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So much is asked of some children. One team of specialists tries to let them just be kids.

A Place to Heal

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The can of Boost follows Joy Maxey everywhere she goes on the seventh floor of Medical College of Virginia's main hospital. Joy doesn't want to drink it. She's waiting for her mother to arrive from work with some of her grandmother's homemade macaroni and cheese.

Remote control in hand, she is sprawled out on a hospital bed so big that it seems to swallow her. She is reed-thin; at 14 years old she looks all of about 8, this bespectacled, delicate girl wearing fluffy purple slippers and with thick blonde hair cascading down her back. But she has the knowing gaze of someone who is far older.

She doesn't take her eyes off the television as Heather Kinney tries to reason with her about drinking the nutritional supplement.

"I realize it's disgusting, but unfortunately that is irrelevant," says Kinney, a child-life specialist at Virginia Commonwealth University's MCV Hospitals. "You have to drink it whether it's disgusting or not. That's the way it goes."

Joy Maxey has heard that most of her life. When she was 2 months old, her mother, Nancy, noticed her baby had developed what sounded strangely like a smoker's cough. Joy spent 21 days in the hospital with pneumonia. Two years later, after her mother watched a movie called "Alex" and recognized her daughter's symptoms in one of the characters, Joy was diagnosed with cystic fibrosis, a genetic, chronic, progressive lung disease with no known cure.

So far, Joy has been hospitalized at least 25 times. She takes up to 30 pills a day. She has a permanent feeding tube in her belly. Without that, it's unlikely you could look at Joy and tell that anything is wrong with her. She guards the tube with her arm. It is painful, especially if anyone bumps it. Her arm goes up, down. An unconscious gesture, hand to hip, making sure nothing touches the catheter.

She doesn't like needles, but pain is something she deals with. Discomfort. Four times a day, someone pounds on her back to help loosen the phlegm in her chronically congested lungs. She takes enzymes with every mouthful of food, every snack, every meal, since the disease affects her body's ability to absorb nutrients from food. Several times a day she undergoes breathing treatments. This past year, she gave up going to school in favor of taking classes at home, by computer. It's just easier that way.

Yet she is also just like any other teen-age girl who hangs out at the mall, downs roast-beef-and-cheddar sandwiches from Arby's, goes roller skating on Friday nights and listens to the Dixie Chicks. She has close, good friends and loves to go to church. She has six cats. She watches "The Simpsons" and "Wheel of Fortune." She doesn't have a boyfriend.

She wants to be a veterinarian. "People say, 'Don't you want to be a nurse?'" she says in her Southern Valley-Girl twang. "And I'm like, 'I don't wanna stick people, what are you talking about?'"

Joy's a normal girl. But at a hospital like MCV, it can be difficult to remember what normal looks like.





A small group of women like Kinney spend most of their days there trying to help sick, injured children — children who should never have been there in the first place — to recapture normal.

"It's about letting kids be kids," Kinney says. "If someone's having an IV started and everyone's saying, 'Don't cry, just be brave,' I'll say, 'Cry. You're 4. Go ahead and cry. Try not to move, but it's going to hurt. Go ahead and cry.' You can't tell a 4-year-old not to cry, that's not fair. You can't tell a 12-year-old not to cry. That's not fair — they're kids.

"Helping adults let kids cope and do kid things is a really important thing, because adults try to protect themselves by good intentions. 'I'm not going to tell my kid this is going to happen because it might scare them.' You're right, it will, but it's going to happen. Helping kids be kids and helping people be honest with kids is the most important thing I do all day long."

MCV's child-life program is unusual in that it is offered as a free service to patients and patient families 365 days a year. This year, the hospital is expected to have more than 3,300 admissions and more than 21,800 patient days through the child-life department. Children who are admitted to the hospital for simple surgical procedures can go through the department's preoperative class. There, a child-life specialist tells the child everything he or she can expect before, during and after surgery.

Kinney spends much of her time taking care of patients who are in the hospital for the long haul — patients like Joy Maxey, who calls MCV "my second home, unfortunately."

Kinney is one of three full-time child-life specialists. She typically works with school-age children, and trains and coordinates volunteers assigned to the department. Flora Wu works with children from the pediatric surgical clinic. And Lexi Aman, a 26-year-old ebullient redhead with a ready belly laugh, works with patients and families in the pediatric intensive-care unit, while coordinating the hospital's pet visitation program, Paws for Health.

"We are very much peers and friends and co-workers," Kinney says. "Sometimes we act like siblings. We spend that much time together, and we know each other that well — in the work environment. None of us hang out together outside the hospital. Ever."

