Guardians Summer 2017

Guardians Summer 2017

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

Healthy Kids Express celebrates major milestone see page 4

2016 Year in Review See pg.14

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Sweet Liby and her new heartbeat

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Meet Liam: doing his part to put away the bad guys: childhood leukemia

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We don’t think kids should have cancer either, Jonny

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

From Malcolm Berry: Chief Development Officer at St. Louis Children’s Hospital Foundation

ABOUT THE COVER :

Siblings, Isaiah and Di’Nah, work with the Healthy Kids Express team to manage their asthma.

4 OUT OF THE HOSPITAL, INTO OUR NEIGHBORHOODS

Healthy Kids Express celebrates major milestone

6 THE BEST CARE FOR OUR KIDS

Sweet Liby and her new heartbeat

8 BIG ADVANCES FOR OUR SMALL PATIENTS

Meet Liam: doing his part to put away the bad guys: childhood leukemia

10 LETTING KIDS BE KIDS

Teen Prom at Children’s: The. Best. Thing. Ever.

12 FEATURED GUARDIAN OF CHILDHOOD : JON AND KIMBERLY WADE

We don’t think kids should have cancer either, Jonny

14 2016 YEAR IN REVIEW

Dear Friends, I have the honor of leading the St. Louis Children’s Hospital delegation to the 2017 Aspen Children’s Forum, which convenes approximately 200 philanthropists who have demonstrated a strong commitment to advancing the health and well-being of children. Our goal is to advance an agenda of research, innovation and policy priorities that put children first, where they belong.

It’s time. In spite of gains made in understanding child development and the impact children’s health and well-being has on society, childhood itself is up against daunting challenges. It’s time to seriously address the fact that childhood obesity rates have tripled over the last three decades. It’s time to grapple with the reasons why 60 percent of U.S. children start kindergarten unprepared. It’s time to bring out of the shadows the fact that each year, approximately 4,600 U.S. youth between the ages of 10 and 24 commit suicide, while 157,000 receive medical care for self-inflicted injuries.

Some would say society is failing our kids and nothing can be done. But, I can tell you that our little band of Aspen Children’s Forum attendees say there is and that it starts with all of us.

We are exploring ways to change societal attitudes about the need to invest in children and children’s health. We are examining the key gaps in public policies affecting the health and well-being of children throughout North America. We are brainstorming new ways to advocate for our kids and optimize our health care delivery system. And, we are looking for ways to trigger innovation and build upon existing research.

If you are reading this message, it means you already have joined us in that conversation. Let’s keep it going. Let’s examine the forks in the road and ask what choices—societal and personal—best reflect the interest of children.

Hospital and Foundation annual report

St. Louis Children’s Hospital One Children’s Place St. Louis, MO 63110 314.286.0988 888.559.9699 Copyright ©2017 StLouisChildrens.org

With gratitude,

Malcolm Berry

highlights & happenings

St. Louis Children’s Hospital Clown Docs goof off with attendees at Cocktails and Clowns, an event hosted by the Young Friends of Children’s Hospital to benefit the Clown Docs program. As part of Child Life Services, the docs provide much-needed laughter and stress relief for patients and families.

Safety Stop turns 10!

The hospital recently celebrated a milestone anniversary of its free injury prevention program, Safety Stop. The donor-funded program promotes the proper use of safety gear—including car seats and helmets—and provides parents with other resources for car and home safety. For more information on Safety Stop, call 314.454.KIDS.

Susan Stith, Vice President of Diversity, Inclusion and Corporate Giving at Express Scripts (center), presents St. Louis Children’s Hospital staff and board members with a check for $500,000 during a March 27 celebration of Healthy Kids Express Day in the City of St. Louis. The event celebrated the Healthy Kids Express mobile health program—supported solely through philanthropy—and its achievement of providing free asthma, dental, vision, hearing and general health screenings to 250,000 children in underserved areas of our community since 2000.

(Read more about this event on page 4.)

Dr. Jose Pineda, Director of the St. Louis Children’s Hospital Neurocritical Care program (center), proudly stands with the Strebe family, honorary guests at the 2017 Endowment Ceremony.

The event acknowledges the important investments made by endowment donors. Patients Kirsten and Elias Strebe (right), along with their parents, John and Julie (left), delivered a powerful testimony at the event, sharing their life-changing journey after a car accident nearly took the lives of Kirsten and Elias.

