Six-year-old Karsyn Ewbank cried when she had to leave Cook Children's Medical Center after a three-month stay for cancer treatment. She would miss her new best friends, the Oncology Child Life Specialist team, who taught her how to cope with cancer through drawing, sculpting and painting.
You could say Child Life Specialists like Shannon Dier are similar to fairies. She flutters around the hospital granting wishes (within reason). Through toys, music and art, the Child Life Specialists earn the children's trust in the traditionally sterile healthcare environment. Their tireless goal is to heal the child's mind while his or her body fights, in this case, cancer.
It is through the creative expression of art under the direction of Cook's resident creative arts therapist Diana Gibson that children with cancer like Karsyn unexpectedly found healing. Gibson spent time getting to know her and then customized therapeutic art projects for her, even using medical supplies sometimes.
Karsyn was 5 years old when her parents noticed small bruises in strange places and red spots on her shoulders called petechiae, which are bruised or bleeding blood vessels under the skin. Her backpack was always empty because school hadn't started just yet, so her parents knew the straps shouldn't have caused the spots. The day before she started kindergarten, her family went to Cook Children's Medical Center at 8 a.m. for blood work. By 4:30 p.m. that same day, they received the call-Karsyn had Acute Lymphocytic Leukemia (ALL).
That night they packed their bags and checked into their new home at Cook's. She started chemotherapy the next morning. The Ewbanks would spend the next 84 days in a form of exile while Karsyn fought for her life.
Her big blue eyes smile over a mask covering her nose and mouth, made bigger by her slight frame. The stories she shared about her art projects and the pranks she played on the staff reveal a jubilant child, but as her parents shared their story, their eyes turned red, glassy and tired-they were holding back tears.
"It was like Groundhog Day for us," father Brad Ewbank said.
Spontaneous life goes on outside the hospital walls, while inside the Ewbanks saw the same room, the same nurses and doctors, the same IV stand connected to the same outlet in the same wall every day. That is until Gibson walked in with a new art project.
"She is a very sassy little friend…[Karsyn] is very decisive. I just provide her the tools. We end up making these grand art pieces. She is so passionate and direct," Gibson said.
Gibson never has a plan when she walks into the room. She wants the child to take over because Karsyn is left with few choices inside the hospital. She has to take her medicine, get her chemo port changed and say yes every time the nurses take her vitals. So part of Gibson's therapy is giving her what may be her only choice that day, a simple pleasure that's enough to make Karsyn's day.
Cook's Child Life Director, Jill Koss, said their goal is to nurture the emotional, spiritual and developmental side of how kids are coping in the healthcare environment. They want the children to focus on being children and to make their life in the oncology unit as normal as possible.
Which is why the Ewbanks were surprised the first time a Nerf gun projectile shot past their heads when they walked out of Karsyn's hospital room one day, but they smiled. It was just like home where their 9-year-old son, Kade, lived. Children were everywhere drawing, playing musical instruments and games the fairies brought to the fifth floor.
The pediatric oncologist, Dr. Kenneth Heym, does rounds in wigs, tutus and other silly costumes. One time a Child Life Specialist left town, Karsyn and a nurse covered her desk with post-it notes. Hundreds of them. In Dr. Heym's office, there is a picture hanging that Karsyn drew of him. His head is a piece of poop with steam coming off of it. This therapeutic art piece is affectionately titled, "Dr. Poopyface."
Child Life is there every time a child needs his or her weekly chemo port change, a painful and scary process, to swallow liquid medicine that tastes so badly the child vomits, to have a painful spinal tap or to get an IV. They have tools to not only help the child make it through, but also thrive.
"You want your kid to be happy. She woke up happy every day and ready to take on the day," Brad said of his daughter, Karsyn.
