Glennon Magazine Fall/Winter 2020 by SSM Health Cardinal Glennon Children's Foundation

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Glennon Card: 10 Years of Support Page 38 Fall/Winter 2020, Volume 39, Number 2

VIEWPOINT

ear Friends of SSM Health Cardinal Glennon Children’s Hospital,

This year we celebrate the tenth anniversary of the Glennon Card program to benefit SSM Health Cardinal Glennon. When the Glennon Guild first presented the idea of a discount shopping card fundraising program in 2011, we had no idea how successful it would be. Even though this year has brought extraordinary challenges for our entire community, we consider it a testament to the Glennon Card program so many local restaurants, salons and shops participated in this year’s program. The Glennon Guild is committed to our mission of providing resources to fulfill the greatest needs of the hospital, directly impacting the Glennon patients and families. In the years since the program’s inception, Glennon Card has helped raise vital funds for many of the hospital’s programs and services, including the 3D Printing Center of Excellence, telemedicine equipment, Knights of Columbus Developmental Center and the Inpatient Cancer Unit, just to name a few. We are proud for the 2020 Glennon Card proceeds to once again benefit an area of the hospital’s greatest needs which includes supporting the new, state-of-the-art Milk Room in the Dana Brown Neonatal Intensive Care Unit. On behalf of the entire Glennon Guild, I would like to extend a VE SA VE SA0 heartfelt “THANK YOU” to all of 220% % Glennon Card the sponsors who underwrite Glennon Card the costs of the program, to the participating businesses who helped make this year’s Glennon Card a success, and to all who purchased a Glennon Card. Each of you is a valued partner in this important community program — “Shop Local to Support Local Kids.” We would not be where we are today without your generous and continued support! Glennon Card is just one of the exciting things you will read about in this issue of Glennon magazine. I consider it an honor to be involved with a hospital that takes its mission so seriously, that no matter where a child lives, what their medical diagnosis is, or whether or not their family can pay for services, they receive exceptional medical care at SSM Health Cardinal Glennon. Sincerely grateful,

Brigette McMillin President, Glennon Guild

Contents

54 14

22 38

FEATURES

10 14 20

Scoops of Fun Treats the Hospital

US News & World Report Ranked Among the Best

Glennon Gallop Patio Polo Edition

COVID-19

Glennon Golf Classic

Sun Run 5k & 1-Mile Run

Adapting in Uncertainty

Benefiting Music Therapy

Benefiting the Children’s Fund

32 38 43 48 52 54

DEPARTMENTS

Archbishop Carlson Retires after 11 Years Leading the Board of Governors

Glennon Card

AROUND GLENNON

GLENNON AROUND THE CORNER Our Impact Grows

Celebrating 10 years

12 Immunology

Find Out the Latest News

CORPORATE CORNER Heartland Coca-Cola

The Power of Science Against Such Enemies

GLENNON AMBASSADORS

Homers for Health

ASK THE EXPERTS

GLENNON FRIENDS

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Dierdorf-Pronger Golf 35 Years and Growing

How to Stay Connected

All About COVID-19

Supporting Cardinal Glennon Kids!

WHERE ARE THEY NOW?

Tiffany McGaughey

Hello ROSA! Robotic Technology Treats Epilepsy

ON THE COVER: A patient in the Dana Brown Neonatal Intensive Care Unit glennon.org Fall/Winter 2020 • 1

Glennon Volume 39 Number 2 Published semiannually by SSM Health Cardinal Glennon Children’s Foundation

BOARD OF GOVERNORS Most Reverend Mitchell T. Rozanski Chairman of the Board James G. Koman President Chrissy Nardini First Vice President David L. Taiclet Second Vice President Jack Schreiber Chairman-Investment Sub-Committee

As we close in on the final weeks of 2020, I hope you all have the opportunity in the coming days to pause, reflect and give thanks for the blessings we have received in spite of the adversity of the past year. We have all been impacted by the COVID-19 crisis in some way. For those who have lost loved ones this year, we extend our deepest sympathies. For those who have recovered from illness, we pray for your continued good health. Not a single person has been unaffected by the events of 2020, and we look forward to a better and brighter 2021. While SSM Health Cardinal Glennon has not been affected as significantly as hospitals that care for adults, the tightening of visitor policies, infection prevention measures and other operational changes have presented quite a challenge. Nonetheless, our staff has risen to that challenge, doing everything they can to serve the children and families who come through our doors.

James F. Whalen Chairman-Finance Molly N. Cline, PhD Secretary Sandy Koller President, Philanthropy Doug Long Assistant Secretary Steven Burghart Hospital President Charles Barnett Margaret Barrett Brian C. Behrens Tony Berg Galen D. Bingham Andrew P. Blassie Cheryl Boushka James G. Brennan Clayton Brown Anthony J. Caleca Joseph Caro Matt Carr Sherri Cliffe William M. Corrigan, Jr. Bob Costas John R. Costello Timothy Danis Dan Dierdorf John F. Eilermann, Jr. Douglas Fabick Mark Fronmuller Msgr. Vernon Gardin Dennis G. Gipson Kristin Guehlstorf Shawn Hagan Sherlyn Hailstone John F. Hefele John F. Herber, Jr. Edward D. Higgins Thomas E. Hilton Nicole Holland-Hong Leslee Holliday Dennis J. Jacknewitz

Dear Friends of SSM Health Cardinal Glennon Children’s Hospital,

Rusty Keeley Craig E. LaBarge James B. Lally John D. Lee Bob Leonard W. Dudley McCarter Thomas McMillin Dennis O’Connor, MD Christopher R. Pronger Douglas Ries John Ross, Jr. Sr. Mary Jean Ryan, FSM Shermini Saini, MD Molly Sansone Christopher A. Smith Steve Smoot Daniel J. Sullivan Bryan M. Swift Linda K. Tracy Gregory J. Twardowski Sumit Verma Raymond T. Wagner, Jr. Kevin L. Williams Jim Woodcock

In this issue of Glennon magazine, we will highlight some of the ways SSM Health Cardinal Glennon has adapted to the “new normal.” You’ll also read about our nationallyrecognized clinical programs that were ranked in this year’s U.S. News and World Report’s “Best Children’s Hospitals.” All of us at SSM Health Cardinal Glennon wish you and your loved ones “strength for today and bright hope for tomorrow,” as the hymn says. It is through your generosity that the exceptional care we provide is made possible. Every single one of you matters to every single child and family that relies on SSM Health Cardinal Glennon for care. On their behalf, thank you for helping us reveal God’s healing presence to those who need it most.

Sincerely,

Brigette McMillin President, Glennon Guild Michael Gilliam Chairman, Knights of Columbus Board of Visitors Joseph E. Stroot President, Development Board

To share a grateful patient experience, a donor story or a volunteer effort, please contact Todd Wise, Director of Marketing and Events, at 314-577-5605 or todd.wise@ssmhealth.com.

Sandy Koller Chief Philanthropy Officer SSM Health Cardinal Glennon Children’s Foundation

THEN

NOW

In 2017, we brought you the story of Conner Walkenhorst. Conner was diagnosed prenatally with heterotaxy, a condition in which the internal organs are abnormally arranged in the chest and abdomen. In Conner’s case, his heart was flipped and on the opposite side. Within 24 hours of Conner’s birth, he was transported to SSM Health Cardinal Glennon’s Neonatal Intensive Care Unit (NICU) and it was soon determined that he needed a heart transplant. Conner also had intestinal malrotation and asplenia conditions that would need to be addressed in addition to his sick heart. Conner’s new heart arrived two months after his birth and his road to recovery included multiple hurdles. You can read more about Conner’s journey with SSM Health Cardinal Glennon at glennon.org.

UPDATE Conner is typically VERY active and busy with Occupational Therapy, Physical Therapy, Speech Therapy, nursery school and fundamental skill development. Since getting his normal therapies in during these times has been challenging, Conner has been doing a lot of other activities to continue his development. Conner’s mom Jennifer states, “We are just looking at all the opportunities God is putting in front of us to get back to basics and nature! Each day brings challenges, but it also brings opportunities that we look over with our normal busy lives. We are enthusiastic with the gift of today, and the physical and mental growth we are blessed to see in Conner every day! Conner is showing active interest in eating which is amazing! He also started horseback riding lessons in September! These are big steps for his physical and emotional growth, and we see these as big steps forward in our journey!”

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Kendra Cares Goes Virtual

he Kendra Cares program continues to bring joy to our patients and their caregivers through the gift of Kendra Scott jewelry, even during the pandemic.

On Thursday, June 25, Kendra Scott hosted a virtual hospital visit, the first of its kind, with the help of facility dog Thor, Child Life specialists and Zoom. Anna Keenan, Regional Marketing and Philanthropic Manager for Kendra Scott, was able to participate remotely using an iPad and Zoom while Thor went room to room with her delivering signature yellow gift bags each with a special piece of jewelry. Kendra Scott donated 75 pieces of jewelry with coloring sheets and even provided Thor with his own Kendra Scott scarf as the designated host of the event. Attending virtually allowed Anna the opportunity to engage with patients and their caregivers at each bedside. As opposed to visits in the past, she was actually able to talk with patients in isolation who typically cannot see

outside visitors. Patients in the Bone Marrow Transplant Unit on 4 North, along with 3 South, were all able to participate. This visit made an impact on numerous patients as they opened their gift from Kendra Scott, conversed with Anna and waved at Thor. The joy was contagious. When speaking with Anna, she indicated this was the first virtual event for Kendra Cares and they plan to roll it out nationwide to reach more patients and families in other pediatric hospitals soon. Kendra Scott continues to be devoted to giving back and we are so grateful their partnership continues even in restrictive circumstances.

Critical Care Transport Team – On The Move!

hen a child is sick, injured or born too early, they need the very best care available, as quickly as possible. The staff at the Dan Dierdorf Emergency and Trauma Center at SSM Health Cardinal Glennon Children’s Hospital has the expertise to handle any

type of emergency, any time of day or night, seven days a week. When minutes matter, children arrive at the hospital with the help of the Critical Care Transport Team, a group of highly skilled paramedics, nurses and respiratory therapists who have advanced training in the safe care and transport of children of all ages, including premature infants. The Transport Team serves more than 120 hospitals throughout the region and is available around the clock. In addition to the teams based at SSM Health Cardinal Glennon, primarily servicing Missouri and Illinois, the hospital has partnered with the North Scott County Ambulance District and the Marion County Ambulance District to cover the northern and southern portions of the state of Missouri, as well as outlying

4 • SSM Health Cardinal Glennon Children’s Foundation

areas in Iowa, Kentucky, Ohio, Indiana, Tennessee and Arkansas. To further expand its mission, SSM Health Cardinal Glennon has purchased a fleet of Mobile Intensive Care Units, or MICUs. In contrast to a traditional ambulance, these state-of-the-art MICUs are equipped with the latest technology needed to care for critically ill infants and children. These larger vehicles also have room to safely accommodate multiple children, as well as safe seating for families to ride along. In the case of a life-threatening illness, a child can be stabilized in the MICU and then directly admitted to the hospital. A further benefit of the MICU is the ability to transport high-risk mothers and newborns together, allowing for increased bonding time before hospital admission. These transports will be staffed by blended maternal-infant teams, fully qualified to care for both mother and baby in any crisis that may arise.

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Community Zoom Panel Discussion

ike many others in 2020, SSM Health Cardinal Glennon was faced with a challenge to transition many things to a virtual format. That challenge included transforming how we approached engaging members of our community and how we make those adaptations effective for everyone. Seeing that challenge as an opportunity was what propelled us to think outside the box and helped to shape our first ever community Zoom event. The event included a moderated panel discussion on safe care during a pandemic featuring three expert SLUCare physicians from SSM Health Cardinal Glennon: Marya Strand, MD; Ken Haller, MD and Aaron Miller, MD. The physicians dove deeper into COVID-19 and what parents should know before children head back to school in the fall as well as what to expect when you go to visit your doctor’s office as new precautions have been set in place. Watch the Video This was the first of a planned series of discussions, so be sure to follow our social media to learn when the next discussion will be. To watch the first discussion by scanning this QR code.

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Books for Newborns

ooks for Newborns (B4N) has delivered more than 1,350 book bags to new mothers at SSM Health Cardinal Glennon since May 2018. Through a joint program with Ready Readers, who recently made a donation of 500 books for slightly older children, the two literacy organizations are committed to ensuring that area children are confident and competent readers and that they can pass state reading tests with Kim Eighmey (left), Manager of Child Life Services, flying colors by the time Mike Hogan (center), Chairman of Books for they reach the 3rd grade. Newborns and Angela Sears-Spittal (right), Executive Director of Ready Readers. Both organizations share the common belief that the best way to give children a real chance at success in school and in life is by opening their minds to all that is possible, unleashing the inquisitiveness within and developing useful vocabularies through a love of reading from their earliest days. Our Child Life Team is grateful to be a recipient of these book bags and our patient families love receiving them. “We are so thankful for our partnership with Books for Newborns. When a parent reads a book to their child, not only does it help promote a strong bond, but it also provides the child with a sense of well-being. This is especially crucial for infants in the hospital setting. The resources B4N provides are evidence-based, diverse and completely in alignment with our mission to help our smallest patients thrive” says Kim Eighmey, Manager of Child Life Services.

Nancy Fedak Ross Awards

eld on July 2, this annual award ceremony honors our exceptional nursing colleagues for their heartfelt care and dedication to our children. The awards are named for Nancy Fedak Ross, who years ago began work at SSM Health Cardinal Glennon on

ROOKIE OF THE YEAR: Madeline Cowell, BSN, RN, from 4 North

RISING STAR OF THE YEAR: Jess Nicholas, BSN, BA, RN, from TCU

2 South, which was then a burn unit. Her love for children was evident during her time here and she continues to support a variety of children’s causes throughout her post-Cardinal Glennon life. While the ceremony this year was restricted to only the nominees and one guest,

MENTOR OF THE YEAR: Erin Butler, MSN, RN, CPN, from 3 South

LEADER OF THE YEAR: Jennifer Glore, RN, from Danis Pediatrics

Nancy was able to join via zoom! Award categories included: Rookie, Rising Star, Mentor, Leader, Community Service and Exceptional Nurse of the Year. Several deserving nurses were nominated. Winners are seen below:

COMMUNITY SERVICE OF THE YEAR: Victoria Zanaboni, BSN, RN, from 4 North

EXCEPTIONAL NURSE OF THE YEAR: Maggie Klobe, MSN, RN, CPN from TCU glennon.org Fall/Winter 2020 • 5

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STAR-struck By Our Helicopter!

ayden Bevell made a simple comment after he helped members of SSM Health Cardinal Glennon teach a class in Columbia, Mo. this past summer. “Sure would be nice to see one of those medical helicopters up close,” he said as he looked at some local ambulances. And with that, coordinators of SSM Health Cardinal Glennon’s Special Needs Tracking and Awareness Response System (STARS) “kidnapped” Jayden while he was at the hospital for a bi-weekly infusion and took him on a tour of the hospital’s medical transport helicopter. “He was so excited that day,” said Karla Bevell, Jayden’s mother. “He still talks about it!” Jayden, 10, is a Boone County, Mo. “STAR” enrolled in a program created by paramedics and hospital personnel to identify and share information of children with special medical needs with emergency responders in their communities. The program educates and trains regional responders so that they are prepared in the event a STARS child has an emergency. The STARS team also coordinates an extensive database of critical medical information for every STARS child that is accessible by first responders during emergency calls. Jayden was diagnosed at birth with neurofibromatosis Type 1 (NF1). Since he was born, he was diagnosed and treated twice for brain tumors and other medical complications. He also has undergone 15 surgeries. Despite these, Mrs. Bevell says her son is a highly-active child. “On paper, with all of his medical needs, he might seem frail,” she said. “But he’s so full of life and loves to ride bikes and have fun. He was thrilled when we

“...He was thrilled when we were asked to help train local EMTs about the STARS Program.” were asked to help train local EMTs about the STARS Program.” He did such an excellent job that the STARS team decided to surprise Jayden with a tour of the hospital’s helicopter. After he completed an infusion therapy treatment, Jayden was suddenly surrounded by the hospital’s air transport team members and taken to the helipad to see the helicopter up close. SLUCare pediatric emergency medicine physician Steven Laffey, MD, also joined the group. “He kept saying ‘Holy cow!’ and he had such a huge smile on his face as he met the team and talked with the helicopter pilot,” said Mrs. Bevell. “He loved seeing ambulances and fire trucks before, but truly, he was so excited to see inside the medical helicopter and ask questions.” STARS has 596 children

STARS

enrolled in the program throughout Missouri and Illinois. It is highly successful and has been nationally recognized as a vital, collaborative community service. In addition to patients from SSM Health Cardinal Glennon, other hospitals are involved in the program. To date, thousands of first responders have been trained.  For Jayden and his mom, the STARS team is like an extended family. “It’s so hard to put in words what this particular day meant to us,” she said. “There are so many people at the hospital who have gone above and beyond to help us with Jayden’s medical needs. More than that, though, it’s the little things they do in addition to medical care, such as hugging us when we need it or taking a child to see a helicopter up close. The people are special here, and we just think they are so amazing.”

SPECIAL NEEDS TRACKING AND AWARENESS RESPONSE SYSTEM

STARS was created by experienced first responders and training is coordinated through and provided by SSM Health Cardinal Glennon, where experienced staff are acutely aware of the capabilities and limitations of first responders and community hospitals. Thus, making the relationship one of mutual benefit.

6 • SSM Health Cardinal Glennon Children’s Foundation

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Celebrities Giving Back 1

1 St. Louis native, magician and comedian Justin Willman chats with patients via ZOOM call. 2 | 3 Racing for Kids invited Indy 500 driver Santino Ferrucci to go room to room virtually with Glennon kids to talk what being a race car driver is really like and most importantly, how fast his race car can really go!

