on those around her. One minister reads a poem I had written, and the other reads a letter Olivia had written to her sister. A few minutes later, we sing “Sleep My Child, Sleep.” I can’t hold back my sobs. Olivia leans into me, and we hold each other.
Toward the end of the service, the choir sings “Pie Jesu.” The voices and organ music blend in a mystical harmony. The highest notes, so clearly voiced, lift to the peaks of the sanctuary, transporting us closer to where Elizabeth’s spirit now lives. An awed silence follows. Even though we had hoped that Elizabeth’s funeral would provide some comfort and closure, now that it’s over, we’re devastated. She’s truly, utterly gone.
Part Three of Chasing Hope: A Mother’s Story
During the days after Elizabeth’s death, I feel like I’m scrambling up a steep mountain trail and gasping for breath. My pulse quickens, my chest contracts, my legs cramp. At night, I fall asleep exhausted, even if I have only raked leaves, sobbed, and rested. Life overwhelms me. Chores that I used to sail through before, like shopping, are rugged. Sometimes in a grocery store, I see people I know. I slip down a different aisle to avoid them; other times I stop and we hug. One day, I walk by the Little Bite brownies that Elizabeth loved. I run out of the store crying, jarred to my core.
As the winter months slowly pass, I spend most of my days indoors. I read books about loss and grieving. I read books about healing. I read books about coping. I renew my practice of writing before I fall asleep at night. This gives me a way to remember joyful and painful times, moments of strength and periods of collapse, hilltops of hope and caverns of despair. Over time, I learn how to express my feelings rather than keep them locked inside. The winter months are brutal for Olivia, too. She withdraws in silence and spends more and more times with friends after school. I’m crushed. I thought that after Elizabeth died, we would spend more time together. I begin to realize that we are both prisoners of despair locked away in our own separate cells. I don’t know how to unlock her cell door or mine.
Friends reach out to me. Sometimes I venture out, and other times I stay inside not willing to risk showing my vulnerable side. But with the persistent kindness and outreach of my friends and community, I take a few more steps beyond my front door. Then a shift happens when I need to return to work. I’m welcomed kindly and reintegrated with responsibilities slowly. I couldn’t have asked for more. During my lunch break, I often walk in the Boston Gardens and admire the flowering cherry trees, the rows of brightly colored tulips, and the swan boats that travel around the pond. The resurgence of the natural world after a long winter gives me hope and draws me into the rhythm of life again.
But as the weeks turn into months, my new commitment takes an unexpected toll. Commuting three hours each day, eight-hour days at my desk, and growing neck and back pain are exhausting to me. One morning while working in my cubical, guttural sobs escape from me. My manager motions me to come into her office and asks if there is anything she can do. I shake my head, sobbing. She looks at me with concern and suggests that I leave for the day. On the way home, I call my counselor.
When I reach his office, I burst, “I’m so sad and scared about the first anniversary of Elizabeth’s death. It’s only a month away. I can’t bear that she’s been gone for a whole year. I can’t cope …”
My therapist sits quietly until I calm down. He hands me a copy of the Buddhist prayer of lovingkindness. He has given this before and knows it calms me.
May I be filled with lovingkindness. May I be well.
May I be peaceful and at ease. May I be happy.
After I settle, he suggests, “Rather than anticipate with fear the first anniversary of Elizabeth’s death, why don’t you plan something special to mark this date and honor Elizabeth? If you craft a plan, then you can have some control over what will happen on that day, rather than be afraid about what that day might do to you.” When I return home, I call my friend Lisa and we make a plan to plant a garden at my house in memory of Elizabeth. My sister Susie, Olivia, Lisa, and a few other friends and I weed, shovel, and plant a beautiful garden on “Elizabeth’s day.” I actually feel a sprinkle of joy planting her memory garden. Olivia is smiling, too. She gives me several big hugs. We haven’t felt this close in months.
Years have gone by, and each day I think of Elizabeth. Now I remember her silly antics when she was a child, how she was known as the prankster of the playground, and how she made us all laugh and laugh. Sometimes, when I dream, I remember cuddling Olivia and Elizabeth when they were toddlers. I can feel their warm breaths on my skin. I remember putting mittens on chilly pink hands; how after being dropped off by the school bus, they loved to snack on my homemade scones and warm crème brulée. I remember when before her impending death Elizabeth said to me, “Mommy, I want you to remarry one day and be happy. I want you to read to children like you did in my first grade. Remember how you loved those days?” These memories sustain me.
Some of Elizabeth’s wishes did come true. I believe she would be overjoyed to know that six years after her death, I did marry a kind, supportive, and gentle man. I have the blessing of stepchildren and grandchildren. Olivia has struggled as I have, but she has come to a place of acceptance. To my great joy, she is discovering her path in life, too.
As I’ve walked down the cobblestone path of despair writing has allowed me to express feelings and memories that I may otherwise have kept trapped inside. In doing so, I have faced into my adversity and have learned that while cancer took Elizabeth’s life, her loving spirit and grace will be with me always.
Faith Wilcox is the author of a book of poetry, Facing Into the Wind: A Mother’s Healing After the Death of Her Child. Her second book, Chasing Hope: A Mother’s Memoir of Love, Loss, and Learning to Live Again, will be published in June 2021 by She Writes Press. Excerpts from Chasing Hope are included in these blogs. Faith also leads a journal writing program at MassGeneral Hospital for Children called “Journals of Hope.” The goal is to give parents and children thirteen and older the opportunity to express their own stories, relieve stress, celebrate victories, and honor their grief. To learn more, go to: www.faithwilcoxnarratives.com.