Nathan “Tater” Cooper, 4, dangles his sock-covered feet from the edge of the mattress, leaving his palm-sized Velcro shoes under the hospital bed. His pudgy hands hold one side of a cloth doll that’s almost as big as him. Sharon Green, 30, holds the other.
“Is he real?” Green asks him.
Tater grins: “No, he’s just for pretend!”
The doll’s head is bald, and resembles Tater’s thin, short hair. Green puts a full-sized surgical mask over her nose and mouth, and gives Tater a mask the same size. “That’s too big!” he tells her.
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“Oh, you’re right,” Green says, as she hands him a kiddie-sized mask with multi-colored smiley faces on it. “Now that’s a Tater-sized one.”
The two change the doll’s dressing and go through surgical steps by disinfecting – “keeping the germs away” – the area around where they’ll put a central line. Tater turns the doll’s head when they insert the port because he knows his pretend patient wouldn’t want to see it.
“How do you know so much about this?” Green asks.
Tater sits up straight, raises his eyebrows and excitedly smiles: “I’ve done it six times!”
Earlier this year, Tater was diagnosed with myelodysplastic syndrome, a bone marrow stem cell disorder that results in disorderly blood production and can progress to acute myelogenous leukemia.
As the lead child life specialist in the Pediatric Hematology and Oncology Center at at Levine Children’s Hospital, it’s up to Green to explain each child’s cancer diagnosis and to help them, mentally and emotionally, as they go through their treatments.
For the younger kids, she’ll often use these Legacy Medikins dolls, designed to help kids understand what will happen to them when it’s their time for treatment. When Tater had to have an MRI done, Green was right there, telling him to think of himself as a hotdog inside a bun, the jelly inside of a jelly-filled doughnut.
“She really teaches them a lot without them knowing it,” says Tater’s mom, Christy Cooper, 34. But at Levine Children’s Hospital, they see patients from newborns all the way to 27-year-olds who developed child forms of cancer, so Green has to find ways to relate to each patient. With the teens, Green says she finds creative ways to teach them on their level. Sometimes she’ll ask medical residents to come and do a demonstration. “If the teens are resistant to hearing about it,” Green says, “I ask, ‘Mind if I just show mom?’ ”
Three years of growth
Since it opened its doors in October 2007, Levine Children’s Hospital has been able to steadily take on more patients and offer more medical care options. The Pediatric Hematology and Oncology Center treats patients with leukemia, lymphoma, neuroblastoma, brain tumors, kidney cancer, and other bone and soft tissue tumors. In 2010, the hospital was able to become a site for bone marrow transplants.
Previously, “a lot of people used to drive two and three hours for a bone marrow transplant program,” says Dr. Daniel McMahon, director of the Pediatric Hematology and Oncology division.
That’s what the Coopers had to do in 2007, when Tater’s older brother Nicholas, then 2 years old, was diagnosed with the same cancer Tater developed three years later.
Levine Children’s Hospital didn’t have its bone marrow program when Nicholas was diagnosed, so Christy had to say goodbye to her husband and their home in Dallas, N.C., to move to Durham, so Nicholas could be treated at Duke University Hospital.
Nicholas is now in remission. Their experience at Duke was great, but being away from home those months meant being away from their much-needed support system.
“After a really long, hard day (at the hospital), Christy had no husband to come home to, no church community,” says Green.
This time, when she received the gut-wrenching news that her other son also had cancer, Christy had both.
‘It’s fun to be with you guys’
Christy loves the Levine Children’s Hospital because it’s personable and family-oriented. “They know (the kids),” she says. “They call them by their nicknames. They know what they like, what they want to play.”
Green’s desk is covered in crayon drawings and photos of grinning patients. One teenage girl, who lost her hair due to treatment, dressed for Halloween as Green in her child-life specialist uniform.
On her bulletin board, Green has a hand-written letter from a little girl who was a patient, written in scribbled scrawl and decorated with bright stickers. It reads: “When I grow up, I want to be like you guys. I have fun doing the activities with you. I like all of you guys and I love all of you guys. It’s fun to be with you guys. I want to play with you soon.”
The patients’ letters, pictures, daily smiles and giggles – they all remind Green of why she loves her job and why it’s so important.
Green’s work also takes her out of the hospital. While a child is going through treatment, Green will go to their schools and explain to the students and faculty why the children getting treatment will lose their hair.
They also have sibling support groups for siblings of children being treated, acknowledging the impact on the patient’s brothers and sisters.
But Green’s job can be heart-wrenching, no doubt.
And when all the treatments have been done, when the patients and their families learn there’s nothing else they can do, Green helps them say their goodbyes.
At Levine Children’s Hospital, they call it legacy building. Child life specialists help kids make hand molds or leave messages on voice-recording picture frames. Green has even helped children write their wills.
One young boy with terminal cancer had $112 to his name. Knowing he wouldn’t be alive come spring, he asked that his savings be spent on flowers for his mother on Mothers’ Day. Green placed the order with the florist.
“Yes, it’s hard. Yes, there are days I’m drained,” Green says. “But I get to help with those experiences. How do I do it? It comes down to the rest of the staff. Everyone here (in the hematology and oncology department) is part of this team, and we support each other. I’ve never gone to a funeral by myself.”
‘She’s amazing and wonderful’
Green is quick to reiterate, though, that the public doesn’t realize how many kids do make it, how many success stories they do have. And now children in the community whose cancer comes back have another local opportunity for treatment.
In 2010, Carolinas HealthCare System’s Pediatric Hematology and Oncology Center at Levine Children’s Hospital started offering Phase I and Phase II clinical trials – the first steps in finding new treatments for cancer. These clinical trials are the only ones available in all of western and central North Carolina.
Previously, families devastated to find out their child’s cancer is back often had to travel hundreds of miles to cancer centers in big cities like Memphis, Washington D.C. or New York to find a clinical trial that could work.
Thanks to charitable donations, Carolinas HealthCare System is currently expanding its pediatric cancer program and is on track to diagnose 100 new cases of childhood cancer this year alone. That’s an increase of 24 percent and the highest number in North Carolina, Dr. McMahon says.
But the children’s hospital isn’t a cash cow. The Legacy Medikin dolls came through a grant, and all of the games, crafts and supplies the child life specialists use were donated, Green says.
There are so many ways people can give, Green says. The hospital always needs volunteers. Including Green, there are just two child life specialists in the Pediatric Hematology and Oncology Center, and their positions are funded by the philanthropy. But talk to the families of patients, and you’ll find out just how indispensible – and impactful – those child life specialists are.
Back in the examination room, Green sets up a game of Connect Four with Tater. Not worrying about the rules, they just take turns dropping the colored chips into the slots.
As Christy Cooper talks about what Green has meant to her, to their family and to Tater, her eyes get moist. “We love her. She’s amazing and wonderful,” Christy says. “She brings this whole scary medical world that we adults can’t deal with at all, and makes (the kids) OK with it.”
“They understand you’re just a human being, and you’re going to break down. They help you get through it,” she continues. “I’ve decided that’s what I want to do. It’s an incredible and special job.”