Guardians Magazine: Summer 2018

Children’s Discovery Institute research supplement inside

Guardians Summer 2018

The stories of impact you make possible at St. Louis Children’s Hospital

Former patient, now Paralympian, gives back see page 16

Doing What’s Right for Kids:

Through Care

Through Discovery

Through Outreach

The stories of impact you make possible at St. Louis Children’s Hospital

about the cover

Patti Okai, age 20, gets some moral support from gold-medal Paralympian Noah Elliot.

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the best care for our kids

Team Gabriella vs. the “bad stuff”

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out of the hospital, into our neighborhoods

Broadening access to the best care for kids

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big advances for our small patients

Hope for Hunter Ray

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special supplement

Guardians of Research: An update for investors in the Children’s Discovery Institute

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letting kids be kids

May the force be with you, Evan

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featured guardian of childhood

Former patient, now Paralympian, gives back

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2017 year in review

Your donations at work St. Louis Children’s Hospital One Children’s Place St. Louis, MO 63110 314.286.0988 888.559.9699 Copyright ©2018 StLouisChildrens.org

From Malcolm Berry

Chief Development Officer at St. Louis Children’s Hospital Foundation Dear Friends, In a few short weeks, nearly 4,000 people will don their bike shorts, pump up their tires and hit the road for one simple cause: to achieve a world without cancer. That’s the mission of Pedal the Cause, a nonprofit organization that, in the past five years has raised more than $20 million for cancer research at the research labs of cancer fighting physician/scientists at St. Louis Children’s Hospital and Siteman Cancer Center. But for me, two other statistics stand out: 100 percent of the money raised stays here in St. Louis; and for every $1 Pedal the Cause donates to cancer research, an additional $7 is obtained (on average) through federal funding.

And that has already made a tremendous impact.

Pedal the Cause investments in pediatric cancer research have enabled our pediatric cancer researchers to advance the ability to mine genetic data for clues into how cancer develops in children. It has opened the doors to the possibility of deploying a child’s own immune system to fight cancer. And, it is helping us come closer to a day when a child’s genetic information can inform that child’s care, avoiding the pitfalls of harmful side effects and cancer recurrences.

There still is a staggering number of questions facing our dedicated cancer researchers about why kids get cancer and how to safely treat it. What we do know is that no child should have to fight cancer twice, and no cancer treatment should leave a child with a diminished quality of life. So our pediatric cancer researchers are working on ways to predict whose cancer will return after treatment. And they are dedicated to minimizing the damage to the rest of a child’s mind and body.

These are enormous undertakings, but I’m confident that with partners like Pedal the Cause, these challenges will be conquered. Please join us in climbing up the next set of hills, both, on the road and in the labs. Visit StLouisChildrens.org/Pedal and sign up to ride and/or support St. Louis Children’s Hospital’s Team Gabriella.

With thanks,

highlights & happenings

Malcolm Berry, chief development officer (left); philanthropists Fred and Vicki Modell; Joan Magruder, hospital president; Dr. Megan Cooper; and Dr. Gary Silverman, pediatrician-inchief, gather at the entrance of the newest Jeffrey Modell Diagnostic and Research Center for primary immunodeficiency (PI). Recognizing her rise as a leading PI researcher (see page 8), the center named Dr. Cooper the center’s director. She will use center resources to improve diagnostic testing and seek novel targeted therapies for children with PI.

On a May weekend of record-breaking heat, severe thunderstorms and hail, 10 players split up into two teams of five and played 26 continuous hours of Wiffle Ball to attempt to beat the Guinness World Record for “Longest Wiffle Ball Marathon.” In addition, players raised funds for Siteman Kids at St. Louis Children’s Hospital to help establish an MIBG therapy room, a lead-lined hospital room where patients can receive radiation therapy to treat high-risk neuroblastoma, a type of brain cancer affecting children, and thyroid cancer. Currently, only 13 hospitals nationwide provide this therapy. This event served as a warm up for the World Record Baseball Game, at which players will attempt to play 75-plus hours of baseball over the 2019 Memorial Day weekend in support of the hospital.