Ukulele Dad’s Club

he Music Therapy Program at SSM Health Cardinal Glennon has become very popular since its launch in 2018. Music therapy reduces stress and anxiety, alleviates pain and promotes relaxation for patients of all ages. Now, dads in the Dana Brown Neonatal Intensive Care Unit (NICU) are getting in on the action, too. Last fall, music therapist Kelli McKee started the Ukulele Dad’s Club through SSM Health Cardinal Glennon’s partnership with the Ukulele Kids Club, a national nonprofit that promotes the healing power of music. While many of the programs in the NICU focus on the well-being of mothers or the family as a whole, the Ukulele Dad’s Club gives dads a unique outlet for bonding and interacting with their child, as well as helping reduce their own stress. The program has been so successful that it earned national attention and was featured on The Today Show on June 19! While the group has been unable to meet in person due to COVID-19, dads are still learning songs and making recordings for their babies, allowing them to continue to be part of the healing process in a very special way.

glennon.org Fall/Winter 2020 • 7

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Glennon Around the Corner: Public Flu Clinic

AL N I RD A C

GLEN

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Cars began lining up down Park Avenue before 6:00 am

SM Health Cardinal Glennon Children’s Hospital has a long tradition of serving the community. Every fall, the hospital hosts a drive-through flu clinic, administering flu vaccines at no cost to those ages six months and older. Families come to the hospital’s overflow parking lot on Park Avenue — two blocks east of the hospital — to receive their vaccines and take part in special activities and games. However, due to social distancing and other safety measures, activities were limited this year. On Saturday, October 10, more than 500 adults and children received flu vaccinations. “We normally start letting people in at 8:00 in the morning,” says Kelly Riedel, BSN, RN, TNS, CPN, nurse coordinator and outreach educator.

“This year, we had so many people lined up that we opened up a little early!” Demand was so high for the limited supply of immunizations at this event that staff had to close the line after only 90 minutes. “We have never seen

on hospitals that are still treating COVID-19 patients.” The SSM Health Cardinal Glennon Safety Program was also on hand to inspect infant and toddler car seats for safety and size, and to provide a new

Demand was so high for the limited supply of immunizations at this event that staff had to close the line after only 90 minutes. a crowd like this,” continued Riedel. “I think the word has gotten out that getting a flu shot is going to be an important part of dealing with COVID-19. If more people are vaccinated against influenza, fewer people will become sick. Therefore, there will be less stress

Cardinal Glennon staff administered more than 500 vaccines in less than 2 hours

8 • SSM Health Cardinal Glennon Children’s Foundation

seat for families in need. Thanks to funding from Kohl’s Cares, eight seats were safety-inspected and five families received a new age-appropriate car seat. All parents received education about current infant and child passenger safety regulations and proper car seat installation.

Cassie Witte, CPSTI, safety program educator, and Rosalyn Fulton, CPST, inspecting a car seat

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UPDATE

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Fall/Winter 2019 Issue THOR UPDATE Our Facility Dog, Thor, has had a very busy first year! To date, Thor has provided a little over 2,000 hours of service. He has been consulted/referred more than 250 patient cases and sees an average of 30 patients each week. In addition to these impressive numbers, Thor has had many big milestones this last year. He has helped distract and calm children during IV changes, or during placement of IVs (and didn’t move a muscle, even with many noisy distractions). He has helped numerous patients meet medical goals necessary for discharge (resulting in shorter hospitalizations for those patients). For one 4-year-old patient, Thor was the only calming presence after a major heart surgery. His company encouraged a young tonsillectomy patient to eat and drink after refusing nutrition for four days straight. He has helped patients through tough physical and occupational therapy sessions, and memories and mere sightings of him have even had the power to help patients accomplish big goals when not directly at their side. This has been especially important as Thor continues his daily work during times of social distancing due to COVID-19. ZOEY UPDATE Accompanying Thor on this magazine cover was Zoey. Zoey was diagnosed with Acute Lymphoblastic Leukemia on July 11, 2019. Over the past year, Zoey’s mom, Katy, reports having many great celebrations! “Her hair is growing back, she finished 3rd grade (online due to COVID-19), she started the Maintenance Phase of treatment (which is the last two years of treatment), and we are beyond excited to say she remains in remission! She is looking forward to starting 4th grade, loves swimming and is quite the gamer girl! Thanks to Cardinal Glennon, she is living her best life!”

2021 UPCOMING EVENTS Join us at one of our many annual events or programs. Please visit glennon.org for more details!

Glennon Sunday Heart & Soul April 10, 2021

Glennon Sunday June 7, 2021

Wine, Dine and Divots | A White Hot Affair

Saturday, September 13

Glennon Gallop September 18, 2021 G ATES

OPEN AT

3:00 P . M . | K RÄFTIG P OLO C LUB

Presented in partnership with Columbia Golf Club

A 30 Year Tradition

Scoops of Fun May 22, 2021

Glennon Golf Classic September 10, 2021

Dierdorf Pronger Golf Classic October 11, 2021

glennon.org Fall/Winter 2020 • 9

SCOOPS OF FUN 2020

Scoops of Fun Treats the Hospital Benefiting the Footprints Program

hile the traditional Scoops of Fun event at the Magic House wasn’t possible due to the pandemic, the Development Board and SSM Health Cardinal Glennon Children’s Foundation turned it around by treating the hospital! Patients, families and employees at SSM Health Cardinal Glennon Children’s Hospital received special treats thanks to the generosity and the flexibility of our Scoops of Fun supporters. Not only did the special treats lift spirits and put smiles on many faces, but all proceeds from this special day benefited the Footprints Program. The Footprints team is dedicated to providing comfort, advocacy and support for children

with complex medical issues. As part of our family-centered holistic approach to care, mental health support is available to all members of the family, whether they are in the hospital setting or at home. Focus and attention is given to the unique emotional difficulties that arise for parents that are experiencing life with a child suffering from an advanced serious illness. The care coordination provided by Footprints addresses not only the child’s physical needs, but the emotional, spiritual and psychosocial needs of the entire family. The Footprints team interfaces with many specialty areas to provide comprehensive wraparound

10 • SSM Health Cardinal Glennon Children’s Foundation

services that involve everyone relevant to the care of the child to ensure communication is clear and concise between families and treatment teams. In addition to assistance with care plans, advance directives and care coordination, families benefit from a personal relationship with a clinical professional dedicated to their child’s well-being and quality of life. Special thanks to our Scoops of Fun presenting sponsors, McBride Home and Prairie Farms Dairy for continuing their support and a special thanks to Scoops & More, Chick-Fil-A and Andy’s Frozen Custard for providing the frozen treats and coupons to our patients, families and staff!

P RES ENTE D BY:

“Footprints has done a lot for our family - from financial help with gift card donations, to just being a listening ear. Haleigh has been at Cardinal Glennon pretty much her entire life and Footprints has been there for us from the beginning. Haleigh spent three months in the Neonatal Intensive Care Unit and six months going from the Pediatric Intensive Care Unit to the inpatient oncology unit. Someone from the Footprints team always took a moment out of their day to come check in. They were there to provide comfort when we received bad news and were there on good days to share in the joy. The Footprints team has definitely made this journey as easy as it can be and we never feel alone. Thank you, Footprints for all you have done and continue to do on a daily basis.” -The Hahs Family

glennon.org Fall/Winter 2020 • 11

CORPORATE CORNER

L to R: Lyman Garrett, Shawn Anderson, Patrick Danneger and Travis Sarich of Heartland Coca-Cola (front row) visit with Homers for Health supporters Adam Wainwright, Tyler Lyons and Matt Carpenter of the Cardinals.

Heartland Coca-Cola

he “Glennon Factor” was the deciding factor. The Coca-Cola Company’s regional division had been a supporter of SSM Health Cardinal Glennon Children’s Hospital since 2013. When a new company called Heartland CocaCola purchased those operations, transitioning managers asked their new executives to consider a continued relationship with the hospital. Heartland bottles and distributes the company’s beverages in Kansas, Missouri and southern Illinois. Rick Frazier, Heartland’s president and chief operating officer, met with an The SSM Health Cardinal Glennon Children’s Foundation team early in 2017. Also present were Travis Sarich and Matt Bynum, who had been linking Coca-Cola and the foundation for four years. “We wanted to tell them, ‘This is our opportunity. This is our strategy. This is one of the largest and most visible partners we have in St. Louis and this is important to our community,’” said Sarich, senior director of sales and service for Heartland.

The foundation proposed a new and far more significant partnership for Coca-Cola. “The foundation team went through all of their information on Cardinal Glennon,” Sarich said. “We felt that we needed Rick to be in the room to hear about the powerful work the foundation does at the hospital, from The Costas Center to the intensive care units to the actual kids themselves. “These were true stories of specific families that are impacted in St. Louis. We were thinking about what it means for Heartland to be a local company with 2,200 employee families and how that connects with the families of the patients at Cardinal Glennon. Heartland and the hospital are living the same mission and the same values. That resonated.” Heartland was asked to serve for two years as the presenting sponsor of Homers for Health, one of the hospital’s key fundraising activities. The people sitting around the table waited anxiously for a response, Sarich said.

12 • SSM Health Cardinal Glennon Children’s Foundation

Shawn Anderson and 2019 Homers for Health patient Co-Chair Luke Beck with former Cardinals pitcher Jason Motte.

“Rick said, ‘We want to be etched in this community and we want to be part of Cardinal Glennon. We are not in this for two years, we are in this for five.’ He looked down the table at me and said, ‘Let’s make this happen.’” Bynum, now general manager of Heartland Coca-Cola’s St. Louis Hometown, believes Frazier was touched by the hospital’s mission and role in the St. Louis community. “Once you experience the ‘Glennon Factor,’ you know exactly what the hospital is about and what the goal is at the end of the day. You want to be a part of it,” Bynum said. “If we want to be embedded in the community, what is a better program for being connected than kids?”

Homers for Health Homers for Health (H4H) is a fundraising program conducted in association with the St. Louis Cardinals baseball team to support patients and families at the hospital. Cardinals fans may make a single contribution to H4H or pledge a certain amount for every home run hit by the Cardinals during the season. Homers for Health, founded by former Cardinal Matt Holliday and his wife Leslee in 2012, has raised more than $6 million from SSM Health Cardinal Glennon supporters around the world. The program has helped create new child-friendly spaces including the Imaging Center, the Pediatric Intensive Care Unit and the Inpatient and Outpatient Cancer Units. The 2020 H4H Co-Chairs are Cardinals Matt Carpenter and Paul DeJong and 10-year-old patient Kennedy Burger, a recent kidney transplant recipient. Due to the shortened baseball season caused by COVID-19, this year’s pledge request was based on the number of beds in the hospital — 195 — rather than the team’s home runs. The Cardinals average about 200 home runs in each full-length season. H4H works for Heartland as a business strategy as well as a community support program, Sarich said. Coca-Cola has been a St. Louis Cardinals partner for 55 years. The SSM Health Cardinal Glennon Children’s Foundation is engaged with other Coca-Cola business partners such as Dierberg’s Markets and the Phillips 66, Petro-Mart and Fastlane service stations. “When you start connecting those dots, things come to life and take off,” Bynum said. “This is the definition of how a partnership should happen.” St. Louis History Coca-Cola was created in 1886 by Atlanta pharmacist John S. Pemberton. His bookkeeper, Frank Robinson, drew the name in the

Heartland Coca-Cola’s president Rick Frazier, holding the game ball, walks with Cardinal Glennon patient Lily Yank (in stroller) during the 2017 Game Ball Relay.

flowing script that has become one of the world’s most recognized trademarks. Coca-Cola sales rose from 9,000 gallons of syrup in 1890 to 370,877 gallons in 1900. In 1904 Coca-Cola was considered the most popular brand in America, due in part to its exposure at the 1904 St. Louis World’s Fair. Here the company practiced the marketing tactics that pushed it ahead of competitors in the then-growing soft drink industry. “The first marketing efforts in Coca-Cola history were executed through coupons promoting free samples of the beverage,” states a company history. “Considered an innovative tactic back in 1887, couponing was followed by newspaper advertising and the distribution of promotional items bearing the Coca-Cola script to participating pharmacies.” Coca-Cola souvenirs from the World’s Fair, like many Coke items, are considered highly collectible. Heartland Coca-Cola is owned by Junior Bridgeman, who won the 1971 Indiana state basketball championship while playing at Washington High School in East Chicago, Indiana. At the University of Louisville he went to the Final Four of the 1975 NCAA Division 1 Basketball Tournament. He was inducted into the Missouri Valley Conference Hall of Fame in 2009.

After college he played in the NBA for 12 seasons, beginning and ending with the Milwaukee Bucks and including two seasons with the Los Angeles Clippers. Bridgeman purchased some of the Midwestern operations of the Coca-Cola Company and formed Heartland Coca-Cola, which manufactures and distributes soft drinks, sports drinks, waters, fruit juices and energy drinks. The company operates from one production facility and 17 distribution facilities with 2,200 employees. Bridegman’s mission statement for Heartland concludes, “We will be a positive influence and active participants in the communities in which we operate. This will ensure the profitability of our company by measuring the dedication, success, and trust of our people, the growth of our customers and their partnerships with us, and the way our communities regard us.” Bridgeman also has participated in an annual activity associated with Homers for Health, the Game Ball Relay, that precedes the first Cardinals home game of the season. The relay gives hospital patients and supporters a chance to carry the actual first pitch ball for the season through the streets of St. Louis to Busch Stadium. Bridgeman carried the ball in 2017. glennon.org Fall/Winter 2020 • 13

RANKED AMONG THE BEST — and you helped!

14 • SSM Health Cardinal Glennon Children’s Foundation

We’re celebrating! U.S. News & World Report has ranked SSM Health Cardinal Glennon Children’s Hospital among the country’s Best Children’s Hospitals! The 2020-2021 rankings, which were announced in June, recognize the top 50 pediatric facilities across the United States in ten specialties, including cancer, cardiology and heart surgery, diabetes and endocrinology, gastroenterology and gastrointestinal surgery, neonatology, nephrology, neurology and neurosurgery, orthopedics, pulmonology and lung surgery, and urology. Only 88 hospitals out of 200 medical centers in the country were ranked in at least one specialty. SSM HEALTH CARDINAL GLENNON RANKED IN SIX SPECIALTIES: Cancer Cardiology & Heart Surgery Gastroenterology & GI Surgery Neonatal Care Pulmonology Urology “These national rankings reflect the extraordinary care that children from both St. Louis and the region receive at SSM Health Cardinal Glennon,” said Marya Strand, MD, the hospital’s chief medical officer. “This recognition is directly due to the quality initiatives and teamwork of the nursing staff and SLUCare providers that care for the children here. We are so proud to have achieved this milestone in recognition.”

U.S. News & World Report (USNWR) is considered a leading authority of hospital rankings based on clinical data related to the overall quality of patient care, infection prevention and control, and nurse staffing adequacy. More than 15,000 pediatric specialists are surveyed annually and asked where they would send children for care in their specialty. Ben Harder, U.S. News’ managing editor and chief of health analysis, says, “The Best Children’s Hospitals rankings are designed to help parents find quality medical care for a sick child and inform families’ conversations with pediatricians.”

“These hospitals are the best of the best that help parents find the right care for the sickest children.” U.S. News & World Report This is not the first time SSM Health Cardinal Glennon has been ranked among USNWR’s Best Children’s Hospitals in various specialties. This year’s recognition comes on the hospital’s heels of also achieving Magnet® accreditation, the highest honor in nursing excellence. That designation was awarded by the American Nurses Credentialing Center in December 2019. “SSM Health Cardinal Glennon aspires to our Mission: Through our exceptional health care services, we reveal the healing presence of God,” said hospital president Steven Burghart. “This latest recognition and our recent Magnet® designation offers the public proof of our exceptional healthcare. Furthermore, our values glennon.org Fall/Winter 2020 • 15

US NEWS & WORLD REPORT RANKED AMONG THE BEST

challenge us to offer the highest quality care for every member of our community regardless of their ability to pay.” YOUR CRITICAL ROLE IN OUR SUCCESS Achieving national recognition for the care we provide is something we share proudly with our physicians, nurses, staff and patients and all of those who support SSM Health Cardinal Glennon Children’s Foundation. “We are incredibly grateful to the Foundation and its donors who support a wide range of clinical care, research and quality initiatives throughout the hospital,” said interim chief of pediatrics and SLUCare gastroenterologist Jeffrey Teckman, MD, director of the hospital’s division of gastroenterology and the Drs. James and Patricia Monteleone Endowed Chair in Pediatric Gastroenterology. Dr. Teckman heads one of the divisions ranked by USNWR. The division’s gastroenterologists and hepatologists team is internationally-recognized for research and patient care with a

wide range of medical conditions, including childhood nutrition problems, motility disorders and liver diseases. During his career, Dr. Teckman has championed patient care quality improvement initiatives and clinical research to advance treatments for multiple diseases, not only in his specialty, but also in others. In 2013, he joined with then-hospital president Sherlyn Hailstone and former chief of pediatrics and SLUCare pulmonologist Robert Wilmott, MD to advocate for a special “Signature Fund” with the SSM Health Cardinal Glennon Children’s Foundation that would support research, education and quality initiatives within the hospital. “To date, thanks to those who have given generously to the

16 • SSM Health Cardinal Glennon Children’s Foundation

Foundation, we have been able to transfer more than $10 million to the hospital through the Signature Fund,” says Sandy Koller, chief philanthropy officer at the Foundation. “Through this and many other efforts, we know that everyone who has contributed to the Foundation is a true partner in the hospital’s efforts to continuously focus on excellence in everything we do to care for the children in our communities.” Contributions have gone toward equipment and technology purchases, research staffing, large and small quality programs and the cost of residencies and fellowships that train pediatric specialists and subspecialists at SSM Health Cardinal Glennon. All are among the criteria used by USNWR to rank the best hospitals in the country.

