Guardians Fall 2017 by St. Louis Children's Hospital

Guardians Fall 2017

Stories of Care, Discovery and Outreach from St. Louis Children’s Hospital

featured Guardian of Childhood

Bradley Schlaggar see page MD, PhD

Doing What’s Right for Kids!

Bella’s battle: Waged with the power of Siteman Kids

Meet Veyda, the victorious

Raising St. Louis. Raising confidence. Raising healthy kids.

Stories of Care, Discovery and Outreach from St. Louis Children’s Hospital

ABOUT THE COVER :

Dr. Bradley Schlaggar and son Simeon

4 THE BEST CARE FOR OUR KIDS

Bella’s battle: Waged with the full power of Siteman Kids

6 BIG ADVANCES FOR OUR SMALL PATIENTS

Meet Veyda, the victorious

8 OUT OF THE HOSPITAL, INTO OUR NEIGHBORHOODS

Raising St. Louis. Raising confidence. Raising healthy kids.

10 LETTING KIDS BE KIDS

Child Life Services: Guardians of uninterrupted childhoods

12 FEATURED GUARDIAN OF CHILDHOOD : DR. BRADLEY SCHLAGGAR

Note from Chase Koffer

Long-time patient of St. Louis Children’s Hospital Hey, I’m Chase, pictured here with one of the coolest Children’s Hospital caregivers ever, Christy Merrell. She is the music therapist—you can read more about her and her program on page 10! Music therapy is one of the programs you support with your donations, which is also very cool. I took up guitar to strengthen my hands. And when Christy found out I played, she started jamming with me. As you can see, my hands need therapy. That’s because I have a rare disease that falls into the category of primary immune deficiency. At first, doctors didn’t know what was causing my limbs and joints to stiffen, or why I kept getting infections. But then Dr. Megan Cooper, another very cool person at the hospital, sequenced my genes and found a rare gene mutation. Once she learns how the mutation in this gene changes the immune system, she will then be able to test drugs that will help me. Because of some awesome donors, doctors and researchers here are looking for new ways to treat all sorts of stuff that bring kids to the hospital. Like me, these kids make the best of the situation and have faith that their doctors are going to one day find the answers. Meanwhile, I come here three times a week for kidney dialysis. I don’t mind. It gives me a chance to see everybody. Thanks to all of you out there for making donations this year to support the extra-amazing things about St. Louis Children’s Hospital, like Child Life Services and research. And if you haven’t made a gift, now’s your chance! Join the awesome group of Guardians of Childhood by giving today: Donate at StLouisChildrens.org/JoinUs or drop a check in the handy envelope included in this magazine! Thanks again for your support of kids like me,

One pediatric neurologist’s most important title: Dad

14 BUZZWORTHY

News from St. Louis Children’s Hospital A Gift for You

That’s me, jamming with Christy. She’s the best!

How to Help Kids this Holiday Season It’s the 2017 season of giving! You can do what’s right for kids during the holidays by supporting St. Louis Children’s Hospital with a tax-deductible gift, or through one of these special efforts or promotions!

Make a donation of any amount at StLouisChildrens.org/JoinUs. In lieu of holiday gifts, visit FundraiseForKids.org to create a personalized fundraising page for St. Louis Children’s Hospital, and ask family and friends to support your effort.

Donate an old vehicle or purchase your license plates through our Children’s Trust Fund License Plate program. Visit StLouisChildrens.org/CarDonations or StLouisChildrens.org/LicensePlates for more information.

HOLIDAY RETAIL PROMOTIONS

Firetruck O’Toys

AmazonSmile

Created by a former hospital patient, Mackenzie Scott, this event asks the public to purchase and deliver new, unwrapped toys at participating businesses to be donated to area children’s hospitals before the holidays. Participating drop-off locations are included at firetruckotoys.org/ locations.

Shopping for your gifts online this year? Go to smile.amazon.com and select St. Louis Children’s Hospital Foundation to receive donations from eligible purchases before you begin shopping. Amazon then remembers your selection, and every eligible purchase you make at smile.amazon.com will result in a donation of 0.5% of the purchase price to the hospital—it really adds up!

