Chapter 15

WE BELIEVE

Em was in too much respiratory distress and low BP. They had to intubate her. She is on a ventilator and sedated so she is not aware of what is going on. Had to administer steroids to stabilize her and save her life, but steroids kill T cells. They will check her bone marrow today to see if T cells had a chance to kill any leukemia and see if any T cells are still there. Will be on ventilator for several days, maybe up to a week.

—Kari’s journal

April 23, 2012

Emily had two IV poles holding seventeen medication pumps, with wires and tubes connected everywhere on her fragile body. We wanted to lie beside her to provide comfort, but we couldn’t get around all the tubes and wires. She was retaining so much fluid that she was swollen almost beyond recognition. The ventilator shook her body with such a strong vibration that it had worn through the skin at the back of her throat. Blood was bubbling out of her mouth and running down her cheeks. I wanted to wipe it off her face, but I was scared to touch her. The nurse came in to check her vitals and dabbed a bit of it away.

“I can take a lot,” I said to the nurse, “but I can’t take looking at her that way. Is it okay for me to wipe off the blood?”

“You can’t wipe it off,” the nurse said. “Her platelets are low and that liquid around her mouth is how she’s clotting. If you wipe it off, she’ll bleed to death.”

You know how people talk about hell on earth? That’s what that room felt like to me and Kari.

My mom was already at the hospital with us, so she knew the dire condition Emily was in, and Kari’s mom, dad, step-mom, Sharon, and aunt Kathy were on their way. I knew Aunt Laurie was coming, too. She had a few days off from her residency rotation at Hershey and had planned her visit long before this crisis. I was glad she was coming, as she and Kari loved to discuss science.

I called my brothers, Jim and Greg, who said they would come right away and bring Aunt Sally along with them. I asked them to hold off a minute while I called Becky and Ariana. Maybe they could all come together on that long drive. The girls decided to drop everything and come, even though it was finals week at Penn State.

Becky picked up Ariana and two other members of THON, who met up with my brothers. Kari’s sisters Kristen and Brenda were coming, too. Even her youngest sister, Lindsey, would be there, though she was eight and a half months pregnant. She wanted to see Emily so badly and she feared she’d never get another chance once the baby came. There were going to be a lot of our family members gathered in that waiting room.

Kari and I were complementary opposites, but for the first time since Emily got sick, we were not on the same page. Before this moment, our jobs of hope and science had never been in conflict, both contributing to the same goal: getting Emily to her cure. Kari had no more hope and she felt that trying to raise it was a waste of energy. She sat dumbstruck with grief, unable to leave the room, holding Emily’s feet and massaging them because she didn’t want them to be cold. She had a playlist of Emily’s favorite music on her phone, which she had positioned near Emily’s head in the hope that those tunes she loved could cover over the BANG, BANG, BANG sound of the ventilator, but they didn’t, at least not for anyone else in the room.

Kari wanted the room to be peaceful so Emily could rest, using what energy she had to stay alive. She wanted it to be just her and me in the room with Emily most of the time. She had taken out the prayer cloths my mother brought Emily and set up many of the religious tokens the followers of the blog sent us. We needed anything and everything to get through this. Kari thought it was only a matter of time.

I thought the opposite. I knew that Emily was in there fighting as hard as any human could fight to stay alive. I figured a little six-year-old girl needed reinforcements to keep going when her body was making it so tough. I wanted to bring the energy of the world into that room to support her, the energy not just from me and Kari, but from all the members of our family who loved her so much and had been there with us during these years of struggle. They all needed to bring that to her, along with the avalanche of positive feelings I knew were coming from the thousands of people all over the country and all over the world who were keeping Emily in their thoughts and prayers. Right then I couldn’t spend time on the blog reading those prayers, but I knew that they were there. And when I’d sit with Emily and touch the part of her hand or her arm that was not covered with wires and tubes, I’d shut my eyes and imagine all those fingers on keyboards and cell phones sending their wishes for healing and for life through my hand to my struggling little girl. I wanted all of that love to come into the room to speak to her.