“The divisions of pediatric cardiology and heart surgery have achieved USNWR national rankings for eight consecutive years,” said Kenneth Schowengerdt, Jr., MD, chief of the division of pediatric cardiology. “This ranking reflects the dedication and teamwork of the SLUCare physicians and the hospital’s nursing and ancillary staff in caring for children. Over the years, the addition of stateof-the-art facilities and equipment ranging from a hybrid cardiac catheterization/operating room to a 3D printing center that enables us to create models of complex cardiac anatomy have been possible, in part, through the generous contributions of donors and funding through the Foundation.” High definition video technology and state-of-the-art video recording and streaming capabilities were added to all of the hospital’s operating rooms several years ago, thanks to Foundation support. “This allows us to save surgical photos and videos for patient education, student/resident teaching and presentations at academic meetings,” said Barry Duel, MD, director of the division of pediatric urology. “I think that ability is going to be used more and more in the post-COVID pandemic future. And while there may be children’s hospitals with operating rooms that equal ours, I can confidently say that there are none better.” Promising clinical trials for children with cancer is also funded mainly through industry support and contributions from

the Foundation. “Their help enables us to hire clinical research associates and quality managers, both of which are essential for us to participate in research consortia such as the Children’s Oncology Group and the Pediatric Blood and Marrow Transplant Consortium, as well as maintain our bone marrow transplant program’s accreditation through the Foundation for Accreditation of Cellular Therapy,” explained SLUCare cancer specialist William Ferguson, MD, director of pediatric hematology-oncology. “Those positions also were essential in our recent approval as a Chimeric Antigen Receptor T-Cell (CAR-T cell) program, which enables us to offer advanced immunotherapies for our patients.” Blakeslee Noyes, MD, a SLUCare pulmonologist and director of the division of pediatric pulmonary medicine, agrees that donor support can be linked to the USNWR ranking, in part, because of funding for his division’s clinical trials unit. “This has allowed us to access new and cutting-edge therapeutic agents that have the potential of making a tremendous impact on the health of our patient population,” he noted. “Without that critical funding, our ability to participate in these very important multicenter studies would be compromised.” USNWR’s highest-ranked specialty at SSM Health Cardinal Glennon is neonatal care services. The program includes 17 boardcertified neonatologists, 40 advanced nurse practitioners, and more than 200 registered nurses who provide care to critically ill

newborns in the hospital’s 65-bed, all private room, Level IV Neonatal Intensive Care Unit (NICU). “The ranking is a prestigious honor,” says SLUCare’s Amit Mathur, MD, medical director of the NICU. “It reflects a common purpose and pride that every individual here has in taking care of our patients and families.” Among the activities that Dr. Mathur credits for the high ranking are the team’s longstanding focus on continuous quality improvement initiatives — supported by SSM Health Cardinal Glennon Children’s Foundation — that have improved the safety and quality of care for criticallyill infants. “For example, we have weekly multidisciplinary meetings with physicians, advanced practitioners, respiratory therapists and nursing leadership to identify progress with quality and safety goals and discuss the implementation of new initiatives,” he said. Initiatives include an ongoing focus on reducing central lineassociated bloodstream infections (CLABSI) and the number of unintended extubations (UEs), both of which are indicators of the quality and safety of care and tracked by USNWR. Through collaborative efforts, not only are these adverse events low, but the team strives to maintain evidencebased best practices optimizing the outcomes of NICU patients. “There are so many areas throughout the hospital where our successes have been made possible by support from the Foundation,” noted Dr. Teckman. “We have some of the best physicians, nurses and ancillary staff, and they are all committed to excellence, but we can truly say that the continuous support of the Foundation enables faculty, their divisions, and their fellows to conduct research and provide premier patient care, which helps us to achieve national recognitions such as Magnet® and USNWR.” glennon.org Fall/Winter 2020 • 17

Big recognition helps Big smallest recognition helps our patients. our smallest patients. Nationally ranked care close to home. At SSM Healthranked Cardinal Glennon Children’s Hospital, our SLUCare Nationally care close to home.

physicians are proud to deliver compassionate, expert care to all our pediatric patients. At SSM Health Cardinal Glennon Children’s Hospital, our SLUCare We offer sixare nationally pediatric specialties: Cardiology & Heart Gastroenterology physicians proud ranked to deliver compassionate, expert care to all Surgery, our pediatric patients. & GI Surgery, Neonatology, Oncology, Pulmonology, and Urology. We offer six nationally ranked pediatric specialties: Cardiology & Heart Surgery, Gastroenterology Our partner with you to ensure the best outcomes for patients entrusted to our care. & GI providers Surgery, Neonatology, Oncology, Pulmonology, and Urology. Working together, we can provide the most advanced health care for every child. Our providers partner with you to ensure the best outcomes for patients entrusted to our care. Please visit us at cardinalglennon.com to learn more about exceptional pediatric Working together, we can provide the most advanced healthour care for every child. specialty care. Please visit us at cardinalglennon.com to learn more about our exceptional pediatric specialty care.

Ways to Give Create a personal legacy that brings lasting hope and joy to a child:

Ben

efic

iary

PARTNER WITH US TODAY:

GIFTS YOU CAN MAKE TODAY:

AFTER YOUR LIFETIME GIVING:

• Charitable Gift Annuities

• Outright gift of cash

•W ill or Living Trust beneficiary

• Charitable Lead Trust • Charitable Remainder Trust • Charitable Remainder Annuity Trust • Donor Advised Funds • Volunteer

• Securities now or later • Life insurance • Real estate gifts now or later • Outright gift of appreciated securities or property now or later

•L ife Insurance beneficiary •R etirement Plan Gift beneficiary • Life Estate Agreements A personal residence, land or farm

• Savings Bonds now or later • Corporate Matching Gift

“ As we raised our children, it was always of great comfort to know that Cardinal Glennon was there if a medical need or an emergency arose. Although we never had to utilize the exceptional care provided at Cardinal Glennon, we give to Cardinal Glennon to make sure that all children are cared for, regardless of their family's ability to pay.” — Rosalyn & Vernon Pursley

SSM Health Cardinal Glennon Children’s Foundation 3800 Park Avenue, St. Louis, MO 63110 314-577-5605 or 1-800-269-0552

glennon.org

GLENNON GALLOP 2020 - PATIO POLO EDITION

Glennon Gallop - Patio Polo Edition

Benefiting the Danis Pediatric Center at SSM Health Cardinal Glennon

hen living through a global pandemic, live events — including fundraisers — have to adapt to the world around us. While the exciting polo match, VIP Experience and Field-Side Party with Glennon Gallop has to wait another year to recur, funding remains vital to The Danis Pediatric Center. Patio Polo packages were created to bring the fine wines and fun of Glennon Gallop to the donor’s doorstep! Donors chose between two party packages: Patio Polo for 10 to equip them with everything they need to host their own party or Patio Polo for 2 for a more intimate experience. For our party hosts, the box included a catered assortment of appetizers for their guests. Both options contained fine wines, bourbon for their Manhattans, customized chocolates and a polo-

themed horse racing game. In either case, the host had everything they needed to indulge on September 19! Ken Haller, MD, SLUCare physician, was the host for the evening. As a long-time pediatrician with SSM Health Cardinal Glennon Children’s Hospital, his passion for helping families shone through as he led donors through the virtual program. From the comfort and safety of their own home, guests heard from Heidi Sallee, MD, SLUCare physician and Medical Director of Danis Pediatrics, learned about the PHASE program at Danis Pediatrics and were introduced to Brittney Buford and her children King, Kherris and Khamora Bell. Buford was a Cardinal Glennon kid – and Danis Pediatrics patient – herself. When it came to her children’s care, Danis Pediatrics was the natural choice.

20 • SSM Health Cardinal Glennon Children’s Foundation

P R E S E N T E D BY:

T. Danis Charitable Trust

Thank you Gallop Supporters!

1 (L to R around circle): Gregg and Laura Hollabaugh, Andy Vien, Sam and Chri s Vince, Alex and Maddie Roedner

2 Glennon Gallop Co-Chairs Claire and Michael Todorovich

One of the favorite things that has happened since we got involved with Cardinal Glennon is the Glennon Gallop! When we were asked to get on board with combining two of our favorite things, it was an easy and resounding yes! The St. Louis community gets to enjoy a fabulous day of polo and support our Glennon kids all at once! Doesn’t get much better than that! — Molly and Doug Sansone

3 Chris and Lauren Pronger

Her children receive a wide variety of care at Danis Pediatrics. While her 2 1/2-year-old son King is a healthy Danis Pediatrics patient, her twin girls, Kherris and Khamora, require more complex care. The two girls were born early at 27 weeks, weighed roughly 2 pounds each and had holes in their hearts. While Khamora outgrew this with medication, Kherris required heart surgery at SSM Health Cardinal Glennon. Kherris was eventually discharged with oxygen, a gastrostomy button for gastric feedings and therapy services. Buford shared that the care her children receive is seamless. Danis 5 Pediatrics easily cared for both her well children and her complex child all in one building. “I know I can call up here ANY time and ask ANY question, and I will be taken care of. They help me coordinate everything I need, and they built a trust with me,” Buford shared. Both girls had their 18-month check-ups this summer and Kherris has not needed hospitalization since early March. Buford and her children are just one example of the

thousands of families seeking care from Danis Pediatrics. Thanks to our generous sponsors, including Christi and Billy Busch and the T. Danis Charitable Trust — along with all our supporters — the funds raised at Glennon Gallop make a direct impact on the families served by Danis Pediatrics by helping sustain programs such as PHASE (Promoting Health and Social Equity). This program is a care model that addresses social factors during clinic visits. Issues like poverty, food insecurity, mental health and language barriers can have a profound impact on a child’s health. These barriers aren’t always seen unless the family is asked. That’s where PHASE comes in — physicians proactively ask and look for these barriers and then connect families to appropriate resources that fit their specific needs. As of December 2019, there have been 563 referrals for various support services including job assistance, childcare programs, back to school events, SNAP application and recertification and other emergency needs.

The Orthwein Family supports Cardinal Glennon because they are so focused on taking care of children. Danis Pediatrics partnered with The Glennon Gallop is a perfect example. All children receive services regardless of having the resources. — Ginny Orthwein

glennon.org Fall/Winter 2020 • 21

WE RISE: A D A P T I N G I N U N C E R TA I N T Y

An outbreak of a novel strain of coronavirus (COVID-19) is identified in Wuhan, China.

DEC 2019

President Trump declares a nationwide emergency, making federal aid available to areas affected by COVID-19.

President Trump declares a public health emergency for the United States.

JAN 30, 2020

The World Health Organization declares a Public Health Emergency of International Concern.

It goes without saying that the year 2020 will go down in history like few others in recent memory. Practically every sector of business has been impacted, as well as education, health care delivery and even the way we interact with our friends and family. Throughout the early months of 2020, state and local officials held regular meetings with leaders from each of the major health systems in the St. Louis metro area. In early March, St. Louis County launched a website that would host centralized information and updates. On April 5, the St. Louis Metropolitan Pandemic Task Force held its first official briefing with SSM Health’s own Alexander Garza, MD at the helm. As cases of COVID-19 began to increase in the St. Louis area, local health care leaders made the decision to act swiftly and decisively. On March 12, SSM Health

MAR 11, 2020

JAN 31, 2020

MAR 13, 2020

COVID-19 is recognized as a pandemic by the World Health Organization.

Cardinal Glennon Children’s Hospital activated Incident Command protocols. “We have this protocol in place for large-scale disaster events that are more acute in nature, like a bus crash with multiple injuries or severe inclement weather,” says Josh Dugal, trauma program manager at SSM Health Cardinal Glennon. “These events usually last a couple of hours or a couple of days. With COVID-19, we knew this was going to be more long-lasting.” During a disaster event, doctors, nurses, hospital leaders and support staff are assigned roles within Incident Command. As a Level I pediatric trauma center, SSM Health Cardinal Glennon is positioned to respond to any type of emergency. Dugal typically serves as the public safety liaison, keeping in constant contact with first responders so that the hospital can be prepared for any children coming to the Emergency Department with injuries. “This time around, I became more of a community liaison. The outpouring of support has been amazing. We funneled donations of food, PPE and other gifts through Incident Command,” Dugal says. “Additionally, we had a lot of businesses, clubs and other groups reaching out to us for guidance on

WHO MAKES UP INCIDENT COMMAND? • Incident Commander • Planning Officer • Logistics Officer • Financial Officer • Safety Officer • Public Relations Officer • Operations Officer • Subject Matter Experts • Scribe

how to keep their kids safe. SSM Health Cardinal Glennon became the ‘go-to’ for people who didn’t have anyone else to talk to.” At the peak of the crisis, Incident Command was operating 10-hour days during the week with a team on-call over the weekends. “Over the next few weeks, this team moved mountains,” says Dugal. “And because we had all the right people in the room, decisions that used to take weeks were able to be made in a matter of hours. We glennon.org Fall/Winter 2020 • 23

WE RISE Adapting in Uncertainty had a lot of work to do in a very short time, especially with switching everything we could to digital platforms and equipping providers for telehealth.” “We also worked very hard on clear, concise messaging that was consistent with the other SSM Health hospitals in St. Louis and with our SLUCare partners,” adds Rachel Charney, MD, professor of emergency medicine and the incident command medical specialist. Fortunately, as of fall 2020, there have been fewer than expected pediatric cases of COVID-19 in the St. Louis area. The American Academy of Pediatrics tells us that children have represented only about 9 percent of COVID-19 cases nationwide. Early data is showing that children under the age of 18 may be better able to combat the virus than adults. Of the 44 states reporting as of August, the mortality rate among children was between 0-0.4 percent, and 19 states had reported zero child deaths. THE NEW NORMAL? Even as restrictions lifted and the hospital could resume outpatient visits and surgeries, challenges remained. The Incident Command team still meets weekly to discuss everything from PPE and testing shortages to preparedness for the winter flu and RSV season. “We see our greatest number of sick kids in the winter, and we want to make sure we are taking every precaution to keep them and their families safe,” says Dugal. “We also keep the group updated on the newest science, current concerns of the region (like school reopenings) and upcoming vaccination needs,” adds Charney. “We pay close attention to where SSM Health Cardinal Glennon stands in the community that surrounds it and not just as a silo.” Will things ever return to the pre-COVID normal? “We just don’t know,” says Dugal. Masks,

temperature checks and all the rest may be our new normal. “The safety of our kids is our top priority, no matter what.”

or more than a decade, hospitals and health systems have experienced challenges keeping up with the constant changes in the application of telehealth, from technology costs and licensure regulations to the low reimbursement rates from Medicare and other insurers. The advent of COVID-19 to the United States in the early months of 2020 caused the shutdown of nonessential clinical services at most hospitals, including those in the St. Louis region. As hospitals rushed to equip clinical providers with the necessary equipment and connectivity to serve their patients through telehealth, the Centers for Medicare and Medicaid Services (CMS) fast-tracked the “deregulation” of the barriers that existed for the reimbursement of telehealth services. Most private insurers followed suit to reimburse health care providers at similar rates as in-person services, at least temporarily. FORCING THE ISSUE Before this year, only about 8 percent of patients surveyed nationwide reported they had ever used telehealth to receive health care services. Hospitals and clinics that offered telehealth often struggled to garner interest among providers to use the service. In many cases, hospitals had to use expensive marketing campaigns to raise awareness of these services in their communities. Now, CMS estimates that there will be more than one billion telehealth visits in 2020 alone. Put

24 • SSM Health Cardinal Glennon Children’s Foundation

simply, COVID-19 has “forced the issue” of telehealth adoption as a method of service delivery. But even as limitations begin to ease in the coming months, it is anticipated that telehealth will remain a vital part of the care provided at SSM Health Cardinal Glennon. TELEHEALTH AT SSM HEALTH CARDINAL GLENNON When SSM Health Cardinal Glennon first adopted telehealth in 2015, it was to improve real-time consultative access to pediatric subspecialty care for rural and community hospitals on both sides of the river. Through TeleNeonatology and Tele-Emergency services, providers at SSM Health Cardinal Glennon can provide consultation and evaluation on a child in Breese, Ill., for example, without ever leaving St. Louis, saving valuable time and resources in the process. From there, Tele-Pulmonology in Jefferson City began in 2017, enabling SLUCare providers at SSM Health Cardinal Glennon to follow up with patients in central Missouri. Tele-Psychiatry launched in 2019, utilizing providers from neighboring states to supplement our existing staff and enabling patients in need of mental health services to be seen more quickly. “Before COVID-19, there wasn’t a burning platform for physicians – and health systems for that matter – to invest the time and effort required to establish telehealth as an integral

part of our patient care platform,” says Shawn Dryden, vice president of ambulatory services at SSM Health Cardinal Glennon. “When COVID-19 hit, our physician and clinic leaders quickly galvanized around telehealth as a safe and effective means of providing primary and specialty care services.” In March of 2020, to ensure the safety of patients, their families, providers and staff, SSM Health Cardinal Glennon’s outpatient services shifted to a model that was focused primarily on telehealth, with only the most acute patients being seen in-person at a clinic. Nonurgent clinic visits and surgeries were deferred for a few months until the community spread of COVID-19 had decreased to levels that allowed for in-person visits again. During this time, an accelerated ramp-up of telehealth was instrumental in ensuring that children continued to receive the care they needed. Some programs, like the Knights of Columbus Center, were seeing 100 percent of their patients via telehealth. “At our peak, we were doing about 800 telehealth visits a week hospital-wide. In the first four months since COVID-19, we completed more than 9,000 telehealth visits,” says Dryden. POTENTIAL LIMITATIONS This technology, however, does not come without its drawbacks. The latest estimates are that more than 21 million Americans do not have access to high-speed internet service. This, in addition to the inability to afford the proper electronic devices, presents a significant barrier to reaching underserved populations, including the many rural communities and low-income families served by SSM Health Cardinal Glennon. In addition, telehealth appointments limit a provider’s ability to perform a physical exam and, therefore, there are instances

in which an in-person visit is still needed. Despite these challenges, Dryden estimates that some SSM Health Cardinal Glennon providers will continue to perform 30 to 50 percent of their patient visits via telehealth for the foreseeable future. WHAT THE FUTURE HOLDS “The potential applications of telehealth for a hospital like Cardinal Glennon are exciting,” says Dryden. “It will be especially helpful in our outreach markets like southern Illinois or southeast Missouri, both to improve access for our families and to generate new business.” Existing and potential new relationships with community and rural hospitals will enable specialists at SSM Health Cardinal Glennon to provide services to communities experiencing a gap in coverage for a particular pediatric specialty or offer second opinions to partnering pediatricians.

ne of the programs that has greatly benefited from telehealth is the SSM Health Cardinal Glennon Psychology team. The quick adaptation of telehealth allowed our mental health professionals to continue providing comprehensive support and treatment to families with minimal interruptions. For children who are hospitalized or receiving care from one of the hospital’s multidisciplinary specialty clinics, the psychologists continue to provide limited in-person services, as safety precautions allow. “As many of these children have accompanying medical needs, it is always best to see them face-to-face if I can,” says Mary Weatherford, PhD, clinical psychologist at SSM Health Cardinal Glennon. The majority of patients, however, receive services on a strictly outpatient basis. Prior to COVID-19, these families would

APPLICATIONS OF TELEHEALTH •N on-urgent clinical appointments, such as follow-ups or medication management •P re-appointment check-in, to save time in the doctor’s office •T riage of patients with symptoms of COVID-19 or other communicable diseases •F ollow-up appointments after a hospitalization •C ase management for complex patients •E ducation, training or nutrition counseling • Behavioral health •P rofessional consultations and peer-to-peer education for medical professionals

