it's about children - issue 3, 2016 by east tennessee children's hospital

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Safe Sitter class for children ages 11 to 14

Extra Life

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NOV9 a.m. to 3 p.m.Children’s Hospital’s Koppel Plaza BuildingClass costs $25.Visit www.etch.com/healthykids to register. Learn correct babysitting techniques, emergency responses and how to use babysitting as a business.

Starts at 8 a.m.Your computer

Mark Your Calendar

2 It’s About Children, Issue 3 • 2016

Extra Life is a 24-hour gaming marathon in support of Children’s Miracle Network Hospitals. You can join a team or play individually, and if you select to support East Tennessee Children’s Hospital when registering, all funds raised will help patients through equipment purchases, training and additional care. You can play on Nov. 5 or schedule another day that works for you. To register, donate, sponsor a player or to fi nd out more, visit www.extra-life.org or email Children’s Hospital CMNH Program Director Ellen Cole at [email protected].

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18 Genetics launches at Children’s Hospital

Caring for Mia

Fantasy of Trees

Family of Champions

East Tennessee Children’s Hospital opened its Genetics Center, a new service off ered to patients in the region, and welcomed pediatric genetics specialist Austin Hamm., M.D., to the Children’s Hospital team.

Th rough the care of the East Tennessee Children’s Hospital Cleft and Craniofacial Clinic, Mia’s Berkley’s cleft lip and palate is being repaired.

Join us for the 32nd-annual Fantasy of Trees. Th is year’s event benefi ts East Tennessee Children’s Hospital’s Pediatric Anesthesia Department.

AJ Cucksey was named the Children’s Miracle Network Hospitals (CMNH) Champion for the state of Tennessee. He and his family will spend the year sharing his journey with brain tumors and how East Tennessee Children’s Hospital, a CMNH affi liate, has helped him.

It’s About Children is a publication of the Marketing Department at

East Tennessee Children’s Hospital.Editor: Jessica Boyd

Designer: Deborah HostermanCover photo by Michael Dayah

Connect with us:www.etch.com/ItsAboutChildren

[email protected]

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CPR class for parents and teens age 14 and older

Safe Sitter class for children ages 11 to 14

Extra Life

MEDIC blood drive

Car seat inspections

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6 to 10 p.m.Children’s Hospital’s Koppel Plaza BuildingClass costs $25.Visit www.etch.com/healthykids to register. Learn CPR so you can respond to emergencies in your home.

Starts at 8 a.m.Your computer

10 a.m. to 1 p.m.Knoxville Police Department, 917 East Fifth Ave., KnoxvilleIt’s free.You don’t have to register to attend. We’ll teach you everything you need to know to make sure your car seat is used and installed correctly. For information on other car seat inspections in the region, visit www.sittingsafer.com.

3Donate at www.etch.com/giving

7 a.m. to 4 p.m.Children’s Hospital’s Koppel Plaza BuildingIt’s free.Call 865-541-8165 for more information. All blood used at Children’s Hospital is provided through MEDIC. One donation can help up to three people. Donors must be at least 17 years old, weigh more than 110 pounds and have an ID.


Story by Cassidy Duckett Britt

Family ofChampions

Despite being only 6 years old, AJ Cucksey has already met senators, seen his beloved New York Mets play and chatted with Miss America. He’s even performed “Rocky Top”

for Peyton Manning and befriended his favorite University of Tennessee football

player, quarterback Joshua Dobbs.