Emily was going to pull through this. It was only a matter of time, and we had to hold that hope for her, and reinforce that energy so that she felt it, too. I knew she could hear us even though she was in a coma. The feeling of that love and the sound of those words, I believed, would give her a reason to fight to stay in our world. I believed she would hear these voices and hold on.

My mom had gone in to pray over Emily while I was out in the hallway calling people. She was carrying a message from Lucy, too. Big Jim was in too much back pain to travel, so he stayed home with Lucy. When my mom called him to tell him that Emily’s odds were now at 1-in-1,000, he said he knew something was up because Lucy told him. Just at the moment when we were getting that bad news, it seemed, Lucy’s left ear folded down like it had collapsed, and it had stayed that way. Lucy was so connected to Emily that she sensed this crisis even though she was 250 miles away. That ear was still folded down, and knowing what it meant caused Big Jim to dissolve into tears.

“You tell Emily about Lucy,” he told my mom. “You tell her that Lucy is pulling for her. Lucy wants her here.”

When my brothers met up with the THON students at a parking lot in State College, Ariana told me how focused my brothers were on getting all of them to CHOP as fast as humanly possible because they were so afraid that Emily would die before they could say goodbye. Jim was also worried about me.

He knows me best of all, as we’re only sixteen months apart in age, and he knew that I would stick to my hope for Emily even when the facts were telling any sane person that there was nothing left. He wanted to be at my side for this difficult moment, and he wanted to get there right away. He called our friend Gary, who is a state trooper, to ask him a favor. Please, he asked Gary, tell the troopers stationed on the highway that they were coming through fast on a family medical emergency. He asked that they please not stop them for speeding. Gary said he would take care of it but told them to drive safely to avoid getting into an accident once they hit the interstate.

Becky had never driven this fast before. She later said to me that it was all she could do to keep her eyes on the road at that speed, while Ariana, Kaylee, and Krista were already doing what they could to support Emily. A few weeks earlier, when Emily had been transferred to the PICU, they had started a hashtag on Twitter called #PrayingForEm, and used their connections to THON to encourage people to send Emily love and hope.

The hashtag caught on quickly and was already trending by the time they started on this wild ride to Philadelphia. As Becky was gripping the wheel, Ariana and Kaylee were posting videos describing what was going on with Emily and how they were on their way to represent all the love and good wishes Emily needed to get through this. While they were speeding toward Philadelphia, the numbers of the people following the hashtag started to grow exponentially. By the time they reached CHOP, in a record three and a half hours for a drive that normally takes four, they had thousands more people praying for our little girl.

My mom came out of Emily’s room after delivering that message from Lucy. She said she felt filled with love, filled with the grace of the Lord, who she was sure would not turn his gaze away from Emily. She joined me in talking to Dr. Berg.

“You’ve called your family in, Tom?” Dr. Berg asked me.

“Yes, I have,” I said. “Many of them are on their way right now. Emily needs to feel their love so she can pull through this thing.”

I could see Dr. Berg struggling to tell me what he truly thought. He is a kind soul, but he didn’t want to mislead me or to say anything to encourage my hope in what he saw as a hopeless situation.

“We’re the biggest PICU in the country,” Dr. Berg began, “and almost every child we put on a ventilator gets off successfully. Unfortunately, I don’t believe your daughter will be one of them. Children this sick usually don’t get better.”

“Please keep trying to help Emily,” I said. “I know she is going to get through this.”

“You see this line,” Dr. Berg said, using his foot to mark off an imaginary line on the floor of the PICU hallway. “I’m telling you this is the line of a body’s ability to survive, and Emily is beyond that line. She’s walking right along this line and it’s like she’s walking on the edge of the Grand Canyon. If she gets any worse she’ll go over the edge and she’ll never come back. Her kidneys are failing, and her lungs are failing. She is not going to be here tomorrow morning.”

“I respect your opinion, Dr. Berg, but she’s going to make it through this. I’ll see you at rounds tomorrow.”