Mother Wendy found herself breaking down often, wondering at the possibility of life without Karsyn. Child Life was always there to calm her and get her connected with the right counselor. When Karsyn threw up her asinine medicine, Child Life was there with candies like Nerds to help keep it down. When it was time for her next chemo port change, Karsyn was so upset-it's painful after weeks of the iPhone-sized box tugging underneath the tight skin on her chest. They took her down to their huge Build-A-Bear store on the first floor of Cook's. As she got her port changed, her new bear got a chemo port. He went with her to get his changed every time she did. It was no longer a problem with her fuzzy friend there going through the same thing.
But what really made Karsyn light up was art with Gibson.
Gibson has a bachelor's degree in studio art, second masters in art therapy and is finishing her Ph.D. in art education. Under the children's direction, Gibson prescribes art projects that take children like Karsyn away from cancer.
"They aren't just a cancer patient, they are a kid. They are stuck in the room for weeks at a time. [Art] is a relief from what they're feeling on a daily basis," Gibson said.
Gibson even assigned mom Wendy a task to relieve the torrent of anxiety that flooded her mind when she heard her daughter's diagnosis. It is called Zentangle, which is a meditative art form the calms and uplifts the budding artist. After drawing repetitive patterns, a picture comes to life. The calming art form requires deliberate focus and deliberate strokes. Baby steps.
"We are always making strokes (thoughts, words and deeds) in our life. By…[making] each stroke deliberate, you understand how those apparently small and insignificant strokes of our moment-to-moment lives contribute to an overall life pattern," the Zentangle.com website said.
Wendy hesitated at first. She didn't think she was good at art and doubted she could do it, but then she learned through Zentangle. It was exactly what she needed.
"Something may look complicated, but you now know that you can do it, one simple stroke at a time," Zentangle.com said.
After Wendy and Karsyn started to draw together, they found a calming, common language. Beautiful patterns and pictures emerged. So did hope.
"She was taking all of her anxiety and putting it into her [sketch] book. Everything inside was coming out onto paper," Gibson said.
Down the hall, art therapy takes 10-year-old Grace away from her diagnosis of Ewing's Sarcoma. Dier and Intern Tierney Titus teach her how to weave a bracelet with four pieces of thread. They giggle at Grace's jokes and stories of when she shot saline out of a syringe at Dr. Heym's face earlier that morning.
She wasn't supposed to be in the hospital that day, but had a fever on Friday and rushed to the Cook's ER. She had neutropenia, which means her white blood cell count was zero, so she couldn't fight infection on her own. When she is with the Child Life Specialists at Cook's, all is OK with the world. And that makes her mom, Sarah, happy.
"It is multiple knots over and over again," Tierney instructed Grace.
A bandage covering the chemo port on her chest peeks over her pink pajamas, which are cheerfully covered in cupcakes. Grace grows confident at the new task. A sophisticated bracelet made of yellow, coral, pink and blue comes together. She stays focused, only putting it down when the clock strikes 11. It's time for group art with the others down the hall. At 11:04 a.m., the nurse still isn't finished putting antibiotics in her IV.
"We're late!" Grace said.
Usually she is the only one there, but today there is a nice change of pace. On this day the room fills with another patient's siblings. Today they will put white paper in a bucket, drop dollops of paint and then activity coordinator Trina Burks drops marbles on top. The small marbles roll over the paint haphazardly creating a beautiful painting.
"The cool thing about marble painting is that you never know what the outcome is going to be," Burks said.
Grace is amused.
"Last chemo (in October) I am going to count down and have a party and have all Child Life in here," Grace giggled.
"I don't think the possibility of her dying has ever crossed her mind," her mother later whispered.
Hundreds of pictures wallpaper the room in the Child Life Specialists" office on the fifth floor. Survivors send pictures of their graduation, weddings and children. They never stop saying thank you. A few have even come to be Child Life Specialists as adults.
"We are all more than just our bodies; we have a soul and a personality. You may heal the child, but if emotionally damaged, then what have you done?" Koss said.
When adults hear the word "cancer," a lifetime of horrid associations come flooding into their mind, something children innocently don't have. They think of their aunt's or grandmother's suffering. Or the images of bald patients in the movies and TV shows. It's terrifying. Then their children get the diagnosis and anxiety takes the wheel.