In May, the Farragut Primary School student was selected as the Children’s Miracle

Network Hospitals (CMNH) Champion for the state of Tennessee. During his year-long

ambassadorship, he and his family will share their story of how East Tennessee Children’s

Hospital, a CMNH affiliate, helped them.

continued on page 6

AJ with his sister, 4-year-old Gia.

also struggling with nausea, which they thought could be a virus. AJ began demonstrating behavioral changes and struggled to sleep through the night, something the Cuckseys had discussed with their pediatrician. “I knew there was something going on with my child,” Shannon said. “I never thought it was something like a brain tumor. That never crossed my mind.” It was. An MRI showed that AJ had seven brain tumors. He was moved from the Children’s Hospital Emergency Department to a room in the Pediatric Intensive Care Unit (PICU) where he waited for surgery with Children’s Hospital pediatric neurosurgeon J. Gentry Savage, M.D. Because of the location, the tumors could not be surgically removed. One was next to the brain stem, another next to the pituitary gland and another next to

“We are so eager to help,” AJ’s mother, Shannon, said. “We want to talk about Children’s Hospital and the great things they have done for us and our friends. By being treated there, we were able to keep our support system at home.” The Cucksey family’s relationship with Children’s Hospital began in fall 2014. During a trip to Disney World, Shannon noticed AJ’s gait had changed; he couldn’t even wrap his legs around his dad, John, when he was picked up. Shannon and John were concerned. The Cuckseys cut their vacation short and rushed back to Knoxville, where they headed to Children’s Hospital before even going home. Prior to their trip, the 4 year old was having vision issues, so the Cuckseys had set up an appointment with a pediatric ophthalmologist when they returned. He was

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AJ with his sister, 4-year-old Gia.


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According to the National Cancer Institute, 40 to 50 children out of one million in the United States

are diagnosed with a brain tumor annually. Low-grade glioma makes up almost half of all brain tumors in children. Only 2 to 5 percent

have more than one tumor at the time of diagnosis, like AJ did.


Learn more about Children’s Miracle Network Hospitals and the thousands of

children helped every year at www.cmn.org.

From left, Gia, Shannon, John and AJ Cucksey.

the optical nerve. During the surgery, Dr. Savage took a biopsy to determine what was causing the tumor growth and placed a ventriculoperitoneal shunt to allow for the fl ow of fl uid that had built up in AJ’s brain because of the tumors. After a week in the PICU, AJ went home. It was Halloween, and he could barely walk more than 10 feet at a time. He decorated his wheelchair with spiderwebs in honor of his intended costume, Spiderman. Shannon and John received the diagnosis quickly: it was a non-malignant tumor referred to as pilocytic astrocytoma, a type of low-grade glioma, meaning the tumors could grow slowly larger but not spread to other parts of the body. AJ would need to start chemotherapy immediately. The Cuckseys were referred to pediatric oncologist Susan Spiller, M.D., at Children’s Hospital. Dr. Spiller explained, “traditional chemotherapy is designed to kill

everything that is growing, but low-grade glioma grows so slowly, it can be hard to treat.” The day before his port was implanted, AJ’s left side started to droop. Dr. Spiller said, “his left leg was completely stiff, and his left arm was drawn up.” The movement of his arms and legs on this side was visibly slower, all due to neurological issues with the tumors in his brain. Shannon said, “that was really the fi rst time we saw how unpredictable and how powerful these tumors can be.” Weekly for about a year, the Cuckseys brought AJ to Children’s Hospital for chemotherapy treatments. While he was severely fatigued at times, AJ was able to continue to enjoy the company of his family and friends in his hometown. “We were able to keep our jobs and able to keep going to church,” Shannon said. “[AJ’s sister] Gia could be with him and he could see his grandparents and aunts. All of those things are so important.”

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AJ with pediatric oncologist Susan Spiller, M.D.,at his off-chemo party.

From left, Gia, Shannon, John and AJ Cucksey.

In addition to their local support system, the Cuckeys developed a family in the Children’s Hospital Hematology/ Oncology Clinic. “You build this sense of community there—whether it’s the employees, volunteers or other patients,” Shannon said. “As parents, to have people who put their eyes on your child every week, it was security. AJ could be himself.” In November 2015, AJ had his final chemotherapy treatment. His tumors have shrunk or remained the same size. Every three months, he returns to the hospital for an MRI to check the state of the tumors. “There is not a day that goes by that I don’t have to explain that my child has brain tumors,” Shannon said. “It’s one of those things that AJ will live with forever. We just don’t know what impact it could have on him.” AJ is aware his eyesight is affected, and he understands he has tumors, but this does not keep him from living as normally as he possibly can. “He’s back to running and playing,” Dr. Spiller said. “It’s a dramatic improvement from when he first started treatment. Now, I see nothing wrong with him in his physical exams except his vision,” Dr. Spiller said.