The American Hospital Association (AHA) recently elected Healthy Kids Express-Asthma as one of five 2018 AHA NOVA Award recipients. The AHA NOVA Award recognizes effective, collaborative programs focused on improving community health status. A round of applause is in order for all involved in ensuring kids throughout the community have access to quality asthma care. This includes our corporate and foundation partners Express Scripts, Cigna, Emerson, Saigh Foundation and William R. Orthwein Jr. and Laura Rand Orthwein Foundation, Inc., who help make the work of the Healthy Kids Express mobile asthma program possible.

For the 35th consecutive year, St. Louis Children’s Hospital Day at Six Flags kicked off summer with a bang. On Friday, June 1, thousands gathered at the park for a day of food and fun – all while raising more than $510,000 for programs and services at the hospital that help improve kids’ health and quality of life. Thanks to all attendees, Dr. Brown’s and the dozens of sponsors, including Sugarfire Smokehouse.

For the 13th year, the hospital’s Child Health Advocacy and Outreach department led the hospital’s participation in the Annie Malone May Day parade in downtown St. Louis.

This 100-year-plus St. Louis tradition honors Annie Malone, the founder of Poro College and the noted children’s home that carries her name. Pictured above, from left: Jill Schnurbusch, Head to Toe program specialist; and Healthy Kids Express nurses Kirsten Wilford, RN, and Jessica McCullough, RN.

Noah and long-time hospital supporter Joe Buck hit the links during the 18th Annual Joe Buck Classic in June to benefit the Joe Buck Imaging Center at Children’s. The tournament raised more than $555,000 to help kids like Noah when they need the best noninvasive X-rays, CTs and MRIs. Thank you to Joe and the 135 golfers for being Guardians of Childhood.

A publication of St. Louis Children’s Hospital

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the best care for our kids

Gabriella Heidorn

Team Gabriella vs. the “bad stuff�

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Guardians Magazine Summer 2018

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he Heidorn family doesn’t sugarcoat the pediatric cancer treatment experience.

“It has been the most difficult time for our entire family,” says Michelle Heidorn. Her 13-year-old daughter, Gabriella, was diagnosed with NUT midline carcinoma in December 2017. This rare and aggressive form of cancer has put Gabriella through surgery to remove the tumor in her salivary gland, 33 radiation treatments and now 12 rounds of chemotherapy. Each round requires six days of hospitalization to make sure she remains properly hydrated.

“We’ve literally had to put our life on hold while fighting to save Gabriella’s,” Michelle says, “but she has an amazing fighting spirit. I don’t know how she does it.”

One of the bright spots of Gabriella’s hospitalizations has been being able to have her beloved lab-beagle mix, Mona, visit her.

That’s thanks to the St. Louis Children’s Hospital Purina Family Pet Center — one of only four such centers in the country.

“These visits are so comforting and so therapeutic,” says Michelle. “They mean so much to Gabriella and brighten her spirits even during the most difficult days. We are so grateful for the donations that made the pet center possible.”

These days, this sweet teen’s spirits are also lifted by her new “duties” as the patient ambassador for the hospital’s Pedal the Cause Team Gabriella.

“Gabriella loves sports and has not been able to participate in softball or volleyball since her diagnosis,” Michelle says.

“Being able to play a role in a sporting event that supports cancer research is perfect for her naturally outgoing and competitive personality.”

“We have to win,” adds Gabriella. “We have to get rid of this bad stuff.”

To learn more about Pedal the Cause or to join Team Gabriella, visit StLouisChildrens.org/Pedal.

Gabriella knows she can rely on her family: brother Salvatore, left; mom, Michelle; dad, Jeff, and her frequent visitor through the hospital’s Purina Pet Center, Mona, to get her through her cancer treatment.

