SELECTED EXERPTS FROM "Valley of the Shadow-- A Mother's Journal through her Child's Battle with Cancer" (Pleasant Word Edition, August 2006) CHAPTER 1. DISCOVERY AND BIOPSY "Mom, I'm having trouble swallowing." That's how it starts, so innocently. Jessica had mentioned her difficulty to Grampy Hovestadt when he and Grammy had been visiting us from Florida the week before. Her grandfather had wisely advised her, "You need to let your mom know about this." A few days later when Jessica tells me, I, being the wait-and-see kind of mother that I am, watch for her to spike a fever. Must be a cold. Strep throat, maybe? After all, it's February in Utah and just about everyone we know has a cold. Jessica doesn't complain about it much and never does run a temperature so I assume she's fine. I tuck the information away in the back of my mind, but it's pretty cluttered back there. At fourteen, Jessica is the youngest of our three teenage daughters, confident, self-assured, a basketball and softball player, a high school freshman getting all A's, an all-around good kid. Her sunny smile triggers a right-sided dimple. Jessica hasn't quite reached those tumultuous teenage years when I foresee us feeling like adversaries, however temporarily. I'm relishing the time of closeness we have left, dreading the morning this daughter wakes up knowing everything, a vaguely familiar stranger with attitude. After church on Sunday, February 13th, we're hosting a visiting Presbyterian pastor from Idaho for lunch. During the meal Jessica chokes on a piece of pot roast, unable to either swallow or cough it up. We retreat to the bathroom, where I Heimlich her, but that fails to clear the obstruction. After a few frantic minutes Jessica gags up a tiny piece of meat about the size of my littlest fingernail. We resume our seats at the dinner table, more embarrassed than worried at that point. By the next morning though, my husband Alan and I are worried. A call to the local clinic lands us an appointment that very afternoon with our primary care physician, Connie Warren. Dr. Warren gives Jessica a gentle and thorough going-over, but seems mystified by Jessica's swallowing difficulty, saying, "Her thyroid gland isn't enlarged and her throat's not red or inflamed . . . hmmmm . . ." Since I work nights and weekends in the radiology department of a hospital, I ask if a special x-ray called a barium swallow (or esophagram) might be helpful. Our doctor agrees it sounds like a good idea to her, and I ask if the test could be done at the hospital where I work part-time, Pioneer Valley Hospital in West Valley City, about thirty miles away. Dr. Warren has her staff schedule the exam at Pioneer Valley, but the earliest available opening is the following Monday, a week whole away. I also work at home every weekday morning, doing medical transcription for a big transcription company headquartered in Salt Lake City. Since I'm tethered to my computer without the privilege of sick leave, Alan offers to miss part of a workday to bring Jessica to her exam the following Monday. When they arrive at Pioneer Valley Hospital, Jessica is required to drink barium to coat her throat, and then her throat and chest are x-rayed while she swallows more of the chalky liquid. This x-ray study will show any irregularity in either her swallowing process or in the anatomy of her esophagus. Veteran radiologist Dr. Don Nichols, on his first day as a locum tenens (fill-in) radiologist at Pioneer Valley, performs the examination. When he's finished the exam and Jessica and her dad have started for home, Dr. Nichols wanders into the transcriptionists' office. My fellow transcriptionists at Pioneer Valley are Helen and LaRay, two charming and quirky middle-aged sisters (biological, not affiliated with a convent) who are notorious in the West Valley medical community and affectionately referred to as the "Twisted Sisters." When I began working with them three years before, Helen and LaRay adopted me as an Honorary Twisted Sister, even though I fail to measure up to their level of hilarity. Dr. Nichols flops into a chair in the cozy little office we share and laments to the sisters, "I can't believe it. My first study at this hospital and it's gotta be a bad one. I just did a barium swallow on a little fourteen-year-old who's got a mass in her esophagus!" The Twisted Sisters, who knew my Jessica was coming in that morning, look at each other in open-mouthed horror. Helen ventures "Are you talking about Jessica Clark?" and Dr. Nichols, arching one bushy eyebrow, responds, "Yes, why?" Helen hastens to explain that Jessica is the daughter of the night-and-weekend transcriptionist in the department, whom Dr. Nichols hasn't met yet. Radiologists are fully trained physicians who specialize in the interpretation of x-rays. Other physicians sometimes refer to these doctors as "cave dwellers" because radiologists toil through much of their day in gloomy, unlit offices, poring over and making sense of sheet after sheet of blurry, black-and-white images. At that time, the radiologists' dictated reports were transcribed in-house (the Twisteds' and my job) anywhere from a few minutes to a few hours after being dictated. Though the reports were typed and faxed immediately, it often took several days for patients to get x-ray results that trickled through ordinary channels involving the busy physicians who ordered the tests, in this case, our primary care physician, Dr. Warren. Working in the radiology department, however, does have its perks. At two o'clock that afternoon I phone the Twisteds to see if Jessica's report has been dictated and transcribed. Helen, uncharacteristically serious and evasive, wants me to talk with John Arias, one of our regular radiologists and a good friend. Since Dr. Arias is busy doing a procedure, I pester Helen until she breaks down and admits that the radiologists have detected something unusual on Jessica's exam. With a strange tremor in her voice, Helen says, "Linda, Dr. Nichols and Dr. Arias both want Jessica to come in for a CT scan as soon as possible." Because