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Praying for Emily
The Faith, Science, and Miracles that Saved Our Daughter
By Kari Whitehead
By Emily Whitehead
With Danelle Morton
Foreword by Ken Burns
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I meet a lot of everyday heroes in my work: the intrepid explorers who followed Meriwether Lewis and William Clark into the uncharted territories of the Pacific Northwest. The soldiers who lived through the traumatic blood, sweat, and tears of World War II and Vietnam. The athletes who persevered in the face of insidious assaults on their character—and their person—to integrate professional sports.
But none of them is any more heroic than Emily Whitehead, who endured a degree of pain that most of us can barely imagine to prove that a risky, experimental cancer treatment could save her life and the lives of thousands of other children.
She, too, is a pioneer. She, too, is a warrior. She, too, has persevered. As have her parents. As did the thousands of strangers who hoped and prayed for her, united by the simple hashtag #WeBelieve.
We know about the trials and tribulations of scientists and doctors who labor for decades to make revolutionary discoveries, but rarely do we hear about their patients, who are truly on the front lines.
At a time when it seems we can’t agree on anything in this culture, we can agree that Emily Whitehead is a hero.
When we first met her, Emily was a five-year-old who spent much of her life in hospitals, surrounded by technology, or at home, trying to live a normal life, as her body began to betray her.
We watched (and filmed) as she hovered near death while doctors feverishly tried to save her. We heaved our own sighs of relief when she went into remission after becoming the first child whose immune cells were successfully trained to fight cancer.
To be honest, we had feared her story would have a far different ending.
Today Emily is a healthy fifteen-year-old who gets straight As, loves art, and, as you are about to see, is able to write about her parents as wisely as they write about her.
Like many teenagers, Emily cares deeply about the challenges her generation faces, from the traumatic effects of bullying to global warming, and she travels the country telling her own story because she believes passionately in doing what she can to raise money for research that will treat other cancers, and save other children (although she also does admit it’s “kind of cool” to have your name on T-shirts).
While her parents say she likes being different, even “a little weird because it keeps things interesting,” it’s also clear (and I hope she doesn’t mind my saying it) that the most wonderful thing about her is, simply, that she’s a normal teenager—although as the father of one, I know that there is no such thing as a “normal” teenager!
We were fortunate and honored to have had the opportunity to chronicle Emily’s journey in our film Cancer: The Emperor of All Maladies. I’m so glad her father, her mother, and Emily herself have now given us a chance to hear the rest of her story.
We have a lot to learn from her.
ONLY THE STRONGEST CHILDREN ARE PICKED TO FIGHT CANCER
“OK.” That was all I could say to the doctor. I briefly glanced back at my mom who was with me in the ER. The doctor went right into the lab values, what was high, what was low, what the normal ranges were, which I didn’t hear a word of. I was just thinking, “How am I going to tell Emily? She’s only five. She’s not going to understand.”
May 29, 2010
The Friday before Memorial Day, I was up in the bucket truck overlooking a farm field in Grassflat, Pennsylvania, with a crew of linemen replacing cross arms on power poles. We’d met up near dawn among the cornstalks, where we put on big rubber gloves, testing for stray voltage and grounding the lines, before we switched out the cross arms. Getting the job going required all our attention, but as I wrapped the copper tie wire around the insulators on the new arms—something I’d done a thousand times before—I started to pray. At that moment, my wife, Kari, and her mom were with our daughter at the pediatrician, waiting to find out if something was wrong with Emily.
All my thoughts had been about Emily from the moment I’d left home that morning, starting with my memory of the first time I held her in my arms and believed that my little girl could do something that would change the world. I sensed her strong heart and, even as a baby, I saw her joy, and in her eyes that spark of mischief. When Kari and I married in 2001 we struggled at first to start a family. Emily came along in 2005. We had expected Emily would be like Kari: thoughtful, observant, and shy, lover of Disney princesses and the pink and frilly parts of girlhood. I wanted to be the best dad I could be to her, to give her every opportunity, and to protect her. Yet I wasn’t sure how to be a good dad to a daughter, having been raised as I was, with two brothers. Right from the start, Emily was her own person: bright, funny, and with a lot to say, even as a toddler.