PetSmart Luv-a-Pet Holiday Collection

Holiday Cards

Spend an extra $5 at check-out at participating PetSmart locations in the St. Louis metropolitan area to buy Lucky (stuffed dog) or Chance (stuffed cat) to donate to patients at St. Louis Children’s Hospital.

Good Cause Greetings is once again teaming up with St. Louis Children’s Hospital to provide beautiful holiday cards for sale to support our mission. Personalized cards feature a verse and signature of your choice. Visit goodcausegreetings. com/slch.asp to view cards. 20% of all sales will benefit St. Louis Children’s Hospital.

St. Louis Children’s Hospital is grateful for all the generous gift donations we receive throughout the year, but during the holidays, these items go fast! Please visit StLouisChildrens.org/WishList to learn about our greatest needs and any restrictions to keep in mind when gifting items. For questions about gift donations, please contact 314.215.7192 or SLCHdonations@bjc.org.

A publication of St. Louis Children’s Hospital

the best care for our kids

Bella’s battle: Waged with the full power of Siteman Kids Bella and her mom, Orshi

Bella Simmons’ 10th birthday earlier this year was a significant one because it meant stepping into her “tween years” cancerfree, a hard-fought battle waged and won by a tiny but tough little girl.

Guardians Magazine Fall 2017

hen Bella was 4 years old, doctors diagnosed a lump found near her right ear as rhabdomyosarcoma (RMS)— a disease in which malignant cancer cells form in muscle tissue. At the time, the family lived at Fort Campbell in Tennessee, where Bella’s dad, Dexter, a captain in the United States Army, was stationed. Her pediatrician sent her to Vanderbilt University. They carried the load of Bella’s treatment which involved intensive chemotherapy and later, proton beam therapy at MD Anderson Cancer Center in Houston. Just 11 months after that treatment was deemed successful, Bella’s tumor returned with a vengeance. By that time, the family lived at Fort Leonard Wood, Mo., approximately 135 miles southwest of St. Louis. Bella’s mom, Orshi, received a call from Bella’s primary physician at Vanderbilt who referred the family to Siteman Kids at St. Louis Children’s Hospital and pediatric oncologist Frederick S. Huang, MD.

Bella at 5 years

Dr. Huang continues to be by Bella’s side.

It didn’t take any time for Dr. Huang to demonstrate his knowledge and his passion. We became friends with him and all the staff at Children’s Hospital. They are our family now.

Orshi Simmons, Bella’s mom

“The team at Vanderbilt had been so compassionate and wonderful to us, I thought I was going to have a hard time trusting ‘the new guy’,” Orshi says. “But it didn’t take any time for Dr. Huang to demonstrate his knowledge and his passion. We became friends with him and all the staff at Children’s Hospital. They are our family now.” According to Dr. Huang, there was something different enough about Bella’s tumor that led him to believe it might respond to some unconventional measures. He shared the scans with pediatric head and neck surgeon Dr. David Leonard, MBBCh, who thought, if they could shrink the tumor, he could surgically remove it, something usually deemed too risky given its location. “We had that conversation with the family, and they were all in to try some things that had not been tried on a child,” Dr. Huang says. Dr. Huang assembled a team that included both pediatric and adult radiation oncologists, neurosurgeons, ear, nose and throat specialists, and plastic surgeons from Washington University’s Siteman Cancer Center. “Pediatric cancers are rare, so naturally, specialists who treat adult cancer patients

have much more experience at conducting the type of surgery we were interested in pursuing,” he says. “The broad and deep underpinnings of Siteman Cancer Center enabled the mobilization of expertise we needed to treat Bella’s cancer once and for all.” Under Dr. Huang’s watch, Bella resumed aggressive chemotherapy and proton beam therapy, a treatment that became available to Siteman Cancer Center patients in 2014. The campaign left her feeling constantly sick. During that time, Orshi was diagnosed with breast cancer. She elected to have a double mastectomy so she could focus on Bella. The results of their efforts made it all worth it. At age 7, Bella entered an operating room filled with a cast of pediatric and adult surgical specialists ready to perform a 12-hour surgery on her head and neck, a complex region of the body. Bella sailed through the surgery and was discharged from the hospital just a few days later. Even better news: at three years out, Bella’s scans are as clean as those of any healthy 10-year-old girl poised to take on the world.