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out of the hospital, into our neighborhoods

Broadening access to the best care for kids

In 2015, the Children’s Specialty Care Center (CSCC) opened in west St. Louis County. In its first year, it recorded more than 75,000 patient visits; in 2017, that number increased to more than 104,000. Early discussions are underway to explore the possibility of building another specialty care center to serve another area of St. Louis County.

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n December 2017, St. Louis Children’s Hospital After Hours opened in south St. Louis County. Through March 2018, the location’s pediatric nurse practitioners saw 2,000 patients, for an average of 19 patients a day. Plans call for opening additional After Hours sites in the future.

As early as 1996, Children’s Hospital emergency medicine physicians and pediatric hospitalists began staffing the pediatric emergency unit at Missouri Baptist Medical Center and providing newborn medicine coverage for newborns. Similar services were expanded to Progress West Hospital in

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Guardians Magazine Summer 2018

O’Fallon, Mo., with the addition of pediatric inpatient coverage for overnight observation or further treatment. Recently, Children’s Hospital pediatric hospitalists began staffing emergency units at Memorial Hospital in Belleville, Ill. and Memorial Hospital East in Shiloh, Ill., while also providing 24-7 newborn medicine coverage.

This summer, pediatric specialists will begin staffing the emergency unit at Northwest HealthCare in north St. Louis County.

These off-site locations reflect the hospital’s mission to “do what’s right for kids” by focusing on making sure every child has access to world-class pediatric care.

Children’s Hospital patients, including Patrick (pictured here), are featured in a new billboard campaign promoting the hospital’s broadening accessibility.

“Our goal is to become less main-campus focused, which is what our referring physicians, patients and their families have been asking of us,” says Michele McKee, the hospital’s vice president, finance and strategic planning. ”When they need to see physicians for relatively minor or routine care, families would rather go to facilities near where they live that have convenient parking and access.”

The Children’s Specialty Care Center perfectly illustrates how the hospital is broadening accessibility. The CSCC offers clinics for 19 pediatric specialties, as well as surgical, imaging and laboratory services, among others.

It is adjacent to Interstate 64, a convenient thoroughfare not only for St. Louis County residents but those living farther west. And surface parking lots on the property allow direct entrance into the facility.

Beyond convenience, however, is the importance of providing easy access to the hospital’s expertise. McKee uses the Children’s After Hours location in south St. Louis County as an example.

“We received feedback from pediatric primary care physicians that after hours on weekdays and over the weekend parents were taking

their children to urgent care clinics designed for adults,” she says. “The quality of care for pediatric patients was less than optimal, and the pediatricians had little to no communication from these adult-based facilities.”

The Children’s After Hours clinic addresses those concerns by providing a level of care similar to that of a physician’s office through nurse practitioners specially trained in pediatrics. In addition, physicians receive thorough and timely communication about the care provided to their patients and any follow-up measures needed.

“Both St. Louis Children’s Hospital and Washington University School of Medicine are among the best in the country,” says Mark Lowe, MD, PhD, pediatrics, whose role at the hospital is partly focused on making sure that the expertise of hospital clinicians is accessible throughout the community. “Children deserve the best care possible, whether it’s treatment for a common illness or a complex medical issue.”

For more information about St. Louis Children’s Hospital’s off-site services, call Children’s Direct at 800.678.HELP (4357).

Meet the No. 7 girl on the hospital’s latest billboard campaign She’s a 7-year-old fighter who just wants a shot at a normal childhood. Veyda was born with gastroschisis, a birth defect of the abdominal wall that caused a cascading set of events. It caused a condition called short bowel syndrome, which required she be tube fed to get properly nourished. That made her susceptible to infections. Fortunately, she landed in the capable hands of pediatric surgeon Brad Warner, MD, who lengthened Veyda’s damaged intestine and made a better quality of life possible.

“Dr. Warner is amazing. We feel so lucky to have him in our corner,” Veyda’s mom, Elise, says. “In fact, we’re grateful for everything Children’s Hospital has done for us. It’s our second home.”