Visit www.etch.com/itsaboutchildren to see AJ singing his favorite song, “Rocky Top.”

Dr. Spiller does not expect AJ to have any long-term effects from his chemotherapy treatment, and the Cuckseys are comforted knowing Dr. Spiller is still monitoring their son. “She understands that it’s more than just a medical condition,” Shannon said. “I can talk to her very openly and very honestly not only as a pediatric oncologist who knows a lot about brain tumors and my son’s condition but also as a mother who knows what she would need to take care of her own child.” “She doesn’t talk at me,” Shannon said. “She’s with me. She shows real empathy for the position I’m in.” As a Champion, AJ will participate in advertising campaigns for CMNH in an effort to raise awareness and funds for the network, which provides donations to local children’s hospitals around the country. These donations directly helped Children’s Hospital purchase the CT scanner used to detect AJ’s tumors, as well as a medical stroller he used. “We want to do this forever,” Shannon said. “We are able to talk really genuinely about how great Children’s Hospital is. As a parent, you can rely on it. They make it about taking care of the whole family.”

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AJ with some of the Children’s Hospital Hematology/Oncology staff.

It’s About Children, Issue 3 • 2016


September is Childhood Cancer Awareness Month. In the United States, more than 15,000 children are diagnosed with cancer every year, and the most common childhood cancers are leukemia and brain tumors. Last year at Children’s Hospital, 47 children were diagnosed with a form of cancer, and currently, there are more than 200 patients in follow-up treatment. From pediatric oncologists, oncology nurses, Child Life specialists and other clinical staff members, the experts in the Children’s Hospital Pediatric Hematology/Oncology Department help care for patients and families during a diffi cult time in their lives. For more information, visit www.etch.com/practices. To support the Hematology/Oncology Clinic, visit www.etch.com/giving.

AJ was named Children’s Miracle NetworkHospitals Champion for the State of Tennessee.

At the announcement, AJ was joined by Children’s Hospital staff and Miss Knoxville, representing the Miss America organization, a CMNH partner. From left are Children’s Hospital nurse manager

Diana Burdick, Children’s Hospital oncology nurse Karen Johnson, Shannon Cucksey, AJ, John Cucksey, Miss Knoxville Brianna Mason and Children’s Hospital President and CEO Keith Goodwin.

Diana Burdick, Children’s Hospital oncology nurse Karen Johnson, Shannon Cucksey, AJ, John Cucksey,

Three-year-old Mia Berkley’s smile lights up a room. Her laugh is infectious, and her energy is contagious. She is caring,

nurturing and social, and she looks up to her older brothers, Eli, 10, and Truett, 5. “She’s very playful, smart, sweet and helpful,”

her mother Betsy said. “She’s always mothering, too. She always has a stuffed animal or a doll wrapped in a blanket.” Mia also

loves to play outside, paint and color.

Caring for Mia


A little more than two years ago, life for Mia looked quite different. She was born with a cleft lip and palate, and in December 2014, she was adopted from an orphanage in China by a loving family in Knoxville. Betsy and her husband Darin began the adoption process in 2012. The Berkleys explored a few different options before they felt they should adopt from China, eventually learning about a little girl with an unrepaired cleft lip and palate in an orphanage there. “When the adoption agency sent us her picture, we fell in love with Mia,” Betsy said. Cleft lip and palate is a common birth defect that occurs when a baby is born with an opening in the lip and the roof of the mouth. A cleft lip may be a small opening on the edge of the lip or can extend into the nose or gums. A cleft palate can extend from a small portion to a large majority of the palate inside the mouth. A child with a cleft deformity may be born

