Take Root Downward, Bear Fruit Upward
BETSEY'S BACK ARCHES as the chemotherapy drips into her blood. Transferred to Oncology from ICU, we start this medication the same day as a last ditch effort to save her life. I flee the room, the night she needs me, crying about the pain my one-year-old suffers fresh out of brain surgery, and my inability to help.
She lives, and the rounds of chemo continue. I begin to understand that our medical team doesn't question whether she might live or not, but how she will live. "Quality of life" becomes part of my daily vocabulary as I interact with the medical world. I hold her and think of bone marrow, and our efforts to take away marrow in the bones to defeat her enemy. Repeatedly she undulates from strength to weakness as her strong body fights a strong tumor. We try chemo and radiation many times over.With each new treatment we explain in cold, clear terms to a toddler the expected pain. We tell her how much we want her to stay with us, but how she may go home to God, if the pain grows too great.
Suddenly, we find ourselves two years out from a one-day prognosis. Now graduated from law school, we move onward. With trepidation and joy we move to Oregon, where Adam accepts a clerkship with a judge on the Ninth Circuit.
Betsy still requires the extensive care she needed at diagnosis. We spend hours a day feeding her and managing her supportive devices. Still, I find joy even in dirty diapers and piles of laundry. I value my husband and children, and I want Betsy to serve someday as wife and mother. I find a scrap of paper listing her name and blessing after her birth; I know her potential to have joy in this capacity. We keep pressing on with difficult care because we believe she might have the experience of her own family some day. We have faith God will make bare His arm to her, after we've done all we can.
Watching the news while I workout, a news flash comes on the screen: Oregon feels outraged at the Supreme Courts review of medical marijuana use. There are suffering people out there . . . people with brain tumors! The local news agency interviews a woman with a brain tumor who tells us she will die if she doesn't smoke pot.
We've been offered pot for Betsy, as well as morphine. Drugs to make her sleep off the pain have been given in the night by doctors thinking she'd die the next week. With great compassion, our doctors want to know how much pain she feels before proceeding with treatment to prolong her life. None of these drugs help. Sure, in the heat of the pain she sleeps off life, but our real threat is a dying brain. We must wake her brain up to the beauty of life, not numb her from the pain. When she asks, we give her pain medication, but we don't seek a daily addiction to survive this ordeal.
The problem with pain is moving through it, not around it. How much pain is Betsy in? Betsy's legs charley horse. Her head aches. Some of the greatest pain is emotional, watching friends and family eat and run when she cannot eat, nor run. However, Betsy is also capable of empathy compensatory to her suffering. As we sorrow for her suffering, she seeks to comfort us.
I cry as I administer her medications and treatments, seeing the ashen face and heavy eyes. Her hand reaches out to touch my cheek. Oh, how I love this child!
My husband shares with a stranger how rarely she needs sedation during treatment. She simply asks to hold Dad's hand. He cries as he thinks of the times she's sought to comfort him, when he sought to comfort her. Despite the stranger, her fingers reach up and wipe away the tears.
George McDonald said in Unspoken Sermons: "The Son of God suffered unto the death, not that men might not suffer, but that their sufferings might be like His." 
One winter morning I wake up to the dews of heaven. Somehow, God heard our prayers and our speech therapist feels Betsy can try food. While I work in the kitchen, Betsy asks me for mashed potatoes. This being a texture recently approved for consumption, I whip some up for her. She works patiently, eating them, but when her baby sister, Emma, comes in the room, Betsy happily wags her head in the most inopportune way and potatoes go easily into her lungs. With concern about the damage this does, we increase suction and lung care.
A month after the potato aspiration, another miracle occurs when her doctor recommends surgery to determine if she needs her plastic trach. The Doctor determines Betsy's throat is still weak on the left, but her strong side finds ways to accommodate. Based on this information, he feels we can cap her trach without concern. Once she tolerates the cap for 24 hours, he says, we can remove the trach during an inpatient stay. Thoughts of swimming, eating, and a clear Betsy voice fill my head, and my heart feels like Christmas morning before we get out of bed and even see the gifts.