our health insurance demands it, I try jumping through the obligatory hoops to obtain a physician's referral for the CT scan. I call the clinic and am told that Dr. Warren has left for the day. At that point, I make the decision that Jessica will have her CT scan with or without a referral or prior approval, even if it means our insurance could refuse to pay for it. I call my friend Judy in radiology scheduling and book Jessica's CT for the next available opening, three days later. When Jessica comes home from school that afternoon, I have to let her know that the barium swallow showed "something" in her esophagus. I explain that the doctors with whom I work want her to have a CT scan, and Jessica's fine with that -- as long as no needles are involved. "Plus," she reminds me, "didn't I break out in hives when I had a CT scan last year before my eye surgery?" How could I have forgotten? That allergic reaction could be fatal! I phone Pioneer Valley Hospital again and speak with Dr. Arias to give him a heads up about Jessica's contrast allergy and her fear of needles. Dr. Arias suggests that Jessica could have an MRI scan instead. Admittedly, the MRI will not show as much detail as the CT, but it can be done without intravenous contrast. I call Judy to make the scheduling switch. Three days later Alan and I bring Jessica to Pioneer Valley Hospital's MRI Center, a separate small building on the hospital grounds. The MRI technologist, Kathy, kindly offers to let me stay in with our daughter, while Alan camps out in the waiting room with the Salt Lake Tribune. After removing any jewelry that could get sucked into the magnet, I'm seated in a chair where I can provide a comforting touch to Jessica's purple-stockinged feet protruding from the big, round magnet chamber. Kathy hands me earplugs and Jessica a set of radio headphones tuned to her favorite rock station to drown out the noises produced by the magnet, and the MRI is begun. About twenty minutes into the scan, I'm startled to glance up and see Dr. Arias bent over a computer screen in the glass-enclosed control room, studying the magnetic resonance images as they appear. We wave to each other warily. Why is Dr. Arias over here watching this scan? Ordinarily, in those days before scans were digitized, at the completion of each MRI, the techs would hand-carry hardcopy films to the radiologists in their hospital offices for interpretation. I've never known Dr. Arias or any of our radiologists to leave the hospital and walk over to observe an MRI while it's being performed before. Isn't he sweet? He doesn't need to give us royal treatment. Wait a minute . . . he's not smiling. When the scan is finished, Dr. Arias comes into the MRI room and explains that he wants Jessica to have an immediate second MRI, contrast-enhanced this time. He assures me that the dye used for MRI is not the kind to which Jessica might be allergic. So, as much as she hates the idea, Jessica needs an intravenous line put in after all. She protests mildly about the needle stick -- more upset by the betrayal of our promise that there would be no needles than by the pain of it -- and is slipped back into the magnet. After the second MRI scan is completed, and while Jessica changes from the hospital gown into her own clothes, a visibly shaken Dr. Arias sits down with Alan and me in the otherwise empty waiting room. "I don't like what I'm seeing," he says solemnly. "The second scan verifies that there's some kind of a mass within Jessica's esophagus." Before Alan and I have time to digest what that means, Dr. Arias goes on, "I want her to have a CT scan, too . . . immediately . . . to better visualize the mass." He's already phoned ahead and the CT techs are set up and waiting for us over in the main hospital building. Unfortunately, Jessica's intravenous line has already been removed, so when we walk over to the hospital, she requires another needle stick. Jessica submits to the second stick, but this time she cries. This is way more than she bargained for. To head off a potentially lethal allergic reaction, the CT techs load Jessica up with Solu-Medrol (a steroid) and Benadryl. Lying supine on the CT table, she promptly conks out from the Benadryl. Within minutes after the CT scan is completed, Dr. Arias invites Alan and me and a drowsy Jessica into his office to look at the films. Now we ARE getting royal treatment. Regular patients never get near the radiologist's inner sanctum. Hundreds of tiny x-ray images on large sheets are clipped to the fluorescent light panels that ring the perimeter of the darkened reading room right next door to the Twisteds' and my own office. Dr. Arias introduces me to Dr. Nichols, a big teddy bear of a guy I'm just meeting for the first time, but with whom I'm supposed to be working in a few hours. Together they explain the CT and MRI films to us, pointing to some bulgy gray shadows on a few of the images and telling us it's a large tumor, about two inches long and an inch wide, partially blocking Jessica's esophagus. Dr. Arias suggests that we get Jessica to a surgeon immediately, probably one at Primary Children's Medical Center in Salt Lake. Alan nods his head in agreement, and my head bobs agreeably, too, even though I seem anesthetized from the neck up. My brain is dead! Dr. Arias looks sick about this, and I'd like to think I look appropriately distressed, too, but the truth of the matter is, I'm not. I'm too numb. What he's telling us is not sinking in. I cannot get my brain around what he's saying! The Twisted Sisters cannot help but overhear everything being said in the room next door. Sensitive to the shock we must be in, Helen and LaRay insist that I NOT come in to work my shift at the hospital that evening, offering to stay late and get the transcription caught up. I try to protest, adamant in my belief that I can and will work that night, but the Twisteds prevail. With great reluctance I accept what will turn out to be the first of their many acts of kindness. During the surreal thirty-minute drive home from Pioneer Valley Hospital that