From left, Mia, Betsy, Truett, Darin and Eli Berkley.

with either the lip or palate affected or both. In Mia’s case, the left side of her lip was affected and the top of her mouth was almost completely open. Because of her condition, the Berkleys brought Mia to East Tennessee Children’s Hospital’s Cleft and Craniofacial Clinic for treatment with pediatric otolaryngologist and reconstructive surgeon Mark Ray, M.D., who specializes in cleft lip and palate, along with the interdisciplinary team there. A cleft lip and palate can cause abnormal facial appearance, but it can also cause other issues. Dr. Ray explained the potential complications. “Cleft lip and palate can cause some orthodontic issues,” he said. “The teeth don’t come in straight. Cleft can also cause major speech issues.” Other possible complications include hearing and feeding problems as well as psychological issues children can face interacting with their peers.

The Children’s Hospital Cleft and Craniofacial Clinic is made up of pediatric otolaryngologists, audiologists,

dentists, geneticists, nutritionists, oral surgeons, orthodontists, social workers and speech language pathologists. The clinic

currently treats more than 200 patients in the East Tennessee region. The team is approved by the American Cleft Palate-

Craniofacial Association and Cleft Palate Foundation and is the only approved cleft palate team in Tennessee.

Mia prior to her surgeries.


From left, Mia, Betsy, Truett, Darin and Eli Berkley.

Dr. Ray completed two surgeries to repair her cleft lip and palate. In February 2015, he repaired Mia’s lip. Three months later, he repaired her palate, completely closing it. The Berkleys are thrilled with Mia’s progress so far. “She wasn’t on the growth chart when we got her,” Betsy said. The conditions at the orphanage plus Mia’s cleft lip and palate made it difficult for her to eat, but with a well-balanced diet and the surgical repair of her lip and palate, she began registering at 95th percentile. Mia’s speech is significantly affected by the cleft lip and palate, so her next step is speech therapy. “Recently, it’s been a language explosion,” Betsy said. Close family and friends can understand a lot of what she says, but Mia has struggled with hard “c” and “k” sounds. In August, she started weekly speech therapy at Children’s Hospital’s Rehabilitation Center.

15Donate at www.etch.com/giving Photo credit: Shain Rievley at Bloom Photography

Mia’s journey for cleft lip and palate repair is not fi nished. She currently goes to the clinic periodically for check ups with otolaryngology, audiology and the other specialists there. Next spring, Dr. Ray will repair her nose. In a few years, Mia will most likely need a bone graph in her mouth to help her adult teeth grow in properly. Some cleft patients require another surgery in their mid-teenage years as the condition can affect the growth of the middle of the face, something Dr. Ray will be able to help with if necessary. The Berkleys are thankful that Mia has been followed by the same pediatric specialists throughout the journey to repair her cleft lip and palate. “Dr. Ray is very straightforward and we can talk to him easily,” Betsy said. “It’s been great – I can’t say enough about the staff and the surgery center.” For now, Mia is focused on keeping up with her older brothers. “Right now, her brothers play baseball, so she’s learning to swing a bat,” Betsy said. But she still fi nds time to be a girl. “She loves to have her toes painted, she loves princesses and she loves Minnie Mouse.”

Mia and her brothers.

Mia with pediatric otolaryngologist and reconstructive surgeon Mark Ray, M.D.

Photo credit: Shain Rievley at Bloom Photography16 It’s About Children, Issue 3 • 2016

Pediatric surgery atChildren’s Hospital

Children’s Hospital’s Scripps Networks Tower surgery waiting area rendering.

