Glennon Magazine Spring/Summer 2020

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Glennon S S M H ealth C ardinal G lennon Children’s Foundation

glennon.org

Mighty Casey and the

GIRAF Team

Spring/Summer 2020, Volume 39, Number 1


VIEWPOINT

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hirteen years ago, a positive chapter in my life began as I joined the SSM Health Cardinal Glennon Children’s Foundation Board of Governors. The health of our region’s children is very important to my wife Jennifer and our family, so I am honored to start my next new chapter and begin my two-year term as the Board President. As you will see in the pages that follow, SSM Health Cardinal Glennon ended 2019 on a high note when we received the news that we had been awarded Magnet® designation from the American Nurses Credentialing Center. This honor confirms what we already knew, that Cardinal Glennon’s front line caregivers are among the best of the best, going above and beyond for the health and safety of their patients. As the nation’s first free-standing Catholic children’s hospital, SSM Health Cardinal Glennon is home to many programs that are the first of their kind in the region. Our expert and partner SLUCare clinicians are leaders in their fields, providing creative solutions and innovative treatments for every child who comes through the hospital’s doors. In this issue of Glennon magazine, you will read about some of the exciting things going on at SSM Health Cardinal Glennon in 2020. From the latest in cancer treatments and bone marrow transplants to innovations in 3D printing, it’s all happening right here in St. Louis. As we navigate these challenging times, I would like to extend my personal thanks to each and every one of our donors. You make it possible for the dedicated staff at SSM Health Cardinal Glennon to not only help children heal today, but gain new skills and insight to care for future generations. God Bless!

Jim Koman President, Board of Governors


Contents

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36 20

44 38 30

FEATURES

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Light Up Glennon The inaugural holiday events were a big success!

Glennon Glow Benefiting inpatient and outpatient cancer services

Journey to Magnet®: Watch Us Shine! Heart & Soul Benefiting the Dorothy and Larry Dallas Heart Center

Mighty Casey and the GIRAF team

DEPARTMENTS

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Glennon Sunday

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Exceptional Health Care, Closer to Home

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“ That couldn’t be done before we had 3D printing” Glennon Style

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GLENNON 6 AROUND Find out the latest news AROUND 8 GLENNON THE CORNER/GLOBE Our impact grows

CORNER 16 CORPORATE Dierbergs Markets AMBASSADORS 50 GLENNON How to stay connected

Thank you to our 2020 Sponsors

THE EXPERTS 52 ASK Summer Safety

Nationally-recognized Bone Marrow Transplant Program

FRIENDS 54 GLENNON Supporting Cardinal Glennon Kids!

Achieves exceptional outcomes

Meet Kennedy 2020 Homers for Health Co-Chair

Where Faith and Healing Unite

ARE THEY NOW? 68 WHERE Brooke Schuessler

2020 CMN Ambassadors Faith, Willa & Kevin

ON THE COVER: Patient Casey Breen and his mom, Anna glennon.org Spring/Summer 2020 • 1


Glennon Volume 39 Number 1 Published semiannually by SSM Health Cardinal Glennon Children’s Foundation

BOARD OF GOVERNORS Most Reverend Robert J. Carlson 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 James F. Whalen Chairman-Finance

The last few months have been full of uncertainty and change. The COVID-19 pandemic has forced us all to take a step back and reevaluate what is important to us, and everyone has been affected in some way. We continue to pray for all of you, and your families, as we navigate this crisis together. Like all hospitals in our region, we have also had to make adjustments to our daily work while at the same time providing world-class care to the kids in our region who still need us. Several of our fundraising events and programs have been cancelled, postponed or reformatted in some way to respond to the world around us. In these trying times we remain #CommittedToWhatMatters.

Molly N. Cline, PhD Secretary

This issue of Glennon magazine highlights a few of our top programs, including our Bone Marrow Transplant Program and GIRAF Feeding Team. You’ll also learn about our journey to Magnet® status, a true testament to the quality of nursing care that our patients receive.

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

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

Leslee Holliday Dennis J. Jacknewitz 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 Jerry E. Ritter Sr. Mary Jean Ryan, FSM Farouk Sadiq, MD Shermini Saini, MD 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 EX-OFFICIO Mick Gilliam Brigette McMillin Joe Stroot

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.

As a member of the SSM Health family, one of our core values is Community. We are proud to be part of a longstanding tradition of selfless service in times of crisis, responding with compassion to anyone who needs us. The role that you play in helping us meet the needs of all children, especially the marginalized members of our community, is absolutely vital. Thank you to all who have stepped up to serve during this time of crisis. Whether you made a gift to our Urgent Response Fund, donated goods or services or even prayed for us, we appreciate each and every one of you. On behalf of all the children, their families and our front line caregivers, we are so grateful to you for helping us reveal God’s healing presence every day.

Sincerely,

Sandy Koller President SSM Health Cardinal Glennon Children’s Foundation


WHO YOU HELP

your giving helped make these miracles possible in 2019

307

children with complex illnesses and their families received comprehensive support through our Footprints program

663

4,249

critically ill newborns transported to SSM Health Cardinal Glennon

visits made to the Knights of Columbus Developmental Center, funded in part by the Missouri and Illinois Knights of Columbus

3,200 chemotherapy and infusion treatments per year that will take place in an improved space at The Costas Center

0

23,336

visits were made to The Danis Pediatric Center in 2019

children turned away

1,410 patients received instruction and advocacy from our Shining Star School

726 families experienced improved bonding and peace of mind thanks to the NICView system

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

glennon.org


HOW YOU HELP ONE OF ONLY

through innovation, compassion and excellence

8% 82

3D models were created by our 3D Printing Center of Excellence to plan surgeries and educate families

of hospitals nationwide to achieve Magnet status

Through our exceptional health care services we reveal the healing presence of God.

200,000+ children each year

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Neonatal Transport Program in St. Louis

60 MILLION

$

provided in community benefit

by SSM Health Cardinal Glennon, which includes charity care, education, outreach programs and more

impacted by the programs and services of SSM Health Cardinal Glennon Children’s Hospital

The number of first responder agencies in MO and IL now part of our tracking system for children with special health care needs

Age of our new Facility Dog Thor

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ST

OUR MISSION:

88

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

2

new facilities to improve access to St. Louis county residents

glennon.org


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


AROUND GLENNON / FIND OUT THE LATEST NEWS

Facility Dog Thor turns 3!

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taff and patients were excited to have the opportunity to celebrate Thor’s 3rd birthday this past January with multiple parties. Thor is the facility dog for SSM Health Cardinal Glennon, and since last summer he has worked alongside our Child Life Team to provide comfort and motivation to kids, parents and caregivers. The patient party featured Thor-inspired crafts, while the staff party included a photo booth and cake featuring the birthday boy. The very special cake was made by our friends at Treats Unleashed, which he thoroughly enjoyed. Thank you to everyone who helped us celebrate Thor’s big day! Thor came to us from Duo Dogs, a not-forprofit organization that provides facility dogs, therapy dogs and service dogs to individuals with disabilities and other special needs. You can follow more of Thor’s adventures on Instagram at GlennonsMightyLabraThor.

Kendra Cares

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he Kendra Cares program brings the joy of the Kendra Scott in-store Color Bar to patients by allowing them to experience the magic of designing their own piece of customized jewelry at no cost. On December 6, the Kendra Scott team set up three stations in the 3 South playroom for mobile patients to color, create jewelry and write letters of gratitude to their caregivers. Patients chose from a variety of necklace, bracelet and earring designs, selecting the metal and stone colors to make it their own. Eyes were wide as the Kendra Scott team assembled each piece and gifted it to the patients to keep. For patients unable to leave their rooms, the team took a cart of assorted jewelry options to oncology patients on 4 North and to the dialysis unit. The cart brought the Color Bar experience to the patients’ bedside, allowing them to feel the jewelry and play with the stones.

Many designed a jewelry piece for themselves and someone special to them. In one room, a patient created a matching set for her mom and sister as a symbol of fighting her illness together as a family. Another teenage boy was overcome with gratitude that he was able to make a necklace for his girlfriend who has been his biggest supporter. A mother thanked the team for bringing a smile to her daughter’s face, saying she hadn’t seen her light up in weeks. “There are numerous stories just like these and every family we met that day expressed how we were the sunshine in their day,” remarked Anna Keenan, Regional Marketing and Philanthropic Manager for Kendra Scott. “And, they most definitely were the sunshine in our day,” she said. We’re grateful for our partnership with Kendra Scott and our Child Life Team who make experiences like these possible for our patients.