Just to make sure, I check with our list of physicians. The oncologist, as usual, has no feelings on the subject. He stares in wonder every time he sees her, amazed that she's survived three years, despite the assault on her brain from the tumor.
The lung specialist does not feel we should remove the trach. Her tumor not only puts her at risk for aspirating food, which the trach allows us to suction out of her lungs, but also impairs her ability to exhale. The trach overcomes that obstacle.
Most of our time spent with doctors builds and crushes hopes. We recognize Betsy's experience as a shadow of what we all experience with mortality.
A week later, just within the grasp of complete recovery, Betsy regresses, experiencing seizures and tumor symptoms, again. Admitted to the hospital only days after talk of the trach coming out, we discover tumor re-growth. We anticipate trying anything we can to save her again, willing to fight still, despite these three weary years. Even in the hospital with ample medication, Betsy continues seizing. Her tumor resembles a jelly fish —the bulk removed in surgery, but the tentacles still wrapped microscopically around brain tissue. I see evidence of one of these nasty tendrils when the doctor tells me, "The tumor tickles her temporal lobe," and she feels pain. She no longer controls her saliva. She cannot sit, stand or walk anymore. Betsy's eyes stop working together after another seizure.
Having tried chemo and radiation both twice, we've exhausted traditional methods. Our doctor will not let us return to these treatments. We've been offered several experiments; we don't know which to choose yet.
Inpatient for several days, I sit in a family room with the oncologist as he explains the potential consequences of each choice, and my mind wanders. Flashing before my eyes I see vivid memories of other dark nights.
From the brain surgeon: "I don't expect her to survive the surgery tomorrow . . . she'll probably bleed to death on the operating table. This is a bloody tumor that will bleed profusely as I cut it. We'll give her blood and platelets during surgery, but the body cannot assimilate them quickly enough. Soon the blood seeps from the IV and the brain wound, and I expect her to die."
From the ICU, after she survives the surgery: "She cannot breathe on her own. We suggest to you that we take the trach out and let her die. She will strangle, but it will all be over."
From Hematology/Oncology, upon admission: "She is not worth heroic efforts. She can never recover, besides she will be retarded by our treatment efforts. Just let the cancer kill her."
From Radiation: "Before I consider offering treatment, how is her quality of life? Among other things, this treatment will destroy her hearing."
After first re-growth: "Tumors that have seen treatment do not respond to treatment again."
Today: "We offer these drugs because we need to know how they will affect other children. There is a chance they may help Betsy to buy more time. Assuming she can regain strength and start taking one of these drugs, we will continue until she dies. Of course, you can just stop and let the tumor kill her."
Outside of the hospital Mt. St. Helens erupts. I look the darkness in the face and recognize it for what it is—just a shadow. In the heart of black clouds I find burning fire. I see now the gift of empathy Betsy feels with the God of Abraham, the God of Isaac, the God of Jacob. I recognize her privileged shadow to the Savior of mankind.
He suffered in Gethsemane while His friends slept. They whipped Him, and subjected Him to humility and shame, mocking His worth. They made Him carry His cross through a jeering crowd. When they nailed Him to the cross, He lived, and suffered, pushing up on the nail in His feet for every breath. Finally, every last drop of blood gone from His body, He gave up the ghost.
Betsy suffers, and sweetly overcomes, repeatedly. Her friends do not sleep, but pray vividly for her life. Will she overcome this obstacle? Perhaps Betsy may live another miraculous period with us. In the end she will die. Her dad will die, I will die, you will die. But as in Adam all die, even so in Christ shall all be made alive.
This dark night is nothing but a shadow of great light.
Together our community fasts for Betsy. She's gone without food for six days. We join her.
I'm remembering January, when I thought the tumor was stable and Betsy ate with us, and looked around at the world, and walked and played.
Betsy told me:
"Me and dad build fire, mom.
Fire orange and red and yellow.
Fire hot on my head."