WHO CAN BENEFIT FROM TELEHEALTH? •F amilies who live outside the St. Louis metro area •C hildren with complex medical conditions who see multiple specialists •C hildren who use medical equipment and have limited mobility •F amilies with child care, employment or other time constraints •F amilies who lack reliable transportation SOURCE: Centers for Disease Control and Prevention, 2020

glennon.org Fall/Winter 2020 • 25

either come to SSM Health Cardinal Glennon or see their psychologist at SSM Health St. Joseph Hospital in Lake St. Louis or St. Luke’s Hospital in west county. Now, “just about all of our outpatient visits are done virtually,” says Dr. Weatherford. “It’s like we’ve been invited into families’ homes,” says Debra Emery, PhD, clinical psychologist. “I’ve met pets, seen art projects and had kids show me their rooms. We have had a lot of special moments.” THE OTHER CURVE The COVID-19 crisis has created much uncertainty for children and their parents alike. Feelings of stress, anxiety and even grief have a cumulative effect on the body and can often lead to physical health problems. In fact, researchers at the World Health Organization (WHO) have identified mental health as an area of concern as countries face long periods of economic instability in addition to dealing with the virus itself. The WHO cites prior periods of stress in U.S. history, such as the Great Depression, that led to many incidents of heart disease because of prolonged stress on the immune system. Closer to home, our psychology team is also seeing a steady increase in the acuity of children’s mental health concerns. “A lot of what we are seeing are understandable reactions: anxiety, boredom and irritability,” says Dr. Emery. “Some of my patients are also dealing with the sadness that comes from social isolation.” “In our world, we call it ‘COVID fatigue,’” says Weatherford. “Kids just want life to go back to normal, and unfortunately, we don’t know when that will happen. Our job is to help these kids and their parents cope as best as they can.” In March, researchers at the University of Oregon started the Rapid Assessment of Pandemic Impact on Development or RAPID study. RAPID is an ongoing survey

of families with young children that includes questions about family supports, caregiver mental health, utilization of resources and child development. The study shows that “in prepandemic America, households with young children were already facing increasingly high levels of daily stress and distress, and were often isolated from extended family members and others in their communities from whom they might receive emotional and material support.” “During these last several months, it has seemed like everything that was an issue before, whether it was anxiety, depression, whatever, has just been ramped up to unbelievable proportions,” Dr. Weatherford continues. “The difficult part is that a lot of the fears our patients experience are well-founded,” Dr. Emery continues. “But while they may be based in fact, they are not necessarily the most helpful thoughts for their wellbeing. That’s when we work with them on resiliency and acceptance, as well as encouraging them to be creative when it comes to interacting with their friends.” Dr. Weatherford continues, “For children who deal with depression, we are kind of in a catch-22. We always encourage these kids to be more active and make a real effort to socialize, to help manage the tendency to withdraw. But with COVID-19, that has been a real challenge.” RESILIENCY AND ADAPTABILITY At SSM Health Cardinal Glennon, many patients experience contact restrictions and isolation as part of their daily lives, especially children undergoing treatment for cancer or complex conditions like cystic fibrosis. “When all the new restrictions hit, I was expecting a lot more anxiety from my patients,” says Dr. Emery, who supports children and families in The Costas Center.

26 • SSM Health Cardinal Glennon Children’s Foundation

“Their main reaction was, ‘welcome to my world.’” “They were used to this already, so it was almost a relief,” says Dr. Weatherford, who is part of the cystic fibrosis team. “Now they know they are not alone, and people understand more of what they go through every day.” There were challenges, however. “It was hardest when the visitor restrictions were the strictest,” says Emery. “It was especially difficult when we had a new [cancer] diagnosis and the child was hospitalized. Siblings were not allowed at that time, like they usually are, and many kids really missed that familial support that they need the most when they are first adapting to their diagnosis.” Despite the uncertainty, families are managing, Dr. Emery concludes, and for the most part, kids are very adept at putting a positive spin on things. “One of my patients was very sad one day when she came to The Costas Center and saw that she couldn’t play on the submarine. “’But,’ she said. ‘At least we can still see the bubbles!’”

nother component of the RAPID study is the highlighting of disparities in resiliency and adaptation between families with adequate resources and low-income families, and in particular, single-parent families. The study’s key findings are that the hardest-hit families are of lower socioeconomic status. Social Determinants of Health, or the conditions in which we are born and grow, have a profound impact on a child’s and a family’s physical and mental health outcomes, and can exist in any number of forms. It is an essential part of providing health care services to identify and help address the barriers families face on a daily basis. There is probably no greater threat to a family’s stability than a crisis such as a child’s illness.

Many families who come to SSM Health Cardinal Glennon struggle to maintain financial stability. For families impacted by the loss of income due to COVID-19, coping

planning and hospital discharge process, ensuring that families have everything they need to care for their child at home. At-risk families experience

point-in-time needs. Families in Danis Pediatrics complete a Family Well-Being Questionnaire, a special screening tool developed specifically for

“Through our participation in the healing ministry of Jesus Christ, communities, especially those that are economically, physically and socially marginalized, will experience improved health in mind, body, spirit and environment…” Vision Statement of SSM Health with a child’s hospitalization, affording medications or other expenses can be devastating to their finances. SOCIAL SERVICES In a pediatric setting, social workers are a vital part of a child’s care team, especially for families of children with complex medical conditions who are hospitalized frequently. Social workers assess a family’s mental, emotional, spiritual and even financial needs and can intervene when those needs have the potential to impact the child’s health or well-being. Social workers also participate in the care

WHAT ARE SOCIAL DETERMINANTS OF HEALTH? •E conomic stability, including employment and housing • Education •S ocial issues, such as racial discrimination •H ealth and access to quality health care •E nvironment and neighborhood, including access to healthy foods and quality housing

housing instability, food insecurity, transportation barriers, inability to afford medications and other basic needs that would compromise their child’s health and safety. Through SSM Health Cardinal Glennon’s network of community partners – and generous donor support – families may receive short-term emergency assistance so that their child can return to a stable home environment. “With COVID-19, we have seen a lot of parents out of work,” says Sam Cuddeback, MSW, LCSW, team lead for social services and case management at SSM Health Cardinal Glennon. “Many families who before would not have requested help are suddenly finding themselves having to choose whether to pay their rent or put food on the table. Our generous donors are keeping many families in their homes right now.” PROMOTING HEALTH AND SOCIAL EQUITY Another unique program offered at SSM Health Cardinal Glennon is The Danis Pediatric Center’s Promoting Health and Social Equity, or PHASE, program. This model addresses the social determinants of health during a clinic visit, linking families to resources based on their

the PHASE program. From there, the child’s physician evaluates the results to determine if a PHASE consult is needed. Trained advocates connect families to community resources that provide basic needs like diapers, food and financial education. In addition, partnerships with Operation Food Search and the St. Louis Diaper Bank have made it possible for families to receive onsite assistance. The overall impact of PHASE has been astounding and has now become standard of care in Danis Pediatrics. The stressors and needs of patients and families are still very much present, now more than ever, and generous donor support of the program will ensure that Danis Pediatrics families will continue to receive the help they need.

glennon.org Fall/Winter 2020 • 27

GLENNON GOLF CLASSIC 2020

Watch the Video

Glennon Golf Classic Benefiting the Music Therapy Program

nce again the Glennon Golf Classic took place on the Friday after Labor Day at Columbia Golf Club in Columbia, Ill. The generous course owners, Martha and Bill Hawn, gladly hosted the annual fundraiser in support of the Music Therapy Program at SSM Health Cardinal Glennon Children’s Hospital. As you can imagine, things looked a little different for the 2020 event. Because of COVID-19 restrictions and guidelines, the decision was made to cut the normal amount of teams in half. Golfers arrived for staggered tee times sporting masks and practicing social distancing.

A couple of changes many golfers enjoyed were having their own golf cart and a prepacked cooler of beverages. We weren’t able to gather for breakfast and opening remarks as usual, but Kuna Foodservice and Lisa’s Bar and Grill graciously provided individually boxed meals for each golfer. FabickCAT continued their support as Presenting Sponsor of the tournament for the 37th year in a row. Their consistent involvement is a major contributor to the longevity and success of this annual event. Thanks to generous donors like FabickCAT, our Music

28 • SSM Health Cardinal Glennon Children’s Foundation

Therapy Program has expanded to the Dana Brown Neonatal Intensive Care Unit, where a music therapist uses music interventions to support the physical, developmental and emotional needs of our tiniest patients. Glennon Kid Jimmy, who received a heart transplant in December 2019, joined golfers at Hole #1 for a special opportunity and advantage. Teams donated $100 for Jimmy to drive their golf ball. Little did many of the golfers know, Jimmy is a world-ranked golfer. The advantage was two-fold since the drive did not count as a stroke and Jimmy was able to place

most teams in a better position than many of them would have done themselves! Jimmy enjoyed acting like a normal kid that didnâ&#x20AC;&#x2122;t know how to golf and then showing off his remarkable golfing talents to

those who were supporting such an important cause to him. The special opportunity was enjoyed by all. Because music therapy is not covered by insurance, we rely on the generosity of our sponsors

and friends to make this program a reality. With your help, we look forward to continuing the tradition that is the Glennon Golf Classic for many years to come.

PR ESEN TED BY:

Did you know? Music stimulates all of the senses and can even help brain development in young children. 3

1 Rubin Brown Team 2M usic Therapists Kelli McKee and Kristen Ney 3 CBIZ Team 4 Painting Solutions Team

Check out how Music Therapy helped Charlotte during her medical journey

Charlotte Bishop

glennon.org Fall/Winter 2020 â&#x20AC;˘ 29

SUN RUN 2020

Sun Run 5k & 1-Mile Run Benefiting the Children’s Fund

ver the weekend of October 25, the community hit the streets in support of SSM Health Cardinal Glennon Children’s Hospital for the 2020 Sun Run. In response to the COVID-19 pandemic, this year’s event was held virtually, but that didn’t slow the enthusiasm to fundraise for children and families in need. Proceeds from the Sun Run benefit the Children’s Fund at SSM Health Cardinal Glennon. This unrestricted support allows us to invest in new or enhanced programs, update our facilities, create childfriendly and family-centered spaces and so much more. Over the years, unrestricted support has helped such programs as Footprints, Child Life and Healthy First Weight Management. It has also helped us continue to be there for all families throughout the COVID-19 pandemic.

On the morning of October 25, Judi Diamond of 103.3 KLOU led a special virtual program that featured patient interviews, sponsor thank yous and testimonials from caregivers about how the Sun Run has helped them do more for the patients they serve. The program concluded with a virtual warm-up session to get everyone ready to head out and run/walk for Cardinal Glennon Kids! Thanks to our race partner, Fleet Feet St. Louis, runners were still able to compete by recording their own 5k time and uploading it to the virtual Sun Run race page. Many participants were able to proudly wear their new Sun Run shirt and sunglasses during race weekend, thanks to our fulfilment partner, Fogarty Services. Fogarty Services handled the delivery of thousands of swag shipments

30 • SSM Health Cardinal Glennon Children’s Foundation

to participants from all over the country, and even the world! A special thank you to our event committee and all our fundraising team captains who helped lead the charge and make this year’s event a huge success for SSM Health Cardinal Glennon! Their hard work allowed us to surpass all our goals this year, despite all the uncertainty faced by our community. The 2020 Sun Run was presented by Walgreens and we’d like to say thank you to all the sponsors who helped make this year’s event a success: Title Partners, McBride Homes, McKelvey Homes, STL Closet Co., Crazy Bowls & Wraps, The Gatesworth, McCarthy Building, Castle Contracting, Hire Level, Lipic’s, Northwestern Mutual and Marga and Mark Fronmuller.

PR ESEN TED BY:

glennon.org Fall/Winter 2020 â&#x20AC;¢ 31

“ Those are the fond memories I have as I leave.”

Archbishop Emeritus Robert J. Carlson retires after 11 years leading The SSM Health Cardinal Glennon Children’s Foundation Board of Governors

hen the Most Reverend Robert J. Carlson retired in August 2020 as the ninth Archbishop of St. Louis since 1826, he was the sixth of the church leaders to serve as chairman of the Board of Governors of what is now known as The SSM Health Cardinal Glennon Children’s Foundation. The foundation supports the pediatric hospital named in honor of the city’s third archbishop, Cardinal John J. Glennon, who led the Archdiocese of St. Louis from 1903 to 1946. Archbishop Carlson came from Michigan, where he was the Bishop of Saginaw, and was installed in St. Louis on June 10, 2009. He soon received a visit from Monsignor Louis F. Meyer, who had served as an archdiocesan liaison to the hospital since its initial fundraising campaign was launched in 1950. “When I first arrived I was not aware that the archbishop would be asked to be chair of the foundation board,” Archbishop Carlson recalled. “Msgr. Meyer, a wonderful priest who was a member of the board, came to see me. He had a Cardinal Glennon golf tournament shirt. “He said, ‘This is your bribe to say yes to me because you are going to be chairman of the foundation board.’ I told him, ‘How could I turn you down?’ He said,

‘Well, I would have gone back and gotten more shirts!’” The Archbishop laughed at the memory of his first meeting with Msgr. Meyer, who served the archdiocese and hospital until 2011, when he passed away at the age of 92. “It was a very pleasant introduction,” he said. “He was a great guy.” The Most Reverend Mitchell T. Rozanski was installed as the tenth Archbishop of St. Louis on August 25, 2020. “Simply amazed” A native of Minneapolis, Archbishop Carlson was ordained to the priesthood in 1970 for the Archdiocese of St. Paul and Minneapolis. He received a master’s degree in divinity from St. Paul Seminary in 1976 and a licentiate in canon law from the Catholic University of America in 1979.

Then-Hospital President Sherlyn Hailstone welcomed Archbishop Robert Carlson to the hospital in 2009.

“I didn’t know something like that existed. While I had worked on hospital boards before, they were the kind of hospitals that cover everything, not just children. I saw all of this fantastic care and

“I saw all of this fantastic care and discovered that if a family can’t afford to pay for their child’s care...” When he arrived in St. Louis, he said, “Msgr. Meyer certainly showed me the ropes at the beginning because I didn’t know much about the hospital. He and the president of the hospital at that time, Sherlyn Hailstone, gave me a great tour and I was simply amazed.

Cardinal Glennon was known for his devotion to the children of St. Louis.

discovered that if a family can’t afford to pay for their child’s care, they don’t pay. That care comes through donations from the community.” He also learned that SSM Health Cardinal Glennon is the nation’s only free-standing pediatric hospital that is Catholic-affiliated. The fundraising campaign for the hospital was initiated under the leadership of Cardinal Joseph E. Ritter, the fourth archbishop of St. Louis. “It would not be the norm,” Archbishop Carlson said. “If you look across the country it would be religious communities — and religious communities of women — who were founding Catholic hospitals. For Cardinal Ritter to focus on a hospital particularly for children, that would be exceptional.”

glennon.org Fall/Winter 2020 • 33

“Those are the fond memories I have as I leave” Archbishop Emeritus Robert Carlson Archbishop Carlson noted that both Cardinal Glennon and Cardinal Ritter were known for their dedication to children. Cardinal Glennon led the construction of schools across the archdiocese to serve the region’s rapidly growing population. And, he said, “Cardinal Ritter is best known for integrating schools long before anybody else did that. That is why Cardinal Ritter College Prep is named after him. It gives children in poverty a way out and allows them to develop their gifts to

their full potential. What he did with Cardinal Glennon Children’s Hospital helped develop their health potential by making sure that they would get the care they would need to grow up and be healthy and enjoy a full life.” Cardinal Ritter directed planning for the new hospital in 1949 after Peter G. Danis Sr., MD, a respected community pediatrician, and other civic leaders told him of the need for improved health care services for the region’s children and adolescents.

“He understood the challenges” Archbishop Carlson “was a true partner with our hospital from the moment he arrived. He is a downto-earth person who really wanted to work closely with our hospital,” said Thomas E. Hilton, who joined the foundation’s Development Board in 1988 and was later elected to the Board of Governors, where he has served for two decades. He is a partner at Anders CPAs + Advisors. “The Archbishop is in a very busy position,” he said. “There are a lot of demands upon his time and yet he came to as many of our board meetings as he could — personally. He made it a point to be there and hear what was going on at our hospital.” Hilton said Archbishop Carlson was immediately impressed with the mission statement of the SSM Health system that includes Cardinal Glennon: “Through our exceptional health care services, we reveal the healing presence of God.” “He commented that he thought that might be the best mission statement he had ever seen,” Hilton said. “The Archbishop understood our mission and our dedication to all children, especially those who are born into poverty. He supported that. He believed in that. “He was very interested in what we were doing and how we were doing it. He brought to our board the sense that the mission of Cardinal Glennon was an important aspect of the greater work of the archdiocese. That perspective was extremely helpful.” Glennon Sunday For seven decades the archdiocese has devoted an annual weekend of Mass services, known as Glennon Sunday, to a fundraising appeal for the hospital. Glennon Sunday began before construction commenced on the first hospital buildings that were opened in 1956.

Archbishop Emeritus Robert Carlson with Glennon Kid Evie

34 • SSM Health Cardinal Glennon Children’s Foundation

Archbishop Emeritus Robert Carlson presented and also performed Mass for Cardinal Glennon’s 60th anniversay celebration in 2016.

The archdiocese owned the hospital until 1996, when it was transferred to the SSM Health system. “The archdiocese does not have the competence to provide the necessary oversight and guidance for a hospital in the current health care environment,” then-Archbishop Justin Rigali said. No other diocese had been so involved in the sponsorship of a pediatric hospital, he said, explaining that the transfer resulted from “extensive discussion over a period of years about how we might best ensure the future of the hospital.” SSM Health evolved from the Sisters of St. Mary, who had managed the hospital since its

founding. The Board of Governors, which had managed the hospital, continued as a philanthropic foundation. “After the transfer of the hospital, the archdiocese has continued to be very good to us,” Hilton said. “Through the annual Glennon Sunday campaign they have given us the opportunity to

said. “He is very hardworking and a good listener. He has a dry sense of humor and could be selfdeprecating. I wish him a long life and a very happy retirement because he has earned it.” During his leadership of the archdiocese, Archbishop Carlson said, “I have met many people in the community who know what Cardinal Glennon has done over the years. I was involved with getting the parishes more on board with the annual collection. “I obviously enjoyed going to the meetings. The quality of the people on the Board of Governors is exceptionally good. I was just fortunate to be a part of it.” He often met children and families who had been touched by the hospital’s exceptional care and healing presence, he said, and spoke with physicians and nurses who delivered that care.

