Guardians Magazine: Spring 2021

Guardians Spring 2021

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

Fighting against all odds after horrific accident see page 10

Doing what’s right for kids

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Year in review 2020 impact report

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Groundbreaking treatments start with basic science

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Featured guardians of childhood

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

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buzzworthy

News from St. Louis Children’s Hospital

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year in review

2020 impact report

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big advances for our small patients

Groundbreaking treatments start with basic science

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the best care for our kids

Cover story: Fighting against all odds after horrific accident

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featured guardians of childhood

Supporting kids’ future is important to the Schoors

Please note: This publication includes photographs and images of subjects without masks. These were created before current CDC guidelines, and St. Louis Children’s Hospital continues to adhere to strict policies to keep patients, visitors and staff safe.

St. Louis Children’s Hospital Foundation 1001 Highlands Plaza Drive West, Suite 160 St. Louis, MO 63110 314.286.0988 888.559.9699 Copyright ©2021 StLouisChildrens.org/Giving

St. Louis Children’s Hospital President Dear Friends, Last year at this time we were experiencing great uncertainty. A novel virus had rapidly spread across the world, and here at St. Louis Children’s Hospital, we were preparing for what we thought would be weeks of temporary heightened restrictions.

Weeks turned into months and now here we are ­— officially past the one-year mark of the first patient with COVID-19 in the United States. Nationally, we have seen the world’s top scientists work feverishly to roll out not just one, but several vaccines designed to fight the virus. We have watched communities come together to support those in need in ways we never thought possible. And we have all experienced our share of heartbreak.

Whether losing a loved one, missing out on important milestones or witnessing local and national businesses shutter, this year has had a big impact on our mental and physical health.

But we have also spent the past year continuing to provide the best possible care for our patients and their families. The stories you will read in this issue are just a glimpse into the many ways we continue to transform pediatric medicine in the face of a pandemic.

Kids never stopped needing our help, and with your support, we have made incredible strides the past year.

Our community has continued to shower our staff and patients with gracious acts of service and assistance. Donations arrive weekly to show appreciation for everything our team does day in and day out. My heart was especially warmed when I read a card sent to us by a girl named Grace. Her note read: “If you’re reading this, it means you are important. No matter how insignificant you think your job is you are wrong. You spend your days helping people and risking your own life. You are working hard to help the country. For that you have my utmost respect.”

Grace is wise beyond her years, and her words ring true to not only everyone who works at Children’s but also those whose partnerships ensure that we continue to fulfill our mission to do what’s right for kids. Your philanthropic efforts play a significant role, allowing St. Louis Children’s to continue our groundbreaking work while facing unprecedented changes. While we do not know what the future holds, we look forward to the day we can all be together and share our successes. Until then, we hope the following pages will serve as a small way to say thank you for being part of our St. Louis Children’s Hospital family.

With gratitude,

Trish Lollo

highlights & happenings

The St. Louis Blues hockey organization, a committed partner of St. Louis Children’s, donated toys and gift cards to local restaurants over the holiday season. Snowflake Village, a donor-funded program that allows families to “shop” at no cost to them for every child in their family without leaving the hospital, used the toys to bring joy to kids spending the holidays in the hospital.

Children’s Miracle Network Hospitals teamed up with delivery service Shipt and Build-a-Bear to deliver 250 bears to patients at St. Louis Children’s Specialty Care Center in Town & Country, Missouri. The Valentine’s Day delivery from hospital partners brightened the day of patients and their families alike.

Dunkin’ Donuts is especially grateful to the healthcare providers who are on the front lines of the COVID-19 relief effort.

To brighten the spirits of our healthcare professionals, they sent more than 200 pounds of Dunkin’ ground coffee to St. Louis Children’s Hospital, one of the more than 85 hospitals receiving a special care package.

Circa Properties continues to bring joy to healthcare heroes on the front lines. Operation Sunshine, inspired by a local nurse who found joy in a patch of sunshine that came through a window each day during difficult times, brought snacks, encouraging artwork, a daylight-simulating “sun lamp” and balloons to the hardworking staff at St. Louis Children’s.

This Valentine’s Day, 177 donors raised $5,157 so that kids at Children’s could celebrate the holiday safely. Proceeds from the Facebook fundraiser went toward bedside crafts, balloons and treats for kids spending Valentine’s Day in the hospital.