A publication of St. Louis Children’s Hospital

big advances for our small patients

Meet Veyda, the victorious

She’s a 6-year-old fighter who makes going up against short bowel syndrome look like child’s play. Veyda was born with gastroschisis, a birth defect of the abdominal wall that caused a small hole beside her belly button through which her intestines protruded. In the process, they became twisted, cutting off blood flow and causing them to die. Veyda went through multiple surgeries to remove large portions of her intestines in her first year of life. As a result, she suffers from short bowel syndrome, a condition that makes her intestines unable to absorb necessary nutrients and fluids. She must be fed through a tube because she is prone to lifethreatening infection. “We’ve been on antibiotics for years trying to get rid of the bad bacteria in her gut,” says Veyda’s mom Elise.

Guardians Magazine Fall 2017

fter years of being under siege, Veyda’s intestines had become dilated, causing chronic diarrhea and a painfully distended tummy. “Earlier this year, we realized that we had to do something,” Elise says. “She just didn’t want to live like that anymore. She wants to be a normal kid who goes to school, plays with her friends, enjoys a sleepover.” Fortunately, Veyda qualified for a bowellengthening procedure that pediatric surgeon Dr. Brad Warner, the Jessie L. Ternberg MD, PhD, Distinguished Professor of Pediatric Surgery and the Children’s Hospital surgeonof-chief, has in his repertoire of solutions to restore the intestines of children with short bowel syndrome. “Dr. Warner is amazing. We feel so lucky to have him in our corner,” Elise says. “In fact, we’re grateful for everything Children’s Hospital has done for us. It’s our second home.” That said, Elise and her husband, Adam, are rooting for the researchers working to make short bowel syndrome a thing of the past. To that end, Kristin Seiler, MD, chose to pursue a surgical fellowship at the School of Medicine because of the strength of its resources and interest in short bowel syndrome. She is a pediatric surgeon who works in Dr. Warner’s lab to explore small intestine regeneration. Her research seeks to understand the multi-level cellular interactions needed to grow the human epithelium that lines the intestine. That knowledge could advance approaches for organ regeneration. “My organ of interest has always been the small intestine, so when I was in medical school I did research on small intestine regeneration and was very interested in Dr. Warner’s work,” Dr. Seilers says. With her Children’s Discovery Institute funding, Dr. Seilers will line living small intestine cells on a microchip and watch how they grow and develop the protective wrap that keeps toxins out and lets nutrients in the small intestine. “If we can understand what the trigger is to make the gut grow and do more than it does, then maybe we could someday restore a child’s intestinal health and its ability to absorb nutrients.”

She just didn’t want to live like that anymore. She wants to be a normal kid who goes to school, plays with her friends, enjoys a sleepover.” Elise, Veyda’s mom

Veyda, ready for the first grade

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out of the hospital. into our neighborhoods.

Shameka Shelby was 17 when her first child, Byron, was born. She finished high school and went through college as a mommy. As her son grew, he often surprised Shameka. She didn’t understand how her baby went from one milestone to the next. She had questions like, “Was that normal” and “Should I be doing something I’m not doing or should I stop doing something I’m doing?”

Raising St. Louis. Raising confidence. Raising healthy kids.

Shameka had questions. Raising St. Louis had answers.