A publication of St. Louis Children’s Hospital

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big advances for our small patients

Hope for Hunter Ray One family’s journey through the perils of a complex disease

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Guardians Magazine Summer 2018

Anyone entering CHARGE syndrome or T cell deficiency into a Web browser would come away in wonder that any newborn could survive the number of multiple life-threatening medical conditions this joint diagnosis could cause. In the case of Hunter, born with these conditions on January 8 at Barnes-Jewish Hospital, a rare complication of CHARGE syndrome, called “complete DiGeorge syndrome,” prevented the development of a thymus. This organ, which sits near a baby’s heart, is responsible for taking developing T cells sent to it from bone marrow and turning them into a working immune system. Without a thymus, there is no immune system.

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ince last September, Victoria Parker had been living with the highs of knowing she was having a little boy to round out her family and the lows of learning from her fetal care team at Barnes-Jewish Hospital about a new medical challenge her baby Hunter would face.

She and her husband, Russell, prepared the best they could, absorbing more medical knowledge than they ever felt possible between their trips to St. Louis from their Marshfield, Mo., home.

Throughout their journey, they have learned to rely on their team of clinicians to help them cope with the day-to-day challenges of having a newborn who must undergo multiple surgeries to repair the defects caused

by CHARGE syndrome.

There is no one they rely on more, however, than Megan Cooper, MD, PhD. A pediatric immunologist, Dr. Cooper is a leading clinician in the field of primary immunodeficiency and director of the recently dedicated Jeffrey Modell Diagnostic and Research Center for primary immunodeficiency (PI) (see pg. 3) at St. Louis Children’s Hospital. And thanks in part to funding she received from the Children’s Discovery Institute, she also is on the forefront of research looking for the gene mutations that cause PI. She has been helping Victoria and Russell through everything they have to do to care for a child who has no immunity to anything.

“Hunter is doing very well and has recovered from his surgeries,”

This hospital is filled with people who don’t see themselves as just going to a job...they are here because it’s a calling for them.

And we are grateful for that.

Russell, Hunter’s dad Dr. Cooper says. “Our biggest challenge now is getting him to grow and helping him fight infections while waiting for a thymus transplant.”

Adding to the family’s challenges is the fact that Duke University Medical Center is the only center in the country that performs thymus transplants, a procedure that is still in clinical trial.

Victoria and Russell are communicating with doctors there and are waiting their turn for Hunter to receive one. They know that could take as long as a year and are spending their wait time trying to keep Hunter safe from any and all infections that come his way. One of their biggest challenges is making sure their home is safe for a baby with no immune system. That has meant moving to a larger place where Hunter can have his own room, repainting walls, deep cleaning every inch of space and tearing up carpets.

It has also meant teaching Victoria’s 6-year-old, Eboney, that being a great big sister means wearing a mask and gloves around her baby brother.

Victoria and Russell are sharing their story out of gratitude for all the assistance with the travel, meal and lodging expenses and the many other ways the hospital’s donor-supported Family Care Fund has helped.

“This hospital is filled with people who don’t see themselves as just going to a job to collect a paycheck,” Russell says. “They are here because it’s a calling for them. And we are grateful for that.”

To learn more about how you can support Dr. Cooper’s work or research like it, please visit StLouisChildrens.org/ WaystoGive or call 314.286.0988.

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Guardians of Research

Outsmarting resistance Why the time may be up for one dangerous bacterium

To understand why CDI faculty scholar David Rosen, MD, PhD, pediatrics, is so passionate about finding new ways to treat infections caused by the increasingly worrisome bacterium, Klebsiella pneumoniae, you only need to hear about one 5-year-old boy with cystic fibrosis.

The boy and his parents came to St. Louis Children’s Hospital from Cleveland, Oh., in the hopes of being added to the list for a lung transplant.

Routine examinations to determine the types of bacteria he already carried in his lungs found the presence of Klebsiella pneumoniae. It’s not uncommon for children with cystic fibrosis to pick up any number of bacteria as their disease progresses.