afternoon, Alan, Jessica, and I ride silently, trying to absorb (unsuccessfully) what we've just been told. The pale February sun is just dropping behind the Stansbury Mountains when we stop at our local clinic to initiate the surgical referral process. I dash into the clinic while Alan and Jessica wait in the car. The clinic staff informs me that Dr. Warren is busy with patients and, predictably, they refuse to let me talk to her without an appointment. I leave a message for her that Jessica has a tumor in her esophagus and, leaving our name and phone number, ask her to call us when she's done seeing patients. Denial is a wonderful thing. It allows that evening to be almost like any other. Arriving at home, Jessica (a freshman) and her sister Melissa (a junior) work on their homework. Zombie-like, we make and eat supper, watch some TV, head to bed after the ten o'clock news, and all sleep like babies. The next morning, Friday, after Jessica and Melissa leave for school, my friend Dr. Arias phones me at home. He wants to know if we got the surgical referral on our way home the previous day. I have to admit that Dr. Warren did not call the night before and, when I phoned the clinic that morning, I was told Dr. Warren would be unavailable until the following Tuesday. Dr. Arias asks if he could speak with a surgeon he knows at Primary Children's on Jessica's behalf. "Okay," I say. "Of course." Can this really not wait until Tuesday? Within an hour our phone rings again. This time it's a nurse from Dr. Richard Black's office at Primary Children's Medical Center, asking how soon we can get Jessica there. "Dr. Black's in surgery all afternoon," the nurse says, "but he'd like to see Jessica between cases." I explain that we only live about an hour away, but by the time I gather up Jessica from school, her dad from work, and her x-rays from Pioneer Valley Hospital, it could take us two hours to get there. That's fine with them. Also, we aren't exactly sure how to find Primary Children's. We know only that it's up on the bench (foothills) of the Wasatch Mountains on the eastern side of Salt Lake City, somewhere on the grounds of the University of Utah. Fortunately for us, the west-facing slope of the Wasatch Mountains is branded with a huge white "U," advertising the location of the University for the whole Salt Lake Valley to see. After springing Jessica from school, we pick up Alan at his office. He's gotten directions to Primary Children's from some coworkers, but we basically aim the car uphill. Eventually we stumble onto the breadcrumb trail of blue "H" signs which guide us to the massive multi-hospital complex perched on the East Bench encompassing Primary Children's, University Hospital, and the Huntsman Cancer Institute. Primary Children's Medical Center is a renowned pediatric hospital affiliated with the University of Utah School of Medicine and Intermountain Health Care. Kids who require specialized care or a high level of trauma expertise are referred there from five states --Utah, Nevada, Idaho, Wyoming, and Montana. We moved to Utah three years previously from Maine because of Alan's career and never gave Primary Children's much thought. We never expected to need the services of a top-notch hospital like Primary Children's, but suddenly we have reason to be thankful it's here and we're here. Eventually the fact will sink in that, were we still living in Maine, we'd be driving four hours to Boston to get Jessica this caliber of care -- assuming she could get referred to it. Much, much later I will come to wonder, "What if I hadn't been working in a radiology department, giving me the knowledge and the chutzpah to ask about a barium swallow?" and "How about the special treatment and rapid surgical referral my friend Dr. Arias gave her? He stepped in when I was too numb to function." Some of the answers to my habitual question "Why did God ever bring us to Utah?" will finally start to come into focus. I will begin to understand that God was several years ahead of us, laying the complicated groundwork for these difficult days. But that realization will come much later . . . CHAPTER 2. JESSICA'S "GRAND OPENING" . . . After two hours Dr. Black, still masked, appears in the doorway of the crowded waiting room. He beckons us to the hallway where we can speak privately. He must be all done and has come to tell us how well everything has gone . . . but his eyes look sad. Dr. Black slips the surgical mask down, and the rest of his face matches the expression in his eyes. "It's bad," he tells us, shaking his head. "We'll need to go the whole nine yards with this one. The tumor not only completely permeates her esophageal wall, but also has a malignant look to it." He tells us a slice of the tumor has already been sent to pathology and, despite what the previous needle biopsy indicated, the tumor appears to be malignant after all. "I'm going to have to remove Jessica's esophagus and go through with the self-transplant," he says. "It'll probably take another eight to ten hours." Dr. Black promises he'll have his scrub nurse phone us with updates throughout the day. "Jessica's doing great," he adds over his shoulder as he strides back toward the operating rooms. Time shifts into low gear. Other families arrive and depart as their children's surgeries are started and finished in other operating rooms. Eventually we ask Pastor Wallace to give my mom and dad a ride home. My parents are not anxious to leave the hospital, but older sister Melissa will soon be arriving home from school. She'll want to know what's happening and we don't want her to be greeted by an empty house. We promise my mom and dad we'll call as soon as we know anything. Alan and I sit and pace and pray and stare unseeingly at the same paragraphs in our books throughout the afternoon and evening. We begin receiving telephoned updates from the scrub nurse informing us that Jessica's doing fine. After skipping lunch, around six o'clock or so, we take turns dashing to the cafeteria to choke down minimal sustenance past the lumps in our own throats. At nine-thirty