Surgical procedures can cause anxiety, and at East Tennessee Children’s Hospital, we want to ease that anxiety when your child requires surgery. From the more common tonsillectomies to the most complicated facial reconstructions, the pediatric surgeons, anesthesiologists and surgical staff at Children’s Hospital are expertly trained to provide the best care for your child. This fall, Children’s Hospital will open the Scripps Networks Tower, which will house a new inpatient/

outpatient surgery center as well as a new neonatal intensive care unit, a rooftop garden and two levels of parking. The new surgery center will feature state-of-the-art operating rooms and new technology as well as provide easier access for surgery patients and their families. When the new surgery center opens, patient families will be able to park in the new building and take an elevator straight up to the surgery waiting area.

For more information on pediatric surgery at Children’s Hospital, please visit

www.etch.com/surgery. For more information on the Scripps Networks Tower, please visit

www.etch.com/expansion.



Genetics launches atChildren’s Hospital

In August, East Tennessee Children’s Hospital opened its Genetics Center, a new service off ered to patients in the region. “Th ough our genes shape many aspects of our personal features, clinical geneticists focus on those genetic variations that have medical consequence,” pediatric genetics specialist Austin Hamm, M.D., explained. Clinical genetics specialists are physicians specializing in the identifi cation and treatment of medical conditions with a genetic cause. “We see patients for a variety of indications, including birth defects, developmental problems, diseases that run in families and inborn disorders of metabolism.” Dr. Hamm joined Children’s Hospital aft er completing a fellowship and residency in genetics at the University of Alabama at Birmingham. He is a graduate of the University of Tennessee Health Science Center and completed his pediatric residency at the University of Tennessee Graduate School of Medicine at Chattanooga. He is board certifi ed by the American Board of Medical Genetics & Genomics as well as the American Board of Pediatrics. “Genetics is a rapidly changing fi eld,” Dr. Hamm said. “Th ere are lots of technological advances that will continue to make genetics an exciting fi eld of medicine.” Dr. Hamm is originally from Ramer, Tenn. He and his wife, pediatric oncologist Jennifer Hamm, M.D., who will join Children’s Hospital’s Hematology/Oncology Department this fall, have two children, Lucas, 7, and Adrienne, 1.

News

Your child may visit the Genetics Center if: • There is a family history of a genetic condition.

• His or her newborn screening test recommended follow up.• He or she has certain symptoms or traits.

• His or her growth or development is concerning.


Summer fun Every summer, East Tennessee Children’s Hospital hosts its annual summer camps. Camp Cure, geared toward endocrinology patients, and Donald M. Gally Camp, geared toward Rehabilitation Center patients, are both held at Kiwanis Fresh Air Camp while Camp Eagle’s Nest, a camp for hematology and oncology patients, is held at Camp Wesley Woods. This summer, more than 150 patients attended Children’s Hospital camps. The camps offer Children’s Hospital patients a

week of summer fun that many patients may not get to experience otherwise, filled with crafts, swimming and other activities. Physicians, nurses and other clinical staff members as well as Children’s Hospital volunteers staff the camps, help with all the activities and ensure patients receive their necessary treatments and medications. Children’s Hospital camps are funded by community donations. If you’re interested in supporting these camps, visit www.etch.com/giving.

Campers at Camp Eagle’s Nest.

Donald M. Gally Camp had a visit from Shangri-La Therapeutic Academy of Riding (STAR).

Camp Cure campers worked on arts and crafts.


Major sponsors: Presenting sponsor:

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Every year, thousands of visitors kick off the holiday season by enjoying on-stage performances, shopping for gift s, purchasing ornately-decorated Christmas trees and participating in children’s activities like face-painting, cooking-decorating and ornament-making. Th is year, Fantasy of Trees proceeds will purchase much-needed equipment for the Pediatric Anesthesia Department.

East Tennessee Children’s Hospital presents the 32nd-annual Fantasy of Trees premier Christmas event in Knoxville. Fantasy of

Trees is Nov. 23–27 at the Knoxville Convention Center, and this year’s theme is

‘Twas the Night Before Christmas.

