St. Louis Children's Hospital Foundation Magazine - Spring 2023

Editor: Janelle Ammel | Janelle.Ammel@bjc.org

Dear Friends,

Tanya L. Waskiewicz

Chief Development Officer, St. Louis Children’s Hospital

Dear Friends,

Spring is such a wonderful time of year and is the breath of fresh air that we all need. It also means the children who are currently calling St. Louis Children’s Hospital home are finally able to spend more time outdoors in the Olson Family Garden. Since opening in 2000, the garden has provided an outdoor oasis where patients and families can surround themselves with beauty and serenity when they need it most.

As you know, when a child is ill or receiving treatment, it affects the entire family unit. The Center for Families is a physical space within the hospital that offers laundry, showers, coffee, snacks, meal vouchers, a resource library for medically accurate information and serves as the business center for families. There are also staff members who provide a sense of community and a shoulder to lean on when the days are overwhelming. It gives families a comfortable and safe place to decompress from the stressors of being bedside.

Support from our generous donors allows St. Louis Children’s Hospital Foundation to fund 100% of the operational costs, which includes keeping the family room open 24 hours a day, seven days a week, 365 days a year to service our families when they need it the most.

Over the last almost three years, we have all experienced unprecedented changes, upheaval and challenges in our lives. But one of the things that never wavered is St. Louis Children’s commitment to family-centered care. This is why donor-funded programs and services like the garden and the Center for Families are critical.

I could go on and on about the incredible ways we are able to support the patients and families at St. Louis Children’s, but it’s time to let you dive into this issue. I think you’ll find it full of amazing stories, many of which are only possible at St. Louis Children’s Hospital.

We are incredibly thankful for those who help make our work possible. As always, we look forward to reaching even more children and their families in 2023.

Warm Regards,

Tanya L. Waskiewicz

Members of our community showed the love for patients this Valentine’s Day as they ensured every child spending the holiday at St. Louis Children’s received a valentine with a personalized message. The online campaign brightened the day for many as they opened cards complete with kind messages of courage and hope.

The number of canine comfort teams is growing, and five new dogs joined the Purina Paws for Hope program at St. Louis Children’s Hospital. To celebrate, they held parades at the St. Louis Children’s Child Development Centers. The graduates of Duo Dogs, the hospital’s dog training partner, will provide a familiar distraction during challenging times.

St. Louis Children’s patient

8-year-old Maya recently donated 200 copies of her book, “Mighty Miss Maya,” to the hospital. The story features a fierce little girl who doesn’t let anything stand in her way as she and her dog face adventure and adversity. The books are being given out to St. Louis Children’s patients as a reminder of all they can accomplish.

The Nook Gifts & Gatherings, a Ladue-based shop that sells apparel, home goods, unique gifts and Missouri-made crafts, presented St. Louis Children’s Hospital with a $44,344 check benefiting the Child Life Services Department. The nonprofit shop donates 100% of its profits to St. Louis Children’s each year.

Back in December, patients from St. Louis Children’s Hospital joined Brayden Schenn on the ice for some holiday fun. Before lacing up their skates, the kiddos enjoyed pizza and hot chocolate and received their very own autographed Brayden Schenn jersey.

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.

For families like 5-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 leukemiarelated 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-its-kind treatment designed to fight the exact kind of AML he was diagnosed with at just 7 months old. 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 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! Dr. Bednarski and his NK1 trial have given the family hope not offered anywhere else. Weston’s AML has been in remission now for four years. He still receives monthly care at St. Louis Children’s for side effects of his stem cell transplant, but his parents are so appreciative for the chance to watch him grow up.

Left:WestonwithDr.JeffBednarski,whomthefamilycreditswithgivingtheirsonmoretimeto enjoybeingakidthankstoafirst-of-its-kindtreatment.

Improve Pediatric Behavioral Health by Breaking Down Barriers

St. Louis — and our nation — are experiencing a rising tide of behavioral health concerns. Sadly, children are among those who suffer the most. The mental health crisis has been referred to as the new pandemic, and St. Louis Children’s Hospital is proud to have several partners that allow the hospital to be part of the solution. Thanks to generous donors, St. Louis Children’s launched one of the largest community health strategies to improve children’s behavioral health in the St. Louis region in 2020.

The virtual school-based behavioral health services program keeps kids from ever reaching our doors — keeping them from experiencing severe mental health crises that require emergency care or hospitalization. It allows flexible and efficient services exactly when and how kids need them without the task of separately staffing each school. This no-cost, low-barrier access to therapy has numerous positive ripple effects that these children will carry with them into adulthood and to those they surround themselves with.