“...The archdiocese has supported us at all times since 1956 and couldn’t have done more for us.”

stand at the pulpit of every parish during that weekend, tell our story and ask for the help of the good people of the Archdiocese of St. Louis. It has been an enormous help. The Chairmen of the Board of Governors archdiocese has supported us at all Cardinal Joseph Ritter 1946-1967 times since 1956 Cardinal John Carberry 1968-1979 and couldn’t have Archbishop John May 1980-1992 done more for us.” The Archbishop Cardinal Justin Rigali 1994-2003 became a Cardinal Raymond Burke 2004-2008 friend of members Archbishop Robert Carlson 2009-2020 of the Board of Archbishop Mitchell Rozanski 2020-present Governors, Hilton

“Three or four years ago I came out of church after Glennon Sunday and a gentleman told me his daughter just delivered twins prematurely. He asked if I would come. Of course, I did. “The staff was ready for me. We went into the NICU and I baptized the two little girls. They did very well with God’s blessing. I received a picture of them on their first birthday. They were both obviously very healthy and had grown into two beautiful children,” he said. “Those personal moments — those are the fond memories I have as I leave.”

glennon.org Fall/Winter 2020 • 35

Faith,

Glennon Kid

GIVE HOPE to a child this Christmas

o child deserves to spend the holidays in the hospital. While most kids are waking up on Christmas morning opening presents in their homes, there are many children in the hospital who wonâ&#x20AC;&#x2122;t be able to open gifts around their tree this year. Please give the gift of hope and healing to Cardinal Glennon kids this Christmas. Your support will ensure our brave patients can continue to receive the critical care they need during these difficult times. Thank you for making healing possible. Faith, at 18 months

GIVE TO GLENNON at glennon.org

Meet Konnor. Konnor was born with Cerebral Palsy. Konnor and his family are grateful for the caregivers at Cardinal Glennon for helping them understand and manage his complicated diagnosis.

Meet Blake. During Blakeâ&#x20AC;&#x2122;s first year of life, he spent 135 days in the hospital due to kidney failure. He was able to receive a kidney transplant to save his life and is now a happy, outgoing little boy.

Meet Emma. Emma is 17 years old and has dealt with the excruciating pain and symptoms of IBS for years. She recently got the opportunity to try a new IB-STIM device, something only available in the region at Cardinal Glennon, and is now pain free!

Meet Barrett. In six short months of life, Barrett underwent 10 medical procedures to address a cleft lip and palate, a heart defect and severe lung problems. Though he still has interventions that he will need in his future, Barrett is thriving and loves to play with his dog and ride his tricycle.

GIVE HOPE to a child this Christmas

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GLENNON CARD

Glennon Card: 10 years of shopping and saving while supporting a cause

n times of unprecedented change, businesses must adapt and find new ways to move forward. The 2020 Glennon Card followed suit and evolved to better fit participating businesses and buyers. Some changes were small, like keeping registration for businesses open longer. Other changes were more apparent, like moving advertising to floor stickers alongside six-foot distance recommendations. One constant that remained from last year was the use of the new digital Glennon Card. What began as a smart business move is now an essential safety feature. The Glennon Card is a unique opportunity for individuals to support SSM Health Cardinal Glennon Children’s Hospital and local businesses at the same time. With the purchase of a $60 Glennon Card, the buyer receives

Children’s Foundation and the Glennon Guild, a 300+ member women’s organization serving the children cared for by SSM Health Cardinal Glennon. Funds raised from the Glennon Card

Since 2011, the Glennon Card has raised more than $1.73 million for the hospital. a 20% discount at more than 250 businesses, salons and eateries over a 10-day shopping period in October. The shopping program is organized by the SSM Health Cardinal Glennon

38 • SSM Health Cardinal Glennon Children’s Foundation

benefit the programs and services of SSM Health Cardinal Glennon. Past years’ proceeds have gone toward numerous improvements to the hospital’s facilities, such as new furnishings for waiting areas;

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Birkenstock & More Blue Dahlia Designs Blown Away Blow Dry Bar Blush Boutique Brody’s Lamps & Accessories Carol House Furniture Cassie’s Cat’s Meow Personalized Gift Boutique Checkered Cottage Chesterfield Jewelers EATERIES Christopher’s Home Accents The Art of Entertaining Circle of Knowledge Toys Bartolino’s Osteria RETAILERS & SERVICES City Sprouts Bartolino’s South Abby Keough Custom Clay & Cotton Kirkwood Bissinger’s Handcrafted Creations Chocolatier Clayton Jewelers The Aesthetic Center at Chocolate Chocolate Parkcrest Plastic Surgery Clementines’ Boutique Chocolate Company Affton Lawn Equipment Closet Factory Cleveland-Heath Alpine Shop Coach Companion Bakery & Aly’s Boutique College Hunks Hauling Junk Café & MI Box Mobile Storage Amelia’s Fine Linens Crushed Red Curio Press Amini’s Culver’s of Manchester David Kodner Arch Apparel Cyrano’s Café Personal Jewelers Arco Lawn Equipment Deer Creek Coffee The Diamond Bar Arhaus Furniture Dottie’s Flour Shop Dimvaloo Activewear Artmart Favazza’s on the Hill Dominic Michael Salon B. Davis Design I Love Juice Bar - Rock Dotdotdash The Back Store Hill Down by the Station barre3 Des Peres Kirkwood Pop Co. Drybar St. Louis - Frontenac The Bedroom Store Layla Duhon Executive Coaching Bella Chic Home & Gift Maggiano’s Little Italy Eileen Fisher Menchie’s Frozen Yogurt Big River Running Company Erker’s Fine Eyewear - Heritage Place The Bike Center

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Kirkwood Florist Klutch Boutique Koho Boutique Ladue Pharmacy Lalo Salon Lass & Laddie Laurie Solet Laurie’s Shoes Lilly Pulitzer Lu Lu Belle Children’s Boutique Lusso Lux and Nyx Madewell Mark Anthony’s Gifts Marketplace at The Abbey Marmi Marta’s Boutique Mary Tuttle’s Flowers Michelle’s Millbrook Pharmacy Mister Guy Men’s Store Mister Guy Women’s Store MOD ON TREND Moonbeams MOss Boutique Mueller Furniture & Mattress Lake St Louis My Hygge Jacket Never Enough Boutique New Balance St. Louis NewSpace Home Organization The Normal Brand

Olive Tree Marketplace Orangetheory Fitness Ladue Orangetheory Fitness Chesterfield Paperdolls Boutique The Porch in Wildwood Pottery Barn Pure Barre Central West End Pure Barre Des Peres Pure Barre Ladue Rachel’s Grove Relax The Back Riviera Luggage & Leather Roadside Runway Boutique Running Niche Rusted Chandelier Sallie Home sammysoap Sasha Nicholas The Service Bureau Fine Stationery and Gifts Shana Watkins Photography Sign of the Arrow Soft Surroundings Sole Comfort Sole Survivor Leather Special Occasions by Paulette & Teddy Splash The Spotted Pig St. Louis Cosmetic Surgery and Medical Spa St. Louis Salon & Spa

Stallone’s Formal Wear Stonewater Spa & Salon Story Seven Strauss Peyton Portrait Gallery Sweet Be’s Candy, Gifts & Toys Sweet Boutique Synergi Facial Surgery & MedSpa Three French Hens Thro’s Tommy Bahama Treats Unleashed tru candle studio TUMI twigs & MOSS Two Pink Elephants Vera Bradley vineyard vines Vom Fass St. Louis West Elm The White Rabbit White Stable Farms Wild Birds Unlimited Chesterfield Williams Sonoma Wilson Lighting The Woman’s Exchange of St. Louis Woodard Cleaning & Restoration Woody’s Mens Shop YLANG YLANG

glennon.org Fall/Winter 2020 • 39

1 in 10 babies in Missouri are born prematurely and many of them are so small or so sick that they require a stay in a NICU (Neonatal Intensive Care Unit.)

lifesaving equipment for the Imaging Center and the Transport Team; operational support for programs like Footprints and the Knights of Columbus Developmental Center; and community programs like Reach Out and Read. Proceeds raised from the Glennon Card benefit the Children’s Fund in support of the hospitals greatest needs. This year’s Glennon Card will benefit clinical

improvements at SSM Health Cardinal Glennon, like the new Milk Lab being planned near the Dana Brown Neonatal Intensive Care Unit (NICU). One in 10 babies in Missouri are born prematurely, with onefifth of those babies being either so small or so sick they require a stay in a NICU. SSM Health Cardinal Glennon’s nationally-ranked Dana Brown NICU is home to a talented team of doctors, nurses and nurse

practitioners to care for more than 700 babies and their families every year. For premature babies, providing the proper nutrition often involves a feeding tube and the addition of extra nutrients to fortify either their mother’s milk or special formula. The Milk Lab will be a dedicated lab space specifically for the preparation, mixing, verification and delivery of custom formulas.

Patient Anna Designs the 2020 “Glennon Set” For the second year, Kendra Scott has partnered with SSM Health Cardinal Glennon and invited a patient to design jewelry nicknamed the “Glennon Set.” The Glennon Set is sold during the 10-day Glennon Card shopping period and 20% of proceeds benefit SSM Health Cardinal Glennon. This year’s Kendra Scott Glennon Set was designed by patient Anna, who was born with spina bifida and has spent her life in a wheelchair. Since her birth, SSM Health Cardinal Glennon has been an important constant in Anna’s life, a second home for multiple surgeries, recoveries and immeasurable growth. Despite the challenges she has faced, today Anna is much like any other high school student. She enjoys spending time with friends and is active in choir and Future Farmers of America. Her attitude is a gift, always expressing tolerance, patience and taking things in stride with a smile on her face. Anna was excited for the opportunity to design jewelry with Kendra Scott because it allowed her the chance to give back to SSM Health Cardinal Glennon, a place full of people who have given her so much.

40 • SSM Health Cardinal Glennon Children’s Foundation

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The Glennon Guild The Glennon Guild is a dynamic and driven women’s auxiliary boasting more than 300 members committed to supporting the children cared for by SSM Health Cardinal Glennon Children’s Hospital. The Guild’s efforts include raising funds, volunteering and advancing the welfare of the hospital and its patients. Since 1957, the Guild has worked hard to provide resources to support the greatest needs of the hospital. In 2020, the Guild’s fundraising events and programs will benefit the hospital’s greatest needs like the Mobile Intensive Care Units and the NICU Milk Lab. Previous funds raised also sponsored Nursing Education, Child Life and provided infant items for families in need. As always, where the hospital has a need, the Guild finds a way to support it. The Guild takes great pride in dedicating its efforts, talents and resources to the Glennon Card, Heart & Soul, Glennon Cooks and Gift Tags for Glennon fundraisers. It takes a village of volunteers to support these events. The auxiliary would love for you to get involved with the Glennon Guild to help lift the children, staff and families of SSM Health Cardinal Glennon with love and support. To learn more information, please contact Meg Terry at megterry@me.com, follow them on Facebook or visit glennon.org/guild. The Glennon Guild looks forward to hearing from you!

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The Glennon Guild at the 2018 Glennon Card Kickoff Event

glennon.org Fall/Winter 2020 • 41

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Benjamin, top, and brother Christopher were born with rare and different primary immune deficiencies.

“ Science will not always remain powerless before such enemies.” SSM Health Cardinal Glennon Children’s Hospital offers the Jeffrey Modell Diagnostic and Research Center for Primary Immunodeficiencies Pediatric Allergy and Immunology SSM Health Cardinal Glennon Children’s Hospital, Saint Louis University

glennon.org Fall/Winter 2020 • 43

“ SCIENCE WILL NOT ALWAYS REMAIN POWERLESS BEFORE SUCH ENEMIES.”

The Ford family — Mike on top and (left to right) Emily, Christopher, Payton, Ben and Lisa.

hristopher Ford, now 14, was diagnosed with a severe combined immune deficiency, known as SCID, when he was five months old. His pediatrician had sent him to the emergency room at SSM Health Cardinal Glennon Children’s Hospital. SCID is one of the hundreds of known primary immune deficiencies and one of the most serious because it leaves children unable to respond to infections from even common germs. Until recent decades most babies born with SCID lived less than a year. Christopher and his mother, Lisa Ford, were met at the hospital by Alan P. Knutsen, MD, director of pediatric allergy and immunology at SSM Health Cardinal Glennon, which hosts Missouri’s pediatric referral program for immune deficiencies. “Once Dr. Knutsen saw him, he told us everyone in the room had to

wear gowns, gloves and masks,” Ford said. “Dr. Knutsen did the testing and told us Christopher had SCID and would have to have a transplant. He told me it was very serious. “It was one of the hardest things I have ever been told. I could not stop crying. I did not know what was going to happen to my child. After a day or so I let it sink in so I could understand what was going on.” Christopher was transferred to the inpatient cancer unit inside the hospital. “Dr. Knutsen explained everything step-by-step and explained what they would be doing to help him. He went through chemo, had a cord blood transfusion and was in isolation for almost eight months,” Ford said. Germ Theory “The role of the infinitely small in nature is infinitely great,” said Louis Pasteur, the 19th century scientist who established the groundwork for understanding and preventing

44 • SSM Health Cardinal Glennon Children’s Foundation

infectious diseases. “Infinitely small” organisms include bacteria, viruses and fungi that can make life possible or cause illness. There may be one trillion species of microbes, reported two Indiana University biologists in a 2016 publication. “Microbes inhabit just about every part of the human body. Sometimes they cause sickness but most of the time, microorganisms live in harmony with their human hosts, providing vital functions essential for human survival,” explained a report of the National Institutes of Health Human Microbiome Project. “The human body contains trillions of organisms — outnumbering human cells by 10 to 1,” the report stated. “More than 10,000 microbial species occupy the human ecosystem. Nearly everyone routinely carries pathogens, microorganisms known to cause illnesses. In healthy individuals, however, pathogens cause no

disease; they simply coexist with their host and the rest of the human microbiome.” Bacteria living in the gastrointestinal tract, for example, “allow humans to digest foods and absorb nutrients that otherwise would be unavailable.” Common infections could be fatal during Pasteur’s lifetime. Nonetheless, in an 1878 lecture to the French Academy of Sciences, he said, “If it is a terrifying thought that life is at the mercy of the multiplication of these minute bodies, it is a consoling hope that Science will not always remain powerless before such enemies.” Immune Deficiencies So far scientists and physicians have identified more than 350 primary immune deficiency (PID) disorders that impair protective responses to foreign, abnormal or cancerous cells. About one in 10,000 people is born with a PID. “I see patients who are being evaluated for recurring infections. Some of them are going to be diagnosed with an immune deficiency,” said Dr. Knutsen, director

of the Jeffrey Modell Diagnostic and Research Center for Primary Immunodeficiencies, director of pediatric allergy and immunology at SSM Health Cardinal Glennon, professor of pediatrics at Saint Louis University School of Medicine and a SLUCare physician. “The consequences of an immune deficiency can vary. A severe T-cell defect, like severe combined immune deficiency, is life-threatening. It is an emergency that needs to be treated very aggressively and right away,” said Dr. Knutsen. “Most kids do not have that kind of an immune deficiency. They have other types of deficiencies that are not so life-threatening. We can usually manage those patients very well. Many of the immune deficiencies that occur in young children are not going to be lifelong. Caring for them is a matter of getting them through a period of their life until their immune system matures and they are going to be perfectly normal.” Advances in molecular and genetic analysis in the past three decades have identified hundreds

more primary immune deficiencies than were known previously. This information has improved the care of patients, Dr. Knutsen said. “We have better understanding of the molecular pathways of these immune deficiencies. Because of the improved understanding of the immune deficiencies and some of the complications, we can do targeted therapies. Transplantation for immune reconstitution has improved and gene therapy is much better.” Children and teens suspected of having immune deficiencies are referred to SSM Health Cardinal Glennon from much of Missouri and southern Illinois. “We have been named a Jeffrey Modell Diagnostic and Research Center for Primary Immunodeficiencies,” Dr. Knutsen said. “This was quite an honor. In the center we have participated in genetic studies of PID. We also participate in a multi-center Primary Immune Deficiency Treatment Consortium for North America. (left to right) Nurse Navigator Amanda Kerley, Dr. Alan Knutsen and Nurse Navigator Kelly Allison with their zebra mascot.

Think Zebra! During their medical training doctors often are reminded to first think of the most likely patient diagnoses. “When you hear hoof beats, think horses, not zebras,” they learn. But some patients are as rare as zebras and will require further investigation to be diagnosed with unusual diseases such as primary immune deficiencies. That’s why the Immune Deficiency Foundation mascot is the zebra.

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“ SCIENCE WILL NOT ALWAYS REMAIN POWERLESS BEFORE SUCH ENEMIES.”