Like me, she loved the outdoors and had an easy way with people. She was a daddy’s girl who laughed at all my jokes, the dumber the better, and, like her dad, she was a prankster. When she heard my car pull in to the driveway, she’d scurry to hide, ready to jump out of a closet or from behind the sofa to startle me or douse me with a squirt gun. Even errands were fun when she was a passenger, strapped into her safety seat, explaining the world to me. She was tender and loving, too, though. When I had to have surgery for my Crohn’s disease, she was just three. She decided to sleep on the steps next to the room where I was recovering so she could be there if I needed anything, and she pledged she would grow up to be a doctor so that she could be the one who fixed her daddy.
Emily also inherited her mother’s grace and beauty. Often when I got home, I’d find them doing crafts at the kitchen table or curled up in Kari’s favorite chair, books stacked on the armrest, because Emily, like Kari, always wanted to read more. Kari and I agreed that we had been blessed with a child who was a perfect balance of the best of Kari and me, and that our family was complete.
As these memories of my beloved little girl flitted through my mind, I tried to stay positive and hope for the best, but all that time something was whispering to me that the news from the doctor was not going to be good.
Two nights before, when Kari got home from work, her mom, Pam—who took care of Emily during the day—said she’d noticed lots of bruises on Emily’s arms and legs. Pam said the bruises on Emily’s arms could be from the Nerf sword battle she had had with her cousins that afternoon, and the large one on her shin probably was from the stumble she took on our flagstone steps. Emily was strong and full of energy, so we were used to seeing scrapes and bruises on our little girl who was so eager to take on the world. But as Kari dried Emily after her bath that night, she saw more bruises than her mom had seen. Kari counted twenty-one.
Earlier in the week, Kari asked me if I’d noticed that Emily’s gums were bleeding when she brushed her teeth. Then Kari remembered that recently Emily had had several nosebleeds. She searched the internet to find a reason for these symptoms. When the online search results highlighted leukemia, Kari didn’t think much of it because, other than the bruises, Emily was healthy. She texted her sister Brenda, a nurse, who immediately said these were signs of leukemia. Kari became alarmed. That evening on my way home from work, Brenda called me in tears, saying we had to get Emily to the doctor right away so she could get checked for leukemia.
As I opened my car door in the driveway, I heard Emily’s laugh, high and light above the western Pennsylvania birdsong. I followed that sound to the backyard, where I saw her pumping her strong legs on the swing set I’d built for her there. When Emily had said she wanted a swing set, I’d looked in all the big hardware stores but I hadn’t found any that seemed strong enough. I wanted a swing that could hold me. That was how I’d know it would be safe enough for her. Finally, I decided to make it myself. When our crews at the electric company switch out the cross arms, we don’t throw them away but toss them in a discard pile so the linemen can use them for home projects or contribute them to the community. I picked through that discard pile to find the strongest cross arms to serve as the beams, and sank the swing set’s four corners into concrete. Emily came with me to the hardware store to pick out green swing seats and the chain to hold them. I loved watching her swing in them, swooping so high up in the air that I had to reach to give her a push.
When Emily saw me walking toward her, she kicked a flip-flop off the tip of her toe and it smacked me on the shoulder. I staggered around, mortally wounded, a man felled by the weight of her flip-flop. Emily was giggling and I was grinning, but my eyes were on Kari. Her posture was withdrawn, closed in on herself. She was as worried as I was.
“Daddy! Push me!” Emily yelled.
“As soon as I talk with your mom,” I said. Kari’s eyes met mine when we hugged, and I could see the worry there.
“Look at her,” she said. “Is there anything about her that makes you think she’s sick?”
“No, except those bruises,” I said. “She’s rowdy and she plays hard. That’s not a sickness.”
“I know, and I feel silly rushing her to the doctor,” she said. “Dr. Sortor-Thompson is going to think I’m a worrywart.”
“I hear you,” I said. “But you know what Brenda said.”
“I do,” Kari said. “I’ll call the doctor in the morning.”
That night I couldn’t get to sleep, and Kari was restless. At about one in the morning, Emily came to my side of the bed in tears.