The top behavioral-health-related diagnoses made in St. Louis Children’s emergency department include mood disorders, suicidal ideation and self-harm. If these problems are left unaddressed, they can have a significant downstream effect on the healthcare system and society at large. Almost 60% of children in need of mental health assistance do not receive the treatment they need because of social stigma and lack of access to services.

National research has shown that for every $1 spent on early intervention, up to $10 are saved on future healthcare costs, criminal and juvenile justice costs, incarceration costs and low productivity.

The program included a professional team of social workers and counselors from St. Louis Children’s and professional partners at 17 local

schools in the St. Louis area. More than 34 administrators, school counselors, social workers and nurses worked together to ensure the community’s most at-risk children gain access to critical mental health services — all from the comfort and security of their own school.

Through six phases, students are identified and evaluated and then given a therapist to establish end goals. The hope is that students eventually achieve their goals and are discharged from therapy, but that’s not always the case. If not, students continue to work on their goals or are referred to an outside agency for more specialized care. Regardless of the student’s path, the support they receive is invaluable.

Since the program launched in 2020, more than 181 students participated in more than 1,116 sessions as they progressed toward their individual goals, and 100% of the students surveyed expressed a positive perspective on therapy.

These students don’t have to leave school or be placed on long wait lists to receive services, nor do they have to rely on insurance to pay for them. These are all barriers that have been eliminated to allow students to receive the help they need.

Thanks to the following donors who have made this program possible:

Robert Imbs

Pershing Charitable Trust

William R. Orthwein, Jr. & Laura Rand Orthwein Foundation

John Allan Love Charitable Foundation

Leona Stanford Vollintine Charitable Trust

The Dana Brown Charitable Trust

Hauck Charitable Foundation

John N. & Kathleen S. MacDonough Foundation

Thanks to the generosity of St. Louis Children’s Hospital Foundation donors, the program will continue to focus on St. Louis County schools and provide services free of charge over the next several years. If you would like to learn more about how you can support community programs, please contact Margo Newman at Margo.Newman@bjc.org.

Waiting for a Transplant Miles from Home

Providing solutions for those seeking the best care for their kids

Considering everything Zoe has gone through in her nine years of life, her outlook is remarkable. Rarely in a bad mood, the thirdgrader loves to dance and play practical jokes on her friends and family.

The first nine months for Zoe, the youngest child who has two older sisters and one older stepbrother, were typical. Her mom, Christina, said that she was always a quiet baby who slept a lot, but she wasn’t ever concerned about Zoe. Then one night she threw up and slipped into a coma. Zoe was subsequently diagnosed with propionic acidemia, an inherited condition in which her body cannot break down certain proteins and fats. Typically diagnosed through the newborn screening at the hospital, her case at the time was mild enough that it slipped through undetected. But the buildup of ammonia in her body was silently damaging her tiny body.

Zoe’sextendedstaywhileawaitingtransplantallowedhertobuildtrustwith hercareteamandevenhaveanactiveroleinhertreatmentplan.

After a stay at a hospital near their home in northwest Arkansas, her condition improved and she managed the metabolic disorder, for which there is no cure, through a lowprotein diet and medication. At age 5, she was diagnosed with cardiomyopathy that was treated with more medication, but when Zoe was almost 7, her heart health rapidly declined, and she went into heart failure. The family hoped to find the answer at a hospital closer to home but were told the transplant program could not accommodate the heart and liver transplant Zoe so desperately needed.

St. Louis Children’s Hospital could do both. Washington University physician Marion Ybarra, MD, first met Zoe when she arrived for her consultation in October 2020. A pediatric transplant cardiologist and assistant professor of pediatrics with Washington University School of Medicine, Dr. Ybarra was surprised Zoe had as much energy as she did given the condition of her heart. After spending a few weeks at St. Louis Children’s, the Heart Center team decided she could return home to Arkansas to give her heart some time to recover on its own and delay a transplant if possible.

Within a few weeks of returning home, the unthinkable happened — Zoe contracted COVID-19. Her already weakened heart couldn’t handle the virus, and she was rushed back to St. Louis Children’s, where she spent 40 days in the intensive care unit on extracorporeal membrane oxygenation (ECMO). “Ultimately we came to the conclusion that once she was placed on ECMO, the possibility of making a full recovery was slim to none given the severity of her dysfunction,” said Dr. Ybarra. As 2020 came to an end, her care team, consisting of the heart and liver transplant teams, geneticists and the National Institutes of Health, which was involved due to the rarity of her disease, placed her on the registry for a heart and liver transplant.

Unfortunately, there is no bridge to transplant device that is approved for mobility in a child Zoe’s age and size, so she could not leave the hospital while she waited for a heart and liver to become available. In the meantime, Zoe and her family made St. Louis Children’s home.