Most are treatable, but not this “nightmare bacterium.” It can cause pneumonia or bloodstream infection and contains an enzyme capable of chewing up the most effective

David Rosen, MD, PhD

CDI cancer research takes a ”quantum“ leap 11 Just a spoonful of sugar 12 Answers for Noah 13

antibiotics. It also disqualifies its victim from getting a lung transplant because the likelihood that the new lungs will get infected is perilously high. The family from Cleveland went home without hope for a transplant.

“We are uniquely equipped and experienced to study how resistant organisms, like Klebsiella, gain a foothold in the lungs and put a child’s chances of getting a transplant in peril,” says Dr. Rosen. “Donor funding allows us to use these resources to find answers and hope for more families.”

As a pediatric infectious disease specialist, Dr. Rosen knows that different bacteria need different proteins or toxins to survive in a given environment and ultimately establish an infection.

His lab aims to dissect these important factors used by Klebsiella and then find ways to derail them and prevent the organism from causing disease. An avid cyclist, Dr. Rosen likens the approach to taking the wheels off a bicycle.

“Perhaps by learning more about how this organism initiates infection, we can develop new therapies to treat or prevent disease, even when we are unable to kill the organism with traditional antibiotics.”

Klebsiella wasn’t on the radar of infectious disease specialists like him until relatively recently. Back in 2001, only about 1.6 percent of Klebsiella

Our ultimate goal is to develop a whole new arsenal of different ways to inhibit the bacterium from causing infection.

Dr. David Rosen

strains were resistant to a class of antibiotics called carbapenems. By 2010, that number shot up to 10 percent.

Today, more than 15 percent of Klebsiella infections can stand up to carbapenems. Many of the patients who die from Klebsiella infections are immunocompromised because of another disease, such as cancer. But many people harbor this microbe in their intestines without ever knowing it. That’s partly why it’s so insidious.

By carrying something that is so difficult to treat and so dangerous for those who are more vulnerable, one could unknowingly be spreading the disease.

“If we find out what bacterial factors are triggering immune protection, we might be able to develop a vaccine with that factor built into it,” Dr. Rosen says. “Our ultimate goal is to develop a whole new arsenal of different ways to inhibit the bacterium from causing infection before it gets started.

Klebsiella is not going to outsmart us for very much longer.”

ChildrensDiscovery.org

AN UPDATE FOR INVESTORS IN THE CHILDREN’S DISCOVERY INSTITUTE

CDI cancer research takes a ”quantum” leap St. Louis Children’s Hospital oncologist Todd Druley, MD, PhD, pediatrics, has been awarded the Hyundai Hope on Wheels (HHOW) Quantum Award to continue work he began with a CDI grant to study acute myeloid leukemia (AML). This $1 million HHOW Quantum Award will leverage a multi-disciplinary team of pediatric leukemia experts to study very rare AML mutations in order to tailor therapies to the unique biology of individual children. This promises to improve treatments and increase survival rates.

AML only accounts for 25 percent of pediatric leukemia cases but accounts for 50 percent of pediatric leukemia deaths. One reason for poor outcomes is the inability to definitively assess the presence of residual cancer cells. Flow cytometry, the test traditionally used for that purpose, is not always sensitive enough to detect lurking cancer cells and cannot link leukemia mutations to precision therapies. The Druley lab has developed, validated and applied error-corrected sequencing that is 100-times more sensitive at finding residual leukemia mutations than standard DNA sequencing approaches.

Preliminary studies find previously undetectable AML-related warning signs in more than 65 percent of pediatric cases studied to date.

The Druley Lab seeks to destroy any chance of AML returning.

Dr. Druley’s team will apply this innovative sequencing technique to more than 1,800 specimens collected by the Children’s Oncology Group (COG). This partnership of pediatric cancer researchers worldwide was the largest childhood AML trial ever completed. The promised result of the Druley lab’s large-scale sequencing will be to detection of residual AML, which will improve future therapeutic selection and survival for children with AML.