I saw that Kari’s family had arrived in the waiting room. It was Kristen’s birthday, and I know some of the family were holding out hope that Emily would not die that day because it would forever make it a sad observance, not a celebration. I couldn’t believe Lindsey was there. She was so obviously pregnant, and it couldn’t be comfortable for her to be sitting in those plastic chairs surrounded by people who were in mourning.

I would only allow people in the room one at a time because I agreed with Kari that we didn’t want there to be too much going on in that room, as it might drain Emily. I coached people before they entered that when they saw her it would be hard not to fall apart. They had to wait until they felt that they could be strong for Emily, and for Kari. They could see through the glass walls of the PICU that Kari had a scarf around her head to block out the noise of the ventilator and had crawled into the bed next to Emily, carefully twisting her body around the tubes and wires. It was so sad to see this, and at the same time it was such an act of love between mother and daughter.

Kari’s mom, Pam, said all the things I thought Emily needed to hear: that she was loved and that she was needed, and that she had to fight with all she had to stay with us because we didn’t know how we’d go on without her. That clear-eyed pragmatism that Kari had depended on the day Emily was diagnosed was with Pam at Emily’s bedside. She stayed steady and said the right things, no matter how much she was grieving inside.

Robin was next into the room, and I’ll never forget the look of shock on his face as he tried to compose himself to speak.

“Miss Em,” he said softly. “I know you are going to pull through because we haven’t finished our art lessons. I’m still not very good at drawing SpongeBob and I need your help to draw houses right. Miss Em, I need you to keep teaching me.”

There was a stir in the hallway when Jim and Greg arrived with Aunt Sally, Becky and Ariana, and the other girls, all still agitated from their high-speed journey. Jim and Greg stood still in the hallway, taking in how Emily looked. Aunt Laurie had arrived a few minutes before. She said to them, “There’s no way she survives this. There’s no way. Kids cannot survive this.”

When Becky saw Emily through the glass to her room, she had to duck out to the bathroom to throw up, she was so upset by what she saw. She had a hard time reconciling the memory from a few days before of the playful way they had washed Becky’s car in Kristen’s driveway, squirting each other with the hose, with the bloated figure clinging to life on the other side of the glass. Becky knew she had to compose herself because she has no poker face, and she needed to be stronger than that for Emily. This would take a lot of her self-control, and she didn’t know how much she had in her. Becky was certain that she and the others had come to be with Emily when she died because, once she saw what Emily looked like, she believed there was no way Emily could pull through.

Aunt Laurie was agitated, more so than I’d seen her, even with all the times we had hit a terrible juncture with Emily. She’d just come off a monthlong rotation at the pediatric intensive care unit at Hershey, which was framing her idea of Emily’s chances. She wanted me to have a sober and realistic sense of Emily’s odds, not to gin myself up with hope, because the fall from that would hurt so much more.

“I’ve never seen anyone this sick before, Tom,” Aunt Laurie said. “When you have the beginning of multiple organ failure and all of these medicines to support her blood pressure, it’s unlikely she’ll make it.”

“She’s still in there,” I said. “I know the fight in my girl, and I know she’s not giving up. It is not her time.”

“They’re just keeping her alive on machines,” Aunt Laurie said.

Kari started to sob quietly. She knew the truth in what Aunt Laurie was saying. She’d said almost all of that to me. Hearing someone else describe the circumstances Emily faced released some of the sorrow Kari expressed in those tears.

“I’ve watched six kids die this month, and it was heart wrenching for those families, and for everyone who cared for those children,” Aunt Laurie said. “You have a tough decision to make. You don’t want to prolong this suffering.”

“We’ve said many times we’ll only let her suffer when we know it’s leading to a cure,” I said. “All this and she’s still alive. She’s going to be cured.”

“Look at the two of you,” Aunt Laurie said. “I’ve never seen you further apart since Emily got sick. Tom, you’ve always had a way of bringing Kari up, but you can’t do that here. You’ve got to get on the same page here.”

“I don’t think we can,” Kari said.