St. Louis Children’s Hospital patient Will Bartold is all smiles with his mom at the 2017 Table Tops Spring Event.

As the honorary guest of the event, hosted by the Friends of Children’s Hospital, Will spoke about recently ringing the bell signifying the end of his cancer treatment—a story that fit perfectly with the event’s “Celebrations” theme.

Guests of the 34th Annual Children’s Hospital Day at Six Flags, presented by Dr. Brown’s, enjoy food (yum, Sugarfire and popsicles!), fun and no lines for rides at the hospital’s longest-running fundraising event and VIP Six Flags experience. The event raised more than $485,000 to fund important programs at Children’s Hospital.

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out of the hospital. into our neighborhoods.

Healthy Kids Express celebrates major milestone

As the completely donor-funded Healthy Kids Express (HKE) vans rolled toward the 250,000th child served through their mobile health programs, St. Louis celebrated by proclaiming Monday, March 27, Healthy Kids Express Day. Community and political leaders throughout St. Louis, including then-Mayor Francis Slay, commemorated the milestone.

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t. Louis Children’s Hospital launched the HKE program with one van in 2000 to deliver free, school-based preventive health care services to underserved areas of the community. Today, a fleet of HKE vans offers general health and vision screenings, dental and asthma care.

Every HKE school visit underscores the fact that where children live should not determine the quality of their health care. Services provided help detect and treat health problems and conditions that could potentially prevent children from attending school and performing at their best.

HKE regularly conducts needs assessments for the St. Louis community and addresses the top two reasons for chronic school absenteeism by providing comprehensive asthma services on the asthma vans and dental exams and restorative care on the dental van.

Working mother Detria Huddleston can attest to the assistance the HKE vans provide. Her children, Isaiah, age 10, and Di’Nah, age 9, (pictured on the cover) both need asthma treatment. Having had asthma as a child herself, Detria knew that conditions such as damp weather, high pollen or mold counts, even snow or, conversely, heat could trigger sidelining attacks.

She says visits by the HKE asthma vans to the school where her children attend and she worked eased her stress and helped her children manage their asthma. Detria’s family also has benefited from the HKE vision and dental vans.

Healthy Kids Express team in front of its three mobile health vans

Healthy Kids Express Day recognized the men and women who support Healthy Kids Express through their clinical skills or through their generous donations. We are proud those efforts make lives easier and children healthier.

Joan Magruder, hospital president

“We are so grateful to Healthy Kids Express,” she says. “Those vans and the people who work on them continue to shine a comforting light on my family.”

At the March 27 event, Joan Magruder, hospital president, credited philanthropy for catalyzing and sustaining the hospital’s ability to reach out to communities to ensure that quality health services are literally just around the corner.

The Making of a Milestone In 2016, 12,250 children benefited from HKE services.

The asthma van visited 14 schools, teaching children how to manage their condition.

The dental van provided care for more than 1,700 children, many of whom have never seen a dentist.

The screening van identified 549 children who failed a vision screen, and social workers ensured they received eyeglasses.

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the best care for our kids

Sweet Liby

Super Liby with mom, dad and big brother, Lane

and her new heartbeat

Liby Peterson came into this world on November 9, 2016, in Wichita, Kansas with a heart that would not sustain her for very long.

The doctors at Kansas City Mercy Children’s Hospital told her parents, Jill and Josh, that Liby would need a heart transplant as soon as possible and that the best place to have it, given her delicate condition and her age, would be St. Louis Children’s Hospital.

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t. Louis Children’s Hospital has one of the largest pediatric heart transplant programs in the nation. In fact, it performs so many heart transplants each year that it maintains the clinical qualification criteria to be an Optum Congenital Heart Disease Center of Excellence. Only 25 other centers can make that claim.

Because Liby was so young, the Petersons were told that finding a suitable heart could take time, even as much as a year.

“So we basically built a little life here at Children’s,” Jill says. “We had a room at the local Ronald McDonald House, but spent most nights in Liby’s hospital room. Josh got a job at a nearby hardware store to help financially.

And we just waited it out.”

We basically built a little life here at Children’s. We had a room at the local Ronald McDonald House, but spent most nights in Liby’s hospital room. Josh got a job at a nearby hardware store to help financially. And we just waited it out.