Learn more about the the Children’s Discovery Institute (CDI) at ChildrensDiscovery.org.

See back panel for information on the CDI Investor Symposium, where you can learn how gifts to support research are being used by CDI-funded investigators to transform pediatric health care.

Todd Druley, MD, PhD

Guardians of Research

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Guardians of Research

Just a spoonful of sugar CDI investigators hope to taste sweet victory over a rare condition

Researcher Colin Nichols, PhD, the Carl Cori Professor in Cell Biology and Physiology at the Washington University School of Medicine, has spent the past three decades studying channels of a complex of proteins that regulate potassium levels in cells. By mutating the underlying gene in the pancreas of mice, his lab was the first to link these potassium channels to neonatal diabetes. When his lab mutated the related gene that creates the channels in the cardiovascular system, he and his colleagues noticed that their mouse models developed symptoms of a rare disease called Cantu syndrome.

Meanwhile, unbeknownst to Dr. Nichols, St. Louis Children’s Hospital geneticist Dorothy K. Grange, MD, was one of the few people in the world actually studying patients with this genetic disease. Cantu syndrome causes excessive hair growth, bone abnormalities, swelling in the legs, problems with heart function and a range of other baffling symptoms, such as unusually flexible joints.

The two had never met, even though they worked in adjacent buildings on the School of Medicine campus. That is until Dr. Nichols noted that Dr. Grange

was among the authors listed in a 2012 paper that identified the association of Cantu syndrome with mutations in a gene that functions together with the one Dr. Nichols studied.

“It wasn’t the same gene we were studying,” Dr. Nichols told a writer for Outlook, the publication of the School of Medicine’s public affairs office. “But we knew that proteins from each of those two genes come together to form a single potassium channel, and we now know that mutations in either gene can cause Cantu syndrome.”

Drs. Nichols and Grange have been working with each other, and with Children’s Hospital pediatric cardiologist Gautam Singh, MD, ever since. In fact, to advance the translation of Dr. Nichols’ basic science into clinical applications, they started one of only two Cantu clinics in the world. Every summer since 2013, children and their families from all over North America convene at St. Louis Children’s Hospital to participate in research that has been partly funded by the CDI and the NIH. The major focus of the clinic is the in-depth study of the cardiovascular abnormalities associated with the condition, such as low blood pressure

Every summer since 2013, children and their families from all over North America convene at St. Louis Children’s Hospital to participate in research that has been partly funded by the CDI and the NIH.

The Lamfers: Ethan, left; Noah; Rachel and Randy

and dramatically enlarged hearts.

The gene mutations causing Cantu syndrome affect the flow of potassium into muscle cells, including those of the heart and blood vessels. When the potassium channels open, blood vessels relax. In people with Cantu syndrome, the channels stay open, resulting in dilated blood vessels and lowered blood pressure.

“We’re getting close to doing a clinical trial with a drug that directly blocks these open channels,” Dr. Nichols says.

“In mice, it reverses many of the Cantu syndrome symptoms, and we’re hoping to see the same reversal in people.”

The drug is called glibenclamide, and it is already being used to treat type 2 diabetes — and, in particular, has proven to be a magic bullet for newborn diabetes — by targeting the potassium channel in the pancreas. Children with CONTINUED ON NEXT PAGE

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A publication of the Children’s Discovery Institute

AN UPDATE FOR INVESTORS IN THE CHILDREN’S DISCOVERY INSTITUTE

Answers for Noah It took seven years for doctors in South Dakota to land on a diagnosis for a little boy with medical issues in virtually every system of his body. By then, Noah Lamfers was under the care of 13 different clinical specialists.

“The genetics doctor told us that Noah may be the most severely affected of anyone diagnosed with Cantu syndrome. Of the 69 children in the world to have this condition, Noah is one of just a few who need a tracheotomy. While he does have the cardiac issues that most Cantu patients have, interestingly, respiratory and GI problems are our biggest concerns,” Rachel Lamfers.