that evening, Alan and I are huddled alone in the dimly lit waiting room, when suddenly the phone rings. It's the scrub nurse calling to let us know that the surgery is over and Jessica's being wheeled to the pediatric intensive care unit. The operation has lasted eleven hours . . . CHAPTER 3. IT HAS A NAME . . . Later while Jessica dozes, a new doctor (William Slayton, sandy-haired and bespectacled, an oncologist)arrives at her cubicle and introduces himself to us. He quietly announces to Alan and me that the final pathology report is in. The news is not good. "It's definitely cancer," he says softly, "either squamous cell or adenocarcinoma. The pathologists are divided on it, deciding to label it 'squamous cell with adenomatous involvement.'" Dr. Slayton explains that the reason the biopsy results took SO long was that the lab checked and double-checked their results. Although this kind of cancer is becoming increasingly common in older people, it is virtually unheard of in an otherwise healthy fourteen-year-old. Dr. Slayton probes deeply into Jessica's history with us, trying to uncover any of the usual risk factors for esophageal cancer, such as obesity, chronic gastroesophageal reflux, tobacco or alcohol use. Jessica has NO risk factors or exposure. There's a family history of breast, prostate, and lung cancer in her paternal grandparents, but nothing like this. In retrospect, the only other symptom we can pinpoint for Dr. Slayton, in addition to Jessica's short-term swallowing difficulty, is some recent fatigue. We realize that since the high school basketball season ended a few weeks earlier, Jessica has been going to bed earlier and occasionally napping after school. For the last four months, though, she's been participating in strenuous two-to-three-hour practice sessions every non-game day. She's played hard in two basketball games a week, sometimes arriving home from an away game as late as one a.m. on a school night. In our own minds, we've written off this fatigue, feeling Jessica has earned the right to flag a little. Is this a symptom we didn't pick up on? Dr. Slayton remains nonjudgmental. He goes on to explain that the pathologists have determined that this cancer did not start on the surface of her esophagus, where older people develop it from chronically irritating their throats. Jessica's tumor started deep inside the tissues of her esophagus "no one knows why." Dr. Slayton gives Jessica a thorough examination, including her first ever breast exam. Jessica, though not fully awake, is alert enough to look highly indignant at his probing. I'm still fuzzy about what all this means, but now we've been visited by an oncologist -- a cancer specialist. My mind is struggling to stay afloat in a rising tide of panic. It's a good thing God is in control, because I'm definitely not. Help me, Lord! I CAN'T THINK STRAIGHT! Once we've been given a name to attach to the cancer, I phone Dr. Arias, my radiologist friend back at Pioneer Valley Hospital. He is now my hero for expediting the placement of Jessica into Dr. Black's capable hands. Dr. Arias gently tells me, "This type of cancer, squamous cell, is a bad player. Jessica's going to have a rocky road ahead. You all are." . . . CHAPTER 4. BOUNCE I find myself on a gradual, downward spiral into despair. It's becoming more and more apparent to me that we could really LOSE our beautiful Jessica over this and I think, "I DO NOT WANT TO LOSE THIS CHILD!" I reflect on Jessica's spiritual maturity at a young age, and ask God, "Has she already accomplished all You want her to accomplish in this life? Are You planning to give her an early ticket Home? What is Your purpose in this illness? If all things work together for the good of those who love the Lord, where does cancer fit in?" And eventually I sink to the point of asking "Why HER, Lord? Why US?" though I feel guilty doing it . . . the pot rebuking the potter. As hard as I try not to, I feel like crying all of the time. I smile in front of Jessica, but whenever I'm out of her sight, I cry and plead with God to let us keep her. People who know me keep telling me how well I'm handling all of this, but that's only because they don't see me when I'm alone with God. I waver between trying to make deals with God . . . to trying to be at peace with the knowledge that He is in control . . . to flat out begging Him for a miracle. I know God has promised He will not give us more than we can bear, but I'm sorry, I feel like I'm approaching my limit. Our oldest daughter Janelle, whom we adopted as an infant, had a troubled and difficult adolescence, and I struggle with angry feelings that our family "gave at the office already." My head knows that because of our sin we all deserve much worse than we get in this life, but my heart is in the process of breaking, and right now my heart is overruling my head. I cannot dig myself out of this pit of despair, and even if I could, I'm not sure I'm ready to climb out yet. I'm a mess! I can't even look at myself in a mirror. If I've been sobbing in the hospital third floor ladies' room, and finally pull myself together enough to come out of the stall, I can't bring myself to look at the poor, pathetic woman reflected in the mirror (me) with those puffy, bloodshot eyes and blotchy face WHO MAY BE LOSING HER CHILD! I guess it's true that misery loves company, because I'm okay unless I catch her eye. Then we both, me and myself, start sobbing all over again. There are plenty of private places in and around Primary Children's to get away for a few tears and to wrestle with the dawning realization that this nightmare is real. One of my favorite spots is the top level of the parking garage. Alan joins me there and we hug and cry and pray together. The views of Salt Lake City spread out below and the stars arrayed above are awesome. Alan and I are both hurting and we have a lot of talking to do, with God and with each other. For me, though, crying and praying in the car works the best, despite the safety issues associated with blurred vision. I can really let loose and wail in the