Recently, an additional protocol was added for Primary Immune Regulatory Disorders (PIRD).” The Modell Foundation was established in 1987 by Vicki and Fred Modell of New York in memory of their son Jeffrey, who died at the age of 15 of a primary immunodeficiency. The foundation is dedicated to early and precise diagnosis, treatments and cures of primary immunodeficiencies. SSM Health Cardinal Glennon also participates in the local chapter of the Immune Deficiency Foundation (IDF) which provides patient, family and public education. The Immune System “The immune system is a wonderful collaboration between cells and proteins that work together to provide defense against infection. These cells and proteins do not form a single organ. The immune system is dispersed throughout the body to provide rapid responses to infection,” explains the Patient and Family Handbook for Primary Immune Deficiency Diseases, published by the Immune Deficiency Foundation. The major organs constituting the immune system are the thymus, liver, bone marrow, tonsils, lymph nodes, spleen and blood. There are 13 types of cells that recognize and attack pathogens. One is immunoglobulin, which has five major classes and six sub-classes. Some immune system cells act innately, responding to infectious threats in their basic form. Other cells respond adaptively — they recognize a threat after previous exposure and deliver a learned, targeted response. The immune system normally recognizes the body’s own tissues,

but some immune deficiencies produce autoimmune disorders that attack normal cells. An immune deficiency results when one or more components of the immune system does not function normally. Patients face increased susceptibilities to infections that may be unusually frequent, severe, difficult to treat or triggered by unusual organisms. Secondary immune deficiencies are caused by other diseases or medications. A primary immune deficiency (PID), often diagnosed in childhood, is caused by one or more molecular and genetic defects in immune function. “There are more than 340 known genetic causes of primary immune deficiencies,” Dr. Knutsen said. Most PIDs result from genetic abnormalities that are inherited, but

chemotherapy. The patient receives normally-functioning cells from bone marrow or umbilical cord blood. SCID was the diagnosis for David Vetter of Texas, who became known as “the bubble boy” in news reports and two movies. He spent his life in an isolated containment system until he died in 1984 at the age of 12. The five-year survival of SCID patients who received stem cell transplants before 1995 was 56 percent, stated a 2017 paper in the journal Expert Review of Clinical Immunology. The survival rate is now 95 percent for patients transplanted by the age of 3.5 months, before they have contracted a serious illness such as pneumonia, viral respiratory infections, meningitis or bloodstream infections. Newborns are now routinely screened in the United States for diseases that include SCID. SSM Health Cardinal Glennon Immunology is a referral center for evaluating abnormal newborn screening SCID results for Missouri and southern Illinois. Dr. Knutsen is a member of the Task Force for Newborn SCID Screening for Missouri and Illinois. “By identifying these kids in the newborn period we are able to start treatment at an earlier point, before they become sick with illnesses that are difficult to treat,” Dr. Knutsen said. Gene therapies are evolving as treatments for some PIDs, he said Gene therapy utilizes a virus that has been modified to remove its own genes, which are replaced with a normal copy of the human gene causing the patient’s immune deficiency. “Stem cells from the patient are transfected with the viral vector containing the normal genes outside the body,” Dr. Knutsen said. “These

“There are more than 340 known genetic causes of primary immune deficiencies...”

some are caused by spontaneous genetic mutations. The symptoms of some PIDs do not appear until adolescence or adulthood. Outcomes While outcomes for PID patients have improved greatly, quantifying the progress is difficult because of the number and varied effects of the diseases, Dr. Knutsen said. Improvements in treatment outcomes are known for severe combined immune deficiency (SCID), which results when two types of cells, T and B lymphocytes, do not function. There are more than 40 genes that can cause SCID if they are mutated. SCID was first treated about 50 years ago with a hematopoietic stem cell transplant (HST) following

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Their ongoing treatments permit Benjamin and Christopher to participate in most normal activities, such as playing with their dog Bella and tossing a baseball.

‘corrected’ stem cells are then transfused into the patient, then expanding and correcting the gene defect.” “Gene therapy will become the standard of care for some deficiencies,” Dr. Knutsen said. Ongoing Care Treatment regimens for PID patients vary broadly, said Amanda Kerley, BSN, RN, nurse navigator for the allergy and immunology department at SSM Health Cardinal Glennon. “We typically see kids every three to six months in the clinic. Those are the kids who have the less-severe immune deficiencies and might occasionally have ear infections or more infections than the average kid,” she said. “Patients who receive immunoglobulin replacement therapy are typically in the clinic about once a month. Patients with the more severe immune deficiencies, like SCID, have to be kept under strict isolation until they undergo a transplant.” Christopher and Benjamin Christopher continues to receive intravenous injections of immunoglobulin (IVIG) every three weeks to support his immune system.

“When he got home from the hospital he thrived,” his mother said. “He is a freshman in high school and plays baseball. He is a bowler, too. People tell me all the time that they can’t tell he is sick when they look at him. The main thing you can tell is that he is a little bit shorter, even than his 11-year-old sister.” Christopher’s form of SCID results from a genetic defect in a chromosome that is inherited from mothers. “I was genetically tested but my test came back negative, meaning I am not a genetic carrier for that defect,” Ford said. Dr. Knutsen told the family that Christopher’s genetic defect was a random mutation. Mrs. Ford’s next child, daughter Payton, 11, was born without an immune deficiency. Then came Benjamin, now 5. “When he was born they did the screening tests and everything was normal,” Ford said. “At three months he started getting infection after infection after infection.” Dr. Knutsen diagnosed Benjamin with a different PID caused by a different defect — transient hypogammaglobulinemia of infancy (THI) anemia. “It was a very mild form of deficiency compared to what

Christopher had. He started IVIG infusions right away,” his mother said. The infusions, administered every three weeks, keep Benjamin’s immune system functioning so he, like his brother, faces few limitations. “He is as active as any 5-yearold boy. He loves going outside and getting dirty. There are certain pets we can’t have because they are infection risks, but we have dogs,” Ford said. Mrs. Ford said her grandmother and an uncle have extensively traced her family’s genealogy without finding a history of anything resembling an immune deficiency. “They have gone back four to five generations. That Christopher and Benjamin have deficiencies is a coincidence,” she said. Both boys continue to be monitored by Dr. Knutsen. “Both of my boys are doing wonderfully and doing normal things. Their care at Cardinal Glennon has been amazing. Every step of the way there was someone there to help me. I could not have asked for a better group of people to take care of my child. It was almost like they were family. I will never forget what they did for us.”

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HOMERS FOR HEALTH 2020

Homers for Health 2020 1 of 195

lot has changed since we first introduced you to this year’s Homers for Health Co-Chairs, Matt Carpenter, Paul DeJong and Glennon Kid Kennedy Burger. None of us could have ever imagined a baseball season without fans cheering on the Redbirds in the stands, but our generous donors throughout Cardinals Nation still came through for the children and families who rely on SSM Health Cardinal Glennon Children’s Hospital for care. The number of Cardinals home runs hit every season — averaging around 200 — has always been the driving force behind the program, which is why this year we had to select our own special number to represent the Homers for Health season: 195.

Why 195? It’s the number of beds at SSM Health Cardinal Glennon. Each of those 195 beds represents a family whose life has been impacted by the doctors, nurses and caregivers who make the hospital such a special place. In the last few years, donations to Homers for Health have helped fund enhancements to several of our key supportive programs, such as Child Life, Music Therapy and Footprints, as well as renovations to the Inpatient Cancer Unit, Radiology Suites and more. Of course, a big reason for the success of this program is the continued support from our sponsors. We couldn’t do what we do without

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them and special recognition goes to our Presenting Sponsor, Heartland Coca-Cola! It has been our pleasure to highlight many of our amazing patients who represent being #1of195 this season. Check out the next page to learn more about a few of our patients whose lives have been changed by the exceptional care provided at SSM Health Cardinal Glennon.

P R E S E N T E D BY:

Little Liam is 1 of 195 and he has been from the moment he was born. Thanks to the care provided by SSM Health Cardinal Glennon, Liam was able to go home for the first time earlier this year after ____ days hospitalized! Today, Liam is living his best life at home, thanks in part to community support provided through Homers For Health.

For some, you are never too old to be 1 of 195. Take 27-year-old Kirby for example, who found himself residing at SSM Health Cardinal Glennon following a diagnosis of osteosarcoma. Since osteosarcoma is typically a pediatric cancer, Kirby’s best option for treatment was at SSM Health Cardinal Glennon. Despite the unusual circumstances, Kirby had this to say: “I would love to thank all of the doctors and nurses that have spent so much time with me day after day... I also want to thank all of the donors who have made Cardinal Glennon the place that it is, because it makes it not as hard to spend weeks away from home.”

Rylan and Kaylee are brother and sister, and both have been 1 of 195. For Rylan it was an early diagnosis of diabetes in 2011 that brought the family to SSM Health Cardinal Glennon so he could receive care and support from our team. Kaylee began her own journey in 2014, receiving chemotherapy through The Costas Center for an inoperable brain tumor. Today, Kaylee aspires to become a cheerleader and Rylan is playing baseball.

Just because you are 1 of 195 doesn’t mean you have to miss out on some of life’s biggest moments. Glennon Kid Shaun was devastated to learn that he would miss his high school graduation while awaiting a heart transplant, so the team at SSM Health Cardinal Glennon stepped up to bring the graduation to him. Less than two weeks after receiving a new heart, Shaun thrilled his family by walking up to accept his diploma during a special graduation ceremony at SSM Health Cardinal Glennon, put on by many of the staff who helped care for him during his transplant.

glennon.org Fall/Winter 2020 • 49

THANK YOU TO OUR SPONSORS

PRESENTED BY:

50 • SSM Health Cardinal Glennon Children’s Foundation

Once again, you inspired us. Let us celebrate you.

Thank you to our annual donors making a difference every day, every year — full circle. SSM Health Cardinal Glennon Children’s Foundation 3800 Park Avenue • St. Louis, MO 63110 • 314-577-5605 • 1-800-269-0552 • glennon.org glennon.org Fall/Winter 2020 • 51

DIERDORF-PRONGER GOLF CLASSIC 2020

Dierdorf-Pronger Golf Classic Benefiting the Dan Dierdorf Emergency and Trauma Center

he Dierdorf-Pronger Golf Classic celebrated its 35th year in October and continues to benefit the Dan Dierdorf Emergency and Trauma Center at SSM Health Cardinal Glennon Children’s Hospital. NFL Hall of Famer Dan Dierdorf teams up with NHL Hall of Famer Chris Pronger to host this tournament every year. The tournament took place on October 12 at Boone Valley Golf Club in Augusta, Mo. and featured five-player teams, a mobile auction, hole-in-one contests and overall team prizes. We were honored this year to have a few special guests playing including Robert Gassoff, Martin Brodeur and Barrett Jackman. Jimmy Williams, Cardinal Glennon kid, was also in attendance to help share the hospital’s mission. Jimmy took care of driving the ball on hole 9 for each team. The golfers were

blown away by his talent as they learned of his world-ranked golfer status. Infants and children come to the Dan Dierdorf Emergency and Trauma Center from all over the region. As a Level I Pediatric Trauma Center, we are one of the busiest emergency rooms in the city and can handle any type of emergency, day or night. In addition, SSM Health Cardinal Glennon emergency physicians are available at six hospital locations throughout the bi-state area, including north and south St. Louis County, St. Charles County and the Metro East. When minutes matter, our dedicated Transport Team is standing by to serve hospitals in 120 counties in Missouri and Illinois. This group of highly-skilled paramedics, nurses and respiratory therapists have advanced training in the safe care and transport of babies and children.

52 • SSM Health Cardinal Glennon Children’s Foundation

The Latest Technology for the Best Care With the advent of new technology comes the ability to provide innovative solutions for modern emergency medicine. Through telehealth technology, our emergency physicians can evaluate patients at other hospitals and provide consultation and expertise to their attending physicians. They can also determine whether the child can be cared for appropriately in their community or needs to be transferred to SSM Health Cardinal Glennon. Thanks to everyone who generously supports this one-of-akind tournament each year. We look forward to seeing you in 2021!

PR ESEN TED BY:

1 Tom Bacich, Mark Mays, Thomas McMillin, Phil Caster, Mark Allenspach 2D on Woitkowski, Shawn Dryden, Ellis Hawkins, Sean Easter, Kevin Williams 3S cott Schnuck, Douglas Albrecht, Tom O’Toole, Dr. Richard Rames, Thom Sehnert 5D r. Mike Schildz, Dr. Steve Laffey, Dr. Trevor Tredway, Dr. Tim Staed, Dr. Robert Flood 6J ohn True, Jay Williamson, Barrett Jackman, Martin Brodeur, Jay Bartling

glennon.org Fall/Winter 2020 • 53

Fairview Heights, Ill., student Elijah Williams dancing in the streets with his mother, Jena Williams

Hello ROSA! New Robotic Technology Helps Treat Epilepsy

54 • SSM Health Cardinal Glennon Children’s Foundation

n the sidewalk near his home in Fairview Heights, Ill., Elijah Williams smiles as he tries a few hip hop dance moves on a summer afternoon in early September. The 18-year-old high school senior’s ability to make the steps is thanks to encouragement from his mother and a recent procedure that involved a highly-advanced Robotic Operating Surgical Assistant (ROSA) system now in use at SSM Health Cardinal Glennon Children’s Hospital. ROSA is a highly-sophisticated, image-guided software and technology system that is used by neurosurgeons to treat conditions

Philippe Mercier, MD, director of the surgical epilepsy program

Himanshu Kaulas, MD, SLUCare neurologist

mother, Jena. “But after a few hours we were sent home and told it was most likely an isolated event. However, he had a more serious seizure and we had to go back to the hospital. After three days of imaging and tests, we found out that Elijah had epilepsy.”

“By using the ROSA robot, we can not only map locations but also perform minimally invasive procedures that are far more accurate and with less risk to our patients.” such as epilepsy, brain tumors and pituitary gland tumors. The system’s robotic “arm” is guided by neurosurgeons and is able to pinpoint and map precise locations in the brain or spinal cord that contain tumors or where seizures originate. “It’s a game changer,” says SLUCare Neurosurgeron Philippe Mercier, MD, Director of the surgical epilepsy program at SSM Health Cardinal Glennon Children’s Hospital. “By using the ROSA robot, we can not only map locations but also perform minimally invasive procedures that are far more accurate and with less risk to our patients.” For Elijah, pinpoint accuracy was critical. He was diagnosed with epilepsy almost five years ago after first experiencing a seizure in the middle of the night. “We called 9-1-1 and he was rushed to the local hospital,” recalled Elijah’s

Epilepsy is the fourth most common neurological disorder in the United States. The condition is characterized by unpredictable seizures that can be either mild or debilitating. According to the Epilepsy Foundation, there are approximately 470,000 children in the country who have been diagnosed with the condition. Elijah’s frequency of seizures increased and he started to have episodes at least once a week. “I would get these auras and then have a seizure,” he said.

“I would sleep all day after each one happened and not eat any food. It wasn’t fun at all.” From being an outgoing freshman in high school, Elijah had to stop playing sports, which he loved. He also was unable to drive a car, considered to be a rite of passage for almost every teen. As his family sought answers, they turned to SSM Health Cardinal Glennon for a more comprehensive evaluation and a review of better options. “For several years, we were able to offer various medications that reduced some of the severity of Elijah’s seizures,” said SLUCare neurologist Himanshu Kaulas, MD. “Instead of once a week, he was able to go about a week and a half without a seizure. Still, we wanted to see if we could reduce them further or eliminate them entirely.” At a multidisciplinary team epilepsy conference, Dr. Kaulas joined neurologist Glen Fenton, MD, world-renowned SLUCare neurosurgeon Richard Bucholz, MD, and Dr. Mercier to discuss Elijah’s medical issues and the potential

Image of Elijah’s brain indicating the placement of sEEG electrodes to identify the location of seizures.

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HELLO ROSA! NEW ROBOTIC TECHNOLOGY HELPS TREAT EPILEPSY benefits of using the ROSA robotic system to first map and then treat his seizures with a delicate operation that would remove a portion of Elijah’s brain. To make the determination, Elijah underwent multiple advanced imaging evaluations to track brain activity and hone in on the location of his seizures. The team also referred Elijah to another hospital in Memphis, TN, for more advanced testing. “Those evaluations determined that the seizures were likely coming from the left side of Elijah’s brain, but we couldn’t determine, at first, which lobe of the brain was implicated,” explained Dr. Kaulas. In July 2019 while celebrating his 17th birthday, Elijah was admitted to SSM Health Cardinal Glennon and underwent a minimally invasive procedure with the ROSA Robot to insert tiny electrodes into three areas of his brain — the left frontal lobe, the insula and the temporal lobe. In the intensive care unit, he was weaned off all of his epilepsy medications so that doctors could see where the seizures occurred. The results of the

Elijah’s passion is master-crafting new hip hop beats.

how deep the seizure location is. That was important for Elijah because his epileptogenic zone was very near the area that was responsible for production of speech and we wanted to ensure that we maintained his ability to speak after surgical resection and ensure that we removed the area of the brain that was causing seizures.”

“The ROSA Robot is like GPS for the brain in that it not only maps an area and guides the placement of electrodes, it also uses multiple trajectories to tell us where and how deep the seizure location is...” test caused major concern: Elijah’s seizures were coming from the temporal lobe near where speech function was controlled. But by using the ROSA Robotic system, Dr. Mercier was able to pinpoint and precisely map both the seizure zone and the functional brain area that controlled speech. “The ROSA Robot is like GPS for the brain in that it not only maps an area and guides the placement of electrodes, it also uses multiple trajectories to tell us where and

Now, one year later, Elijah is not completely seizure free, but the duration and frequency of the seizures have decreased. “He doesn’t have them as often and his recovery time coming out of the seizures also has decreased,” said mom Jena. “We hope that he continues to improve.” For Elijah, the journey has been a roller coaster of emotions. He would have graduated from high school this past May. Instead, he is returning for his senior year and

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Elijah and his father, Lance Williams

plans to graduate in 2021. What keeps him motivated is his drive to succeed, the support of his parents and his love of music. “I love music,” says Elijah. “I love to listen to it, dance to it, and also make studio beats of my own. It’s what has kept me going through all the sadness of having these seizures and being treated for them.” Shortly after his surgery, Elijah competed in a virtual talent show, performing hip hop dance. This year, he continues to mix new beats and try out new dance moves. “It’s getting better every day,” he said. “I’m getting back to doing things I like to do.”

Six Steps to Safe Sleep for Your Baby

1 2

Your baby should always sleep ALONE. Your baby should always sleep on their BACK.

4 5

Your baby should always sleep in a crib or pack ‘n play. Put nothing in baby’s sleep area.

Do not overdress your baby.

Do not expose your baby to smoke.

314-678-5474 or visit glennon.org/safetyprogram to learn more. Call

SUPPORT PROVIDED BY:

glennon.org Fall/Winter 2020 • 57

GLENNON AMBASSADORS

Glennon Ambassadors

lennon Ambassadors are parents or patients who, in their own unique ways, help us share our mission and grow the circle of support for the hospital. Beyond their clinical relationship, they say ‘yes’ to opportunities that can support the hospital, our staff and patient families. Grateful Patient Coordinator Laura Wulf says, “Parents are our best storytellers. They live, eat and breathe our

hospital culture every day, and as we listen to their stories, we find our strengths and opportunities as an organization.” Wulf, a former SSM Health Cardinal Glennon Children’s Hospital oncology nurse and Glennon mom, herself, considers it a privilege to give families extra “purpose” to their journey. “All of our parents and families have unique situations of time, talent, and geography. It’s fun to explore their motivation for

staying connected, and figure out the ‘what can we do’ from there. There are always opportunities, from writing thank you notes, to speaking opportunities, to volunteering, serving on a committee, story sharing...any number of things,” says Wulf. “Because of our families’ willingness to share about themselves, we can effectively show what exceptional care looks like and the impact of support.”