The wait ended in just 87 days. Liby received her new heart on February 28. But, long before her damaged heart was laid to rest, the Peterson family received a comforting gift. Her original heartbeat was recorded and placed inside a soft and cuddly bunny, donated by Dueling for Lincoln, an organization founded by Kelsey Mercer and her husband. Kelsey was a nurse practitioner in the Heart Center when her own newborn, Lincoln, was unable to fend off numerous serious illnesses, including heart failure and infant leukemia.

“We are so thankful for the 83 days we were able to hold his hand in this messy, beautiful world,” Kelsey writes on the DuelingforLincoln.org site.

That gratitude is shared by the Petersons.

“Liby loves her bunny,” Jill says. “We are so grateful to have it, especially knowing where it came from.”

The heartbeat bunny isn’t the only keepsake the Petersons have to remember their experience at Children’s. Thanks to Eden’s Army, a foundation created in the memory of Eden, who was born with a congenital heart defect, the Heart Center offers its own Beads of Courage program. The resilience-based intervention supports and strengthens children and families coping with serious illness.

Children can tell their story using colorful

Jill Peterson, Liby’s mom

Liby with her heartbeat bunny

beads as meaningful symbols of courage that commemorate milestones along their unique treatment path.

Every child in the Heart Center receives a basket of beads they have earned since the beginning of their journey. With the help of parents, patients string their beads every week. This effort is a visual reminder of their strength and their capability to handle whatever comes their way.

“We have so many beads. And Liby has earned every one of them. We hope they strengthen her in the years ahead,” Jill says.

Heart Center patients can participate in the Beads of Courage program which supports and strengthens children and families coping with serious illness

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big advances for our small patients

Meet Liam: doing his part to put away the bad guys: childhood leukemia

Liam Goble has some big plans. “When I’m bigger, I want to drive a car with sirens on the front and sirens on the back,” he says. “I’ll arrest bad guys and put them in the back of my van, lock the doors and jump right in. Bam!” A diagnosis of acute lymphoblastic leukemia (ALL) threated to derail those plans.

Liam charms one of his Children’s Hospital nurses.

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’ll never forget. It was Super Bowl Sunday of 2016 when I decided to take him to an urgent care clinic, expecting to be home by game time with an antibiotic,” Shannon, Liam’s mom, says.

But Liam’s tender, swollen belly quickly changed those plans. Liam, followed by his terrified parents Shannon and Charlie, was sped off by ambulance across the river to St. Louis Children’s Hospital, where his treatment for acute lymphoblastic leukemia (ALL) kicked off with a 28-day hospital stay.

Liam, who has been enlisted as the child ambassador for the St. Louis Children’s Hospital Pedal the Cause team, doesn’t have to give up on his dreams, thanks to decades of research that have improved the prognosis for kids his age diagnosed with ALL. Money raised through Pedal the Cause goes directly into cancer research conducted at Siteman Kids at St. Louis Children’s Hospital, the hospital’s pediatric cancer program.

Meanwhile, a Children’s Discovery Institute research grant is providing seed funding for a study on recurrent acute myeloid leukemia (AML), another form of leukemia in children.

Its investigators hope to gain as much ground treating AML as they have had with treating ALL. The journal Science Translational Medicine recently published a study showing promise for immunotherapy in treating recurrent AML in adults. The study’s lead author, Rizwan Romee, MD, and senior author, Todd Fehniger, MD, PhD, from the division of oncology at Washington University School of Medicine, barely let the ink dry before they were on to their next challenge.

In collaboration with Jeffrey Bednarski, MD,

pictured L-R: Bednarski, Fehniger and Romee

PhD, pediatrics, they received funding from the Children’s Discovery Institute to pursue the same study in children.

Drs. Romee and Fehniger explain that their small, phase 1, “first in human” clinical trial provides evidence that the immune system’s “natural killer” (NK) cells can be dialed up in the laboratory, trained to recall that activation and then be unleashed to destroy cancer cells in some patients. Responses to the treatment were observed in five of the nine patients that could be evaluated.

Everyone has NK cells in their body. The fact that they have a tendency to pounce and kill AML cells makes them of special interest. They were discovered in the 1970s by two groups of researchers in the United States and Scandinavia.

Since then, much effort has gone into understanding their biology and ways to put them to better use.

“It wasn’t until recently that we figured out some new ways to train these cells and make them more responsive to leukemia cells,” says Dr. Bednarski. “With Rizwan and Todd’s discovery and support from the CDI, the next chapter of understanding NK cell biology starts right here at the School of Medicine.”