Guardians Magazine Fall 2017

Raising St. Louis fills in the gaps you don’t even know are there until someone tells you about them. It can help you feel more confident as a parent. Shameka Shelby

ust before Shameka welcomed her second child, Stephon Jr., into the world, there came another surprise. She learned there was a resource available to answer those questions and help her in making sure her baby could reach his full potential. Raising St. Louis, through a variety of community partnerships and donor support, offers assistance throughout pregnancy and early childhood. The program, run by the St. Louis Children’s Hospital Child Health Advocacy and Outreach department, connects families to agencies such as Affinia Healthcare, Family Care Health Centers, Nurses for Newborns and Fathers’ Support Center of St. Louis. Once introduced to Raising St. Louis, Shameka realized the program helped new parents gain a deeper understanding of their child’s development and encouraged activities that help babies reach their milestones. These were lessons she learned in her early education studies in college, but certainly not when she had her first baby. “I knew that the first time around I didn’t know certain things that I now appreciate knowing,” she says. “Raising St. Louis fills in the gaps you don’t even know are there until someone tells you about them. It can help you feel more confident as a parent.” Shameka was so impressed with the program that she decided to apply to be a parent educator. Now she calls on young moms raising a child for the first time, many of whom are teenagers, just like she was. “I call them my babies. And at every visit, I encourage them to read every pamphlet and practice every activity created to give their baby a good start. Along the way, Shameka helps them understand the importance of those activities. “Once they realize why the seemingly simple actions are so helpful, they stick with them,” she says.

Dads bond with their children at a Family Connections meeting sponsored by Raising St. Louis.

A publication of St. Louis Children’s Hospital

letting kids be kids

Child Life Services: Guardians of uninterrupted childhoods

As Guardians of Childhood, the caregivers at St. Louis Children’s Hospital know that protecting a child’s right to be a kid requires more than just exceptional medical care. It requires going above and beyond to ensure each patient and family feels supported and informed throughout their journey. It requires coping strategies and techniques on handling fear, anxiety and separation. It requires laughter, music, art and play. It requires Child Life Services.

Olson Family Garden 10

Guardians Magazine Fall 2017

Music Therapy

ade up of pediatric health care professionals, the Child Services Life team offers special family-centered programs that help make the patient and family experience as positive as it can be, no matter their reason for hospitalization. Distractions provided by red-nosed Clown Docs with floppy shoes, creative expressions encouraged by music and art therapists, and an on-site classroom complete with teachers are just some of the donor-funded programs that elevate Children’s Hospital to its world-class status. Music therapist Christy Merrell loves to see the impact music has on a child’s recovery. She says, “It’s a creative outlet that gives voice to a child’s unique experience at the hospital.” In fact, former St. Louis Children’s Hospital patient Abigail Mazzola started singing before talking after having a mass removed from her brain. “You could just see in her eyes, she was excited to be around Christy,” says Abigail’s mom, Erin. “It wasn’t work to her, it was fun. And then the words just came out.”

PetSmart Paws for Hope

Schoolroom Children who are hospitalized also deal with the stress that comes with falling behind in school. Mitchell Herndon, now 17, has faced many medical challenges, including losing his hearing and the ability to walk. He surprised most of his teachers by not only keeping up with his school work during a long stay in the hospital, but graduating 8th grade with honors. Lin Casper, his hospital teacher, is grateful for the opportunity donors provide to give children who are hospitalized a week or more the ability to keep up with school work. “Attending school is a child’s right, just like play, love and health,” says Lin. “To be able to give a child that while they are here is a completely unexpected blessing.” Other valuable Child Life services made possible through charitable giving include a sibling playroom, the Olson Family rooftop garden, a patient playroom and the Lion’s Den teen lounge, the PURINA Family Pet Center and the PetSmart Paws for Hope pet therapy program.

Clown Docs

Child Life Playroom

Child Life Services at St. Louis Children’s Hospital provides comfort, laughter and support during each child’s journey, protecting those precious childhood moments. “The donors who support Children’s Hospital give me the opportunity to have a career doing something I’m passionate about—providing children with a way to process what they are going through,” says Christy. “It makes me wake up excited to come to work every single day, and I couldn’t be more grateful.”