6 • SSM Health Cardinal Glennon Children’s Foundation


FIND OUT THE LATEST NEWS

/ AROUND GLENNON

35 Years Honoring Monsignor Lloyd Sullivan

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ince 1984, Epiphany of Our Lord Catholic Church in south St. Louis has honored one of the visionaries behind the founding of SSM Health Cardinal Glennon Children’s Hospital, Monsignor Lloyd Sullivan. Monsignor Sullivan, along with Peter Danis, MD, Frank Guyol, Leo Wieck and the Franciscan Sisters of Mary, all approached then-Archbishop of St. Louis Joseph Ritter in the late 1940s to advocate for a free-standing hospital to treat children suffering from injuries and illnesses of all kinds. That momentous meeting led to Monsignor Sullivan being appointed in 1949 by then-Archbishop Joseph Ritter to serve as his liaison to the planning and fundraising campaign for the hospital. With Monsignor Sullivan’s leadership, SSM Health Cardinal Glennon Children’s Hospital opened in 1956. “Monsignor Sullivan was a man of vision and pursued any way to make his dreams a reality,” noted Monsignor John Borcic. “He saw each endeavor as a response to God’s call to build and strengthen His Church and the faith of God’s People. He strove to do this by making Christ present to children and present to others through children.” Monsignor Borcic was one of the presenters during a special Mass that took place last October in the hospital chapel to celebrate the faith-filled efforts of Epiphany Parish which held a wide range of fundraising efforts for SSM Health Cardinal Glennon in honor of Monsignor Sullivan. He served as pastor

at Epiphany for 26 years before he passed away in 1984. “Monsignor Sullivan was a giant in our eyes as kids attending Epiphany of Our Lord School in the 1960s and 70s,” said Jim Przada, a member of the church. “He was tall — 6’5” — with a slender build and he wore a size 13 shoe. But he was so much more than his physical stature. He was committed to many organizations and community endeavors and his first love was Cardinal Glennon Hospital and the ‘kiddos,’ as he always referred to the kids.” In his memory, church members established the Monsignor Sullivan Committee. “He was loved by so many people that we decided we needed to continue his legacy,” explained Przada. “Knowing his love for the hospital, we decided the best way to continue that legacy would be through fundraisers for Cardinal Glennon Hospital.” Their efforts grew year after year. In 35 years, the committee raised more than $100,000 for the hospital through pancake breakfasts, softball

Cristie Rossel Retires

tournaments, pizza parties and car washes. The Monsignor Sullivan Committee disbanded late last year. As part of the celebratory Mass in the hospital chapel last October, a portrait of Monsignor Sullivan was dedicated. Monsignor Borcic said, “Most, if not all of us, are better off today because of Monsignor Sullivan’s vision, his tenacity, his courage and his faith in God. I believe that he embodied the core values this hospital adheres to: compassion, respect, excellence, stewardship and community. May he be generously rewarded by Almighty God for his insight and for the tremendous love he had for all the kiddos.” He added, “The Monsignor Sullivan Committee did all the hard work over the years, keeping Monsignor’s memory alive and devoting themselves to raising money for the hospital. They are the real heroes, walking in Monsignor Sullivan’s footsteps in their love for the Church and their care for others.” Przada said, “It wasn’t really work, but a labor of love.”

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ristie Rossel (pictured center) retired after 44 years of nursing practice at SSM Health Cardinal Glennon. Starting as a bedside nurse in the NICU in 1975, she became a doctorally prepared director of the Neonatal Intensive Care Units, transport team, Access Center and St. Louis Fetal Care Institute. Cristie helped plan and design two new neonatal intensive care units at SSM Health Cardinal Glennon with state-of-the-art equipment, new styles of patient care and private rooms. She was also instrumental in bringing nurse practitioners to the NICU. Cristie was a member of the transport team and went on to become the director. She then grew that team to have a 24-hour access line and two satellite transport teams in Cape Girardeau and Hannibal, MO. Cristie also directed the St. Louis Fetal Care Institute from its inception and was instrumental in helping it grow into one of the leading fetal care centers in the country. glennon.org Spring/Summer 2020 • 7


AROUND GLENNON / FIND OUT THE LATEST NEWS

AL N I RD A C

Glennon Around the Corner: GLENN ON Refugee Home Visitation Program “Our families are the picture of resilience.”

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n 1999, the FACES (Foreign Adoption Clinic and Educational Services) program was established at The Danis Pediatric Center by SLUCare physician Jennifer Ladage, MD, to assist parents and community pediatricians with meeting the unique medical and emotional needs of children adopted from abroad. While foreign adoptions have declined, Dr. Ladage still sees a steady stream of foreign-born children in her practice. St. Louis has long been a hub for immigrants and refugees arriving in the U.S., but newly-arrived families face a host of hurdles. Thanks to agencies like the International Institute and Oasis, families receive assistance with housing, life skills, citizenship, employment and language skills. But up until recently, the unique health care needs of refugee children were going largely unmet. In 2012, Dr. Ladage began evaluating immigrant and refugee children who had been identified by their school as having behavioral or developmental issues that were affecting their school work. What Dr. Ladage uncovered was a host of unrelated issues, including vitamin deficiencies, lead toxicity, hearing and vision loss, intellectual disabilities and infections. In addition, parents were having difficulty navigating the complexities of the health care system. These discoveries led her to assess what could be done to better serve these vulnerable members of our community. As more and more families were enrolled in FACES, it became apparent that many were struggling to return for follow-up appointments and tests, or to comply with Dr. Ladage’s other recommendations, due to transportation, language and other barriers. Through funding from the

FACES program nurse Leslie Rodick (L) and SLUCare physician Jennifer Ladage, MD, with the Almuradi boys, ages 8, 5 and 4 months

Lutheran Foundation of St. Louis and the Episcopal Presbyterian Health Trust, a nurse was hired to assess gaps in care for refugee families, provide ongoing coordination and, for families with no transportation, visit them in their homes for follow-up care.

to call 911 and even how to read a thermometer (especially helpful for families whose native language uses different numerals). “We also review anything that we talked about in the clinic, make sure they picked up their child’s medication

St. Louis has long been a hub for immigrants and refugees arriving in the U.S. Every Wednesday afternoon finds Dr. Ladage making home visits along with program nurse Leslie Rodick, BSN, RN. For families with limited English proficiency, interpreters are available either in person or over the phone. Families receive educational resources in their native language that outline basic health care knowledge, like how to make a doctor’s appointment, when to come to the emergency room, how

8 • SSM Health Cardinal Glennon Children’s Foundation

and have them demonstrate that they know how to give the medicine correctly,” says Rodick. “We also teach them about preventive care. Before, they may have only seen a doctor when they were sick.” “Visiting families in their home gives us extra time,” Rodick continues. “We can work with them at a slower pace because we are not constrained by the clinic’s schedule.”


Glennon Around the Globe: Caribbean

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n November, a NICU training team led by Dr. Robert Fleming of SSM Health Cardinal Glennon Children’s Hospital arrived in St. Vincent, an island in the Caribbean, just in time to celebrate World Prematurity Day with children and families who have seen their lives impacted. Children from across St. Vincent and the Grenadines who have had their lives changed - and saved - shortly after birth were able to attend with their families to say thanks and highlight how vital it is for children to have access to advanced care in those first few moments of life. The group, led by Fleming, is teaming up with World Pediatric Project on a goal to ensure that every child born in the Eastern Caribbean has access to advanced newborn medical care by 2023. They are working with nurses and midwives on techniques and procedures in neonatal care that mean the difference of a lifetime for children born too soon, giving them a better chance at a life of opportunities, hope, happiness and health. World Pediatric Project CEO Susan Rickman says the program will make a huge impact in these developing countries. “The ultimate outcome of this program is to provide sustainable access to skilled neonatal care for the approximately 650 babies born each year in these two countries [St. Vincent and the Grenadines and Grenada],

Glennon

thus achieving 100% access to newborn advanced or urgent medical care.” Dr. Fleming adds, “It became clear over time that the biggest issues had nothing to do with the personnel that were there, it was more of a matter of bringing into each one of the settings the kinds of additional information that they just wouldn’t have otherwise. To focus in on several particular aspects of newborn care that we could work together best on that would make the biggest difference for the babies, to take care of our most vulnerable and most valuable resource, the children.”

S S M H ealth C ardinal G lennon Children’s Foundation

glennon.org

UPDATE Spring/Summer 2019 issue Luke has been very blessed to be back in school full time and even got to play up a level with the 5th grade basketball team! His family is so thankful for his good health and his coordination returning after chemotherapy. He is on track

Luke, Glennon Kid

2019 Homers for Health Co-chair 9 Years Old and Leading the Team page 32

to finish his more than three-year treatment for acute lymphoblastic leukemia in September 2020, thanks be to God!

Spring/Summer 2019, Volume 38, Number 1

glennon.org Spring/Summer 2020 • 9


AROUND GLENNON / CELEBRITIES GIVING BACK

Celebrities Giving Back 1

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10 • SSM Health Cardinal Glennon Children’s Foundation

Connor Davis Jonathan Hayes, Tanner Carew Matt McCants Chris and Lauren Pronger Chris and Lauren Pronger with family Jaden Schwartz, David Perron Justin Faulk, Jake Allen, Jaden Schwartz, David Perron, Jordan Kyrou Jordan Kyrou, Justin Faulk Jake Allen


URGENT RESPONSE FUND

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he Urgent Response Fund was created to help meet the critical needs of SSM Health Cardinal Glennon as we respond to the COVID-19 crisis. Your gifts can help provide

essential supplies, equipment and basic needs to our front line health care workers to continue to serve all patients in need. Your support also enables the treatment of all patients regardless of ability to pay, allows the expansion of our testing and diagnostic capacity, and funds other areas of greatest need related to the pandemic. glennon.org/UrgentResponse


Many in the community have stepped up courageously and generously to lend a helping hand during the COVID-19 crisis. Check out just a few ways our community has shown us they are #CommittedToWhatMatters.