car, and if other drivers happen to notice, maybe they'll think I'm listening to country music on the radio? Late one afternoon as I'm driving back to Salt Lake City to spend the night with Jessica in the hospital, the sky over the whole Wasatch Front is black and thickly overcast, which suits my mood perfectly. Headed eastbound on the I-80 freeway, I crest a slight rise that affords a panoramic view of downtown Salt Lake City spread out in the wide valley before me. A few lights are starting to blink on, and in the day's waning light, I can easily pick out the white hospital complex perched on the east bench at the far side of the city, with the majestic, snow-capped Wasatch Mountains looming up behind it. Primary Children's is perfectly positioned straight ahead of me on the highway, yet nearly ten miles and the width of the city away. I'm totally focused on the hospital, unabashedly begging God to spare the life of my child sheltered within its walls. Suddenly the clouds behind me part just enough to let a stray shaft of sunlight splash across the hillside, fixing the hospital complex in a spotlight of warm, golden light. My breath catches in my throat and I have an instantaneous flash of absolute assurance that God will take good care of Jessica . . . no matter what. It's as if God is SMILING on her! I can feel God's peace and presence soothing my battered soul and putting my heart at rest. I stare, transfixed, at the sight before me for perhaps five minutes before the clouds close in. As abruptly as it appeared, the setting sun is cut off. Warmed by His nearness, I'm reminded of God's promise in Scripture that "no eye has seen, no ear has heard, no mind has conceived what God has prepared for those who love Him." I realize all over again that God is real, that He's here with us, that He cares about us, that He's in control of all things, and . . . that He has prepared a mansion for my Jessica. In terms of faith, it doesn't get any more real than this. Living the Christian life should and does allow us to be better prepared than anyone else to die. As much as I might not want to lose my Jessica, and as much as she might not want to go, I can suddenly take huge comfort in knowing that her soul is secure in the Lord. Despite my heart's desire to keep our little girl right here with us, I am reminded that Jessica belongs to Him. She's only on loan to us. If God takes our/His beautiful little girl Home, He has already tremendously blessed us by allowing us to have this joyful child in our lives. We might be called upon to wait patiently for a reunion with Jessica in Heaven one day, but we can DO that, if we have to. I suddenly know that God might not allow her to be spared, but He will provide whatever faith and strength our family will need to get through losing her. I'm suddenly able to recognize God's fingerprints all over Jessica's illness and subsequent treatment. God has been calling the shots all along. As I surrender my fears to Him, God begins the process of healing my broken heart. I experience a sense of peace and joy that I could never have imagined a few days before. Hurtling down the freeway at seventy-five miles an hour, I cannot fall to my knees physically, but mentally, that's the position I assume. Jesus, you feel as near to me right now as You did when I invited You into my sinful heart over thirty years ago as a college student. Thank You, Lord, for blessing me with Your comfort and assurance. Hold me close and keep me strong. From that very personal moment with Him I am energized. God is leading me out of the "grieving" and into the "action" mode. The time has come to cease being a helpless, whimpering spectator. IF Jessica IS dying, I cannot continue to stand like a deer in headlights. My little girl needs me to be strong for her, not mourning her loss ahead of time. My husband and my other daughters need me to be strong for them, too. My crying jags, though not completely over because our trials are not done, become less and less frequent and disabling. There will be other difficult times ahead--times when I will again feel alone and inadequate and even angry--but I will not again wallow in such depths of despair. God, true to His word, will be there to pick me up, draw me close, and set me on my feet. The strength He gives Jessica will help carry us all. CHAPTER 5. THE REST OF THE FAMILY CHAPTER 6. HOSPITAL ROUTINE CHAPTER 7. HOME AGAIN, HOME AGAIN CHAPTER 8. CHEMO AND RADIATION CHAPTER 9. SUMMERTIME AND THE LIVING IS! CHAPTER 10. "SOMETHING" IN THE TRACHEA CHAPTER 11. ANOTHER BIOPSY CHAPTER 12. BRACING FOR ANOTHER SURGERY CHAPTER 13. WELCOME TO THE ZIPPER CLUB CHAPTER 14. CHRISTMAS CHAPTER 15. NEAR DISASTER CHAPTER 16. FOLLOW-UP CHAPTER 17. JOG FOR JESSICA CHAPTER 18. LEARNING TO LIVE WITH CHANGES CHAPTER 19. FAST FORWARD I've included this chapter in its entirety below, since it was added in the second edition (printed in September 2004) and revised in the third edition (published by Pleasant Word Publishers, a division of Winepress Publishing, in August 2006). I just thought those who purchased the first edition might appreciate the update without having to go out and buy another book! Jessica did make it to her Junior Prom in April of 2002. She wore a long white dress, effectively concealing the bandaged and bloody knees she acquired sliding into home base during a softball game the week before. In June 2003 Jessica graduated from Grantsville High with a GPA of 3.9, placing twelfth in her class. She was an exemplary student, racking up accolade after accolade for her scholastic and extra-curricular achievements. She was a member of the National Honor Society, an Academic Olympian, Sterling Scholar in Science (taking second place in the state competition), and chapter president of her school's Future Business Leaders of America. She worked two summers for the Utah Division of Wildlife Resources and remained a part-time employee through her senior school year. Though she never got to play high school basketball again, she did coach a fifth and sixth grade girls' intramural basketball