Media sponsors:

Preview PartyTuesday, Nov. 22: 7 – 10 p.m.(Separate ticket required, $75 per person)

Daily Show TimesWednesday, Nov. 23: 9 a.m. – 9 p.m.Thursday, Nov. 24: 3 – 8 p.m. (Thanksgiving Day)Friday, Nov. 25: 9 a.m. – 9 p.m.Saturday, Nov. 26: 9 a.m. – 9 p.m.Sunday, Nov. 27: Noon – 6 p.m.

General Admission TicketsVisitors can purchase tickets for the following prices:Adults: $8 • Children Ages 4 to 12: $4Children 3 and under: FREEFantasy 4-pack: $20 (online only)

For directions, parking and more information, visit www.fantasyoftrees.org. Tickets may be purchased online or at the door. Follow us on Twitter @FantasyofTrees.

Your Dollars at Work

Charitable pottery

Ellie Kotsianas loves to be creative and work with her hands. “I loved art as a kid,” she said. “I loved drawing, sidewalk chalk and Play-Doh.” Kotsianas’ love for art led her to minor in art at East Tennessee State University. “Th at’s where I fell in love with ceramics,” she said. Aft er college, Kotsianas started Bug Pottery with East Tennessee Children’s Hospital in mind. “I owe my life to Children’s Hospital,” she said. “Anyway that I could give back, I wanted to.” Her custom-order ceramics are inspired by nature, and most of her designs feature a tiny lady bug somewhere on the piece. Portions of proceeds from sales of the pottery benefi t Children’s Hospital. She credits Children’s Hospital for being the reason she could continue her passion for art. When she was 12 years old, Kotsianas contracted a staph infection. Starting with pain in the hips fi rst, it gradually worsened. By the time she was rushed to the Children’s Hospital Emergency Department, her body was becoming septic. “Th e infection had spread through my entire body,” she explained. Children’s Hospital specialists in the Pediatric Intensive Care Unit (PICU) put Kotsianas in a medically-induced coma for her body to heal. Aft er three weeks, she came out of the coma, spending two weeks in recovery.

Ellie Kotsianas working on her ceramics.

Ellie’s work.

Since her recovery, she has had no more issues due to the infection. She did suff er from chronic hip pain and had total hip replacement in 2014. Since healing from the infection 14 years ago, Kotsianas has given back to Children’s Hospital, just as she said she would. From volunteering at the annual Fantasy of Trees event in high school to interning in the Development Offi ce in college, she has served the hospital as much as she can. Now, she’s given about $1,000 to Children’s Hospital through her pottery proceeds. If you’re interested in learning more about Bug Pottery, visit Kotsianas’ Facebook page at www.facebook.com/bugpottery or her website at www.bugpottery.net.


Peyton putts with a team at the golf tournament.

Peyton visits with Children’s Hospital Ambassador families.

The final round

A beloved former University of Tennessee quarterback came back to Knoxville for one more golf tournament. Recently retired NFL Denver Bronco and former Volunteer Peyton Manning announced at the 19th-annual Peyton Manning Golf Classic to benefit Children’s Hospital that this year would be his last tournament. The golf tournament raised more than $222,000, which will purchase much-needed equipment in outpatient surgery. Throughout the day at Fox Den Country Club, the 260 golfers enjoyed breakfast, lunch and a reception. Manning visited with golfers and Children’s Hospital patients who serve as ambassadors who attended the tournament.

Major sponsors:• United Networks of America• Cellular Sales• Delta Dental• Knoxville News Sentinel• Republic Plastics, Ltd.


Nothing puts a smile on aNothing puts a smile on a child’s face quicker than getting a gift— child’s face quicker than getting a gift

2018 Clinch Ave. • P.O. Box 15010Knoxville, Tennessee 37901-5010RETURN SERVICE REQUESTED

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Ribbon cutting Oct. 30, 2 p.m.

• Neonatal Intensive Care Unit with 44 private rooms and rooftop garden

• Inpatient/outpatient surgery center

• Light-filled pedestrian walkways

• Diabetes/Endocrinology Center

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it's about children - issue 3, 2016 by east tennessee children's hospital

Health & Medicine