We watched the fire for a few moments and she said; "Fire go up and up and up!" raised her arms high in the air, and knelt up tall.
"I BE FIRE, Mom."
Now, in March, Death may be knocking at our door, but we won't be there. We'll be at the home of our friend the violin teacher, playing for our lesson. We'll be at church singing, "Popcorn popping on the apricot tree," or driving in the car shouting as we see each tree. He'll have to check at school, or the horse stable, or the playground.
We may be wheelchair bound again,
No food by mouth or full belly,
But joy isn't found in meals and ability.
Joy is the sweet smile of a child at play.
Together we fast on Thursday, and determine Betsy is not eligible for any treatment, yet. On Friday we make it home for one sleepless night of high heart rates and fast breathing. A descriptive call of our symptoms to the oncologist gives us direct admission to the cancer floor again Saturday morning.
Upon readmission, our doctor commences morphine, and explains we are no longer eligible for experimental treatment.
"Thirsty," Betsy signs. "Thirsty." She hasn't eaten, now for a week. My mind races through the available options for someone who breathes everything that goes in her mouth. I guess I could moisten her mouth with the same solutions I use to clean her trach, either salt water or vinegar. As a child, I learned that the dying Savior received vinegar when He needed a drink. I cried out that I would have given Him water, how could they do that? Now offered the chance to assuage the thirst of the suffering, I have no kind options. I give my daughter salt water, wipe her mouth out with a moist washcloth, and hope we don't give her pneumonia.
As Saturday continues, the rapid breaths slow to four a minute, then three a minute; then Sunday morning, strong sweet sighs like a newborn. A tender peace distills on the room like evening dew. Outside the blossoms fall heavy from the fruit trees. Family begins to gather. My father and brother and mother-in-law wait in the room. My sister helps with my second child, Emma and makes us food. As I close my eyes I feel the hospital door open and light spill on our face from the hallway. I quickly open my eyes, anticipating a doctor, and I find the door still shut tight. I feel physical light from a spiritual door that continues opening and closing, letting spirit family gather to us too. I tell Betsy about the people waiting to hold her and love her.
We sing, sometimes cheerful, sometimes thoughtful, always near tears. Adam continues his excellent care to the end, suctioning despite limited breath, and persisting in daily procedures that help her. I help him.
Earlier this week she sat in the windowsill as a rare Oregon spring spilled sunlight into our room. "I not Betsy; I Betsy Sunbeam," she told us after her first day in Primary this year.
It is eternity now. I am in the midst of it. It is about me in the sunshine. I am in it.
All Sunday my mom drives to Oregon from Utah, with my two youngest sisters in the car. She arrives, holds Betsy, and Adam speaks about what happens when you die. "Death is your spirit leaving your body," he teaches. "It starts in your feet and moves to your head. Your heart stops beating, and your lungs stop breathing."
"Adam!" I call, "Look at her body!"
With each description, her body acts. As she takes her last slow breath, Adam calls me over and we hold her together. Family is stronger than death; together we approach the tree of life. Early in spring we hope for harvest, needing to feel the love of God. We reach into the fiery white branches—I fill my arms and prepare to share. Instead of fruit I find my arms full, wrapped around a cherub, our love for each other hurting like a flaming, two-edged sword.
We wash her body together, Adam and I, and put on her Easter dress, alone in her room. Our family comes in and one by one tells her body farewell.
In the morning my mom calls and exclaims her dream of Betsy in a field, running and playing, picking flowers with other children of travail. "Mom," I return, "Last night after we returned from the hospital, I knelt to pray. As I thanked God for Betsy, my mind opened and I saw Betsy running and jumping without her walker, free from her pained body, in a beautiful lush field."
 George MacDonald, Unspoken Sermons, First Series (London: Alexander Strahan, 1867), quoted in C.S. Lewis, Problem of Pain (San Francisco: Harper Collins, 2001), front matter.
Sara earned a BA in English from BYU, and can usually be found outside, at the library, or involved with music. She dreams of one day shearing her own sheep, carding the wool, and weaving the same.