Thanks to donor-funded programs available to caregivers and families, Zoe’s mom and dad were able to stay with her the entire time. The Center for Families provided showers and a place to relax, while the hospital’s dedicated social work team ensured the family felt supported by providing necessary resources and guidance.

Because of Zoe’s long-term hospitalization, it was vital to keep her both physically and mentally strong as she awaited her transplant. Physical therapy, occupational therapy and expressive therapy were all part of her care plan, which kept her busy throughout the day. She also spent time with the St. Louis Children’s schoolteachers, who connected with Zoe’s elementary school back home to make sure she was staying on track academically.

The call finally came in late August 2021 that a heart and liver were available, and Zoe received the lifesaving transplant she had been waiting for. Now back home in Northern Arkansas, she is attending school full-time and loves being around all her family. This summer, she plans to attend donor-funded Camp Rhythm — hosted by St. Louis Children’s Hospital for children with heart defects — for the second year in a row.

Zoe’s mom was thankful that her daughter was at St. Louis Children’s. The pediatric transplantation program has been leading the way thanks to its close association with Washington University School of Medicine and its ability to retrieve organs from around the United States due to its Midwest location. But even so, an organ transplant is never a guarantee. “I can’t stress enough how important it is to become an organ donor,” said Christina.

Thedonor-fundedSchoolProgramatSt.LouisChildren’sHospitalsupportslong-termpatientslikeZoe andtheteacherswhoprovideimportanteducationalprogramminginadedicatedclassroominsidethe hospitaloratthebedsidewhenachildisnotabletoleavethehospitalroom.

Heartfelt Care Leaves a Lasting Impression

Making plans now ensures a bright future

Kate and Ken Fox met while attending Dartmouth College in New Hampshire. After getting married and working in education after graduation, they moved to Kate’s hometown of St. Louis when their first son was born. They continued to grow their family to include two more children, and Ken worked as an educator until he eventually retired.

In the fall of 2004, the family received shocking news no parent ever wants to hear. Their oldest son, Gregg, was diagnosed with a brain tumor. The tumor was successfully removed from his brain stem, and after five years of monitoring, Gregg was released from the hospital’s care. Even though their son was no longer a patient, the exemplary care offered at St. Louis Children’s Hospital left a lasting impression on the Foxes.

Through a series of meetings with Michael Geis of Thompson & Associates, the Foxes captured their values and priorities, outlined their intentions and protected their assets on a roadmap that would allow them take care of their family while remembering the institutions they feel strongly should have their support.

“While we’ll always be indebted to the individuals involved in Gregg’s care, we recognize the institution is something we want to support in the long run,” said Ken. For the Foxes, a combination of retirement and a new chapter as empty nesters led them to begin the values-based estate planning process — a service offered to St. Louis Children’s Hospital supporters that includes a confidential, comprehensive estate planning consultation at no charge and with no obligation. The process began with identifying what’s important to Ken and Kate through a questionnaire to gauge what values, dreams, goals, passions and people the Foxes consider important and how the couple wishes to be remembered. The plan will reflect those key issues.

Both Kate and Ken note their meetings with Michael were positive and productive. “Positive in the fact that we always left feeling good about our conversations with him,” said Ken. “Productive in the fact that we made good progress each meeting by understanding what we had accomplished and outlining the next steps.”

Kate and Ken agreed that the step-by-step planning was very helpful. “It never felt overwhelming, even though there were big decisions to make,” said Kate. They are very thankful for the opportunity St. Louis Children’s provided them as they planned for not only their future, but also the future of the hospital that provided them much-needed answers during a difficult time.

If you would like to start down your own planned giving path with St. Louis Children’s, please contact Carri Meyer at 314.286.0979 or Carri.Meyer@bjc.org.

Left:TheFoxesbegantheirjourneywithSt.LouisChildren’swhentheirsonwastreatedbythe hospital’s neurology team.

Right:Thankstotheirdesiretoplanforthefuture,KenandKateFoxworkedalongside professionals to create a values-based estate plan.

“While we’ll always be indebted to the individuals involved in Gregg’s care, we recognize the institution is something we want to support in the long run.”

Ken Fox

Offering the Best Care for Brain Tumor Patients

Experienced physician duo leads program gaining global recognition

Siteman Kids at St. Louis Children’s Hospital is home to the Pediatric Brain Tumor Center, which has the area’s largest multidisciplinary team of pediatric specialists — led by Washington University physician David D. Limbrick Jr., MD, PhD, and Mohamed Abdelbaki, MD. Together they ensure that each child receives a customized treatment plan that includes the newest and most advanced treatment options.

Dr. Limbrick is the T.S. Park, MD Chair of Pediatric Neurosurgery at Washington University and Neurosurgeon-in-Chief at St. Louis Children’s Hospital.