“You have to sign a Do Not Resuscitate order. I’m saying this for her and for you, too,” Aunt Laurie sad. “I’ve seen so many horrible things happen to children in the PICU. Things that parents should never have to witness. There are a lot of things we in the white coats can do, but should we do them? Not always.”

“We have so many people praying for her that I just know, I feel, that the prayers are going to help her get through this,” I said.

“My belief in God is not as strong after my husband died in that car accident,” Aunt Laurie said. “You do not know why these things happen. Bad things happen and God is not always there. When I saw those six kids die this month, I didn’t see God intervening. You have to sign the DNR. If you don’t and her heart stops, the PICU team will crack open her chest to try to revive her. You don’t want that for Emily. You don’t want that to be your last sight of her. You want peace.”

“That’s not going to happen,” I said, although with Aunt Laurie saying all these things it was harder for me to believe the words coming out of my mouth. “Emily’s going to make it.”

Kari and I went back into Emily’s room, she to the armchair and me to the chair next to Emily’s bed. It was horrible to see her like that, so swollen that her head was misshapen. Her skin was tight and splotched with purple, and her eyes were taped shut. Kari had taken thousands of photos and videos of Emily in the last two years, documenting every part of the illness. At this moment, when Emily looked so unlike herself, Kari insisted we take no photographs. She did not want to remember Emily this way.

I was lost in my own confusion. I couldn’t sign that DNR for Emily because I knew if I did it would feel like I was giving up, like I was signing away her chance for survival. In that way, Aunt Laurie was right about the hope that I clung to so fiercely even at this moment when all the signs said Emily was not going to make it. If she didn’t pull through, I’d be a different person on the other side of this. Kari would be, too.

When Robin had left Emily’s room, he’d gone to the front desk to ask if they could find someone to give Emily the anointing of the sick. At first they called in a minister, but Robin, being a devoted Catholic, politely told him he needed a priest, so the nurse called another number.

I saw Ariana standing outside Emily’s room by herself, and her face was oddly joyful, as though she, of all the other people who were trying to talk straight to me, shared my faith about Emily.

“There’s going to be a miracle in that room,” she said. “We just have to hold the space for that miracle.”

I took her hand and she put her other hand over mine, as if we were praying.

“I’m glad you see it, Ariana,” I said. “There’s just two of us who do, so we’ve got to stay strong together.”

The monsignor who arrived to minister to Emily performed anointing of the sick, the preparation for being received into the hands of the Lord, to absolve her of her sins so that she could receive the mercy of the church, and viaticum, the Holy Communion that would provide her with spiritual food for the journey to heaven. I watched the priest praying over Emily, and I was buoyed up by his message of hope, not resignation: “God our Father, we have anointed your child Emily with the oil of healing and peace. Caress her, shelter her, and keep her in your tender care. We ask this in the name of Jesus the Lord. Amen.”

I know the monsignor could sense my discomfort at his presence invoking Emily’s final journey to the Lord. He motioned me out into the hallway to comfort me, too, not just to consecrate Emily’s remains into the Lord’s care.

“There’s been one confirmed miracle at this hospital, and it was a little boy on a ventilator just like your daughter,” he said. “He was barely clinging to this world, but he was still here. Two nights in a row, another little boy would appear from the elevator and come to visit the sick boy.

“The sick boy was Chucky McGivern, who was here back in the 1980s. He had smallpox and a fatal kidney disease called Reye’s syndrome. His condition was grave. His relatives gave the family religious medals, including one of our local saint, Saint John Neumann, the fourth bishop of Philadelphia. Do you know anything about Saint John Neumann?”

I had to confess that I did not.

“He is a saint of healing,” the monsignor said. “There are many miracles connected to him, times when a child was at the edge of death and the family brought the spirit of Saint John Neumann and the child was healed, like this little boy.”

The monsignor explained that Chucky’s mom, Nancy, said she didn’t believe in miracles, except for the chosen, and she didn’t feel her family was chosen. Nonetheless, she placed the three medals of the saints on a safety pin, with Saint John Neumann at the center, and pinned them to Chucky’s pillow. Her cousin gave her a relic, a piece of cloth from one of Saint John Neumann’s robes, which Nancy pinned to the other side of Chucky’s pillow.