A publication of St. Louis Children’s Hospital

featured guardian of childhood: Dr. Bradley Schlaggar

One pediatric neurologist’s most important title: Dad On a sunny day in late March, Bradley Schlaggar, MD, PhD, prepared to coach his son’s hockey team through its first practice of the season. It would be the first time 11-year-old Simeon would be back on the ice since being declared in remission from leukemia.

Guardians Magazine Fall 2017

here’s a look you see in the eyes of parents of very sick kids,” says Dr. Schlaggar, who works as a pediatric neurologist at Washington University School of Medicine in St. Louis when not coaching hockey. “I understand that look in their eyes much more deeply now. There’s a lot of trauma that comes with seeing your child really, gravely ill.” That empathy was hard-won. Simeon was diagnosed 18 months ago, sending the whole family into a months-long nightmare of chemotherapy and tests and endless days and nights in the hospital. Since December, though, Simeon has been on maintenance chemotherapy, and life is beginning to return to normal. With his son back in school, Dr. Schlaggar, who is also a professor of radiology, psychiatry, pediatrics and neuroscience, has been able to turn his attention back to what he does best: studying how the brain develops, and how and why the patterns of normal development sometimes go awry. “The brain is what makes us human,” says Dr. Schlaggar, who is also neurologistin-chief at St. Louis Children’s Hospital and co-director of the Intellectual and Developmental Disabilities Research Center at Washington University. “In terms of the human experience, it’s all about what you perceive and communicate. The experiences you have—love, humor, inspiration—are all mediated through the brain. To me, as a parent and a child neurologist, optimizing every child’s cognitive outcome seems like a valuable goal.” Dr. Schlaggar’s interest in neurology dates back to high school, when he received a special edition of Scientific American in the mail. The edition was devoted to the brain. “It came out in 1979, and I still have it,” Dr. Schlaggar says. “The articles were right at the cutting edge of ideas about how the brain works and the nervous system develops, and I was just taken by the whole idea that the brain was organized so that different parts carry out different cognitive functions. I thought it was just the coolest thing.” Dr. Schlaggar also studies how the brain learns to read, an interest he picked up as a child from his mother, a pioneer in gifted education in the Chicago public schools.

The experiences you have—love, humor, inspiration—those are all mediated through the brain. To me, as a parent, as a child neurologist, optimizing every child’s cognitive outcomes seems like a valuable goal.

The Schlaggar family

Dr. Bradley Schlaggar

In addition to his family’s fondness for learning and reading, Dr. Schlaggar and his wife, Christina, and their kids, Simeon and 9-year-old Lena, spend a lot of time playing and watching baseball and hockey. “It’s hard to remember what life was like before cancer. We are big Cardinals and Blues fans, but we’ve just started going to sporting events again,” he says. “It’s nice to be out coaching again. It’s my son’s first time back on the team, joining some old friends he’s played with before, and I’ll get to be on the bench with him. It’s a benchmark, signalling that life is getting back to normal.”

Article source: By Tamara Bhandari, Washington University School of Medicine

A publication of St. Louis Children’s Hospital

buzzworthy

U.S. News Ranks St. Louis Children’s Hospital in All 10

“Best Children’s Hospital” Specialties U.S. News & World Report has again ranked St. Louis Children’s Hospital-Washington University School of Medicine among St. Louis Children’s the best in the nation. The publication is the ONLY St. Louis evaluated hospitals in 10 specialty areas hospital to rank in to compile the list of America’s Best all 10 U.S. News children’s hospitals. Of the 187 hospitals surveyed, St. Louis Children’s Hospital was categories one of only 24 (approximately 10 percent) to rank in all 10 specialties. To create the 2017/2018 list, 187 pediatric centers provided U.S. News with hard data such as availability of key resources and ability to prevent complications and infections. According to U.S. News data, St. Louis Children’s Hospital is 13th in the nation and 1st in St. Louis as well as the state of Missouri. The full rankings and methodology are available at www.usnews.com/childrenshospitals. The rankings are also published in the U.S. News Best Hospitals 2017 guidebook.