Crave Coffeehouse provided bi-weekly meals and treats through sponsor-a-meal program

Glennon kid, Blake Bahr, said thank you with cookies for caregivers

Kaldi’s Coffee created Gratitude Blend and delivered to caregivers

12 • SSM Health Cardinal Glennon Children’s Foundation

PASCO donated UV-C light treatment trailer to treat PPE


Marriott St. Louis Grand donated 20,000 masks to our caregivers

4 Hands Brewery donated gallons of hand sanitizer

Nurses, Nancy and Bethany, made Easter outfits for NICU patients

Facility dog, Thor, dressed up in his St. Louis Blues jersey to entertain patients while social distancing

Art Therapist, Bri, decorated walkway to employee entrance

glennon.org Spring/Summer 2020 • 13


LIGHT UP GLENNON 2019

Watch the Video

Light Up Glennon

The inaugural holiday events were a big success!

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he inaugural Light Up Glennon events were a big success! On two nights in December, hundreds gathered outside of SSM Health Cardinal Glennon Children’s Hospital to show how the power of presence can help heal and support those in the hospital. The idea behind the events was to show that the community is thinking of our patients at all times. During the day at the hospital there can be lots of special visitors and feel like more of an ‘active space,’ but sometimes at night, the activity slows down and patients and families might feel more alone. P R E S ENTE D BY:

This was an opportunity for anyone to come to the hospital grounds, wait for the right moment and turn on their flashlights to aim at the hospital windows, letting everyone inside know that they are loved and cared for. Of course, the really cool part was that the patients inside were also given flashlights to shine back to let the community know how much it was appreciated. Our amazing Child Life Team made their way through the hospital during the day and handed out the flashlights to families and patients. The staff only told them that something special was going to happen at night and at a certain time, go to their windows and look out. As crowds gathered outside, the excitement grew until a final countdown from 10, then all of the lights were turned on and Christmas carols began. In addition to all of

14 • SSM Health Cardinal Glennon Children’s Foundation

the people standing around the hospital grounds, we were also blessed to have the support of numerous first responders and emergency crews. We are so thankful for the time given by our police, fire and ambulance crews to show their support for our patients. One patient, who had just received a heart transplant 10 days before the second event said, “Kids want that Christmas spirit and it’s good when they shine their lights; it cheers up the place. It takes your mind off things a little bit. It means a lot to the kids here. It definitely does.” His mom added, “Light Up Glennon means a lot to us, because the kids can get out of their rooms and try to live some kind of ‘normal’ life. You see around us a lot of kids suffering, and people showing up like this, gives us hope that we are going to be able to resume some kind of normalcy.”


Another mother of a patient added, “To me, it just brought joy to the kids, and to see the community participating, it was pretty cool.” Her husband added, “It’s awesome to see how all of these people have come together and with my son

being in here, it shows how much people still care about what goes on in their lives, so, it’s awesome.” We would like to give a special thank you to KTRS for broadcasting live for both events and being our presenting sponsor. We would

also like to thank Villa Lighting for providing the flashlights to the patients and community. Plans for 2020 are to expand the event even more, so make sure to check glennon.org for future updates.

glennon.org Spring/Summer 2020 • 15


CORPORATE CORNER

Like customer service, community service is a priority at Dierbergs

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e believe in giving back to our friends and neighbors in our communities. We realize that to most effectively reach families in need of assistance we have to work in partnership with organizations that are making an impact — like

may pledge a single contribution to H4H or pledge to donate a specified amount for every home run hit by the Cardinals during the season. “We got involved when Homers for Health started in 2012,” Padousis said. “We have had a

Dierbergs Markets was already 102 years old when the first patients were admitted to SSM Health Cardinal Glennon in 1956. Cardinal Glennon is,” said Laura Dierberg Padousis, vice president and secretary of Dierbergs Markets. Dierbergs is a sponsor of Homers for Health (H4H), a fundraising program conducted in association with the St. Louis Cardinals baseball team to support patients and families at SSM Health Cardinal Glennon Children’s Hospital. Cardinals fans

campaign at our registers each year to engage our customers, then Dierbergs makes a corporate donation as well.” Through Dierbergs’ first eight years on the H4H team, it offered customers paper baseball replicas that they could sign and post on a wall after making a donation. “There was a sea of baseballs on our walls showing the enormous

16 • SSM Health Cardinal Glennon Children’s Foundation

customer support for Cardinal Glennon. It was a neat thing to see,” Padousis said. Dierbergs Markets was already 102 years old when the first patients were admitted to SSM Health Cardinal Glennon Children’s Hospital in 1956. Dierbergs and its 4,000 employees now operate 24 stores in the St. Louis metropolitan area and one in Osage Beach at the Lake of the Ozarks.


Many of the Dierbergs team members have experienced SSM Health Cardinal Glennon’s care through children or grandchildren — or as their former patients themselves. “One of our managers had a child who was in Cardinal Glennon’s care,” said Greg Dierberg, president of the market chain. “They are extremely strong advocates for the hospital and praise Cardinal Glennon to the highest level. They thought the nurses and doctors went out of their way to make them feel like they were being cared for and were doing everything they possibly could for their child.” “The care provided for our daughter, Zoey, was beyond what we expected,” said Mike Rudolph, Assistant Store Director. “The respect and courtesy we were given in the face of her condition was something we will always remember.” The first Dierbergs market opened in 1854 on Olive Street Road in west St. Louis County. That was then a rural area so the country store sold not only food but also kerosene, boots, shoes, clothing, fabric and hardware. Laura and Greg are members of the fourth generation of the Dierberg family to operate the markets. The markets follow a motto: “Like customer service, community service is a priority at Dierbergs.” The Dierberg family has long believed in giving back to friends

and neighbors in its communities. In 2018 the markets donated 1.5 million pounds of food, gave $26,000 in gift cards to people in need and raised $680,657 for charities. Homers for Health was founded by former Cardinal Matt Holliday and his wife Leslee. The program has raised more than $5 million from Cardinals fans across the country and has helped create new child-friendly spaces including the Imaging Center, the Pediatric Intensive Care Unit and the inpatient and outpatient cancer units. Contributions also assist the hospital in remaining

HELP DIERBERGS MAKE A DIFFERENCE

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uke started his journey at SSM Health Cardinal Glennon Children’s Hospital on May 19, 2017 at the age of 7 when his mom noticed some severe bruising that Luke could not explain. After blood tests, Luke was diagnosed with acute lymphoblastic leukemia. When Luke first went into the hospital for induction chemotherapy, the inpatient cancer unit, 4 North, was undergoing renovations. Later on, Thanksgiving of 2017, he was hospitalized in the newly remodeled Leslee and Matt Holliday wing

Luke, Glennon Kid 2019 Homers for Health Co-chair of 4 North. “It was such a big change from when I was in the hospital in the summer,” Luke recalled. “I had my own bathroom, the room was bigger, and it was decorated and painted like I was staying on a tropical island or beach.” These renovations were made possible through Homers for Health. Make a pledge or one-time gift today to help children like Luke.

MAKE YOUR PLEDGE

glennon.org

DONATE NOW JUST TELL YOUR CASHIER

“We enjoy seeing first-hand how the money that is raised provides hope to Cardinal Glennon kids and their families...” at the forefront of technology and innovation, maintaining top-tier clinical programs and providing vital supportive services to patients and families, regardless of their ability to pay. Dierbergs is also a sponsor of the H4H Home Run Derby in which students compete at their own schools to hit wiffle balls farthest from a tee. Winners at each school advance to the Home Run Derby Championships which are attended by St. Louis Cardinals players. “We are proud to Bob Dierberg, Greg Dierberg and Laura Dierberg Padousis

be part of this program and happy to be a part of the Cardinal Glennon support system,” Padousis said. “We enjoy seeing first-hand how the money that is raised provides hope to Cardinal Glennon kids and their families. Dierbergs has raised more than $200,000 for Cardinal Glennon and we feel this year is going to be a more exceptional year because we are changing our campaigns to round-ups for our charitable partners.” Through the round-up offer, customers may quickly add a gift by rounding their payment up to the next whole dollar. ”We think we will see a greater percentage of people converting to a gift and the opportunities will be even greater to raise money,” Dierberg said. glennon.org Spring/Summer 2020 • 17


GLENNON GLOW 2019

Glennon Glow Benefiting inpatient and

outpatient cancer services at SSM Health Cardinal Glennon

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ast November, the fourth annual Glennon Glow welcomed guests into the RitzCarlton with a Fire and Ice theme. The frosted entryway and ice-bar gave way to a flame-tipped stage

and candle-lit tables in the ballroom. The evening’s festivities were kicked off by Cardinal Glennon patients Jamie-Lynn Haley and Ayla Winn, who led the SSM Health Glee Choir in singing “This Little Light of Mine” to the delight of the audience.

Jamie-Lynn has been receiving treatment for an extremely rare form of pediatric leukemia since March of 2019. Her love of music has helped carry her through the difficult treatment and led her to perform not only at Glennon Glow but also at the Glennon Golf Tournament in September 2019. Ayla comes to SSM Health Cardinal Glennon to be treated for lupus. She has received treatment both in the Dialysis Unit and The Costas Center. Both girls have benefited greatly from their time participating in SSM Health Cardinal Glennon’s Music Therapy Program. Glennon Glow was co-chaired by Ed and Karen Hempstead. Ed has been with the SSM Health Cardinal Glennon Foundation’s Board of Governors since 1975, following the exceptional treatment of his daughter at the hospital.