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buzzworthy

Saving and Healing Lives Through Organ and Tissue Transplant For more than 40 years, St. Louis Children’s has partnered with Mid-America Transplant (MAT), an organization that enables adults and children to receive lifesaving gifts through organ and tissue donations.

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he transplant team at St. Louis Children’s works side by side with MAT to ensure the highest quality care for our patients and families and helps us fulfill our mission to do what’s right for kids.

St. Louis Children’s Hospital also honors the selfless act of organ and tissue donation every April during Donate Life Month, which encourages people to register as organ, eye and tissue donors while recognizing those who have saved lives through the gift of donation.

Our partners at MAT understand the importance of recognizing those who have donated the gift of life and are dedicated to bringing hope, healing and awareness to the lifesaving work of organ donation. They have chosen to collaborate with St. Louis Children’s on the creation of a memorial in the Olson Family Garden to honor pediatric organ donors and showcase words of hope and inspiration.

“The decision to donate provides lifesaving treatment, allowing our youngest recipients to experience life to the fullest,” said Stephanie Esses, Senior Program Manager, Transplant Services at St. Louis Children’s. “Organ recipients and their families have the life-changing opportunity to experience the joy of childhood. St. Louis Children’s Hospital thanks all the heroic families who have considered organ donation, and we hope to create continued awareness surrounding the many benefits of this powerful decision.”

Each personalized leaf acknowledges a different donor hero who has given the gift of life, and the tree will serve as a lasting tribute to their memory. The Mid-America Transplant Tribute Tree

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Guardians Magazine Spring 2021

The Mid-America Transplant Tribute Tree was dedicated on Tuesday, October 27, 2020, and included warm words from Trish Lollo, President, St. Louis Children’s Hospital and Diane Brockmeier, President and CEO, Mid-America Transplant.

will continue to “grow” over the next several years with additional names of donor heroes, providing a space for families to celebrate their gift. There are currently nine names on the tree, signifying nine families who displayed immense courage during their time of grief to heal and save lives.

To register as an organ, eye and tissue donor, visit SayYesGiveLife.org.

buzzworthy

New Program Will Assist With Cardiac Emergencies in Local Schools Each year, one in 50 schools in America is affected by cardiac arrest. Sadly, under-resourced St. Louis schools understand this tragic statistic, as several of their students have passed away in cardiac emergencies on their campuses.

But thanks to a generous gift from Ron Rubin Winery and The Republic of Tea owner Ron Rubin and his wife, Pam, 23,000 students in 30 St. Louis area public schools will have access to lifesaving emergency resources within the next five years through the Heart Safe Schools program.

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his program was created in partnership with St. Louis Children’s Heart Center, Washington University Division of Pediatric Cardiology and area schools, and will purchase automated external defibrillators (AEDs) and provide education and training for educators and staff in the region that will save lives during sudden cardiac emergencies on campus.

Ron, a southern Illinois native who calls St. Louis home, started the TRAINED FOR “SAVING LIVES” program, which provides AEDs to California wineries. He hopes to do Thanks to the support of Pam and Ron Rubin, local schools will now have the the same with a sustainable program resources to save lives in a cardiac emergency. to manage and prevent cardiac arrests in our community. This is something he has experienced firsthand, as Ron suffered a cardiac emergency while training for a marathon and was successfully resuscitated thanks to an AED. Seeing the impact of these devices on his own life, Ron has made it his mission to support cardiac health through his TRAINED FOR “SAVING LIVES” program.

The Rubins’ thoughtful donation to jump-start the Heart Safe Schools program will help kids for many years to come. By identifying at-risk patients, placing AEDs in schools, training staff and students and increasing community education on cardiac health, the team working together on Heart Safe Schools will make our kids safer.

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Year in Review 2020 Impact Report Thanks to the 10,602 donors who provided more than $21 million in funding to St. Louis Children’s Hospital.