“Daddy!” she whispered. “My knees hurt really bad.”
She showed me a tender spot on her knee. I pulled her into the middle of the bed, snug between us. “Just stay here with us,” I said.
But as her pain got worse, Kari went to get pain medicine. I rubbed Emily’s legs. The combination of the pain medicine and the massage relaxed Emily, who drifted off to sleep. Having her between us soothed us, too. Kari and I fell asleep, the whole family together. I had set my alarm for 4:00 a.m. because I had to go in early for that job in the farm field. But before the alarm sounded, Emily tugged me awake.
“Daddy! Daddy! There’s something wrong with my legs!”
I tried to think how to help. “When my joints hurt, nothing feels better than a warm bath,” I said.
Kari drew the bath. I carried Emily to the bathroom, trying to have as little contact as possible with her sensitive legs. In the light of the bathroom, I saw bruises on her belly and in the fleshy parts of her underarms—places you don’t normally get them. As I lowered her to the water, I noticed reddish-purple dots on her legs. When the back of her legs touched the bathwater, she writhed.
“Owww!” She shrieked. “Get me out! Get me out!”
I wrapped her in a towel and laid her back in our bed to snuggle with Kari just as my alarm sounded. The last thing I wanted to do was leave them.
I couldn’t stop thinking about them as I rose up in the bucket, watching the sun rise over the field. When I am forty-five feet high above a farm field, I get a view that others pay to see, like the glimpse from the top of a roller-coaster. When the sun pours through the trees, it’s like the light in a cathedral, and during those moments I pray. I come from a devout Catholic family, and I go to church when I can, but it is in nature that I sense the presence of God. That morning, I took in a long breath of the sweet, late spring air to try to calm my fears as I cast my eyes beyond the horizon.
My family has lived in Pennsylvania for so long that no one is really sure when the first one of us settled in the western foothills of the Allegheny Mountains, midway between Lake Erie and the Chesapeake Bay. My hometown, Philipsburg, has about 2,700 people, and many of them are related to me. The hills are thick with hardwood trees, maple and birch, and crisscrossed by streams and creeks. As kids, my brothers Jim and Greg and I chased each other through the huckleberry, teaberry, and mountain laurel. We caught frogs and snakes in the pools made by the spring water and floated in the “crick” with our friends in inner tubes, dodging the heat of the summer.
My father was a lineman for the electric company. Eventually all three brothers joined our father on the power lines and, soon after, we started families of our own. One of the many things I loved about my wife, Kari, was that she grew up with three sisters in Woodland, a nearby town even smaller than Philipsburg. When we married, we hoped we would be blessed with a baby. We agreed that the childhood we would offer her would have a strong foundation: safe and secure in a big family, yet in all other ways unbounded. No clock or compass, and with enough free space for any adventure she could dream.
Emily had just turned five. Our families had celebrated her birthday and her graduation from preschool with a big party in our backyard just a few weeks before, and now the summer stretched out ahead of us. She and her half dozen cousins would spend the days swimming, having picnics and Sunday family barbecues in the long afternoons, and fishing at our family camp, until she started kindergarten in the fall. There was no part of our plans that included Emily getting sick.
Up in the bucket looking east, I prayed over and over, like a chant. “Dear Lord, please let Emily be okay. Dear Lord, please.” I had shut my eyes to focus on the prayer when my phone vibrated in my back pocket. I yanked off my gloves and swung the bucket away from the wires to take the call safely. The moment I heard Kari’s voice, I knew those whispers that something was wrong with Emily had been right.
“You have to come right away,” Kari said. “The doctor wants us to go to the emergency room at Clearfield Hospital for blood work. She suspects leukemia.”
“I’ll leave now,” I said. “I’ll get there as soon as I can.”
It seemed like it took forever to get down from the pole, lift the outriggers that stabilized the truck, and drive out of the field. As the truck rumbled slowly down the dirt road toward State Route 53, my heart ached for Emily. If she had leukemia, nothing would ever be the same for us, or for our families. Our world would go out of balance. I needed to talk to my mom, a retired nurse, so I could hear her tell me things were going to be okay. I tried to punch her number on my phone, but my hands were shaking. I have a tremor in my hand that gets worse when I am under stress, but I kept trying to dial her number as I drove. I wanted to be the one to tell her. I didn’t want her to hear this through the family grapevine.