18 • SSM Health Cardinal Glennon Children’s Foundation

KSDK anchor Anne Allred returned as this year’s emcee, and the black-tie affair featured a special performance by comedian Jeff Allen. Proceeds from the event once again benefited inpatient and outpatient cancer services at SSM Health Cardinal Glennon. Ed Hempstead presented the prestigious Glennon Award to SLUCare physician and member of the Board of Governors, Dr. Dennis O’Connor, who has worked in pediatric infectious disease and pediatric hematology at SSM Health Cardinal Glennon since he finished his residency in 1970. For more than 40 years, Dr. O’Connor devoted his career to P R E S E N T E D BY:


caring and advocating for children, and since 2011 has served as Emeritus Professor of Medicine. He was also instrumental in the creation of Footprints, a program that provides palliative care to patients and families dealing with a life-changing, sometimes lifethreatening, diagnosis. Following Dr. O’Connor’s emotional acceptance speech, Hempstead invited SLUCare

physician Dr. Chris Hugge to the stage for a surprise announcement. Dr. Hugge shared a heartfelt story of working alongside Dr. O’Connor, thanking him for his mentorship and friendship, and the excellent care he provides on behalf of the patients he has helped. Hempstead then recalled Dr. O’Connor and his wife Bea to the stage to announce that the Board of Governors had designated

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$2 million to create an academic chair in his honor: The Dr. Dennis O’Connor Chair of Palliative Care, to provide ongoing support for the Footprints program. Dr. O’Connor’s humble appreciation of the honors he received didn’t leave a dry eye in the house. This special evening was once again presented by the Centene Charitable Foundation and we remain forever grateful for their generosity.

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1 Dennis O’Connor, MD, Ed Hempstead 2 Dana and Jim Whalen 3 Jeff Drew, Jim Brennan, Ryan Redlingshafer, Andy Blassie, Ruth Redlingshafer, Ed McSweeney, Tim Barrett Seated: Joanne Blassie, Rose Brennan, Margaret Barrett, Liz Mantych 4 Karen Castellano, Rodger Riney, Paula Riney, Jim Castellano 5 Peggy and Jerry Ritter 6 Monique and Galen Bingham 7 Kathy and Mike Bruno

glennon.org Spring/Summer 2020 • 19


Journey to Magnet : ®

WATCH US SHINE! 20 • SSM Health Cardinal Glennon Children’s Foundation


Watch the Video

Magnet celebration in Danis Auditorium

The balloons and confetti rained down and kazoos buzzed everywhere as nurses, physicians and leadership at SSM Health Cardinal Glennon Children’s Hospital heard a long-awaited announcement live via telephone from the Commission on Magnet ®: “It is my absolute honor and privilege to officially notify you that the Commission on Magnet has unanimously voted to credential SSM Health Cardinal Glennon Children’s Hospital as a Magnet ® organization!”

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he announcement, made on December 20, 2019, was the culmination of several years of hospitalwide hard work and dedication to be recognized as one of the best hospitals in the country for Excellence in Nursing Services. The recognition, from the American Nurses Credentialing Center (ANCC), is the highest honor in nursing excellence. SSM Health Cardinal Glennon is the first SSM Health hospital in the St. Louis region to obtain Magnet® recognition. “It means you can be proud every day that what you’re doing

for kids is the very best patient care and that you are at the top of your game as a nursing professional,” Candace Jennings, RN, FACHE, Regional President of SSM Health – St. Louis, told the gathering. With more than 6,000 hospitals in the United States, just over eight percent have achieved Magnet® status. “This is the biggest accomplishment in the nursing profession that you can accomplish,” said Kathy Donovan, MSN, BSN, RN, NE-BC, Chief Nursing Officer and Chief Operating Officer of SSM Health Cardinal Glennon. “It validates that we are among the glennon.org Spring/Summer 2020 • 21


JOURNEY TO MAGNET®: WATCH US SHINE!

best in the nation – not just in St. Louis, not just in Missouri, but in the entire country. It proves our foundation of excellence and the values that drive our entire staff to strive harder each day to meet the health care needs of the children and families we serve.” Even more extraordinary, SSM Health Cardinal Glennon earned 11 exemplars from the Commission. “An exemplar is a concept, practice or program worthy of imitation,” said Amber Orton, MBA, MSN, RN, NE-BC, Director of Nursing Excellence and Professional Development. “In other words, we are encouraged to share evidence-based best practices we have implemented here with other organizations to improve the delivery of care globally.”

Hospitals,” includes Magnet® recognition in its ranking criteria as a benchmark for quality inpatient care. Why? Because evidencebased research over the past 20 years has found that organizations that achieve Magnet® recognition have a lower risk of 30-day mortality among patients as well as higher patient satisfaction. Also, there is higher job satisfaction among nurses, a critical component as hospitals strive to maintain and increase nursing staff in a time of nursing shortages. The Commission on Magnet® noted that SSM Health Cardinal Glennon was outstanding in a wide range of areas, including

“It validates that we are among the best in the nation – not just in St. Louis, not just in Missouri, but in the entire country.” Why is Magnet® Recognition Important? Magnet® is more than just a simple designation. It requires extensive commitment by hospital leadership, physicians, staff and nurses to identify and implement standards that continually enhance the quality of care and processes across all departments, programs and services. In fact, U.S. News & World Report, which releases an annual list of “U.S. News Best

excellent care practices to prevent central line-associated bloodstream infections (CLABSIs), catheter-associated urinary tract infections (CAUTIs) and falls with injury; as well as for starting innovative programs such as STARS, the Special Needs Tracking & Awareness Response System for special needs children in the community that is expanding throughout hospitals in Missouri, Illinois and across the country.

22 • SSM Health Cardinal Glennon Children’s Foundation

In fact, SSM Health Cardinal Glennon received exemplars in every Magnet® category, including for community care efforts. “Not a lot of organizations get exemplars for community care, which is what Cardinal Glennon is known for,” said Donovan. “This is a big deal to be honored in that way. We take care of patients here, we take care of our community and we reach out in our commitment and mission work around the globe.” K-Cards In the Transitional Care Unit (TCU) where medically complex patients are working to transition out of the hospital, nurses piloted the use of a Kamishibai, or “K” card. Kamishibai, which means “storytelling” in Japanese, is a way for nurses and ancillary staff to conduct quality and safety checks. As a result of using K-cards, the TCU has logged zero CLABSIs for the past two years. The success of the K-cards, which were adopted through SSM Health Cardinal Glennon’s participation in the Children’s Hospitals’ Solutions for Patient Safety Network, was so profound that now all hospital units use the K-cards for ongoing quality enhancements. It is just one area that the Commission on Magnet® noted, stating that (the nurses) also have engaged parents in monitoring care by following the K-card elements to assure that


K-Cards are used throughout the hospital for ongoing quality monitoring

no steps in care are overlooked. A unique aspect is that the nurses have focused on care items rather than purely a quality check. “We’ve been on this journey really for so long, it’s amazing to finally be recognized for all of the great work we do,” said Rebecca Chambers, MSN, RN, NEA-BC, Manager of the Transitional Care Unit. “It takes a whole village to make this happen and it’s been so incredible to be a part of that.” Notes Donovan, “I’m so proud to watch our nurses drive care at the bedside, develop practices based on evidence, try it, document it, and then spread it hospitalwide and to other organizations through published articles, national conferences and presentations.” The SSM Health Cardinal Glennon Children’s Foundation supports that effort. Generous

“...it’s amazing to finally be recognized for all of the great work we do.” gifts from donors have funded continuing nursing education as well as conference attendance. “They are the engine that allows us to spread this good work,” said Alyse Albrecht, BSN, RN, a nurse in the Pediatric Intensive Care Unit, who was one of 20 Magnet® champions throughout the hospital. “I was able to present some of our evidence-based research at a conference, thanks to the Foundation.” What is gratifying for the more than 900 nurses at SSM Health Cardinal Glennon is external validation of the exceptional work and focus on quality care. Said Orton, “We laid this foundation years ago. Our outcomes are

exceptional as are all of the physicians, nurses and staff who provide such great care. We invited the Commission on Magnet® to come here and validate that.” “We do this every day,” emphasized Albrecht. “We really focus on providing excellent patient care to all of the children in our care as well as to their families.” Added Donovan, “Being named a Magnet® hospital was the best Christmas present ever and it’s just another step in our journey of continued excellence. To maintain Magnet® status going forward, the benchmarks get higher and higher. “We’re ready for that. That’s because we’ve been doing this for years.”

glennon.org Spring/Summer 2020 • 23


HEART & SOUL 2020

Watch the Video

Heart & Soul

Benefiting the Dorothy and Larry Dallas Heart Center

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he majesty of space was the theme for the fifth annual Heart and Soul event on Saturday, February 1 at the Chase Park Plaza Royal Sonesta St. Louis. Guests enjoyed a “Night Under the Stars” to benefit the programs, services, patients and staff of the Dallas Heart Center at SSM Health Cardinal Glennon. This year’s special feature was a video that documented the journey of Jimmy Williams, a heart center patient waiting to receive his heart transplant. This past fall, the video crew from SSM Health Cardinal Glennon Children’s Foundation started filming with Jimmy and his parents, Jim and Shana, as they shared their path from diagnosis to transplant. In August of 2019, P R E SE N TED BY:

Jimmy was diagnosed with pediatric cardiomyopathy, which meant he had an enlarged heart. Within four days, Jimmy had open heart surgery to place an LVAD (Left Ventricular Assistive Device) to help his heart beat normally until a donor heart could be found. After 101 days on the transplant list, the call for Jimmy to receive his new heart finally came, and on December 12 his parents, two sisters and his grandmother all filed into SSM Health Cardinal Glennon to support Jimmy and await the arrival of his new heart. In the early hours of December 13, as SLUCare physician Charles Huddleston, MD, was transporting the new heart to SSM Health Cardinal Glennon, SLUCare physician Andrew Fiore, MD, began to prepare Jimmy for the transplant. The heart arrived around 2:00 AM and together the two surgeons began removing Jimmy’s failing heart, and at 3:35 AM a new,

fully functioning heart was beating inside Jimmy’s chest. After the video depicting this journey was shown at the gala, Jimmy and his family came up to the stage. Shana Williams thanked the entire team from the Dallas Heart Center for saving her son. “In our darkest hours the staff here at Cardinal Glennon became small beacons of light. Aside from God, these were the people we clung to,” said Williams as she tearfully

Jimmy Williams

24 • SSM Health Cardinal Glennon Children’s Foundation


addressed the audience. “We are grateful to you, the Foundation and the hospital for all you have done for our son and our family.” For half a decade, the funds from Heart and Soul have helped make numerous improvements to the heart center, including an expansion of the outpatient clinic and the new Electrophysiology Suite. Funds have also provided new monitoring

equipment for the cardiac rehab program, tools for the 3D Printing Center of Excellence and educational opportunities for staff, including allowing members of the team to attend national cardiac conferences. With the advancements in the fields of cardiology and cardiothoracic surgery, in addition to the lifesaving work being done at SSM Health Cardinal Glennon, many

children born with heart defects are living well into adulthood. In fact, there are now more adults than children in the U.S. living with congenital heart disease. Special thanks to our presenting sponsor the Keeley Companies for making the evening another huge success for our patients and families.

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1 Jimmy Williams with caregivers 2 Dave and Kathey Taiclet; Bill and Ann Corrigan; Jim, Shana and Jimmy Williams; Dave and Shelley Dressel

glennon.org Spring/Summer 2020 • 25


Mighty Casey and the

GIRAF Team

Rare genetic disease confirmed at SSM Health Cardinal Glennon


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nna Breen hugs her child Casey close to her heart. At 20 months old, Casey has been in and out of the hospital almost since the day he was born. “He was born a healthy ninepound baby,” Anna said. “He started breastfeeding just fine and then the day we were supposed to be discharged, he started vomiting.”

A rapid evaluation found that Casey had a twisted bowel, which caused a problem with him absorbing food in the small intestine. “We were told that he had only half of his intestine and that the mal-rotation was caused by the shortened bowel,” explained Anna. Surgery was performed to straighten out the intestine and doctors said Casey would soon be fine. Instead, he was moved to the hospital’s Neonatal Intensive Care Unit for nine weeks, with feeding tubes and nutritional support 24/7. Even after he was able to go home, Casey was placed on total parenteral nutrition, or TPN therapy, which meant feeding him by infusing him with nutrients through a tube into his vein.

Certified pediatric nurse Melissa Neely, CPN, MSN, checks on Casey while he sleeps in his mother’s arms.

For Anna and her husband, Kevin, the diagnosis seemed like a horrible form of déjà vu. When they lived in Alabama, their first child, Connor, had started vomiting soon after birth. “I went to the emergency room there and they thought I was a nervous new mom,

“I was in disbelief,” Anna said with tears in her eyes. “I’m still in disbelief. I mean, how could this happen twice?” She thought there might be a hereditary component, but was told by other doctors that congenital short bowel syndrome was

The GIRAF program is the only multidisciplinary formal intestinal rehabilitation program for children in the St. Louis region with complex cases of intestinal failure. so I was sent home,” Anna recalled. “Two days later, Connor had to be airlifted to the hospital because he was vomiting so badly.” Also diagnosed with short bowel syndrome, Connor had to undergo a similar surgery five years earlier to untwist his small intestine. He was in the hospital’s intensive care unit for three months and discharged with a gastrointestinal tube so that he could eat.

incredibly rare. But when Casey started vomiting again, almost non-stop, the family — who had moved to Ballwin, MO. before he was born — rushed him to SSM Health Cardinal Glennon Children’s Hospital. “I thought he was going to die,” Anna said. “I told the doctors everything – how it was all happening again and I didn’t know why. Then the emergency room doctors introduced us to Dr. Mangalat.” glennon.org Spring/Summer 2020 • 27


MYSTERY SOLVED! Nutrition Problem Leads to Diagnosis of Rare Genetic Disease

Casey Breen (center) and his mom, Anna, are grateful for the GIRAF team, which includes several people (L to R): dietitian Karen Weaver, MS, RD; nurse Jennifer Kvale, RN; and SLUCare pediatric gastroenterologist Nisha Mangalat, MD, medical director of the GIRAF program.

SLUCare pediatric gastroenterologist Nisha Mangalat, MD, is the medical director of the Glennon Intestinal Rehabilitation and Feeding (GIRAF) program. The GIRAF program is the only multidisciplinary formal intestinal rehabilitation program for children in the St. Louis region with complex cases of intestinal failure. “It’s a unique program and includes gastroenterologists, surgeons, neonatologists and

Casey Breen

transplant specialists as well as nurses, a dietitian, social worker and pharmacist,” said Dr. Mangalat. “It really does take a team approach to think through the problems and come up with individualized care plans for each child because every one of them has unique anatomy, issues, infection concerns and other conditions that must be taken into account to both treat and then rehabilitate the intestinal tract.”

a genetic link. How rare is it for a child to be diagnosed with congenital short bowel syndrome? The numbers tell the story. Among more than a million children, only one will have the hereditary form of short bowel syndrome. “More commonly, children diagnosed with short bowel syndrome have a damaged small intestine or have underlying medical conditions such as inflammatory

“Thank God I found this team here. I don’t know what I would have done without them.” The GIRAF team stabilized Casey and put him on TPN therapy. Then, the detective work started says Dr. Mangalat, “I just couldn’t believe it happened twice in one family and thought there must be more to the story because the probability of a congenital (hereditary) connection was just so rare.” Dr. Mangalat decided to reach out to the team in SSM Health Cardinal Glennon’s Medical Genetics Program for testing. They confirmed

28 • SSM Health Cardinal Glennon Children’s Foundation

bowel disease, blood clots in the arteries leading to the intestines, or a birth defect in the intestines,” explained Dr. Mangalat. “For this family, the genetic mutation was found in two of their children. However, how you treat their short bowel syndrome is the same, no matter how rare. It takes a comprehensive approach and the family needed both support and education to help care for their children.”


“Who would have thought that I would have two children with a rare disease,” said Anna Breen. “Thank God I found this team here. I don’t know what I would have done without them.” After multiple consultations, the team revised Casey’s TPN therapy. Pediatric dietitian Karen Weaver, MS, RD, also worked intensively with the family on diet and nutrition recommendations while nurses helped to train the family on home care prior to discharge from the hospital. “The team treats me like I’m an expert with my children,” said Breen. “They respect me and listen to me and make me feel so much better about our children’s futures.” Casey has had to return to the hospital on and off over the past several months for ongoing care and to tweak his nutrition and medications. When one of his hospitalizations coincided with older brother Connor’s fifth birthday last April, Child Life Specialists at SSM Health Cardinal Glennon decorated Casey’s room and held a mini-party for Connor. “They sang ‘Happy Birthday’ and brought toys,” recalled Breen. “He was supposed to go to Legoland, but he loved his party here just as much because of all that everyone in the hospital did for him.” With Casey again back at home, the GIRAF team follows up weekly

The Breen family during a mini-party held by hospital staff for Casey’s older brother Connor on his fifth birthday.

with the family to ensure that Casey — and Connor — continue to thrive. Connor, now in preschool, was weaned off TPN therapy when he was three years old while the family lived in another state. He still receives outpatient physical therapy at the Ranken Jordan Pediatric Bridge Hospital. Casey, now approaching his second birthday on May 20, is still undergoing intestinal rehabilitation but is starting to thrive.

“He continues to get highly specialized care and we review his lab results every week to manipulate the formula he receives and to ensure he remains healthy,” said Dr. Mangalat. “Cardinal Glennon has been our home away from home while we’ve been here in Missouri,” said Breen. “It’s like a second family to me. I don’t know what I’d do without them and the entire GIRAF team.”

Reach for the GIRAF Experts! The Glennon Intestinal Rehabilitation and Feeding (GIRAF) program is the first and only formal intestinal rehabilitation program in the St. Louis region for children with complex cases of intestinal failure. The team, which includes neonatologists, surgeons, gastroenterologists, nurses, dietitians and transplant specialists, provides multidisciplinary care for children with a wide range of conditions that lead to intestinal failure, such as: • Short bowel syndrome (congenital and acquired) • Trauma • Dysmobilities (gastroparesis, intestinal pseudoobstruction)

• I ntestinal malrotation (twisted bowel) • I ntestinal atresia (duodenal atresia, jejunal atresia, ilea atresia)

• Gastroschisis • Hirschsprung’s disease • Inflammatory bowel disease • Omphalocele

Inpatient and outpatient care is offered and the team is experienced in long-term TPN therapy. For more information about the GIRAF program, call 314-577-5647. Chandler today glennon.org Spring/Summer 2020 • 29


HOMERS FOR HEALTH

Meet Kennedy 2020 Homers for Health Co-Chair “We were at Target trying on shoes.”