Your Scientific Discovery Gifts at Work

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Medical fellowships funded

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Research studies funded

75,238

kids treated through

Your Family-Centered Care and Community Gifts at Work

2,570

Trips made by the Transport Team

18,126 Visitor

Kids received free dental care

1,877

Requests for medical information for parents, patients and the public

Music, art and dance therapy sessions provided

6,937

8,817

Visits to the inpatient and sibling playrooms and teen lounge and bedside Child Life sessions

Patient families received assistance through the family care fund

2,206

4,152

Students received screenings to identify undiagnosed or untreated health needs

1,081

Children served through community programs

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big advances for our small patients

Groundbreaking Treatments Start with Basic Science When a child is diagnosed with cancer, especially a cancer with few treatment options, families seek out physicians who are considered leaders in pediatric cancer research. They want a hospital that offers the latest and best therapies, which may only be available through groundbreaking clinical trials — often funded through generous donor support. But these trials require not only a sophisticated infrastructure with advanced imaging abilities and experienced doctors, nurses and research staff, but also a research collaboration like the one between St. Louis Children’s, Washington University School of Medicine and the Children’s Discovery Institute.

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Guardians Magazine Spring 2021

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or families like 3-year-old Weston’s, finding a trial for his acute myelogenous leukemia (AML) — a cancer of the blood and bone marrow — was a matter of life or death. AML accounts for about 18% of leukemia diagnoses in children but accounts for more than 50% of all leukemia-related deaths. Survival rates for kids diagnosed with AML are 65–75%.

Children who receive a stem cell transplant as part of their treatment plans have survival rates of only 40-50%, and for those with relapsed AML, the survival rate drops drastically to under 10%. Children diagnosed with AML currently have only two approved treatment options: high-dose chemotherapy and stem cell transplant.

Weston came to St. Louis Children’s after both options failed to put his cancer into remission and enrolled in a first-of-itskind treatment designed to fight the exact kind of AML he was diagnosed with at just 7 months old.

A Trial is Born While creating new immunotherapies for diseases such as AML is complex, the NK1 trial was based off basic scientific research at Washington University School of Medicine.

Megan Cooper, MD, PhD, Director of the Clinical Immunology program at Children’s, discovered in her lab that taking natural killer (NK) cells and pre-exposing them to a stimulation-mimicking infection allows them to perform their natural killing function better when called to duty a second time.

Essentially — these cells have memory.

That work captured the attention of Dr. Cooper’s husband, Todd Fehniger, MD, PhD, Professor of Medicine and Bone Marrow Transplant Specialist at Siteman Cancer Center, who knew that NK cells were particularly good at fighting AML. His lab went even further in their research, and after showing that human memory NK cells have a “supercharged” attack against leukemia, performed the first adult trial for patients with relapsed AML. Thanks to this new treatment, 67% responded positively and 47% achieved a complete remission. These

Above: Weston with Dr. Jeff Bednarski, whom the family credits with giving their son more time to enjoy being a kid thanks to a first-ofits-kind treatment.

At Right: Dr. Todd Fehniger and Dr. Megan Cooper are dedicated to collaborating with fellow physician-scientists for the benefit of pediatric research.

are the same patients who were told they were no longer candidates for any other therapies — the exact same news Weston and his parents received.

When Jeff Bednarski, MD, PhD, Assistant Professor of Pediatrics, Division of Hematology and Oncology, learned of the trial’s success in adults with relapsed AML, he wanted to bring the same trial to pediatric patients who have already unsuccessfully undergone a bone marrow transplant. Using NK cells from the same donor ensures the cells won’t be destroyed, since the donor and patient now share the same immune system.

The trial itself involved a round of chemotherapy to reduce the leukemia to give the NK cells the best possible advantage. Within two weeks of the start of chemotherapy, the patient receives an infusion of T cells and NK cells from the donor, which only takes a matter of minutes. After discharge, the patient and family must reside locally for three months for monitoring.

After a lot of ups and downs, Weston and his family received the news they so desperately had been searching for: Weston was officially in remission! No one knows exactly what the future holds for Weston, but Dr. Bednarski and his NK1 trial have given the family hope not offered anywhere else. Weston’s mom, Emily, puts it best when asked about her family’s experience with Children’s: “We are so grateful for that chance.”

To learn more about Weston’s journey at St. Louis Children’s, please visit StLouisChildrens.org/MeetWeston.

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the best care for our kids

Fighting Against All Odds After Horrific Accident You never expect to get a phone call like the one Bill and Michele received from their youngest son while out to dinner with friends.

It was January 24, 2020, and the news was shocking — their middle son, Gavin, had accidentally shot himself in the head at the family’s home. The next several hours are still a blur, but Bill and Michele rushed home and were met by a fleet of flashing lights. Michele and Gavin were quickly whisked away to the closest hospital while Bill stayed behind to speak with local police.