The next day the doctors told the McGiverns that Chucky had only a 10 percent chance of living; his lungs had collapsed, and his kidneys had stopped working, just like Emily’s. The family signed the DNR that I could not make myself sign.

When they returned from signing the DNR, the nurses told the McGiverns that they’d found a little boy in the room, standing at Chucky’s bedside. He was about ten or eleven years old and dressed in a scruffy manner, with a tattered plaid jacket and round glasses, and he had a bowl haircut with bangs.

I was listening intently. A little boy from the elevator? How could this be so?

“The nurses told him he couldn’t be there. He needed to go back to his family. When the McGiverns got to Chucky’s bedside they noticed that the Saint John Neumann medal Nancy had pinned to his pillow was turned the other way, facing the pillow. That wouldn’t be easy to do, I thought. Someone would have to take the pin off the pillow, take two medals off, turn the Saint John Neumann one around, and replace both of them.

Chucky made it through the night, and the next morning, when the doctors were checking him, amazed that he was still alive, the little boy appeared again. The doctors told him he had to leave. He was not family and was not allowed in the room. Chucky’s dad, who was sitting in the waiting room, saw a boy who looked just like the one the nurses had described standing at the edge of the waiting room, looking at him. When Chucky’s dad stood up and turned to go to speak with the boy, the boy walked into the elevator and the door shut behind him. When the McGiverns got to see Chucky, they saw that the Saint John Neumann medal pinned to his pillow was again turned facing the other way.

Miraculously, Chucky pulled through. The doctors who tended to him said they had never seen anyone this sick get better that fast. A few days later, when Chucky could speak again, he recalled a dream he’d had when he was in a coma. In the dream there was a party for him with many children around his hospital bed, including a little boy whom he described as wearing a plaid jacket, round glasses, and a bowl haircut, just like the mysterious visitor everyone had shooed away from his hospital room.

When Chucky got better, the family took him to visit the church of Saint Peter the Apostle in Philadelphia, the national shrine of Saint John Neumann, to pay their respects and give thanks at the tomb of the saint, who was canonized as the patron saint of sick children in 1977. The church displays images of Saint John Neumann, including a drawing of him as a little boy. Chucky was amazed by this drawing. He told his parents that the boy in the drawing was the same one he saw in his dream.

The story left me speechless. Was it possible that the little boy in the elevator, who had been part of my decisions all this time since I got sick and from the moment Emily had been diagnosed, represented even more than I had attributed to him? I touched my Saint Christopher medal reflexively. The little boy in the elevator meant hope.

“I believe there will be a second miracle confirmed when we are done,” I said.

The priest shook my hand and looked me in the eyes in that loving way of deep faith.

“I will be praying for that,” he said.

While we were going through this, we didn’t realize how quickly the word was spreading about Emily. We had asked for prayers and we got them by the thousands, more than we ever could have imagined. As we sat in her darkened room, the room dominated by the industrial sound of the ventilator that was keeping her alive, I did two things to stay in the neighborhood of hope. Sometimes I would close my eyes and consciously return to the vision I had of the bone marrow transplant hallway where I was teaching Emily to walk. Just her and me, my hand around her shoulders to steady her, as she took one small step and then another with that determined look on her face, and always with just a hint of a smile. She had made it. We had made it, her and me and Kari, and this hellish time in the PICU was all just a memory that set the stage for this incredible victory. Or, after my visit with the priest, I would open my eyes and take my strength from everyone praying for Emily.

The prayers from loved ones and strangers were helping her to survive.

Keep fighting Angel. When you get through this you will be able to face anything. NO mountain will be too big, no river too wide, no hurdle too big. You are an inspiration and you have touched many hearts. We all love you so much and we don’t even know you. I know I speak for thousands of people who support you and are waiting to see that you are free from this. Fight angel.

—Cindy Penn-Halse

Hang in there Emily. God wants what is best for you. We are praying for you and your family every day.