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hat’s what this year’s Homers for Health CoChair, 11-year-old Kennedy Burger, remembers about the day her SSM Health Cardinal Glennon Children’s Hospital journey began. Her ankles and feet were so swollen that her local doctor sent her to be evaluated at the Dan Dierdorf Emergency & Trauma Center at SSM Health Cardinal Glennon. There, SLUCare physician Craig Belsha, MD, diagnosed her with nephrotic syndrome, a disorder that causes the kidneys to excrete too much protein in the urine. “From that day on, we knew things were never going to be the

same,” says Kennedy’s mom, Jodi Gruenloh. “Most people think that this kind of thing happens to other people, not you,” says Jodi. “But it does,” Kennedy pipes in. After her diagnosis, Kennedy had to be extremely careful with her diet, limiting her sodium intake and surprisingly, limiting the amount of water she drank to reduce stress on her kidneys. “It was so hard. If I ate too much sodium, my eyes and legs would get all swollen,” she says. A biopsy revealed that the cause of Kennedy’s nephrotic syndrome was a condition called Minimal Change Disease, which can oftentimes be treated with medication. Unfortunately in Kennedy’s case, medication was not effective and she required frequent

30 • SSM Health Cardinal Glennon Children’s Foundation

hospitalizations where she received apheresis, a procedure to remove excess fluid from the body. “She was such a trooper. Nobody wants to see their kid suffer, but Kennedy has never acted like a victim. I think between the two of us, she’s the stronger one. She has helped me get through this!”


Kennedy

2020 Homers for Health Co-Chair

PLEDGE FOR PATIENTS glennon.org

PRESENTED BY:

glennon.org Spring/Summer 2020 • 31


HOMERS FOR HEALTH

Teacher Brenda Wilson (left) visits Kennedy with items from the hospital’s Shining Star School. Mom Jodi (right) and Kennedy

After about six months, a second biopsy revealed a further complication of Focal Sclerosis, which often leads to end-stage renal failure. “We were fortunate to be able to do peritoneal dialysis at home. I was nervous at first, but Kennedy did really well with it. She lived her most normal life by being able to do this type of dialysis,” says Jodi.

of our community and beyond by making updates to our Inpatient and Outpatient Cancer Services and Diagnostic Imaging Center, and to enhance our supportive programs like Child Life. Last July, Jodi and Kennedy were enjoying an afternoon at home when the phone rang. Seeing it was Erin, the transplant coordinator, “I kind of lost my air for just a second

“It was scary. This is a major surgery, but it was going to lead to a better life.” “And I just slept through it!” Kennedy says. Eventually, though, all signs pointed to a kidney transplant. “Dr. Belsha was so gentle about it. It was still a shock, but the news couldn’t have come in a better way,” Jodi remembers. “It was scary. This is a major surgery, but it was going to lead to a better life.” For thousands of kids like Kennedy, Homers for Health raises vital funds to support many of SSM Health Cardinal Glennon’s programs and services. Since 2012, this program has enabled the hospital to invest in the future of children’s health for the kids

before I answered,” Jodi says. “Today’s the day!” came the news from the other end of the phone. After frantically packing some essentials – and stopping at the library for some books – they made their way to SSM Health Cardinal Glennon for surgery. Today, more than ten months later, “Life is great!” Kennedy says. The hardest part about her recovery? She had to wait three months to rejoin her fifth grade classmates. “I wanted to go back school so bad. I was marking off the days!” Jodi adds, “For me, it’s knowing we are on to the next step. Her

32 • SSM Health Cardinal Glennon Children’s Foundation

quality of life is better, but there is still so much to keep up with. She takes a lot of medication on a strict schedule and there are lab and clinic appointments… It’s the awareness that after a transplant there are still things that never go away.” Above all, Jodi gives thanks every day for the staff at SSM Health Cardinal Glennon and to the family of the organ donor. “I am so thankful to the family who chose to give Kennedy the gift of life. My daughter is here because of them.” Thanks for supporting Homers for Health and making miracles happen every day.


THANK YOU TO OUR SPONSORS

PRESENTED BY:

glennon.org Spring/Summer 2020 • 33


Lily, Glennon Kid

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ou first met Lily LaMartina as our featured patient in the Fall/Winter 2018 issue of Glennon magazine. At five years old, little Lily had already undergone open heart surgery and a fight with acute lymphoblastic leukemia that resulted in multiple organ failures and an overwhelming infection. Now seven, she is doing really well! Lily’s family credits their faith in God with getting them through some of the darkest times of the last few years when they were unsure if Lily would survive. “God uses the staff at Cardinal Glennon every day to give Him glory and show His compassion when caring for sick kids. It’s a truly amazing place,” says Lily’s mother Anne. “This place is like family to us.”

Glennon Sunday 2020

Where Faith and Healing Unite

“ The miracles that happen every day at SSM Health Cardinal Glennon are made possible through the faithful support of our community and beyond.” - Archbishop Robert J. Carlson

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

glennon.org

You can be a part of making miracles possible.


Big recognition helps our smallest patients.

As a Level I Pediatric Trauma Center, our team at SSM Health Cardinal Glennon Children’s Hospital is always ready to deliver personalized and compassionate care to pediatric patients and their families; both in St. Louis and throughout the Midwest. With over 200 SLUCare pediatric expert physicians practicing across more than 60 specialties, we provide: >> Nationally ranked programs in cardiology and heart surgery >> Life-saving organ transplant surgeons for heart, kidney, liver and bone marrow >> Magnet® recognition, the highest national honor in nursing excellence

Where you need us. Access SSM Health Cardinal Glennon pediatric physicians at these ERs: >> SSM Health DePaul Hospital - St. Louis >> SSM Health St. Clare Hospital - Fenton >> SSM Health St. Joseph Hospital St. Charles >> SSM Health St. Joseph Hospital Lake Saint Louis >> Anderson Hospital - Maryville, IL >> HSHS St. Elizabeth’s Hospital O’Fallon, IL

Nationally ranked for our regional care.

cardinalglennon.com ©2020 SSM Health. All rights reserved. STL-STL-16-168874 4/20


Exceptional Health Care, CLOSER TO HOME

Patients celebrate with confetti to mark the opening of the North County facility

Exceptional health care,

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am just beyond grateful for everyone who has been a part of this today and the opportunity for parents, for families, to partner with all the providers who are here to work together to make sure children in the area have access to health care and are able to live happy and healthy lives,” State Rep. Cora Faith Walker of Ferguson, MO., told a reporter. Walker attended the opening ceremony for SSM Health Cardinal Glennon Pediatric Specialty Services in Ferguson to serve children and teens in North St. Louis County. “It’s clear how important investing in children really is,” she said. The North County facility became the Cora Faith Walker sixth pediatric specialty center operated by SSM Health Cardinal Glennon in the St. Louis area. Among them is another new center built in South St. Louis County. The South County center “

closer to home replaced an existing facility while the North County clinic filled a medical services gap. Both opened in 2019. North County was “identified as a critical need in the health care of this community and the surrounding communities,” said Steven Burghart, president of SSM Health Cardinal Glennon. “We’re blessed to be the

DNP, RN, APRN, NE-BC, Nurse Manager of Ambulatory Services and Advanced Practice. “Our goal is to make care more accessible and more convenient. Families will see the same exceptional providers without driving back and forth to the main hospital,” she said.

“We’re blessed to be the first and only pediatric specialty health care provider in the North County area.” first and only pediatric specialty health care provider in the North County area. This means that so many children in these surrounding communities will be able to get the exceptional health care they need, but get it closer to home.” “We hold clinics in North County for more than a dozen specialties that were not previously available in this community,” said Amy Shaw,

36 • SSM Health Cardinal Glennon Children’s Foundation

The hospital’s off-site locations also improve access to medical and surgical services by providing additional space so clinics may be scheduled more often. The services include endocrinology, otolaryngology (ENT or ear, nose and throat), gastroenterology, imaging, neurology, orthopedics, ophthalmology, pulmonology, renal/hypertension, sleep, sports medicine and urology.


“Prior to opening the new SSM Health Cardinal Glennon specialty clinic site in North County, there were several specialties teams within the ambulatory care clinics at the hospital with very high patient demands, resulting in a wait time for patients to be scheduled,” Shaw said. “The limiting factor was how many rooms we had available for our specialty clinics. Also, once a service is at maximum capacity at Cardinal Glennon, we look for other clinic locations to expand our health care services. To meet the needs of the community, we continually work to bring our care to off-site clinic locations.”

“Within the first two quarters... we exceeded the anticipated volume by four-fold.” Patient needs have surpassed projections, she said. “Within the first two quarters of the opening of the North County clinic we exceeded the anticipated volume by four-fold.” Additional services were introduced this spring — weekly visits from a mobile MRI (magnetic resonance imaging unit) at South County and urgent care services at North County. Both eventually will be added at the other facility.