St.LouisChildren’spatientJackandhisparentsweregratefulfor Dr.DavidD.LimbrickJr.,picturedfarright.

He understands why research is vital to offer safer treatment methods, the latest clinical trials and specialized plans customized to each patient’s needs. Dr. Limbrick’s research focuses on the development of novel imaging and biological markers to improve diagnostic and therapeutic strategies for perinatal brain injury and neonatal hydrocephalus. While at St. Louis Children’s, he has published more than 180 peer-reviewed articles and has led several federally funded clinical trials.

Dr. Abdelbaki came to St. Louis Children’s Hospital in August 2020 and, with Dr. Limbrick, currently serves as co-director of the Pediatric Brain Tumor Center and an associate professor of pediatrics at Washington University.

He currently leads the early-phase clinical trials for the neuro-oncology program at St. Louis Children’s and is the principal investigator for several pediatric brain tumor clinical trials. Dr. Abdelbaki has developed a global neuro-oncology program at St. Louis Children’s, through which he collaborates with several institutions around the world and has consulted brain tumor patients across the globe. He leads an international neurooncology tumor board every month that is attended by neuro-oncologists from more than 27 countries to discuss the care and treatment plans of brain tumor patients.

Our Brain Tumor and Neuro-Oncology Program offers safer treatment methods, the latest clinical trials and a team focused on making treatment as easy as possible for your child and your family. Our holistic approach supports your child’s medical, psychological, educational and social well-being.

Parent’s Perspective

“We met Dr. Limbrick just 30 minutes after being told our 1-year-old son, Jackson, had a potentially fatal brain tumor. My husband and I were in total shock, but Dr. Limbrick brought an indescribable calm with him as he outlined the plan. Dr. Limbrick and the neuro-oncology team at Children’s carried us through it all. They never lost sight of Jack’s overall well-being, either. Throughout the course of his treatment, Jack faced several life-threatening complications. There were days it felt like we might not leave the hospital with our son, but Dr. Limbrick never wavered. With each setback, he was there to adjust the plan and reassure us that we could overcome it all. The level of trust he inspires is exceptional. Nine years after leaving the hospital — with our son — we’re still in awe of this incredible doctor. It’s difficult to put into words what Dr. Limbrick means to us. This June marks 10 years since we got his diagnosis. It’s obvious to anyone who meets Jack that St. Louis Children’s not only treated Jack’s cancer but every resource has been utilized to provide the best possible outcome for him as a kid.”

— Kellie, Jack’s mom

St. Louis Children’s is one of the ONLY hospitals in the nation that hosts an adaptive triathlon to champion kids on the move. Your donations empower athletes like Lebo to swim, bike and run to the finish at St. Louis Children’s Tri My Best creating memories that will last a lifetime. Visit S StLouisChildrens org/Lebo or scan the QR code to learn more about Tri My Best.

Generosity of Community Shines Through

Digital platform promotes personalized fundraising

Every year, individuals, families and groups of all ages want to support St. Louis Children’s mission to do what’s right for kids Through fundraising, they are providing care and assistance to kids and families who face challenges and uncertainties as they navigate illness or disease. Our online platform, Fundraise Your Way, allows donors to raise money and awareness using our website and tools — making it easier than ever.

Each personalized fundraising page can celebrate a birthday or another milestone, support an athletic event or even honor or remember someone special. There are six different types of pages to choose from, and once the type of page is selected, it’s time to personalize the page with a story, photos, videos and event details.

Former patient Camden decided to give back to the hospital in honor of his 12th birthday. He was born 10 weeks premature and spent about six weeks in the Newborn Intensive Care Unit at St. Louis Children’s. With the help of his mom, he created his own Fundraise Your Way page that shares his story and allows friends and family to easily make online donations directly to his cause. An avid soccer player, he is pledging donations based on the number of goals he scores this season.

In 2022, the Fundraise Your Way platform raised more than $53,000 for St. Louis Children’s thanks to dedicated donors who understand that pediatric care is complex. It requires child-friendly facilities and services that meet the unique psychological and emotional needs of children and their families. Unfortunately, the things kids need aren’t always covered by insurance, but fundraisers help us provide these additional necessities.

If you would like to start your own fundraiser on behalf of St. Louis Children’s Hospital, please visit Support.StLouisChildrens.org/FYW.

314.286.0988 or 888.559.9699 StLouisChildrens.org/Giving

Meet Our Champions!

St. Louis Children’s Hospital.

These Champions and their families are sharing their stories, celebrating medical milestones, advocating for others and fundraising on behalf of the hospital to advance the lifesaving discoveries of tomorrow at St. Louis Children’s.

We are proud to create an embracing community of supporters and friends who believe in our mission to do what’s right for kids.