—Charlene Coder

Kari didn’t have the energy to post when the doctors told us to call in our families to say goodbye, and I didn’t share that news on the blog. I wanted the people who were following her progress online to stay in prayer, and not to have any doubts or sorrow. I also knew that we needed their love and support, so I took over posting on the blog to keep our followers engaged. I knew that I needed them as much as Emily did.

Keep drawing your strength from each other and, most importantly, from the Lord Jesus! He is right there beside each one of you at all times, guiding and comforting you, and giving Emily the strength and resolve she needs to fight through each minute and hour of each day. Because of your little girl, so many people—believers and nonbelievers alike—have come together to lift you all up in prayer and even are being drawn closer to the Lord themselves as a result. Fight on Em—you are cared for more than you could ever know!

—Melissa Saupp

We are praying hard in Michigan for Emily’s healing and you & Kari’s continued strength to support Em through this (awful) experience. I know she can feel your love because we do thru each update you provide to us.

—Cheri Lemaire

I’m praying so hard for Em’s strength but also for your (Tom n Kari) peace. I can only imagine the angels surrounding you two and holding you up. Your whole family is being loved and prayed for.

—Angelina Schilt

Keep fighting sweetie. The miracle is happening. You can beat this!!! Kari and Tom hang in there. God is with you and watching over you!!! Your sweet Emily is going to beat this!!!

—Vicki Maines

As I sit here with my 9-year-old girl, every cell in my body is in agony for you… my knees are sore from the time I have spent in prayer for your girl and for you. In the book of Hebrews, the whole of Chapter 11 is a written testament of what God has done through faith… keep the faith, keep fighting Emily and let us do the talking to God… we can do this.

—Joy Swatsworth

We truly believed that, without those prayers, Emily would not have survived that time in the PICU when everyone said she was about to die. The doctors could not explain why she was still alive. We kept telling the doctors it was because of all the support she had and all the people praying for her.

On Wednesday I took Becky and Ariana out to the hospital atrium to speak with them about going home. It was finals week and they were sacrificing a lot to be with Emily, especially Ariana, who had a perfect A average and was certainly risking that by staying with us at CHOP. Some of my family had started on their way home by then and I thought the girls should get back to their lives, too. My brothers were on their way back to Philipsburg. Kari’s pregnant sister, Lindsey, also needed to go home, and just in time—just forty-five minutes after she got back her water broke, and she and Pam ended up in another hospital, where she gave birth to a beautiful little girl. Robin and Sharon also headed back home.

Before we left the PICU for our chat in the atrium, Ariana took Robin aside and grabbed his hands to reassure him.

“Don’t worry,” she said again. “We’re going to see a miracle in that room.” Robin didn’t know what to make of that, but, as a man of strong faith, he wanted to believe, so he chose to do so.

“We can’t tell you how important it’s been to have you here with us,” I said to the girls from THON.

“We don’t want to go,” Becky said. “We need to be here for Emily.”

“And for you and Kari,” said Ariana.

“I’ll keep you in the loop,” I said. “You’ll always know what is happening with her. You can’t miss finals in your last semester.”

“We don’t care,” Ariana said.

“No, we don’t care,” said Becky. “There’s no place else we want to be.”

While we were talking, I got a message from Dr. Grupp, who wanted to talk to me and Kari. He’d been hard to contact in the last day. I would page him, and I know he is responsible about getting back to his patients and their families, but for some reason he didn’t get back to me. I didn’t spend too much time thinking about this, as I had plenty else to do, tending to Emily, holding on to Kari, and trying to keep my family out of despair. I was trying not to think the worst as I made my way to the PICU and the THON girls came with me to say their goodbyes, still unhappy that I was sending them away.

Dr. Grupp asked Kari and me to step out into the hallway for a chat. He looked tired and I knew he hadn’t slept in days while trying to figure out what was going wrong with Emily.

“We’ve found an anomaly in Emily’s blood work,” he said. “There’s a drug to treat that problem, and with your permission, we’d like to give it a try.”

“That’s the miracle,” said Ariana brightly. “It’s all right for us to go home.”