"But I can anticipate anything she's going to do," Aman says of Kinney. "I know what she's going to do, and that makes my job a lot easier. And vice versa for Heather. If she's already met someone and I come in, I might see a blanket and I know Heather's been there, I know she's already talked to the family, I know what she's told the family. But we're all three different as night and day." Kinney, the tough exterior. Aman, who talks, cries, laughs. "I'm probably the most emotional of the three of us," she says.

"And the most outspoken," Kinney adds.

Theirs is an uncommon specialty in health care, and the hospital recruits nationally when positions are open.

Kinney, who has worked for MCV since August 1998, was just a year older than Joy when she developed an interest in child-life programs. She was 15, a counselor at a camp for kids with cancer. She found herself hating it.

"I was miserable for the first three days," she says, "thinking about all of these kids and how they were going to die, and a friend sat me down and said, 'Is there anything you can do that's going to make them live or die?' And I said no. And she said, 'So why are you here?' And I said, 'So they can have a good time.' She said, 'Then help them have a good time.'

"I thought, Yes, there are all of these horrible things that can happen to kids in the world, and there's nothing I can do to affect 99.9 percent of them. So what can I do to not feel so helpless? I can help them have fun. I can help them feel in control of their lives. I can help their parents have control over what happens to their children and feel empowered." Kinney continues: "This job does all of these things, and we have so, so much fun. We have horrible days, children die, families are heartbroken, and then an hour later I'm in here in the playroom and we're making macaroni and cheese."

One evening in early December, Kinney spends about an hour playing a board game with Joy and trying to coax her into drinking the nutritional supplement. After staying out of the hospital for a year, Joy, who lives in the Montross area of Varina in eastern Henrico County, is back because her weight has dropped. So has her lungs' capacity to take in oxygen. Each problem can amount to a crisis; together, they are deadly. She shocked her doctors by telling them she knew she needed to be in the hospital.

Once her mother arrives, Joy calls for a nurse, and under the watchful supervision of her respiratory-care assistant, Tara Turner, begins a breathing treatment. It doesn't take long to complete. She devours the macaroni and cheese from home, listens indifferently and swills a Coke while Kinney scolds her for eating before her PT, or physical therapy, is complete.

Lately, Joy has been thinking she might get the green light to go home the next day. On average, patients with cystic fibrosis spend two weeks in the hospital once they're admitted. But Joy feels optimistic because she's managed to gain a little weight in her first few days in the hospital.

Mollie Anderson, a pediatric pulmonary nurse practitioner, comes in to examine Joy. Anderson is beloved in Joy's family. Joy's mother calls her "Doctor Mollie." Anderson listens to Joy's lungs while Joy chatters about going home to her cats. She gives her bad news: Her lung functions "have done a little drop." She concludes, "We're going to have to work on that."

Later, Anderson laments the seriousness of Joy's condition. Ultimately, Joy will spend more than 10 days at MCV before going home for Christmas. "Her life is not one of a normal teen-ager because she has so much major therapy she has to do, every single day, and that's hard," Anderson says. "And she's very smart — she knows there's no cure, that there is treatment, there is therapy, but her life has been interrupted by multiple hospitalizations."

The average life expectancy for a person with cystic fibrosis is about 32 years.

Anderson says having the child life specialists involved in Joy's hospitalization has been vital. "Child life … is unbiased. … They do not inflict pain, they do not inflict medication. They are viewed by the family as the port in the storm. They will make this hospitalization, although difficult, as easy as possible for the family. It's to help them go to the playroom, but it's really more for comfort and stability. They have the movies and all of that, but the children really view them as a safe port — they can tell them anything, they can do anything with them, they are a refuge."





Promptly at 6 p.m., Kinney takes Joy to the playroom. For many sick kids the playroom becomes a sanctuary while at MCV. As a group of Lee Davis High School students comes in with reindeer cookies and crafts for the kids, Joy sits at a table alone and picks at her dinner of turkey and mashed potatoes covered in an eerily yellow gravy. Here in the playroom, she can play computer games, cook and watch movies. She used to hate coming to the hospital. "Now," she says, "I just come in and try to get things over with and go back home. I've been out a year, and I'm not used to being stuck in one place."

Without child life, her visits would be "boring — really, really boring," Joy says. "They come in and play games; we have football players who come in and visit. And race car drivers."

She would rather be anywhere but here, though. She's hoping for good news. Hoping to see friends. Hoping to get back to Wednesday nights at church.