North County The 15,000-square-foot offices are located at 3878 Pershall Road in Ferguson, adjacent to Interstate 270. They house clinics staffed by pediatricians from SSM Health Medical Group Pediatrics and sub-specialists from Saint Louis University School of Medicine. “Our urgent care services will be staffed by providers from the emergency department at Glennon and the x-ray service will be open,” Shaw said. “These services for kids are not available anywhere else in the area.” The Sansone Group built and owns the Ferguson clinic. South County The 15,000-square-foot building at 13000 Butler Crest Drive in South St. Louis County offers increased access to services closer to the communities of South County, Jefferson County and beyond. “Our services at South County are essentially the same as we have in North County and the building looks the same,” Shaw said. “When we moved into the bigger building we were able to expand our services and offer five or six new specialties that we previously hadn’t offered. That speaks to the needs in the community.” The building was designed and constructed by the Lawrence Group. Pediatric Specialty Services South County

SSM Health Pediatric Specialty Services SSM Health Cardinal Glennon Children’s Hospital 1465 S. Grand Blvd. St. Louis, Missouri North County 3878 Pershall Road Ferguson, Missouri South County 13000 Butler Crest Drive St. Louis, Missouri South Medical Building 224 S. Woods Mill Road Suite 640 Chesterfield, Missouri H.W. Koenig Building 400 Medical Plaza, Suite 220 Lake Saint Louis, Missouri Anderson Hospital 2133 Vadalabene Drive Maryville, Illinois

glennon.org Spring/Summer 2020 • 37 glennon.org


“THAT COULDN’T BE DONE BEFORE WE HAD 3D PRINTING” N E W T E C H N O L O G Y C R E AT E S M O D E L S T H A T G U I D E C O M P L E X P RO C E D U R E S “There is no other way to get that level of perfection,” said SLUCare cardiologist Dr. Wilson King, holding a precise model of an infant’s heart. The model was created in the 3D Printing Center of Excellence at SSM Health Cardinal Glennon Children’s Hospital. It was used

to plan a complex reconstructive surgery with more precision than possible following two-dimensional radiological images. Models of the heart, skull, brain and other organs have been utilized in pre-operative conceptualization by the hospital’s cardiologists and plastic, orthopedic, transplant

38 • SSM Health Cardinal Glennon Children’s Foundation

and neurological surgeons. The 3D Printing Center of Excellence is working on a more ambitious project — creating printed heart valves for patient implants. “We image the heart in two dimensions. Surgeons have to construct a three-dimensional image in their heads to formulate


Left and below: Models of a heart with transposition of the great arteries, ventricular septal defect and pulmonary atresia.

“We use the 3D model to determine if the operation we have planned is appropriate. Then we use it to plan how to reconstruct the heart,” said Charles Huddleston, MD, pediatric cardiothoracic surgeon and SLUCare physician at SSM Health Cardinal Glennon. “Anybody who is using these models to plan surgery will say, ‘I understood the anomaly much better and it was more clear to me how to fix it,’” he said. Models also have been used by transplant surgeons to determine when young patients have grown large enough for donated organs to fit in their bodies, King indicated. Neurosurgeons use them to plan delicate procedures within the brain. Center of Excellence The printing lab, opened in January 2017, was founded by King and Alexander Lin, MD, who is the

Alexander Lin, MD

Brian Albers, Technician

The center’s Stratasys J750 3D printer builds objects up to 19 by 15 by 8 inches. As an inkjet printer works by laying ink on paper, the 3D printer creates models by making repeated passes to lay down various materials in layers as thin as 0.00055 inch — one-seventh of a sheet of paper. “Relatively simple cases have taken six to eight hours to process. More complicated cases have taken upwards of 20 hours to build,” said Brian Albers, the lab’s technician. Albers states, the center cooperates with the hospital’s imaging team to plan CT (computed tomography) or MRI (magnetic resonance imaging) scans with more detail than usually needed for diagnostic readings. Software programs convert scans into a three-dimensional model and then a CAD (computeraided drawing) format that can be

‘...I understood the anomaly much better and it was more clear to me how to fix it...’ Wilson King, MD

Charles Huddleston, MD

a plan. When things are straightforward, their approach is pretty standard. When we have patients with very complex congenital heart disease, 3D printing comes in,” said King, a pediatric cardiologist, co-director of cardiac radiology and SLUCare physician at SSM Health Cardinal Glennon. He is co-founder and medical director of the 3D Printing Center of Excellence.

Alan A. & Edith L. Wolff Endowed Chair in Pediatric Plastic Surgery, surgical director of the 3D Printing Center of Excellence as well as director of the St. Louis Cleft-Craniofacial Center, chief of pediatric plastic surgery at SSM Health Cardinal Glennon and a SLUCare plastic surgeon. The lab was funded with a lead gift by William and Connie Kallaos to SSM Health Cardinal Glennon Children’s Foundation.

followed by the printer. The printer uses five basic colors that can be combined to create other colors, a firm base to simulate bone and a flexible base that feels like natural tissue. “The material is a photopolymer that is liquid until it is exposed to ultraviolet light. That causes it to harden,” Albers said. “We are producing three to four models a month and have produced more than 200 models.”

glennon.org Spring/Summer 2020 • 39


“That couldn’t be done before we had 3D PRINTING” Heart Modeling The hospital’s cardiologists and cardiothoracic surgeons use models at least once a week to plan procedures according to Huddleston. Models also educate students and illustrate heart malformations and treatments for parents. “The models give us a better understanding of the complex relationships within hearts with very complicated congenital problems,” he said. “That helps us determine how we will repair the heart or whether it is repairable without incurring a previously unforeseen complication.” The modeled hearts are also used by cardiologists to plan and practice catheterization procedures. These utilize instruments and devices that are guided into the heart using thin wires passed through blood vessels. “This technology produces hearts with similar physical properties and biomechanical characteristics as a human organ,” King said. “The ability to hold and manipulate the smallest structures of the heart is invaluable in helping to envision and plan complex repairs.”

Matthew Shores

Skull model displaying bone thickness for use in planning cranial surgery

Plastic Surgery Plastic surgery repairs human qualities such as the face, speech (palate) and hands. Plastic craniofacial surgeries restore a child’s face by reconstructing the bones and soft tissue, including cutting and moving the bones of the skull, orbits, cheeks and jaws, then keeping them in their new position with bone grafts and hardware. “Printing the patient’s own anatomy into life-sized models allows us to hold it in our hands, see it from every angle, and tactilely perform the surgery – even before we step into the operating room,” said Lin. “We can sterilize printed models and bring them into the operating room, which is like having x-ray vision during the surgery.” Matthew Matthew Shores was born in 2010 with craniosynostosis. “About 1 in 200 children are born with this condition in which the skull bones are fused, preventing normal brain growth and leading to increased brain pressure,” Lin said. “It requires plastic craniofacial surgery to reconstruct the bones so there is

40 • SSM Health Cardinal Glennon Children’s Foundation

space for the brain to develop and for the eyes to develop normally.” Matthew’s surgery in 2018 required bone grafts to fill bone gaps of his skull. “We 3D-printed the bone defect and sterilized it to use as a model during surgery. This model of the gap was a template matching the unique curved shape of his forehead,” Lin said. “We used it to find a part of the back of the skull that was curved the same way in order to obtain bone grafts that matched the natural curvature of the forehead. During surgery we used the sterilized printed pieces as guides.” Two sections of Matthew’s skull were removed in the shape needed then were sliced into layers. One layer was returned to its position in the skull and the other became a patch for his forehead. “Getting that three-dimensional curvature of bone is something that couldn’t be done before we had 3D printing,” Lin said. “His recovery was fast and he healed beautifully,” said Matthew’s mom, Candace. “He is wonderful and doing what he loves thanks to his surgery — he is playing on two select baseball teams.” Taylor Taylor Dexheimer, 21, was born with cleft lip, nose and palate. “That is the most common surgical birth defect in America, affecting 1 in 600 babies,” Lin said.

Taylor Dexheimer


Prototypes for printed heart valves to evaluate potential designs

Taylor needed surgeries throughout her life as her palate and jaws grew. Because of the cleft palate, the upper jaw could not grow as much as the lower jaw, resulting in a severe underbite. In 2016 Lin separated her upper jaw from her eye orbits and skull and moved it forward to a precise new position using personalized titanium plates shaped by 3D printing. That operation, Taylor said, “completely changed the way I talk, the way I look, the way I sleep and eat, everything about how I live my life. My friends tell me they don’t even remember what I looked like before I had that surgery. They see me now.” Printed Heart Valves and the Future “We want to take it one step further,” King said. That step would be printing implantable devices. The 3D Printing Center of Excellence staff has printed prototype heart valves developed in collaboration with members of three Saint Louis University divisions: the School of Medicine, Sridhar Condoor, PhD with Parks College of Engineering and Irma Kuljanishvili, PhD with the College of Arts and Sciences Department of Physics. The team, one of a handful known to be investigating this technology, has created valves that mimic the three leaflets that open and close with each beat of our own hearts. Another promising model consists of six triangular leaflets that could be more efficient.

Various designs have undergone flow testing by the cardiologists, engineers and physicists. “The natural heart valve is impressive because it is so thin and light,” King said. Identifying a suitable material for printed valves is one challenge facing valve designers, King added. “How do we develop something that is going to remain pliable and strong for a lifetime? In a kid that would be three to four billion cycles.” According to King, Implantable heart valves, routinely placed since

don’t have to go through so many valve replacements and don’t need anti-coagulation medication.” King also added that very young patients would still require additional valve replacements as their heart grows. While a newborn infant’s aortic valve is 10 millimeters in diameter, an adult valve may grow to 27 millimeters. Huddleston envisions the possibility of printing valves with living tissue.