The Lamfers travel to St. Louis every year now to attend the Cantu Syndrome Clinic. A major focus of the clinic has been the in-depth study of the heart and lung defects associated with the condition.

“The clinic provides Noah a way to meet other kids with Cantu syndrome. It’s comforting to connect with other families and hear their stories,” Rachel says. “We are so thankful to all the doctors and scientists here at the clinic who help us understand, as they also learn, more about Cantu syndrome year after year. Noah is able to be a part of research that could not only benefit him someday but also help all the other patients and future patients

Wally Coen, age 3 (above and inset) and his family traveled from Argentina to attend the Cantu Syndrome Clinic.

with the diagnosis. The research that is being done and the drugs that they are considering using could also help patients who don’t have Cantu syndrome, necessarily, but who suffer from similar symptoms that Cantu syndrome patients experience. That will make a huge impact on so many lives and we hope that someday it will be a reality.”

Just a spoonful of sugar CONTINUED FROM PREVIOUS PAGE

Noah and his dad, Randy, hang out between Noah’s clinic appointments.

neonatal diabetes, who have been insulin dependent for years, typically experience better glucose control with g+libenclamide. Very preliminary studies, coordinated by Drs. Nichols and Grange, have already shown promising results in a baby from Australia with Cantu syndrome. This baby was having significant trouble breathing because the condition was affecting muscle tissue that lines his trachea. The drug not only helped those muscles contract, but also helped the child lose his excess hair and stopped the enlargement of the heart that typically happens in children with Cantu syndrome.

The only likely downside for repurposing glibenclamide for Cantu syndrome is its action on the pancreas to lower blood sugar levels.

“But a simple remedy is to give glucose along with the medication,” Dr. Nichols says. “So it turns out that a spoonful of sugar may actually help the medicine go down, or at least work the way you want it to.”

Tamara Bhandari and Michael C. Purdy of Washington University School of Medicine public affairs contributed to this story.

Guardians of Research

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letting kids be kids

May the force be with you, Evan

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o the pediatric radiation oncologists at St. Louis Children’s Hospital, proton beam therapy for treating brain tumors is a welcome weapon in their arsenal of treatments.

The protons target tumors with greater precision because the depth of the radiation can be adjusted to avoid other organs and healthy tissue.

Evan in his Stormtrooper stabilization mask and ready to take on cancer therapy

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Guardians Magazine Summer 2018

But to a child, the S. Lee Kling Proton Therapy Center can be a scary and intimidating place. To that, 8-year-old Evan Cornett can attest. He was so frightened and nervous that he had to come off the table halfway through his second proton therapy treatment. When his Child Life specialist Hannah Heimos saw his distress, she broke out some paint. Proton therapy requires the patient to wear a stabilization mask in order to stay in the same position every time. Hannah decided that what Evan needed was a mask that made him feel like a super hero.

“Evan is a huge Star Wars fan, just like his dad,” explains Evan’s mom, Emily. “So it really wasn’t a surprise that he chose to be a Stormtrooper to face down that big machine.”

Painting a mask just for him helped restore his ability to have a choice about something during a period of time that limits choice.

Hannah Heimos, Child Life specialist What was a surprise was that Hannah was able to enlist the help of real Stormtroopers to escort Evan to the first therapy with his new mask.

“You could tell right away that Evan felt empowered by his new identity,” Hannah says.

“Painting a mask just for him helped restore his ability to have a choice about something during a period of time that limits choice.”

Evan’s mask worked so well that Hannah now creates a custom mask for every kid who wants one. “We’ve had requests for super heroes, Disney princesses and even Paw Patrol masks.

It just lightens up the ordeal and inserts a little fun,” she says.

“Evan was definitely more relaxed and less frightened. And that was really important considering he has to endure 30 treatments,” says his dad, Eric. “We’ll take smiles over tears any day.”

Hannah Heimos, right, called in some reinforcements while preparing a Stormtrooper mask for Evan.