I got the truck back to the shop, headed home to change my clothes, and jumped into my SUV. On the way to the hospital, I stopped by my brother Greg’s house, just a few blocks away, to see if our parents were there. Maybe one of them could go with me to the hospital. When I pulled up at Greg’s, I was surprised to see Jim, who was supposed to be at work soon. He had stopped in to let Greg’s dog out. Jim wasted no time sizing up my state of mind.
“What the hell is wrong with you?” he said as he leaned down to get a good look at me when I rolled down the window.
“Emily’s sick. She’s got bruises all over. The doctors think it might be leukemia,” I said.
“Aw, c’mon! Emily?” Jim said, his big voice booming as he threw his hands up in the air in exasperation. “I’ve never seen a healthier kid in my life. It’s probably nothing. You and Kari worry too much.”
“I hope you’re right,” I said. I kept looking around. “Have you seen Mom and Dad? Where’s Greg? Maybe he could come with me.”
“I don’t know where anyone is,” Jim said.
“Well, I can’t wait for them,” I said, rolling up my window. I needed to hurry.
“It’s not going to be anything serious!” Jim shouted after me as I drove away. “Don’t drive too fast.”
I sped away, and hadn’t gotten more than a few blocks before my phone rang. It was Kari.
“It’s leukemia,” she said softly. “You have to get here. You need to be on the Life Flight, and the doctors want us to choose a hospital.”
I took in a big gasp of air.
“Okay,” I said, trying to stay calm. “We are going to deal with this. We’ll get through it.”
When I hung up I felt my chest tighten with fear. I started hyperventilating. I didn’t think I could drive to the hospital on my own. And then, at the stoplight downtown, I saw Greg coming the other way in a bucket truck. I called him.
“Pick up, Greg, pick up!” My call went straight to voice mail. I dropped the phone in my lap and started to cry. The cars behind me honked. I don’t know how long I’d been stopped at that intersection, but they did.
When I finally got on the freeway, I just floored it.
How will we handle this? I was going to have to be a different kind of father and husband in the months ahead. I would need to keep our family strong so we could fight this together. How would I do that? For now, I just needed to get to Kari and Emily.
Kari called again.
“The blood work shows that Emily’s blood cells are ninety percent leukemia cells,” Kari said.
“Ninety percent!” I repeated, in shock.
“Her platelets are really low,” she said. I heard the beeping sounds of the heart rate monitor and the IV alarm going off in the background. “She has no immune system right now. They gave her an injection of morphine for the pain. The nurses and the doctors are all wearing masks to protect her from germs. They said we need to take her to a children’s hospital to see a pediatric oncologist.”
“Do they want to Life Flight her because her life is in danger?”
Kari started to sob.
“Kari, Kari,” I said. “She cannot see fear in our eyes. She must believe that she can get better. We have to pull it together for Emily.”
The staff gave us a choice of two hospitals that could treat Emily’s leukemia, Geisinger Medical Center near Danville, Pennsylvania, or Hershey Medical Center. We decided on Hershey, which is affiliated with Kari’s alma mater, Penn State, after we called my aunt Laurie, who was in medical school there. She praised the pediatric oncology unit at Hershey, and her endorsement meant a lot to us in the middle of this crisis. Also, Emily was stable by then, so we could drive there without having to take a Life Flight. Aunt Laurie promised to meet us at the entrance.
I walked into the Clearfield ER waiting room and saw Pam and Kari’s dad, Robin. Pam had come with Kari and Emily to the pediatrician that morning and I was so grateful Kari had her for company. Pam is petite and reserved, like Kari, with a heartfelt pragmatism. Kari later told me that when the doctor said that Emily had leukemia, she turned to look at her mom and took strength from how calm and steady Pam seemed, taking in everything the doctor said and letting it settle before she expressed an opinion. Kari said she didn’t break down until her dad arrived. Kari had fallen into Robin’s arms and let him support her. I thanked Robin for being there when I could not, and then I entered the hospital room where Emily and Kari were waiting for me.