Meet some Glennon Ambassadors who are making a difference: Alivia Kraft Alivia Kraft gave birth to Lillian Rose on August 3, 2016. She was born with Trisomy 18. Trisomy 18 means the child has three copies of chromosome number 18. This occurs in about one out of every 2,500 pregnancies in the United States and one in 6,000 live births. Unlike Down syndrome, which also is caused by an extra chromosome, the developmental issues caused by Trisomy 18 are associated with medical complications that are more potentially life-threatening in the early months and years of life.

Studies have shown that only 50% of babies who are carried to term will be born alive. “Lillian has several medical accessories, says Alivia. “She has a tracheotomy that is capped during

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the day, a ventilator (which she now only uses at night), and a g-tube that she receives a home-blended diet through! She has overcome two heart surgeries, two liver surgeries, tracheostomy placement and hundreds of other procedures. She’s a tough girl!” Alivia says, “Lillian is a sassy, strong warrior that has overcome more in almost three years than most people do in 90. She has had her heart repaired and is thriving thanks to intervention! She has surpassed her life expectancy 10fold, and we make the most of our

situation. I don’t know why God chose us and why He allowed us to have these four breathtakingly beautiful years with Lillian, but I am thankful, unbelievably grateful and praying my heart out that we get many, many more.” As a way to give back, Alivia is partnering with SSM Health Cardinal Glennon Children’s Foundation to launch our Thankful Threads T-Shirt program. The Foundation collects t-shirt design submissions from anyone with a personal connection to SSM Health Cardinal Glennon. Five final t-shirt designs are voted on via Cardinal Glennon’s Facebook page and the shirt that receives the most votes is available for purchase! Alivia and her family handle the printing and online fulfillment of the shirt orders, with a portion of the proceeds going back to help Cardinal Glennon kids!

Whitney Woodring Whitney’s connection with SSM Health Cardinal Glennon began when her daughter, Willa, was transferred to our Neonatal Intensive Care Unit at 3 days old for CO2 narcosis. After a month in the NICU, Willa received a diagnosis of Congenital Central Hypoventilation Syndrome (CCHS), a rare, lifelong and life-threatening genetic disorder. For Willa, having CCHS means she doesn’t breathe when sleeping or eating, or regulate her

body temperature, so she relies on a ventilator to keep her alive. Willa’s condition is extremely rare, affecting only 1,400 people worldwide as of 2017. Willa spent four and a half months in the NICU where she endured a tracheostomy, a pneumothorax, pneumonia and weeks of sedation meaning her family couldn’t pick her up. She has had stays of three weeks or more in the Transitional Care Unit (TCU) at SSM Health Cardinal Glennon and countless appointments with Pulmonology, Neurology, Genetics, ENT, Gastroenterology and Complex Care. Whitney says, “When Willa isn’t visiting Cardinal Glennon, she enjoys being a tiny tornado, like any 2-year-old. She terrorizes her big sister, in-home nurses, mom, and dad and destroys the house on the regular.” There is no cure for CCHS, but Willa’s family feels she has been fortunate to receive care from some of the best in St. Louis at SSM Health Cardinal Glennon. Whitney has found multiple outlets to express gratitude. She and her family are currently serving as one of our Ambassador families for Children’s Miracle Network. She also serves on the hospital Patient Family Advisory Council and the Unintended Extubation subcommittee. She has volunteered at Glennon Golf, as a parent panel speaker for hospital events and helped fundraise as a team captain (for the last two years) for our Fall Sun Run 5k/1-mile event.

Liz Wingenbach Liz’s son, Finn, had open heart surgery at SSM Health Cardinal Glennon in June 2019 when he was almost 3 months old. During summer 2020, her two older

children, Keane and Madigan, paired up with two of their neighbor friends, Evelyn and Alaina, to make rubber band bracelets and host a bracelet stand in their neighborhood. Both families, in fact, have special connections to SSM Health Cardinal Glennon. Evelyn and Alaina’s mom, Jessica, has a cousin who is a long-term Cardinal Glennon patient. “Cory was born at only 1lb 8oz. Our family has witnessed miracles over the course of his life with the help from the amazing doctors and nurses at Cardinal Glennon,” says Jessica. Given their shared connections, the four children unanimously decided they wanted their bracelet stand proceeds to be benefit SSM Health Cardinal Glennon. The response from friends, family and their neighboring community was huge, and the children had to make many more bracelets than originally planned! Both Liz and Jessica made posts on Facebook with links to donate directly to SSM Health Cardinal Glennon. They accepted bracelet orders over Facebook, as well. Collectively, between online donations and cash donations, more than $1,700 was raised. Liz and Tim Wingenbach and Jessica and James Eimer visited SSM Health Cardinal Glennon Children’s Foundation in September with their young philanthropists to offer their donation.

Are you a parent or patient family of SSM Health Cardinal Glennon who would like to connect, share or make a difference? Contact Grateful Patient Coordinator Laura Wulf at laura.wulf@ssmhealth.com or visit GlennonAmbassadors.org. glennon.org Fall/Winter 2020 • 59

ASK THE EXPERTS

Ask the Experts: Kids and COVID-19

hen news first broke about a new virus sweeping the globe, few of us were prepared for the changes that would occur in our daily lives, from employment to education and everything in between, and the stress that was to come. Children, unfortunately, have also borne a large burden of stress and uncertainty because of COVID-19. We checked in with Jaimi Ramsey, PhD, and Debra Emery, PhD, from the SSM Health Cardinal Glennon Children’s Hospital Psychologyteam for their thoughts on how this crisis is affecting their young patients. I have concerns for my children not having the normalcy of school and how it will affect their entire life going forward as they form who they are, stay current with their education and adjust to abnormal extracurricular activities. Is this a valid concern?

Emery and Ramsey: Will this pandemic affect our children’s entire life going forward? In a way, yes. Like historical events in our own lifetimes, we are informed, and even changed because of them. Will this pandemic affect our children’s entire life negatively? That depends. The current pandemic has disrupted many of our lives in terms of how we learn, how we work and how we socialize, to name a few. With these chronic stressors, we are more vulnerable to problems with mood and behaviors. Fortunately, that is only one part of the story.

Jaimi Ramsey, PhD

The silver lining of our current challenges lies in our resilience, and our ability to rely on and increase our resilience. In the hospital, we work with children and teens who have had their educational routines disrupted. We have people in place to help them keep up as much as possible during their hospitalization, and to help them catch up when needed.

How do we build on resiliency?

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Debra Emery, PhD

The same may be true for education in the midst of the current pandemic, with the exception that everyone is going through this together. This is a shared experience.   Emery and Ramsey: Continue to offer support and care to your child. Validate that this is challenging, but communicate positivity in your commitment to problemsolve, advocate and help them to succeed during this time. Maintain a predictable schedule for sleep, school, meals and physical activity. Continue to provide opportunities for social connections, whether inperson or virtual.

Similar to our work with children in the hospital, families and schools are working to help our children keep up as much as possible, and may need to help them catch up when our lives return to normalcy. Know also, that when we go through difficult times, we have an ability to learn and even grow from the experience. It is not uncommon for us to hear from others how difficulties shaped how they viewed other people and situations, helped them to become more empathic toward other people’s struggles and helped them to recognize their own strengths and resiliencies. My child is expressing a lot of anxiety about the virus itself. What can I do to ease their fears? Ramsey: Kids get worried and afraid when they don’t understand what is happening around them, which is especially true right now. The National Child Traumatic Stress Network has some great resources that I share with families that help explain the virus on a child’s level. In my sessions with families, I also work with them on how to best communicate with their child. We are all dealing with this crisis together, and it really helps parents to know that whatever their child is feeling is totally normal. We work a lot on parents checking in with their child regularly and keeping those lines of communication open. This is the time for a lot of extra patience and support. Emery: Something else that parents don’t often think about is the importance of taking care of yourself. Paradigms have shifted for many families, with parents taking on many more responsibilities and daily stressors, and if there was ever a time for self-care, this is it. Crises like this also have the potential to put strain on marital relationships. When I work with family groups, we take time to check in and encourage open communication and grace to keep those relationships healthy as well.

The COVID-19 pandemic has also highlighted the vulnerability of some children, particularly those who are at risk of abuse and neglect. We asked Timothy Kutz, MD, SLUCare physician and medical director of the Child Protection Team and Karen Gudic, MSW, LCSW, Lead Trauma Social Worker, to weigh in on the issue.

Timothy Kutz, MD, SLUCare physician and medical director of the Child Protection Team

Karen Gudic, MSW, LCSW, Lead Trauma Social Worker

What are the biggest factors putting kids at risk? Kutz: There is really not one good answer to this question. My past experience tells me that when things aren’t going well, when people are under greater stress, then we will see more cases. The main concern in situations like this is when the social safety net goes away, such as it did at the end of the last school year. Teachers and school administrators, who are normally on the lookout for signs of abuse, were not there to keep an eye on their students. On top of that, child protective services have been operating at reduced capacity, leaving gaps in their ability to respond to concerns. At the time of this writing, most offices of the Missouri Children’s Division remained closed, with a few centers open by appointment only. The Child Abuse and Neglect Hotline remained fully operational. More Resources

What are the statistics showing? Gudic: At SSM Health Cardinal Glennon, we have only had four fewer physical abuse cases than at this time last year. Unfortunately, this number does not include cases that would have otherwise been reported by a school administrator, teacher or other adult. This is very concerning in that there is a high likelihood that we will see a sharp increase once more children are back in school. Kutz: Our primary concern is definitely for these kids whom nobody is surveilling, who would normally have people looking out for them. This applies to school-age kids who are doing remote learning and younger children who may be at home now instead of at day care. Gudic: In the Emergency Department, we are seeing an increase in the number of younger children and infants who come in with signs of abusive head trauma. What can the general public do to help? Kutz: First of all, it’s important to remember that child abuse is not relegated to one strata of society. It can happen in any family, regardless of where they live or what their socioeconomic status is. We make a strong effort at SSM Health Cardinal Glennon to approach every family in a calm, non-judgmental manner so that first and foremost the child is taken care of. Gudic: Secondly, if you have reason to suspect abuse, you can make a call to the Children’s Division hotline number and remain anonymous. All you need to know is the child’s name, where they live, who you suspect is abusing the child and what your concerns are. Protecting children is everyone’s responsibility.

More Parent Resources About COVID-19 Scan this QR code for a list of helpful websites as well as the Child Abuse Hotlines for Missouri and Illinois.

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SPOTLIGHT

GLENNON FRIENDS

celebrates the faith, commitments and generosity of our supporters.

TRIBUTE

Robert Nichols

ncle Bob" is remembered as an epic figure who began his career as a high school dropout bagging groceries and retired as a senior executive of a Midwestern grocery chain. Robert Nichols of Lake Saint Louis, Mo., passed away on November 20, 2019, at the age of 84. "We always thought he was a larger-than-life person. He was quiet but classy," said his niece, Danette Murphy. "I had grown up hearing about how he became so successful. He was very smart and had a great work ethic. He went to work when he was 15 and went from being a sacker in the 1950s to being the senior vice president of operations at National Supermarkets." Mrs. Murphy grew up in Texas and learned more about Uncle Bob during his funeral eulogy. One speaker was a corporate attorney who had worked with him during much of his career. "She said he would go to the same restaurant every night for dinner and sit at the bar and hold court," Mrs. Murphy said. "He wore pinky rings and entertained all the people he knew there. He had the kind of personality that would make people think, 'That guy's so cool.'" And, the coworker added, "He was an eligible bachelor and a pretty good-looking guy. When he would come into a store, all the

single women would be saying, 'Hey! It's Bob Nichols!'" Mr. Nichols' hard work and frugality had rewarded him, his niece said. "He lived in what some would consider a mansion and drove an expensive car but was proud of how little he spent on living expenses each year. He was very thrifty about many things, but that is how he got rich." And, she recalled, he enjoyed card games. "I was always his pinochle partner when I was a little kid and we visited." Mr. Nichols' family was not church-going but his brother Jerry became a Lutheran minister. "For decades my dad had witnessed to him and prayed about his salvation," Mrs. Murphy said. In 2003, "Uncle Bob said he had accepted Christ and wanted to be baptized. His life changed."

62 â&#x20AC;˘ SSM Health Cardinal Glennon Childrenâ&#x20AC;&#x2122;s Foundation

Uncle Bob began making charitable contributions and arranged for his estate to make substantial contributions to nine charities, including SSM Health Cardinal Glennon Children's Foundation. Why SSM Health Cardinal Glennon? Mr. Nichols avidly watched the news and movies and probably followed the story of John Smith, a teenager who crashed through the ice of a frozen pond in Lake Saint Louis in 2014. John spent more than 15 minutes under water before he was rescued and another 40 minutes at a hospital before doctors could restart his heart. No drowning victim was known to have recovered after so long without a pulse. John, however, survived a transfer to SSM Health Cardinal Glennon, recovered and walked out two weeks later. A movie, Breakthrough, was made about John's miraculous experience. "When Breakthrough came out, Uncle Bob immediately told us we had to see it. When he made his last will in 2017, he had to know about that story," Mrs. Murphy said. "I know he researched every charity to make sure their administrative costs were low and they would use his money wisely. I am so proud to make this donation to the hospital in his name and to know he is still making a difference in this world."

Why I Give »

I give to Cardinal Glennon because the doctors and staff were there to save my son’s life. I can never be thankful enough for all they’ve done. I know with the help of donations, they will continue to save other children, just like they did Andrew.

Sue and her premature son during his stay in the NICU

I worked as a nurse at Cardinal Glennon for 35 years and the hospital always felt like my family. We cared for patients and families wanting to provide them the best possible care. My husband and I certainly experienced that feeling when our premature son spent two weeks in the NICU, so we know how grateful families are for care their children receive.

We could donate to other hospitals, but we give to Glennon because they are our family and our donations will help Glennon continue to do what it does so well.

Carolyn Richardson I give to Cardinal Glennon in memory of my first born son, Courtenay who passed away at age 7.

Every child deserves a chance, no matter what color or race. Deborah Williams

Andrew with Kurt Warner during one of his hospital visits

Sue and Ken Smith

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GLENNON FRIENDS /

SPOTLIGHT

Beau's Baked Yummy Treats

t the age of four, Beau Watson understood the concepts of economics and philanthropy and was eager to practice them. The result was a surprisingly impressive donation to the kids at his hospital. Beau lives in Farmington, Mo., and has been a patient at SSM Health Cardinal Glennon Children's Hospital since he was born with kidney disease and spent a week in the Dana Brown Neonatal Intensive Care Unit. He has only one kidney and was diagnosed with hydronephrosis — swelling due to obstructed urine flow — so he visits the hospital about once a year for exams. "It is not an ideal kidney but it is doing its job and is fully functioning," said his mother, Jackie Watson. "He is doing really, really well." Beau also has a really, really creative mind. "He knows the concept of money. He likes to work for money to buy things for himself or just to save it," Mrs. Watson said. "He has such a kind, giving heart. At Christmas he asked us if he could do chores to earn $17 to buy gifts for his 17 cousins at the Dollar Store." Last winter Beau pitched an idea for a retail venture. "One morning he said he was going to have a bake sale on the

side of our road," his mother said. "We told him, 'Buddy, if you are going to sell stuff people are going to want to know what you are doing with the money. We don't have anywhere to set up a table.' "He was pretty persistent. We told him he just couldn't set up a table anywhere. And we still need to find out what you want to do with the money." Eventually he came up with an answer. "Mommy! I know! I can give it to the kids at my hospital!" "That was totally his idea," his mother said. And it came as his next appointment at SSM Health Cardinal Glennon approached. "We had three days. We asked his aunt if she would make cookies.

64 • SSM Health Cardinal Glennon Children’s Foundation

We got stuff to make Rice Krispies bars and brownies. Then we set up a table at a friend's business in Farmington." A week before Beau's fifth birthday, Mrs. Watson posted an announcement of "Beau's Baked Yummy Treats" on Facebook. "We had people waiting before we got there. They were so incredibly generous. We had a sign that asked for $1 or a donation of your choice. The least we got was $20 and a couple of people gave him $100 bills. Beau's eyes lit up!" Donations also were sent through Facebook, one from a former student of Mrs. Watson, who teaches Spanish at Farmington High School. "She had received a $200 citizenship award to pay forward. She heard about Beau giving money to the hospital and paid it forward to his cause at Glennon." Beau's two-hour adventure in entrepreneurship netted $1,206 for SSM Health Cardinal Glennon. "He was happy," his mother said. Might this experience lead Beau to a career in business? Apparently not, Mrs. Watson said. "He says he wants to be a Cardinals baseball player, then sometimes he says he wants to be a fireman."