She's struggled with being a "cystic," as she calls people with her disease. "I actually questioned God about why, and I felt really bad afterwards," she says. "Why he put me on this earth, why I had to have CF, why couldn't it be somebody else." She still isn't sure about the answers. "I guess it's to help out other people," she suggests. "To help other people understand."

In the place of understanding these is simply play. Play is elemental. Indeed, play is essential.

"In the time I've been here, I've seen us move from a general-recreation sort of play department into a true child-life department, where we're talking more about medical procedures and we're helping children learn to cope with that, helping them understand what they can do to help that process," says Angelette M. Pryor, director of the MCV Children's Medical Center child-life department. "It's a very interesting concept, but it's not novel — the more you understand what's going to happen to you, the less fearful you are about it."

In the playroom, which is just as much her sanctuary as it is the kids', Kinney rushes in and out, bringing in more children. Children in pajamas, children with IVs. It's hard not to look at them and think, Children just shouldn't be here.

That's a common reaction. "They're not supposed to be sick, they're not supposed to die," says Aman. Together, Kinney and Aman are so in sync they complete each other's sentences.

"They're not supposed to get hurt," Kinney says.

Aman echoes her: "They're not supposed to get hurt."

"No one is supposed to hurt them," Kinney says emphatically. "That's the worst part of this job. It's worse than death. Child abuse is the worst thing we deal with here, absolutely the worst, and we deal with a lot of it. There are worse things than death."





In the playroom, kids get to be kids again. Kids like 7-year-old Nathaniel Donaldson, who has suffered on and off from leukemia since he was 2. Kinney ushers him into the playroom with the other children and the Lee Davis students, and he is immediately animated.

"It helps, when you're here — you're hooked up to an IV, 72 hours, maybe 90-some hours, it just depends on what you're here for — for them to be able to come into the playroom and to do things, to make pictures, just to laugh with the other children, they brighten up so much," says Carol Donaldson, Nathaniel's mother, an administrator with the state tax department. "It would have been harder for him. He knows he has the playroom he can come to; he knows he can play Nintendo."

In the playroom, kids can do anything. Bake cakes, make macaroni and cheese, play videos, paint and draw. Make messes. No one minds messes in the playroom.

"Play helps children because play is what they do. When adults are sick and want to get back to normal, going back to work is a big deal," Kinney explains. "If they can play, they feel normal. Even if it's just Nintendo, that's a pretty normalizing event for kids. One of our goals is to normalize this environment, to make it familiar, to take away a lot of the fear inherent in it the medical setting."

Death is a subject that invariably comes up.

It doesn't take long to realize that death is, in its own way, something honored here. Two large memorial quilts hang on the walls in the department. Stitched together are bits of cloth that celebrate the lives of children who never went home. One quilt panel is simply a piece of one little boy's favorite Batman pajamas. Another panel has a drawing of Aslan, the heroic lion from Narnia stories by C.S. Lewis, and a quote from Lewis' book "The Last Battle": "There stood his heart's desire, huge and real, the golden lion, Aslan himself. … Come further up. Come further in." Memories of loved things, treasured daughters and sons.

"It's the hardest part of this job, and as weird as it sounds, it's the most rewarding part of this job, too," says Aman. Aman is 26, and in contrast to Kinney's Midwestern stoicism, she can become emotional when she talks about "her kids."

"Sometimes I get frustrated. Heather knows this," she says. " 'Why am I doing this? Why am I doing this to myself? I'm losing my kids.' And I feel like a piece of me goes every time one of my kids goes. I say they're my kids, only because I've allowed them to come into my heart. They've become part of my day. You expect them, and they wait for you."

The subject of death brings Aman to ready tears. She doesn't seem to mind.

"To have the opportunity to walk with these kids and their families through something that is so precious teaches you so much about life and how much we take for granted … how to live," she says.

"Some of these kids can really give you the gift of allowing you to walk with them, but also to be part of their grief process, to share thoughts and feelings. A lot of it may be anger, but it's so healthy to get that anger out. 'Of course you're mad, you're dying.' When you have the chance to be with someone who faces it, and shares it with you, it's. …"

She pauses, and Kinney fills in the blanks: "It's powerful."

Aman agrees. "It's powerful, and it's an honor," she says. "It's something that, me personally, I've had to learn to accept that honor, and find grace, and see the peace that these people have found. Sometimes you get selfish. You think, 'I understand where they are, I see they've found grace and that feels good,' and then the other side of me says, 'I'm mad, I don't want you to die, and I'm going to miss you.' And that's selfish. And it's OK to be selfish inside, but it wouldn't be fair to someone who is sharing those intimacies to express that. Just to have them let you in is so powerful. It's the greatest gift you can receive in this job, and obviously it's the one that pulls my heartstrings."