I was surprised to see Emily smiling. The morphine took away her pain but had not dulled her spirit. Emily sat like a princess on her throne, propped up by many pillows, watching cartoons and drinking ginger ale, her favorite. When I smiled at Emily, Kari broke into a small smile, too.
I sat at Emily’s bedside and took her arm.
“I know you’re in a lot of pain and all of this is very scary,” I said.
“I’m not in pain right now!” she said, smiling.
“Good, good,” I said. “Your mom and I are going to take you to a different hospital because some of the cells in your body aren’t working right. That’s why your legs hurt so much.”
“Daddy, I want you to promise you’ll tell me if it’s going to hurt,” she said.
“We will. If we know it’s going to hurt, we’ll tell you for sure.” I said.
“That’s good,” Emily said. “Are you and Mommy going to stay with me?”
“We are,” I said. “We’ll be with you at the hospital to make sure that the doctors get you better fast.”
Emily put her little hand over mine and leaned into me. I put my arm around her waist tenderly, remembering all those bruises, and searched my mind for what I could say that would soothe her. I know about being very sick. My Crohn’s disease, an inflammatory bowel disease, was diagnosed in my twenties, and the stomach cramps, joint pains, and lack of appetite nearly killed me. I learned that a positive attitude can help. How could I get her to feel that way?
“You know, only the strongest children in the world are picked to fight cancer,” I told her, “And you’re going to beat it, no matter what.”
I had said the wrong thing. Suddenly Emily looked confused and scared, like she was about to cry. No one had said the word cancer to her before it came out of my mouth. She was fighting her tears just as I was fighting mine. I had thought I was the one who needed to be strong for Emily, but I recognized then that I had it wrong. Sometimes Emily needed to be strong for me. I drew her a little tighter to me.
“Being afraid doesn’t mean that you are not brave,” I said. I was stroking her hair slowly, using that rhythm as my anchor to the world, and my tears receded. “We will all cry. We can all cry together.”
The nurse came in to check Emily one last time before we put her in the car for the drive to Hershey. Before we got on the road, we swung by the house to pick up a few things and to take Pam back to her car.
When I had finally talked with my mom that afternoon, she’d volunteered to go to our house to pack up what she thought we’d need in Hershey. We had no idea how long we’d be at the hospital. I think of my mom as an angel on earth, someone so generous and openhearted that it’s hard to find a moment when she’s not doing something for others. Her way of handling pain and fear is to stay busy helping out. When we got to the house, we found that Mom had packed a duffel bag for each of us, a few bags of snacks, a box with some of Emily’s one hundred stuffed animals, and a bag filled with books and crafts. I loaded the duffels in the car, but something told me to toss in my hunting binoculars. I had no idea how I’d use them in a hospital, but I grabbed them anyway. Then, just before we got in the car, I told Kari to hold on a second because I wanted to get something else. I ran upstairs to our bedroom and opened the drawer where I kept the Saint Christopher medal my grandmother gave me when I’d gotten sick: an oval of silver on a thick chain. It is a pure silver casting of Saint Christopher with the child up on his shoulder, the one he carries over troubled waters, and the words “St. Christopher Protect Us” etched in the oval that surrounds the saint. I wore it all the time when I was looking for a doctor to cure me. When my grandmother and I prayed for my Crohn’s disease to heal, I always held it between my thumb and my forefinger. I wanted to have a link to my grandmother’s prayers for my health, which had worked. We needed the same for Emily. I tucked Saint Christopher in my pocket, and then we got going while Emily dozed in the back of our SUV.
Kari and I didn’t talk much during the drive. Kari was drained. I wondered what she was thinking, but I couldn’t ask because my own mind was so full of worries. How could we do this? What were we going to do about work? How could we support ourselves? I couldn’t think about the money. This was going to cost so much more than I could ever imagine. But it didn’t matter. We would do whatever it took to have Emily survive. They could take every material possession I had—the house, and the job, everything—as long as they saved Emily. Our families would help us. Our community, too.