SPOTLIGHT

/ GLENNON FRIENDS

TRIBUTE

Bill Gianino

ill Gianino spent his life in the restaurant business. "He was born in it. His father and uncles started restaurants before him," said his son, Billy Gianino. "He was so good at it because of hard work, a little bit of luck and my mother." Mr. Gianino, who passed away on June 26 at the age of 69, was patriarch of the seven Gianino's Family Restaurants in the St. Louis area. The first Gianino restaurant grew with the Oakville suburb, Billy said. "He started with a very small pizza place. As Oakville grew, he hired a chef and transformed it into an Italian restaurant." Mr. Gianino was outgoing and friendly, his son said. "He worked the door when he was younger. He loved to sit down and chat with people. He was proud to have a casual and family-friendly place." "He was a very smart businessman. He was involved in everything," said restaurant manager Heather Krieg. "I've worked here for 25 years. He was an awesome boss." In 2006, Mr. Gianino was honored as the St. Louis Restaurateur of the Year. In accepting the award, he shared credit for the family's success with his wife, Kathy. The two would have

been married 50 years this October. "She was the backbone," Billy said. "Without her, he never would have been able to do what he did." THE KRIEG GIANINO FOUNDATION Heather's sister, Holly Krieg, was born in 1978 with hydrocephalus that led to brain injuries, seizures and other issues. Holly was a patient at SSM Health Cardinal Glennon Children's Hospital until she died in 2002. Holly was one of the first patients enrolled in the pioneering Footprints palliative care program at SSM Health Cardinal Glennon. The program's staff is dedicated to improving the quality of life for children and families living with complex illnesses by coordinating the care of their medical team, social work, pastoral care and Child Life. Footprints, which depends upon charitable contributions, is based on the principle that nurturing the childâ&#x20AC;&#x2122;s emotional and spiritual well-being contributes to the healing process. In 2003, Heather started a golf tournament to raise money for Footprints. Mr. Gianino supported the golf tournament and learned about Footprints. "After 10 years I was ready to call it quits," Heather recalled, "but

Bill said, 'No. I'll get behind you and we'll continue.'" The Krieg Gianino Family Foundation was formed and continued to build on the annual tournament. In 2019, the Foundation made a $1 million commitment to Footprints. Through the tremendous work of the Foundation and Mr. Gianino, hundreds of thousands of dollars have been raised. While Mr. Gianino sometimes assisted other charities, "He concentrated most of his efforts toward Cardinal Glennon," Billy said. "He knew about Holly and my family," Heather said. "He knew how much Footprints helps the kids and families." The Foundation was not able to hold a golf tournament in 2020 due to the COVID-19 pandemic. However, Billy said, "I know we want to continue. We really want to try to grow it as we have been, year by year." Billy, along with his brother, Tony, will take their father's place on the Foundation's board of directors. Future tournaments will honor the memories of Holly Krieg and Bill Gianino, Heather said. "He was a great guy. He'd do anything for you."

glennon.org Fall/Winter 2020 â&#x20AC;˘ 65

GLENNON FRIENDS /

THANKS to the Development Board for their continuous support of SSM Health Cardinal Glennon Children's Hospital. President

Joseph E. Stroot President-Elect

Jake Eilermann Secretary

Lauren Vandegriffe Public Relations

Jeremiah Dellas Young Friends Coordinator

Serafina Nicolais Membership Chair

Liz Barrett Board Members

Ben Albers Teresa Braeckel Hannah Castellano Patrick Donlan Dana Ferrick Jake Fusia Lacie Good Mike Gregoritsch Marcy Handlan Zach Kratofil Rick Kuhlman Brian Lamping Chris Leonard Holly Maher John Marino Anna McKee Jeff Meyers Adam Morgenthaler Michael Niemann Declan O'Neill Nathan Riner Matt Sartori Patrick Sheley Tracey Swabby Patrick Van Cleave John Vitale Stephen Wagner Brandon Wappelhorst Ben Warning Alex Wasson

SPOTLIGHT

A Note from Jake Eilermann President-Elect, Development Board

he Development Board is an unbelievable opportunity that allows young professionals to make a difference in lives of patients at SSM Health Cardinal Glennon Children’s Hospital. Several years ago when given the opportunity to join the Development Board, I was honored to join the team so I could help ensure everyone receives the same wonderful experience that I did at Cardinal Glennon. As a baby, I spent over a month at SSM Health Cardinal Glennon Children’s Hospital and without the hospital’s expertise and precise care, I would not be here today. SSM Health Cardinal Glennon had a huge impact on my family during our time of need, and it is my honor to give back to the hospital that treated me with such excellent care as a young child. The Development Board is an impactful group of young professionals that aims to make a difference in patients' lives at Cardinal Glennon. During the pandemic, we have continued to make it our responsibility to keep a sense of connection between the patients, the Development Board and our donors. It has been a challenge, but the Development Board has done an excellent job of overcoming obstacles. Members of the Development Board take great pride in the annual events we organize: Scoops of Fun, Field-Side Party at Glennon Gallop and the Glennon Golf Classic. Each event has been modified to accommodate for safety precautions and a great example is the annual Scoops of Fun. Typically held at the Magic House, Scoops of Fun features ice cream vendors providing sweet treats from local shops to paidticket guests. This year, with the help of our great sponsors, we brought the sweet treats directly to the patients at SSM Health Cardinal Glennon Children’s Hospital. The event was a hit with the hospital and very rewarding for the Development Board members. Overall, the Development Board’s goal is to not only grow, but provide a greater awareness for volunteer and fundraising efforts for SSM Health Cardinal Glennon Children’s Hospital. The Development Board strives to make a difference in the lives of patients and their families, especially during these times when state-of-the-art healthcare and treatments need to be easily accessible. Most importantly, we want our efforts to help provide the same expertise and precise care I received as a child, regardless of a family’s ability to pay. Thank you to everyone that participated in our organized events in 2020, and for adapting to the supplementary programs during the pandemic to ensure the safety of our patients, donors and supporters. We have a very exciting schedule planned for 2021 and I encourage all of you to get involved and make a difference. We look forward to celebrating another successful year with you, and thank you again for your donations, time and energy that keeps this mission thriving.

Jake Eilermann President-Elect, Development Board

66 • SSM Health Cardinal Glennon Children’s Foundation

SPOTLIGHT

/ GLENNON FRIENDS

SPOTLIGHT NICU DONATION

Scarlett Jane Wooley Memorial Birthday Donation

n honor of what would have been Scarlett Jane Wooley’s first birthday, her parents Brittany and Nick wanted to do something special to help other parents, babies and siblings that are in the NICU. Scarlett spent her entire life (9 days) in the NICU. Brittany and Nick were by her side the entire time. After their time at SSM Health Cardinal Glennon came to an end, they wanted to make sure other parents did not have to worry about little things and are able to focus on spending every second with their babies during their stays. Brittany posted a Facebook event with an Amazon list and encouraged friends and family to share and donate. She and Nick delivered the items to SSM Health Cardinal Glennon Children’s Foundation in honor of Scarlett Jane on her first birthday, July 9. “Today was supposed to be a reminder of one of the worst days of my family’s life. While it is still a reminder of something so painful, we were able to use this day to honor our baby girl, thanks to the amazing support of friends and family. We wanted to

take a little stress off of other parents, grandparents and siblings, and to give other babies some things of their own. I am so honored to be able to do this in memory of my Scarlett Jane. We are so thankful to everyone who contributed, and are in awe of the support of our family, our baby girl and the NICU. Donated items for the NICU were valued at more than $2,000. The Wooley’s donation included 89 blankets/burp cloths, 112 outfits, 36 hats, 12 sound machines, 6 light machines, 40 towels, 28 wash cloths, 16 teething mittens, 5 mirrors, 13 toys/rattles, 12 books and hundreds of parent toiletries.

SPOTLIGHT THERAPEUTIC HEART PILLOW DONATION

Team Noah Foundation

he Team Noah Foundation is a longtime supporter of Cardinal Glennon kids. Even during this uncertain year, they’ve managed to find ways to support the hospital. They continued to fund therapeutic heart pillows which are given out to children after heart surgery. The pillows are the perfect size for kids to hug as they heal from their procedure. Often times, their caregivers will write messages of encouragement and hope with a marker on the pillows. As you can see from this photo, the group got creative this year as they were unable to visit the hospital to drop-off the pillow donation. This year they welcomed Jennifer Hesselbach as their new Foundation President. Jennifer has a deep connection with SSM Health Cardinal Glennon and is thrilled to be leading the Team Noah Foundation as they continue to raise funds to support children in our community.

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GLENNON FRIENDS /

SPOTLIGHT

SPOTLIGHT HEARTS FOR HEALTH CARE

Luke Claxton's Heart for Health Care

uke Claxton is an 8-year-old young man who visits SSM Health Cardinal Glennon for management of his asthma. When COVID-19 began in the spring, Claxton approached his grandmother, Charlotte Chaput, with an idea. He drew a picture of a t-shirt on a piece of paper. On the t-shirt were some stars, some hearts and a caption which read “Hearts for Healthcare.” He asked his grandmother if they could “make some shirts and sell them to raise money for Cardinal Glennon to help other kids.” Hoping to steward Luke’s selflessness and philanthropy, Charlotte took his drawing and had it further developed into a shirt. Luke’s spirit, positive attitude and great word of mouth resulted in the sale of 48 shirts and $700 raised for the hospital. Luke, his mother, Becky, and his grandmother, Charlotte, brought his $700 check to the hospital during

a recent Asthma Clinic visit. He proudly presented his check saying,“I just wanted to make sure the kids have what they need and this seemed like something I could do to help.”

SPOTLIGHT FAIRWAYS FORE KIDS

Fairways Fore Kids

or many, the game of golf is an opportunity to get outside and relax with friends, especially during the COVID-19 pandemic. However, Mark Brouk found the game to also be an opportunity to make a difference in his community. As the proud father of three kids, Mark decided he wanted to fundraise for SSM Health Cardinal Glennon to help families like his own who are going through tough times. In June, Mark created the Fairways Fore Kids fundraising page in conjunction with his participation in the St. Louis Golf Weekly Amateur Tour. “There’s nothing quite like competitive golf for me,” says Mark, “so I figured what better way to give back than to [find a way] to pair it with my favorite hobby.” To date, Mark as been able to raise more than $1,500 for SSM Health Cardinal Glennon and that total continues to grow as he is also donating any prize money he wins from the tournaments. When asked if he had any advice for people wanting to start their own fundraisers, Mark had this to say: “The best way to start your own fundraiser is to just jump right into it and stop delaying. I've wanted 68 • SSM Health Cardinal Glennon Children’s Foundation

to start a fundraiser for years but kept putting it off just because I felt weird asking people for money. Finally, one day I thought to myself, 'what am I waiting for, this is ridiculous?!'[…] I told my wife the idea and she loved it and it turns out Cardinal Glennon has an easy way to build your own fundraiser on their website. We shared it on social media and a couple weeks later we had raised more than $700! I had no idea so many people would give, and I'm thrilled I went through with the fundraiser! DON'T WASTE TIME JUST DO IT!”

Want to start your own fundraiser for Cardinal Glennon Kids? Visit glennon.org/fundraise today to get started.

SPOTLIGHT

/ GLENNON FRIENDS

SPOTLIGHT BENEFIT FOR THE DOROTHY AND LARRY DALLAS HEART CENTER

Kozeny-Wagner Annual Charity Golf Tournament

ach year Kozeny-Wagner Construction hosts a golf tournament at Sunset Country Club to support both the Dorothy and Larry Dallas Heart Center at SSM Health Cardinal Glennon Children’s Hospital and the Oncology Department at St. Louis Children’s Hospital. Mike and Pat Kozeny, of Kozeny-Wagner Construction, both have daughters who received care at these hospitals many years ago.

Although things looked a bit different this year, the goal was the same. Golfers came together (socially distanced of course) for a fun and fulfilling day of golf at a beautiful country club. Even with all the restriction that COVID-19 put on this year’s event, Kozeny-Wagner Construction was able to raise more than $30,000 for the local hospitals. They hope that next year will be a little less challenging and just as impactful.

SPOTLIGHT GRUB FOR GOOD

Grub for Good: Eat Local. Give Local.

he TeBrink Family has been raising funds for SSM Health Cardinal Glennon Children’s Hospital and Ronald McDonald House Charities of St. Louis for 10 years now. They hold both charities near and dear to their hearts as both organizations have cared for their son, Tyler, over 10 years ago as he was diagnosed with Rheumatic Fever and had to have open heart surgery to replace his aortic valve. Tyler is now a healthy son, husband and father of two! This year, with the outbreak of COVID-19, the family got creative in order to continue fundraising. Additionally, they set out to find a way to support the many struggling local restaurants that had previously participated in their fundraisers. Thus,

Grub for Good was born. Community members donated $25 to join the Grub for Good challenge and received 10% off at participating local restaurants. The challenge ran all summer from June through August and raised more than $2,000 for the local charities.

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SPOTLIGHT DECLAN'S BIRTHDAY

Declan's Birthday Wish

reat experiences provide memories that last beyond a lifetime. Declan Nelson and his family created such memories with the help of Aleeza Granote, oncology/hematology social worker. Declan Nelson wanted two things for his 19th birthday: the LEGO Star Wars Millennium Falcon set and a firework show in his hometown. Sadly, he had already aged out of traditional wish charities, so the hospital staff worked to fulfill his wishes instead. Through the thoughtful efforts of Friends of Kids with Cancer, Declan received the LEGO Star Wars Millennium Falcon set. His mother, Chris, said, “It had been on his wish list for as long as I can remember, but this was the ‘holy grail.' He was in awe of it and loved to show it off to everyone who walked into his hospital room.” He and his dad created memories as they spent time working on the set together during his lengthy hospital stay. His mother shared, “It wasn’t finished before he passed away, but we made sure to work on it in order for it to be finished in time for his memorial service and proudly displayed it among his other Legos.”

The memories continued as Declan’s second wish for a fireworks show for his town was brought to life with the help of Kellsie’s Hope Foundation. With incredible dedication, Granote coordinated with key leaders in Swansea, Ill. to secure approved air space, identify a fireworks company and obtain necessary permits in one week. This wish was shared with his hometown which provided so much support for him and his family. Granote said, “The families are so thankful for the incredible lengths these charities will go to bring happiness. I will never forget the look of pure joy on Declan’s face. I feel honored to support families along their journey and to fulfill wishes that are meaningful. This meant the world to him.” Declan and his family were filled with love, joy and great memories of seeing their whole town come together.

SPOTLIGHT KNIGHTS OF COLUMBUS

Tee Off Fore the Kids

n October 10, the Saint Alban Roe Council 12022 hosted its 20th Annual Tee Off Fore The Kids golf tournament at Pevely Farms Golf Club. This year was exceptional as the weather was the best ever seen and the crowd was a sell-out with 114 golfers. Our Chairmen, John Butler and Don Bieber, along with Grand Knight, John Stieferman, and our dedicated group of volunteers did an outstanding job putting in place all the necessary restrictions to keep our golfers safe while they enjoyed a fun day of golf and fellowship. Stieferman, said, “I cannot say enough good things about our Council and the dedication our Knights and Ladies have for the charities that we have taken under our wing. We hope and pray that in years to come the success of this event will continue to benefit many more children with special needs as they are the real winners in all of this!" Herb Driscoll, who started the very first event,

70 • SSM Health Cardinal Glennon Children’s Foundation

was present along with Jerry Ponder and Brad Bingaman, who have attended since the inception. Driscoll said, “Here we are 20 years later raising more than $500,000 for the Knights of Columbus Developmental Center! Congratulations to that small group of Brothers who initiated this amazing effort and to all the Brothers and Ladies of our Auxiliary who have stepped up over the years to continue that legacy of Charity, one of the tenants of the Knights. God bless all our loyal supporters and the work of those who carry out the mission of the Knights of Columbus Developmental Center. Amazing people!”

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WHERE ARE THEY NOW?

Where Are They Now? Tiffany McGaughey / THEN: 6-Year-Old Patient with Acute Myeloblastic Leukemia

now Rehabilitative Counselor

THEN

“

remember the day I was diagnosed. I was 6 years old,” recalled Tiffany McGaughey, who is now 33. “I was ripped from the normal life of a child one day, and the next day, I was in the hospital for four months. I didn’t really understand what was going on. The nurse explained to me that I had something called cancer, and that chemo was going to make me better. I didn’t understand how sick I was,” she said. Tiffany, who grew up in O’Fallon, Mo., was not feeling well, so she was taken to her pediatrician. “I had some labs done. When they got the preliminary results, they told my mom to get me to the hospital the next morning.” On that short notice, she began a lifelong relationship with SSM Health Cardinal Glennon Children’s Hospital. After additional tests at the hospital, “They told us I had acute myeloblastic leukemia,” she said. “They explained that was a more aggressive type of leukemia for children to get.” In later years, she realized how

NOW

very, very sick she was at that time. “They gave me a 10 percent chance of survival. The biggest goal for them was for me to see my seventh birthday.” After Tiffany was discharged from the hospital, she continued to receive outpatient chemotherapy infusions for three years, then oral chemotherapy doses at home. She missed out on a lot of activities during her early elementary school years. “I didn’t get to do a lot of things that kids got to do. I wasn’t able to see my friends. I wasn’t going outside. I had to wear a mask a lot of the time to protect myself. I knew I could end up worse off if I was exposed to a cold or flu,” Tiffany said. “Once I got stronger and started feeling better, I got to go back to school and got reacquainted with friends. When I was around 8 or 9, I got back into softball again and played until I was 14. I had a relatively normal life.” She earned an undergraduate degree in social work at the University of Missouri-St. Louis and a master’s degree in rehabilitative

72 • SSM Health Cardinal Glennon Children’s Foundation

counseling at Maryville University. “I work with kids ages 16 to 25 who have serious and persistent mental health issues,” she said. “I help them work through any kind of trauma they have been through to help them get back to where they want to be in life. It is a rewarding career, seeing kids make positive changes and flourish.” Tiffany returns to SSM Health Cardinal Glennon annually for a longterm follow-up clinic. Many of her doctors and nurses spent decades-long careers at SSM Health Cardinal Glennon. Some are still there, so during her check-ups, she visits the inpatient cancer unit. “I have a lot of memories of nurses coming in to play with me and always trying to brighten my day. There are nurses who remember me. It is really cool to see how they cherish kids and make you feel special,” she said. “I am extremely lucky I had the best medical team taking care of me, doing their best to get me through. It is definitely a miracle. I am blessed.”

Dear Friends,

or the last five years, our employees have challenged our organization with making an impact on our surrounding community. One of the ways we at Beck Flavors have accomplished this is by supporting SSM Health Cardinal Glennon Children’s Hospital in many ways, including the Glennon Glow and Glennon Gallop charitable events. At the peak of the COVID-19 pandemic, we also provided lunches for all the front-line healthcare workers at Cardinal Glennon to show our support and appreciation for everything they do. Beck Flavors’ roots are based in St. Louis, going all the way back to 1904 when the company started in East St. Louis. Since its inception, it has been a company focus to continue partnerships and collaborations with organizations like Cardinal Glennon because, just like Beck, they place an enormous value on compassion, respect, service and community - where customers are the first priority and quality is achieved through people. We support Cardinal Glennon, because you cannot overstate the impact Cardinal Glennon has had on the St. Louis community since it first opened its doors in 1956. At Beck Flavors, we have an ongoing challenge to each of our employees, “Do. Better. BECK.” This is our call to action for our employees to look outward into the community and find ways that we can have a positive impact. We constantly want to improve and increase our impact at SSM Health Cardinal Glennon. We call on you to consider ways that you, your organization, your family and/or your company can have an impact at Cardinal Glennon, too. Finally, from the Beck Flavors family of employees, we want to thank the staff, doctors and nurses for your never-ending devotion to the highest quality care and well-being of the patients at Cardinal Glennon and the impact you make every day on the greater St. Louis community.

Thank you,

Matt Carr, President, Beck Flavors Member, Board of Governors SSM Health Cardinal Glennon Children’s Foundation

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