Gavin and his family will never forget their experience at St. Louis Children’s and are thankful for the exceptional level of care they received during Gavin’s five-month stay.

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hen Gavin arrived at the hospital, it was clear he needed more specialized care if he was going to survive. The paramedics worked to stabilize him inside the ambulance while a Children’s mobile intensive care unit was dispatched to bring Gavin and his family to St. Louis Children’s. The winter weather was simply too unpredictable that night to transport him via helicopter. Gavin needed help, and he needed it fast.

His parents remember arriving in the emergency department’s trauma room, where it resembled a television medical drama. “There were maybe 20 people,” said Bill of the scene when they met Sean McEvoy, MD, a pediatric neurosurgeon who delivered some devasting news. Dr. McEvoy would need to immediately remove part of Gavin’s skull to avoid brain swelling and give their son a fighting chance. Gavin had suffered a large amount of blood loss, and the bullet had traveled through both hemispheres of his brain.

Bill and Michele sat helpless in the emergency department waiting room while doctors worked to save their son, but didn’t see him again until the next morning in the pediatric intensive care unit.

He was heavily sedated and eventually placed in an induced coma to watch for increased intracranial pressure, a dangerous condition that can further injure the brain if left undetected. Miraculously, Gavin started to show signs of recovery.

But on day 10, Gavin experienced an aneurysm, a bulge or ballooning in a blood vessel in the brain, that ruptured. Doctors told his parents Gavin may not make it through the day, but somehow he clung to life. The pressure in his brain actually stopped the bleed on its own.

“We were back to square one,” said Bill.

A subsequent CT scan revealed the bullet had nicked an artery but hadn’t severed it.

Gavin would need surgery to fix the balloon that was forming. The biggest hurdle? He would have to be transported to Barnes

Everything that went wrong did, but just wrong enough that it could get fixed.

Gavin’s mom, Michele

Gavin was placed in a medical coma to allow his body to heal from his injuries.

Jewish Hospital next door before the balloon burst, and even then, the risks associated were huge.

In the end, the surgery was successful.

Just 13 days later, Gavin was extubated and breathing on his own. In Michele’s words, “Everything that went wrong did, but just wrong enough that it could get fixed.” Gavin continued to recover at St. Louis Children’s for several more months to allow his brain and body adequate time to heal.

Finally, on June 19, Gavin underwent his last surgery — replacing the section of his skull that had been removed five months earlier. It was a long and tedious journey that involved just about every program St. Louis Children’s offers. continued on next page

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Top: Gavin enjoys spending time outside in the Olson Family Garden with his caregivers and family.

Above: Gavin spends quality time with Casey, the Children’s facility dog, which helps boost morale during his recovery.

The teachers from the School Program worked with Gavin’s middle school and future high school so he would graduate 8th grade with his class and be ready for his freshman year of high school. The Ronald McDonald Family Room allowed Michele and Bill to do laundry, take a shower or grab a snack without leaving the hospital and, most importantly, take a break when they needed it.

“We treated it like a long vacation,” Michele joked when talking about the five-month stay she endured along with her son. During that time, Gavin’s mom spent just one night outside the hospital and away from her son.

“Everyone is collaborating, and everyone’s mission is to do what’s best for the patients,” said Michele when thinking of all the departments that worked together to give Gavin the greatest chance of a full recovery. For example, when Gavin was working with physical therapy to regain use of his left arm, Child Life brought their therapy dog, Casey, to give Gavin the motivation he needed.

Becoming more independent and still doing outpatient therapy, Gavin is now back home and adjusting to life as a normal teenager.

Bill and Michele credit Children’s with saving Gavin’s life. The partnership with Washington University, the level of care, collaboration and resources available are just some of the reasons they believe they made the best decision by transferring Gavin to St. Louis Children’s that night. “The level of care is just exceptional,” said Bill.

To learn more about how you can support family-centered programs like the Ronald McDonald Family Room, please visit StLouisChildrens.org/Giving or call 314.286.0988.

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Guardians Magazine Spring 2021

YOUR DONATION IS

MORE THAN A GIFT Every gift to St. Louis Children’s gives kids and their families access to world-class healthcare, scientific discoveries made by Washington University experts and innovative solutions for patients. Above all else, every donation helps us do what’s right for kids.