Then I looked at Kari. I worried this was going to be more than she could handle, because Emily was everything to her. I could not lose my daughter, or I might lose my wife, too. Pull it together, now, I lectured myself. Be their rock.
Kari and I would have many decisions to make, and I hoped we would agree on the best course for Emily. Kari is a scientist, a dietitian with a master’s degree in nutrition, who is comfortable in the data, the facts. For me, science holds the cure, but it was not everything. In my battle with Crohn’s disease, sometimes I have had to defy my doctors. One doctor close to home predicted I would die young because my case was so severe. But when I held the Saint Christopher medal between my fingers, I sensed something—something whispered to me. I somehow knew that there was a specialist out there somewhere who didn’t feel the same way this doctor did. I searched until I found a specialist with a treatment and a surgery that saved my life. Science saved me. But I wouldn’t have found that solution without listening to those whispers.
Ever since I got sick, my decisions have been guided by these whispers. The word whisper isn’t exactly right because the whispers don’t come in words. I get a sense of something I can’t name, a recognition, like a distant voice sounding deep inside. And sometimes I get flashes from the future of things that later come to pass. To hear these, to name them, I have to concentrate as hard as if I’m listening for a whisper.
- "An incredible, beautifully written chronicle of a life-saving therapy, and the story of the family that endured and brought the therapy to life. This book is an affirmation of the power of science merged with the power of faith." —Siddhartha Mukherjee, New York Times bestselling author of The Emperor of All Maladies
- "Emily impressed me with her fortitude, confident, and nonchalant attitude. The story of how she and her parents persevered through the challenges they faced is deeply meaningful to me and I know will be truly inspirational for others."—Kareem Abdul-Jabbar
- "Playing in the NFL, I have seen my share of tough individuals who were successful because their opponents were unwilling to match their desire to win. Emily's battle with cancer showed this exact toughness. She would not give up!... The story of Emily overcoming all odds to beat cancer, the most ferocious opponent, is inspiring and reinforces the power of hope."—Jon Condo, Retired All Pro NFL Long Snapper
- "In this remarkable story, Emily's aggressive childhood cancer is beaten back when family, faith, and science converge... Emily and her parents tell their story, bringing us along to share in the urgency as different treatments are tried, and together they reveal the promise of cancer research and how immunotherapy has become a pillar of cancer therapy in just a few short years."—Sung Poblete, PhD, RN, CEO, Stand Up to Cancer
- "There are stories that forever change the way we view human health. Praying for Emily is a poignant portrayal of the courage and determination of Emily Whitehead and her family... I am profoundly moved by the Whitehead family's strength throughout their journey and inspired by the ways they have wielded their hope and heartache to help families like them-families who intimately know what it means to look toward a cancer-free future and fight to realize it."—Vas Narasimhan, M.D., Chief Executive Officer of Novartis
- "A truly beautiful story of the courage of a family who made a gigantic leap of faith in science and health care, and in so doing, pushed medicine into the next frontier of what is possible...This book will allow patients and those who have lost hope to find new hope, inspiration, and beauty in the possibility of making the impossible possible.—Christian Barkey, CEO of Barkey GmbH
- "A truly remarkable and uplifting story that is a page-turner and roller coaster ride of emotion all in one! You won't be able to put it down and you'll be thrilled that you didn't when you get to the triumphant ending."—Pamela Oas Williams, Film and Television Producer
- "Praying for Emily is a thought provoking and heartfelt account of what it means to face the impossible with prayer. Tom and Kari looked into the eyes of their sick child and did the one thing that cancer (and most of the world) did not expect them to do - believe. Because of their faith, the Whiteheads were not only able to save their child, but in sharing their personal experience and story of unrelenting hope - will save so many more. I believe and you will too."—Lori Rothschild Ansaldi, Documentary Filmmaker, friend, advocate of life
- "This remarkable story is a hero's journey but it's so much more than that: it is the essence of the power of love. I don't know the meaning of life but this is pretty darn close!"—Jason Flom, Founder, LAVA Media, LLC
- On Sale
- Oct 5, 2021
- Page Count
- 256 pages
- Worthy Books