“We have several steps to take and a significant amount of data to gather before we can say we are ready to try this therapy in children with AML,” explains Dr. Bednarski, “but given the fact that I have several patients who could potentially benefit from immunotherapy of this kind, we all feel a sense of urgency to pursue this research.”

The Goble family has been back and forth for maintenance treatment, scans and procedures

With Rizwan and Todd’s discovery and support from the CDI, the next chapter of understanding NK cell biology starts right here at the School of Medicine.

Dr. Jeff Bednarski

—including lumbar punctures that Liam handles bravely—for more than a year. But that hasn’t stopped Liam from doing everything he’s always enjoyed, chief among them, riding his police motorcycle around the neighborhood. Also on Liam’s favorites list is anything having to do with Blaze and the Monster Machines, mixing it up with a little Paw Patrol every now and then.

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letting kids be kids

Teen Prom at Children’s The. Best. Thing. Ever.

Madeline Rauh, age 16, waits patiently in her sunny, floral dress for her turn in the make-up chair.

“I was here last year as a patient waiting for my kidney transplant,” she says. Here is ground zero for Teen Prom preparation at St. Louis Children’s Hospital.

Children’s Hospital patient, Elizabeth (left), shares a laugh with her friend and prom guest, Emma.

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ll afternoon, dozens of teenage volunteers buzz around among make-up artists, hair stylists, nail technicians and Child Life staff, assisting patients with picking out donated dresses, tuxedo T-shirts, faux floral corsages and other accessories fit for a prom king or queen to be crowned that evening. Everyone is excited.

Kathy, a make-up artist who donates her time, along with several other colleagues in her industry, has been doing make-up for the hospital’s Teen Prom since its inception in 2014.

“It’s just the best thing ever,” she smiles.

“Even though I was really tired, it was fun and I knew I wanted to come back,” says Madeline, who received her kidney last summer thanks to her father, who was found to be a perfect match.

Mitchell Herndon 10

Guardians Magazine Summer 2017

DJ Zach Brock

Madeline Rauh

With some encouragement from her friends in Child Life, she joined the Teen Life Council, a group of current and former patients whose goal is to create a better hospital experience for teen patients. “We want to make the hospital more fun for teens,” Madeline says. One of those fun experiences is prom, and the Teen Life Council plays a key role in planning the big night.

Another Teen Life Council member, 17-year-old Mitchell Herndon, notes that prom is the culmination of all the work of the council throughout the year. “It just gives kids an opportunity to get away from their hospital room for the night. And some might actually miss their prom because of their hospital stay… so it’s cool that we can bring it to them.”

Down in the hospital atrium, outside the cafeteria, decorations and lights are strung about, with treats and carnival games set up in between tables. To punctuate the carnival theme of the evening, the 2017 Teen Prom banner reads “Come One, Come All, Let’s Have a Ball.”

Music and the DJ booth are the centerpieces of prom, and Top 40 hits are where it’s at for DJ Zach, who also happens to be a former patient. Zach

The prom king and queen pose with special guest, Louie.

Brock, now 18, beat cancer three times.

In addition to his paid gig with TKO DJs, he spends a lot of his time as an ambassador for Children’s Miracle Network (CMN), a fundraising partner of St. Louis Children’s Hospital.

Zach is attending St. Louis University in the fall with the hopes of studying entrepreneurship and communications to prepare him for a career in the non-profit sector. Already a wellknown motivational speaker around SLU and other college campuses for CMN’s Dance Marathon fundraiser, he found that prayer and reflection on

why he survived cancer but some of his friends did not, helped give him the strength to share his story. “I have found purpose, confidence and joy from sharing my story, and I hope that some of the kids here tonight can do the same in the future,” he says.

A few minutes later, it’s time for Zach to announce prom king and queen. Chaun and Jadyn come forward to receive their crowns with cheers and tears all around. The dancing continues and the lines blur between hospital patients and teens just having fun with friends.

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featured guardians of childhood: Jon and Kimberly Wade

We don’t think kids should have cancer either, Jonny The Kids Shouldn’t Have Cancer Foundation (KSHCF) recently donated $75,000 to St. Louis Children’s Hospital to help support pediatric brain cancer research through the Children’s Discovery Institute (CDI), a research partnership between Children’s Hospital and Washington University’s School of Medicine.