Give today at StLouisChildrens.org/Give © 2021, St. Louis Children’s Hospital. All rights reserved

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featured guardians of childhood

Supporting Kids’ Future Is Important to the Schoors Bob and Joan Schoor believe that children are the future, and through their generous gift, they are setting up subsequent generations to live healthier, happier lives.

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Guardians Magazine Spring 2021

St. Louis native Joan Schoor met her husband, Bob, at a cocktail party in 1976 that she had been invited to by her boss. After hitting it off, when Bob asked for her phone number, she told him to look her up in the phone book. After all, according to Joan, she wasn’t sure he’d bother. But he did, and they were married four years later.

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ob, also born and raised in St. Louis, graduated from St. Louis University after majoring in economics and political science and then served in the Air Force. He later went into business, focusing on real estate and investments. Meanwhile, Joan was building her own successful career and eventually landed at Washington University in the cardiothoracic surgery department before moving to Children’s. “Children’s has a special feeling that you just don’t get in adult hospitals,” said Joan, who was always so impressed with the doctors, nurses and staff and felt a sense of family the minute she would walk into the hospital.

After both Bob and Joan retired in 1993, Joan eventually returned to St. Louis Children’s in a volunteer role. With no children of their own, Bob and Joan wanted to show their gratitude for their good fortune and chose to focus on philanthropic efforts.

While Joan says the couple worked hard, made sacrifices and were prudent with their investments, they felt it important to share the wealth. “It just gives you a wonderful feeling to know that whatever you’re doing, you’re making a difference,” she said.

Together, the Schoors chose to focus their philanthropic priorities on both education and children in the local community. “I think St. Louis is a great philanthropic community that surprises a lot of people, and we hope St. Louis will continue down that path,” said Joan.

Because they were already familiar with the exceptional family-centered care and research taking place at St. Louis Children’s, they elected to establish the Robert E. Schoor and Joan Luttig Schoor Endowment for Pediatric Research that benefits the Children’s Discovery Institute (CDI) — the result of an intense commitment to bring about dramatic results in pediatric care by offering innovative, therapeutic treatments for patients who were previously considered untreatable. Their $2 million charitable bequest ensures they

I think St. Louis is a great philanthropic community that surprises a lot of people, and we hope St. Louis will continue down that path.

Joan Schoor

can make a big impact on kids’ health outcomes in the future.

The CDI is an invaluable resource that devotes funds to basic science research that turns promising concepts into real-world therapies that can save lives and improve patient care. Joan feels an immense amount of gratification when she talks to the physician-scientists and learns about the remarkable ideas they’re exploring. She hopes that with the help of their endowment, Washington University and St. Louis Children’s will continue to draw top-ranked doctors to the St. Louis area. She recognizes the long road that pediatric specialists take to complete their medical training and believes it takes a special type of person to show such dedication — the same type who will work relentlessly to make groundbreaking scientific discoveries with the help of donors like the Schoors. By including St. Louis Children’s in their estate plan, Bob and Joan are demonstrating a commitment to the future of their community, something that Joan encourages others to do as well.

Joan recognizes that there are a lot of remarkable children’s hospitals in the country, but that the CDI provides an area of expertise that others simply don’t have. “It’s such a great asset, and it’s something that should be fostered as much as possible,” said Joan of the CDI. “It’s not something we can afford to lose.”

If you would like more information on how you can include St. Louis Children’s Hospital in your estate plan, please email Jan Rogers at Jan.Rogers@bjc.org or call 314.286.0981.

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NONPROFIT U.S. POSTAGE PAID ST. LOUIS, MO PERMIT NO. 858

St. Louis Children’s Hospital Foundation 1001 Highlands Plaza Drive West, Suite 160 St. Louis, MO 63110 314.286.0988 or 888.559.9699 StLouisChildrens.org/Giving

Donate Your Car Today Turn your car into a tax-deductible gift to help kids at St. Louis Children’s Hospital!

We’ve partnered with Charitable Adult Rides and Services (CARS) to make this process convenient.

When you donate your vehicle, a representative from CARS will handle every part of the process and the proceeds will be directly distributed to St. Louis Children’s Hospital.

Visit StLouisChildrens.org/CarDonations for more information.