Sometimes, for a child who has been a patient in the hospital for a long time, they'll hold a memorial service. Kinney prefers to go to funerals.

"If it's a child I've known and worked with, it really helps me to go to funerals. That helps me be done, to know that they were suffering and now they're not, and it brings some closure."

Aman says death was something new for her when she started working at MCV two and a half years ago. She had never faced it in her own life. "It's the hardest thing I've ever done," she says, "but it's the best thing I've ever done."

She, Kinney and Wu spend a lot of time together in their cramped office on the seventh floor. Toys are stacked everywhere, while the walls are full of paintings and drawings and other tokens of I-love-yous.

Each remembers a patient who defined how far they will go in making an emotional connection. For Kinney, it was a patient she met seven years ago when she was a volunteer.

For Aman, it was Matt, who was diagnosed with cancer the same month she was hired at MCV.

"He's the one patient I've come across that I think I'll tell my children about," she says. "The hardest part after somebody like Matt is that now I've got this wall. I'm not going to get close like that again, I can't open up my heart and let somebody in because it hurts too darn bad."

But she knows she will. So does Kinney. "But it will never be the same. Nothing will ever be the same," Kinney says. "Once you learn it, you've got it. You don't need to do it 15 times."

Matt was 22 when he died. Aman had known him for three years. Kept him from getting bored when he was in the hospital, which was for long stretches of time. With him when he lay in the intensive care unit after his leg was amputated. E-mails back and forth when he was seeking answers about alternative treatment in The Netherlands. With him when something was different and he wasn't awake and she knew it was time. He would have hated her tears, she says. He wasn't touchy-feely. But that last time she held his hand and whispered in his ear. Then, one Monday before Thanksgiving, Aman was having lunch at Melito's with her mother and sister when Kinney called to tell her Matt had died. His mother had tried to call her; Matt had Aman's telephone number keyed into his cell phone.

As Aman talks about him, her grief is so palpable, so large that it feels like the room cannot contain it. Kinney peels an orange. Head bowed, silent, she listens. Because that's all she needs to do.



In the playroom, Joy's mother, Nancy, a soft-spoken 45-year-old who works as a secretary at an insurance company, watches while Joy sits at an elaborate computer nearby. The computer was donated by the family of a child-life patient. Nancy is fiercely protective. She smiles at Joy's dry sense of humor: When asked about her doctors, Joy replies, "They're really annoying."

Asked about her biggest fears for her daughter, she spends a long time contemplating the question. "My biggest fear for her is if Joy had to go on oxygen," she says. That's something Joy fears, too, she adds. "She's never had to be on oxygen at home. That would be a really difficult thing for her to deal with." She talks of her hope for a cure for cystic fibrosis in Joy's lifetime. "I have to be hopeful that there will be a cure, and I am. I just pray that it will be in her lifetime. I'm hopeful she will grow to adulthood and that she will fulfill her dream of being a vet."

The playroom is in chaos now. Screaming children, laughing parents, everyone is smiling and pain is a ghost. "They let them be kids," says Tracy Livingston, a 26-year-old studying for her master's in teaching at VCU. She decided to go back to school after volunteering in the child-life department and is now pursuing a master's degree at VCU. She watches Kinney, seated at a child's table with a child in her lap, laughing, having a good time, but with a combination of awe and affection, she is clearly in command of the room. "Even though they're in here having to act like adults, they talk like adults, they know things about their bodies that I don't even know. They [the child-life specialists] comfort them."

Joy's mother says that comfort has been important during Joy's stays in the hospital, even for her.

"It's more than just a playroom. They know these kids when they're here," she says. "They're there for them all the way, it's not just the play aspect of it. These kids need somebody to talk to. I need someone I can talk to. If there was ever anything I needed, I could come to them and ask them about it."

Kinney jokes with Joy. At other times, she is the tough disciplinarian. Especially when it comes to the can of Boost. "Drink it. Be grossed out. Let's move on," she says.

In Joy's room, it is noisy. It is noisy outside the room. Televisions blare. Family members of other patients laugh and talk all around. Carolers are coming next week to roam the halls, singing. Joy doesn't seem to mind.

"We don't encourage quiet, especially on this unit," Kinney explains. "It's not in children's nature to be quiet. Silence is not a place where kids are going to heal."

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