To learn more about how you can help kids like Evan by supporting vital hospital programs and services, visit StLouisChildrens.org/WaystoGive or call 314.286.0988.

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featured guardian of childhood

Former patient, now Paralympian, gives back

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Guardians Magazine Summer 2018

Hospital art therapist Julie Gant and grateful patient ambassador Whitney Kohlmeyer welcome Noah.

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or Noah Elliot, age 20, the journey toward shredding the banked slalom for gold in the 2018 Paralympic Games in Pyeongchang, South Korea, was quite the gnarly one. At age 15, this avid skateboarder had dreams of becoming a professional in that sport. But a diagnosis of osteosarcoma changed all that. This bone cancer required chemotherapy treatment at St. Louis Children’s Hospital and eventually led to an amputation of his left leg, just above the knee.

Noah finished his chemotherapy, relying on art therapy to keep his spirits up. Art therapy is a donor-funded program that uses the creation of art to help kids express their feelings about hospitalization. The program comes in handy for someone like Noah, whose cancer took away a sport that empassioned him.

Disappointed but not deterred, Noah took part in a snowboarding camp for children with cancer. There, he met a Paralympic snowboarder who inspired him to give her sport a shot.

“She had the same cancer that I had and was wearing a really cool prosthetic.

How could I not be inspired?”

After his own amputation and receiving the all-clear from his doctors, Noah received his own prosthetic and headed to Park City, Utah, to immerse himself in snowboarding.

The result was not only gold in the banked slalom but a bronze medal in snowboard-cross.

On April 13, Noah returned to Children’s Hospital, not as a patient but as an inspiration to all those who gathered in the Child Life playroom that day to meet him. After sharing his story, Noah spoke to every patient in the room, letting them get a closer look at his hard-fought medals. He also donated the bib he wore during his gold-medal performance.

“I wanted the hospital to have it because this is really where it all began.”

I wanted the hospital to have the bib I wore during my gold-medal performance because this is really where it all began.

Noah Elliot gold-medal Paralympian

To support art therapy or other hospital programs and services designed to help kids reach their full potential, visit StLouisChildrens.org/WaystoGive.

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2017 year in review

Your donations at work Your support enables us to keep our promise to kids and their families every day.

  10

Lung

23

Heart

1

Heart/ lung

12

1

Liver

Liver/lung

39

Bone marrow

5

Kidney

89

Total transplants performed

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Guardians Magazine Summer 2018

Total amount raised:

$20,223,162

384,284 Total patient visits

17%

Corporate/foundation

19%

Special events

Source of gifts 22%

37%

Planned giving

Individuals

5%

14%

9%

Gifts supported

Other

Education

20%

22%

14,683 Surgeries performed

Emergency department visits

Patient care

Research

1%

Hospital admissions

52,551

Children’s Miracle Network

34%

16,365

Equipment

Community outreach

2,500

Trips made by transport team

311,733 Outpatient clinic visits

NONPROFIT 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

U.S. News & World Report has again ranked St. Louis Children’s Hospital-Washington University School of Medicine among the best in the nation. The publication evaluated pediatric hospitals in specialty areas to compile its list of America’s Best Children’s Hospitals.

Of the 189 hospitals surveyed nationwide, only 23 ranked in all 10 specialties, including St. Louis Children’s Hospital-Washington University School of Medicine.

“As Guardians of Childhood, we count on our team for the brightest medical minds, the most compassionate care, and the latest and most innovative treatment options for children,” says Joan Magruder, hospital president.

“Families in St. Louis, the region, all 50 states and 80 countries around the world count on us to be the best for their children. We take that mission very seriously and this ranking by U.S. News is rewarding honor.”

Save the date Join us as we celebrate the full potential of pediatric research at the

11th Annual CDI Investor Symposium November 1, 2018 | 6:30-8:30 p.m.

Eric P. Newman Education Center at Washington University School of Medicine 320 S. Euclid Ave., St. Louis, MO 63110

Invitation to follow.