team, refereed two basketball games a week, and played junior varsity softball her junior year. She taught Sunday school with me at Hidden Valley Presbyterian Church. At her high school graduation, Jessica was presented with a "Class Hero" award (a watch) from her principal, though she hated being the center of attention for having survived cancer. She competed for and received several scholarships, including a full-tuition Dean's scholarship, and local and state Wild Turkey Federation scholarships. She was admitted with "honors at entrance" to Utah State University and was selected as a prestigious Quinney Scholar by the College of Natural Resources. Oh, and remember those girls whose potential suicides were thwarted by Jessica in the seventh grade? One was class president of their senior class and another is a gifted musician who earned a full music scholarship to college. While it appeared that the cancer was whipped, Jessica's tracheal stent became problematic during her senior year of high school. Scar tissue began growing so rampantly within her stent that Jessica required nine bronchoscopic surgeries (in the operating room under general anesthesia) in a little over a year's time to scrape out the scar tissue and open her airway. Dr. Elstad had tried coating the inner surface of her stent with a scar-inhibiting chemo agent several times and had even tried radiation therapy inside the stent (brachytherapy) -- all desperate attempts to slow or stop the scar proliferation. Despite Dr. Elstad's best efforts, Jessica was losing the battle against the tracheal scarring. She suffered frequent bouts of pneumonia and bronchitis and required cleanout surgeries at shorter and shorter time intervals, down to six weeks toward the end of her senior year. She could breathe well for only a week or two following a cleanout and then her respirations became increasingly labored until she reached the point where one flight of stairs was more than she could handle. At times the diameter of Jessica's airway was narrowed to four millimeters, the width of a telephone cord. We lived in constant fear that she might not get in with Dr. Elstad for cleanout surgery before her trachea clogged up entirely with scar tissue. A week after Jessica's high school graduation, Dr. Elstad procured a new kind of tracheal stent (still smoking from the FDA's branding of approval) and two days later positioned a couple of them inside Jessica's existing tracheal stent. The new stents worked better than any of us could have hoped -- Jessica went more than two years with NO scar formation within her tracheal stents! After a successful freshman year at Utah State University as a wildlife biology major, Jessica competed for and was granted a prestigious Tehabi summer internship with the Bureau of Land Management. She spent the summer of 2004 monitoring elk and sage grouse around Ely, Nevada. After her sophomore year, in the summer of 2005, she landed a summer job as a wildlife intern at Deseret Land and Livestock, conducting research on sage grouse and pronghorn antelope populations. Her sweetheart at the time, Ben, a mechanical engineering student at Utah State, had taken a job in Alaska for the summer, so most of her weekends were spent at home with us. She thought her biggest problem that summer would be missing Ben. During the summer of 2005, Jessica began having difficulty swallowing and keeping food down. In early July, she underwent a routine scoping of her esophagus (esophagogastroscopy or EGD) by the head of the gastroenterology department at University Hospital, Dr. John Fang. When Dr. Fang came out of the operating room after the procedure, he was saddened to have to tell us that the jejunal interposition, which had served Jessica well for the past five years, had developed a huge hole and needed to be either repaired or replaced immediately. Also it appeared that the hole in her trachea, for which the original stent had been placed emergently, had never healed along the outside of the stent. Dr. Fang reported that he was rather surprised to be able to look from her neoesophagus directly at the outside of her tracheal stent, and what was worse, food particles were stuck to the wires of the stent, meaning food had been entering Jessica's lungs for who-knows-how-long. A followup swallowing test indicated that ingested fluids were able to pass freely from Jessica's mouth into her lungs and into her chest cavity. The docs kept her in the hospital for three days, partly to try and figure out why she wasn't deathly ILL from this condition, and partly to plan what they might do to help her. A nasogastric feeding tube was inserted, and Jessica was sent home with instructions to eat NOTHING by mouth. We brought her home, got hooked up with a home nursing service to provide a pump and cans of Boost-like stuff, and waited for a surgical date to be set up. On Tuesday, August 2, 2005, Jessica underwent open-chest surgery. Cardiothoracic surgeon Dr. Karwande was again called in on her case, as well as a new ENT surgeon to us, Dr. Pramod Sharma. Dr. Elstad, though not a participant in the surgery, invited himself into the operating room to watch out for our girl and to bring us frequent updates about what was going on. Dr. Karwande, when he got inside Jessica's chest, found that the interposed jejunum was unsalvageable (probably from radiation therapy damage) and it was necessary to remove Jessica's jejunal interposition altogether and pull her stomach up through her diaphragm, where it would reside in her chest and now act as her esophagus, a procedure called "gastric pull-up." Dr. Sharma, who was prepared to do a reconstructive procedure using tissues from Jessica's arm (similar to the procedure that had been pioneered in Australia three years before, called "free-flap reconstruction"), was instead able to place a patch over the hole in Jessica's mid-trachea. Nine hours after the operation began, Jessica was transferred to the surgical intensive care unit (SICU). She had three incisions, all held together with metal staples. One ran across the