A Gift for You Values-Based Estate Planning Your values, your priorities, your intentions. They are yours and yours alone. You can make sure they will always be reflected and protected through values-based estate planning, a free personalized and confidential process offered through Thompson & Associates, a partner of St. Louis Children’s Hospital. This special opportunity offers unbiased and objective expertise in creating a personal estate plan that paints far more than your financial picture. Values-based estate planning ensures your story is communicated with the same passion, values and love that has defined your life. An estate plan stands out and lives on as an extension of you. This service is complimentary with no obligation and no time constraints. All conversations are held in the strictest confidence. This is meant to be a rewarding journey reflective of all your personal and financial desires.

Guardians Magazine Fall 2017

Meet Michael Geis As the Thompson & Associates advisor to St. Louis Children’s Hospital, Michael Geis has worked with dozens of hospital staff and supporters, helping them understand how to better shape their estate plans to reflect their personal objectives. His consultation is free, confidential and is offered with no obligation to take any action. To learn more or to schedule your meeting with Michael Geis, please contact Jan Rogers at St. Louis Children’s Hospital Foundation at 314.286.0981 or jan.rogers@bjc.org.

highlights & happenings

Children’s Hospital patient, Luca, along with his parents, Jared and Angela, made a special appearance at the 17th Annual Joe Buck Golf Classic in June 2017. Thanks to the energetic support of countless sponsors and golfers, the event raised $500,000 to support the Joe Buck Imaging Center at St. Louis Children’s Hospital.

Pedal the Cause Ride for a Child Children’s Hospital patients gathered for a day of fun and celebration at the annual Pedal the Cause Ride for a Child Picnic held at Epic 6 Laser Tag & Sports Arena. The Ride for a Child program partners these brave patients with Pedal the Cause teams to build relationships and provide inspiration to ride for a world without cancer.

Guests enjoy the fun and festivities at Play Date 2016, a nontraditional gala that encourages attendees to “be kids again” for one night, in support of St. Louis Children’s Hospital. Join us for a camp-themed Play Date on November 18 at the Four Seasons. Proceeds will benefit pediatric research through the Children’s Discovery Institute, a research partnership between Washington University School of Medicine and St. Louis Children’s Hospital.

With a mission to “find a cure for childhood cancer one handprint at a time,” representatives from Hyundai Hope on Wheels presented Drs. Josh Rubin and Alok Kothari with a $50,000 Impact Award to advance their research on pediatric brain tumors. They joined Melissa (pictured) and other St. Louis Children’s Hospital patients for the honorary handprint ceremony to acknowledge this special gift.

The June Jessee Memorial Foundation, established in memory of the Jessee family’s sweet “June Bug,” presented St. Louis Children’s Hospital a check for $100,000 that will help families meet the financial and medical challenges of caring for children with epilepsy, medical complexities, and global developmental delay from genetic diseases, congenital disorders or brain damage from birth.

Children’s patient, Ellie, and her family and friends, posed for a photo during their 4th Annual Golf FORE! Ellie Tournament. This golf tournament, which raised more than $80,000 in 2017, honors Ellie and kids like her with Rett syndrome and related disorders by supporting the Rett Spectrum Clinic at St. Louis Children’s Hospital. A publication of St. Louis Children’s Hospital

NON-PROFIT U.S. POSTAGE PAID ST. LOUIS, MO PERMIT NO. 858

One Children’s Place St. Louis, MO 63110 314.286.0988 or 888.559.9699 StLouisChildrens.org

Payton, Age 16 O’Fallon, MO

illness SHOULD NEVER INTERRUPT childhood But when it does, you can help us fight back. Every donation helps St. Louis Children’s Hospital provide exceptional treatment for kids like Payton. Severe migraines interrupted her rehearsals for an important dance recital. At just 14, Payton was diagnosed with a brain tumor. Using robotic surgery, a safer and more accurate procedure at Children’s which reduces recovery time, Dr. Matt Smyth removed the tumor, helping Payton quickly return to the spotlight. When you donate to Children’s, you become part of the passionate team that makes stories like this possible every day. Please join us today. Become a Guardian of Childhood. StLouisChildrens.org/Donate