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he Jerseyville, Illinois-based non-profit foundation was created in memory of Jonny Wade, who died at age 8 of brain cancer on Dec. 24, 2015. Jonny’s parents, Kimberly and Jon Wade, founded KSHCF shortly after his death.

“This is the first donation we’ve ever made,” says Kimberly. “It thrilled us to learn that $75,000 is the exact amount of funding needed to add one more child to the trial underway with funding from the CDI.” Jonny’s former pediatric oncologist, Dr. Karen Gauvain, will work with neurological surgeon Dr. Gavin Dunn on the first-of-its-kind clinical research trial.

“Basically we’re taking tumor tissue, doing genetic sequencing and looking for gene defects that may be causing the tumor to grow,” says Dr. Gauvain.

“Then, we’re creating vaccines that work against those genetic abnormalities.”

Each vaccine will be personalized for the child who will receive it, she says.

The name for the foundation was taken from a statement that Jonny made during the suffering he endured in his final year: “I don’t want any other kid to have cancer.”

A week before Christmas 2014, Jonny got a headache. Within eight days, he was diagnosed. The disease progressed quickly.

“Jonny only survived 363 days after he was diagnosed,” Kimberly says. “His diagnosis threw us into the pediatric cancer world, a world we knew very little about. We thought cancer in children was rare. We found out approximately 46 children—about two kindergarten classes—are diagnosed with cancer every day.

Seven children will die every single day from cancer.”

The last year of Jonny’s life was filled with cancer treatments that had sideeffects like radiation burns, nausea and fatigue. “Even though the treatments were awful and difficult for him, he tried to keep a smile. He cared about everyone else.

He was an amazing soul,” Kimberly says.

According to Kimberly, Jonny, who had to leave a twin brother named Jacky behind, makes his presence known. “We chose a butterfly for the KSHCF symbol because we asked Jonny to send us butterflies from heaven,” Kimberly says. And, she adds, they aren’t just live ones. “Once, I was walking through an airport, thinking of Jonny, and I saw a butterfly statue that I’ve never noticed before.”

Jonny and his twin brother Jacky

We thought cancer in children was rare. We found out approximately 46 children— about two kindergarten classes— are diagnosed with cancer every day.

He also sends his family “kisses” through the kindness of others.

“Sometimes, at a moment I’m feeling down, at that moment a complete stranger will come up to me and ask if I’m Jonny’s mom or talks to me about him,” Kimberly says. “I call these my Jonny kisses.”

Though it may be a leading cause of death in children, pediatric cancer research is underfunded. “Less than four percent of the funding from the National Cancer Institute is given to pediatric cancer,” Kimberly says.

Kimberly Wade “To put it into perspective, prostate cancer gets seven percent.”

During his illness, Jonny was receiving adult chemotherapy but at a smaller dose.

It was ravaging to his body. Had he survived, he might not have grown to the height he was meant to be because of the radiation to his spine. There are even cancers associated with the treatment of pediatric cancer.

The KSHCF $75,000 donation was raised in less than a year through two fun runs, one held in Jerseyville, the other in Missouri, and a foundation gala held last September.

“We are trying to fulfill Jonny’s wish that no other kid have cancer,” Kimberly says.

“This is a good start, and we hope to keep going. Ultimately we want a cure, but in the meantime we need to look at better treatments that have less side effects,” Kimberly says.

Article source: Belleville News Democrat

Kimberly and Jon Wade with twin boys, Jonny and Jacky Photos courtesy of Kids Shouldn’t Have Cancer Foundation

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2016 year in review

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

  7

Lung

18

Heart

1

Heart/ Lung

19

Liver

26

Bone Marrow

1

Liver/ Lung

9

Kidney

81

Total Transplants Performed

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Guardians Magazine Summer 2017

Total Amount Raised

$19,776,962 84,756

18%

Corporate/Foundation

18%

Special Events

23%

Planned Giving

Individuals

Children’s Miracle Network

52,029

23%

Patient Care

57%

Gifts Supported

Emergency Department Visits

Research

2,253

Trips Made by the Transport Team

17%

Community Outreach

3%

Staff Education & Endowed Chairs

¹ I ncludes inpatient and same-day surgeries at Main Campus and Children’s Specialty Care Center ² Includes Main Campus and Children’s Specialty Care Center outpatient visits and Washington University Physician clinic visits

14,254 Surgeries Performed1

4%

16,211 Hospital Admissions

Source of Gifts 37%

Patient Days

269,409 Outpatient Clinic Visits2

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

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