front of her neck; a second ran from her neck to her navel; a third ran from under her right breast, around her back, and up to the top of her right shoulder blade. She had two surgical drains in her chest and a chest tube attached to suction, and a urinary catheter was in place. She had a total of six intravenous lines running. Jessica was intubated and on a ventilator, heavily sedated. In talking with Dr. Karwande the next morning, the plan was to wean her from the ventilator and extubate her (remove the endotracheal tube in her mouth) within a week. Over the weekend, the settings on Jessica's ventilator were progressively lowered until she was breathing on her own through the endotracheal tube. Her pain and sedation medications were reduced and then discontinued altogether. It was tough on her, just six days post-op, but Jessica was motivated by the desire to get the endotracheal tube out, move to a bed on the floor, and then go home. Classes at Utah State would be starting in a couple of weeks and she was determined to be there to start her junior year. On Monday, August 8, Jessica was de-vented and extubated, with the SICU docs and respiratory therapists crowding around her bed. Things went well for about thirty minutes and the staff dispersed, but suddenly Jessica began having difficulty breathing. With each gasp for air, the chest tube in the right side of her chest (which was draining fluid) began to cause her excruciating pain. We watched in horror as she arched her back in pain and mouthed the words, "Kill me! KILL ME!" The staff moved back in quickly, asked us to leave, and an emergent re-intubation saved Jessica's life. She was placed back on the ventilator and her sedation and pain meds were cranked up again. A CT scan done later that evening showed Jessica's vocal cords and upper trachea had swollen tight against the new, smaller endotracheal tube. The next day, Dr. Elstad took Jessica to the operating room to perform bronchoscopy to try to determine what was going on with her upper airway that would have caused the swelling. What he found was far worse than he could have imagined. As Dr. Elstad moved the fiberoptic probe down past the stents (which were fine) to the carina, where the trachea divides into the right and left mainstem bronchi, he discovered a large hole or fistula in the back of the trachea that had not been there just a few weeks before. This hole was allowing air to leak into her chest cavity, just as the first hole had done nearly five years before, precipitating the placement of her first tracheal stent. Jessica's left lung had collapsed, and Dr. Elstad re-inflated it. As Alan and I sat in the OR waiting room with our current pastor (Pastor Mashburn), Dr. Elstad gently told us that options for repairing a hole in the carina were limited and generally not very successful. He explained that there was some possibility that the hole might heal on its own, but if it did not heal -- and nothing in Jessica's trachea had ever healed on its own before -- the hole would be fatal. Dr. Elstad discussed with us the possibilities of stenting, though he stated that her chances of dying during the procedure would be much greater than his chances of getting it successfully stented. He offered to contact another eminent stent surgeon in San Diego for his input. Alternatively, he theorized, Dr. Karwande and Dr. Sharma might be able to attempt surgical repair, which would require another open-chest operation. Alan and I were devastated by this development, trying desperately but unsuccessfully to keep our emotions in check, and Dr. Elstad looked as heartbroken and forlorn as we felt. When we were allowed to return to Jessica's bedside in SICU, we found her in terrible shape. Her hands were like ice and she was struggling for each breath. Her heart rate was between 160 and 170, much too fast. Dr. Richard Barton, the director of SICU, took us aside and said it looked like she might have developed another pneumothorax. A few minutes later, a chest x-ray confirmed that her right lung had collapsed between the OR and SICU. In those few terrifying minutes, Alan and I held Jessica's hand and tried to comfort her. Jessica mouthed, "I'm so scared" around her endotracheal tube, and I murmured, "I'm scared, too." Then through my tears, I blubbered, "You know, don't you, that no matter what happens to you tonight, you're going to be all right?" Jessica nodded her head vigorously. Then I said, "Hey, Kiddo, this is not how it's supposed to happen. I'm supposed to get to Heaven first and save a spot for you!" Then my dear little girl did the most wondrous thing. She smiled up at me through her tears and shrugged her shoulders, as if to say, "Sorry, Mom, looks like it's not going to happen that way." In that moment I had a glimpse of her eternity. A few minutes later we were shooed out of the unit so Dr. Barton could attempt to insert a second chest tube to relieve the pneumothorax. If the chest tube didn't work, Dr. Karwande was on his way in to do open chest surgery on her. Alan and I found a relatively quiet spot down the hallway from the entrance to SICU and Alan clung to me as I cried. Pastor Mashburn found us there a while later and prayed with us. The chest tube worked, Jessica's lung re-inflated, and her condition stabilized. A few days later, Dr. Elstad and Dr. Sharma took Jessica back to the OR and performed a temporary tracheostomy. This put Jessica's endotracheal tube through the front of her neck, rather than through her mouth, which was a little less annoying to her, but still horrible. Jessica spent a total of four weeks on a ventilator in SICU and another two weeks on the third floor, before being discharged to home. While she was in SICU, her then-boyfriend Ben, the best medicine of all, flew down from Alaska to be by her side for two weeks. We brought Jessica home in early September 2005, weak, shaky, but alive. She sat out the fall semester at Utah State, but returned in January for the second semester. Though she has developed a condition called "dumping syndrome" from the gastric pull-up (where the food she eats gets "dumped" directly into her small intestine, causing severe metabolic changes, including plummeting blood pressure, elevated heart rate, and faintness after nearly every meal), Jessica is gaining strength and learning to eat frequent, tiny meals. At her lowest she weighed ninety-four pounds, but is closing in on one hundred now. Jessica has been re-hospitalized five times since November with respiratory distress. That frightening hole in her lower trachea (carina) has healed -- YEAH! -- but in fact, it healed too well. Scar tissue began invading her trachea at that point, and in October and December Dr. Elstad and his pulmonary fellow Dr. Chakravarthy took Jessica to the OR to scrape out the scar. It continues to grow back, so Jessica is probably facing another regimen of regular tracheal scar clean-outs. She's had over thirty bronchoscopies so far in her life, and faces the probability of many more. In November, the upper of Jessica's two "new" stents was discovered to have slipped south, nesting within the lower stent. The newly exposed tissue in her upper trachea went berserk forming scar, and in December Dr. Elstad was able to scrape out the scar and remove and replace this stent. Consequently, that area seems to be in pretty good shape. A more puzzling and problematic issue for Jessica currently is that her vocal cords have become hyper-reactive, swelling up and blocking her upper airway with little or no provocation. Steriods and antibiotics seem to help, and Jessica has Dr. Elstad, her "Airway Guardian," on speed-dial. --- It is by God's grace that we still have our Jessica. When I started this account, I had no idea how it would end, but I fervently prayed that it would end with the heroine living happily ever after. According to the medical literature, with esophageal cancer, a patient is considered to be "in remission" after being cancer-free for two years and "cured" after five. Since oncologists reset the remission countdown clock when a new tumor is removed, Jessica's cancer went into remission in December 2002. She was officially classified as "cured" on December 4, 2005 and is now on a schedule of yearly oncology checkups with Dr. Samlowski. Though I wanted to throw her a giant party to celebrate the five-year point, Jessica, in typical fashion, nixed the idea. The disintegration of her jejunal interposition in 2005, probably caused by the radiation therapy she received in her chest five years before, was a huge setback to Jessica and as devastating to all of us as her initial cancer diagnosis. Without the radiation therapy, however, the cancer might have taken her. We have no regrets about the medical decisions that were made to save her life. We're just grateful to God that we still have this wonderful young woman. Jessica, now twenty, has returned to classes at Utah State. In November Jessica met a wonderful young man, Scott Tayon, who immediately captured her heart, as she did his. They have begun planing an August 2006 wedding! We're all looking forward to a bright and healthy future for both of them. --- Sister Melissa, now twenty-three, graduated from high school and is married. She and her then-boyfriend AJ ran off to Las Vegas about four years ago and returned as husband and wife. They bought a home in Grantsville, Utah, and both have good jobs. How typical of Melissa to spare us the expense and trouble of a big wedding?! --- Sister Janelle, twenty-five, and her young son Quinn came back from New England to live with us about two years ago. After a failed romance, she gave birth to a second child, a darling little girl she named Kiara Lynn. Janelle has grown into a strong young woman with a beautiful spirit. She's a good mom. We're joyfully grandparenting a rambunctious three-year-old and a newborn. Alan has already taken Quinn on his first camping and fishing trips. --- Jessica has handled this adversity in her young life with remarkable poise and strength, yet she granted me little insight into her thoughts and feelings during that time. Like her dad, she doesn't talk about her deepest feelings easily. I've had to resort to taking clues about what she was thinking from her behaviors. For example, when she was the sickest from the chemo and radiation five years ago, she plunged into a "heavenly" phase. She decorated her room in blue-sky-and-white-cloud linens and accessories and started collecting angels. Was she preparing for her new home? I don't know. She won't talk about it. Then one day Jessica put all of her cloud bedding away, perhaps indicating she was ready to move on, since the life-threatening phase of her cancer seemed to be behind her. I hope someday she'll write her own book about her cancer battle . . . because I want to read it. We don't know what God has in store for Jessica in the future. We do know that because of Jessica's illness, many people have told us that their faith has been strengthened. We've been blessed to see God at work in our lives, in Jessica's life, and in the many, many lives that she touches. Rallying around Jessica has brought out the best in hundreds of people . . . our neighbors, coworkers, churches, friends, family, teachers, physicians, and complete strangers. And Jessica, through this trial, has developed a strength and depth far beyond that of others her age, though she is not one to openly discuss it. Jessica's positive attitude is a testament to all who meet her of the Lord's powerful work in her life and of the peace that comes from knowing Him. We started out so naive, so innocent, so complacent. We took life for granted, not realizing that every day is a precious gift from a God who loves us and want's what is best for His people. Grabbing hold of the Savior's outstretched hand and walking with Him "through the valley of the shadow of death" leaves us forever changed for the better. Thank you, Lord God, for all You have done and will do in Jessica's life and in mine. AFTERWORD PHOTO GALLERY (You may click on the "Photo Gallery" button to the left of this web page to view some of the photos from the book.)