“ Our motivation is coming up with something that will work so they don’t have to go through so many valve replacements...” the 1970s, now are made of metal or modified animal tissue. Tissue valves implanted in children wear out and must be replaced after 10 years or so. “Mechanical valves last a long time but require patients to take anti-coagulation medication, which has a pretty thin therapeutic window. If you take too little you are not protected from blood coagulation. If you take too much, you are at risk for serious bleeding,” he said. “Our pediatric patients have years ahead of them. Our motivation is coming up with something that will work so they

“Way off in the future, will it be possible to 3D-print a scaffold made of material that dissolves and populate it with the patient’s own cells, then implant it so it would be a living valve that grows with the child?” he asked. “People have been working on that for 25 years in basic science labs.” “Someday it may be possible to print complete organs,” King said. “It might be 20 years. The 3D printing program has already been tremendously helpful for a lot of children. We hope to get other people excited and further leverage the expertise and resources of the community.” glennon.org Spring/Summer 2020 • 41


Basic Car Seat Safety

Don’t put your child at risk – buckle up the right way on every ride!

Infants and toddlers must ride in a rear-facing car seat. After your child outgrows his rear-facing only (infant car seat), a convertible or all-in-one car seat should be used until he exceeds the weight or height limit. Keeping your child rear-facing as long as possible is the best way to protect his head, neck and spine.

After your child reaches the weight or height limit on his rearfacing car seat, he is ready to ride in a forward-facing car seat. Forward-facing car seats have a harness to keep your child restrained, and a tether that will limit his forward movement during a crash. Always use the tether with a forward-facing seat!

A belt-positioning booster seat should be used after your child reaches the maximum weight or height limit on his forwardfacing seat. Booster seats lift your child up so that the seat belt fits properly over his hips and shoulder. Without a booster seat, the seat belt falls on your child’s soft belly and neck instead of his strong bones.

Your child is ready to ride with only a seat belt when he is 4’9” and: 1. He can sit all the way back on the vehicle seat 2. His knees are bent at the edge of the vehicle seat with his feet planted firmly on floor 3. His seatbelt crosses the shoulder, centered over his collar bone 4. The lap portion of the seat belt lies low on his hips, across his lap 5. He can stay seated this way for the entire ride, even if he is asleep

SUPPORT PROVIDED BY:

56 • SSM Health Cardinal Glennon Children’s Foundation


THANK YOU TO OUR 2020 SPONSORS PRESENTED BY:

COUTURE SPONSORS:

DESIGNER SPONSORS:

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FORMAL WEAR SPONSORS:

SPORTSWEAR SPONSORS:

Jane & Andrew Abele

Holtz Schenk Foundation

Peggy & Kevin Lorenz Thor, Facility Dog

Joan & Joe Walsh

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170

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EXPANDING OUR MISSION ACROSS THE REGION

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PROCEEDS BENEFIT THE CRITICAL CARE TRANSPORT PROGRAM

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AT SSM HEALTH CARDINAL GLENNON CHILDREN’S HOSPITAL

glennon.org Fall/Winter 2019 • 57


Bone marrow transplant patient Troy (center) and dad T.J. (right) with SSM Health Cardinal Glennon staff

“A considerable amount of attention to all the details”

Nationally-recognized Bone Marrow Transplant Program achieves exceptional outcomes


S

urvival rates for childhood and adolescent cancers have more than doubled since 1975. For acute lymphocytic leukemia, the most common pediatric cancer, five-year survival rates have risen from 36 percent to 90 percent. For cancers treated with bone marrow transplants, the national average for one-year survival is about 70 percent. At the Bone Marrow/Stem Cell Transplant Center at SSM Health Cardinal Glennon Children’s Hospital, the one-year rate has hovered around 90 percent for nearly a decade, placing it in the top 10 percent of U.S. medical centers.

“We focus very tightly on the care these patients receive — donor selection, supportive care, close monitoring after transplant and, particularly, dealing with the complications that occur,” he said. Transplant patients typically are established patients at the hospital. By the time they undergo their transplants, they have become well-acquainted with their doctors and nurses on 4 North, the inpatient hematology-oncology unit. They make outpatient visits to The Costas Center. Their relationships may extend from childhood into young adulthood.

Transplantation Marrow is a tissue within bones that — when healthy — every day produces billions of red blood cells that carry oxygen, white blood cells that fight infection, platelets that help stop bleeding and the stem cells that in turn produce new blood cells. Patients who undergo chemotherapy, radiation or both to kill diseased cells will then need an infusion of healthy cells. The procedure is sometimes referred to as a stem cell transplant because these blood-making cells can be derived from the patient’s own bone marrow, a donor’s bone

About 10,000 Americans receive bone marrow transplants each year. For the actual transplant they are admitted to the Bone Marrow/ Stem Cell Transplant Unit adjacent to 4 North, where they remain in protective isolation until their immune system has recovered. That four-bed unit and 4 North were renovated in 2019 and equipped with the latest technology at a cost of $7 million.

marrow or from donated umbilical cord blood. About 10,000 Americans receive bone marrow transplants each year. In children and teens, transplants are prescribed to treat leukemia, aplastic anemia, immune deficiencies, bone marrow failure syndrome, sickle cell disease, inherited defects in metabolism and other diseases.

One-Year Post-Transplant Survival by Year

Although it is a relatively small transplant center, “We have three physicians who do bone marrow transplants and we’re able to devote a considerable amount of attention to all the details,” said William Ferguson, MD, director of pediatric hematology and oncology at SSM Health Cardinal Glennon, professor of pediatrics at Saint Louis University School of Medicine and a SLUCare physician.

glennon.org Spring/Summer 2020 • 45


Nationally-recognized Bone Marrow Transplant Program achieves exceptional outcomes Transplant outcomes have improved with advancements in donor cell collection, preparing patients for transplant and caring for them while the new cells begin to function, Ferguson said. “We have more donors, better ability to get sicker patients to transplant, better supportive care and better ways to control the immune reactions that can occur after transplant.” History Some diseases may be treated through an autologous transplant — withdrawing and freezing the patient’s own bone marrow or stem cells then reinfusing it after chemotherapy. Most patients require an allogenic transplant — one using cells or tissues from another person. The first successful bone marrow transplant was performed in 1956 between identical twins who had identical immune systems. Transplants between non-related patients, even most siblings, were rejected by the body in those days due to graftversus-host disease (GvHD). “The body’s immune system has a sophisticated way of getting rid of things it doesn’t think should be in it,” Ferguson said. “There was a fairly long period of basic research. Bone marrow transplant started to become a feasible technology in the 1970s.” Doctors were able to identify the histocompatibility factors that determine whether a patient will accept a transplant. “In two siblings there is a one-in-four chance of being a match,” Ferguson said. “The chance of any two non-related individuals being a semi-close match is about 1 in 10,000. The expansion of transplants required the ability to do this testing at a fairly sophisticated level and have large databases of individuals who are willing to be a donor. That was the

National Marrow Donor Program (NMDP) that was established in the 1980s.” NMDP lists the histocompatibility types of 22 million people who have volunteered to be donors. Todd In 2018, Todd Schultz received a bone marrow transplant identified through NMDP after a relapse of leukemia that was first treated in 2013. “Todd just turned 21. He has a high-risk form of acute lymphoblastic leukemia called Philadelphia Chromosome ALL,” said his mother Vickie. “We knew he had a 97-percent chance of relapse.” Deepika Bhatla, MD, a pediatric hematologist/oncologist at SSM Health Cardinal Glennon and SLUCare physician, is Todd’s physician.

Todd Schultz

“She often came in and sat with him. It was her calmness and patience that got him through.” “Dr. Bhatla conferred with experts everywhere to figure out the best course of treatment,” Vicki said. “She often came in and sat with him. It was her calmness and patience that got him through.” Todd spent 43 days in the isolation unit following his transplant in October 2018. His immune system was still rebuilding this spring but, he said, “I can pretty much do anything.”

Troy Troy Mercer, 18, received a cord transplant last fall. “He was diagnosed with myelodysplastic syndrome. His bone marrow didn’t produce enough mature blood cells,” said his father, T.J. Isabel. Troy spent 58 days in the transplant unit.

Cord Blood Another expansion of the donor pool came with the development of transplants using umbilical cord blood. The NMDP lists more than 300,000 stem cell units derived from umbilical cords donated by mothers after giving birth. Since 1996 the St. Louis Cord Blood Bank at SSM Health Cardinal Glennon has banked 28,000 of those units, which are available to patients anywhere in the world. Troy Mercer with William Ferguson, MD

46 • SSM Health Cardinal Glennon Children’s Foundation


“It was like a little family up there,” his father said. “You are away from home for nearly two months and isolated from everybody. The care was exceptional. The nursing staff tried to make things pleasant.” “Of course,” Troy said, “I was looking forward to going home. I’m feeling good now — still a little weak but pretty much back to normal.” 4 North The 32 nurses on the fourth floor are a main ingredient in the recipe for successful transplants. “Most transplant patients start as oncology patients here and we have seen them for an extended period of time,” said Anne Bisch, MSN, CPNP-AC, director of oncology and bone marrow transplantation. “We get to know our kids and their families. There is a bond that draws people to this type of nursing.” “It is comforting for the kids to know that the same nurses who cared for them on the floor are there for them on the other side of the transplant unit door,” said Mary Miller, BSN, RN, manager of 4 North and the bone marrow unit. “It is hard to describe all the preparation that goes into a transplant,” Bisch said. “It starts with parent education and a multidisciplinary team that includes front line nurses, pharmacy, child life, dietary services, environmental services and many more. It is truly a team effort. The transplant coordinator manages a complex network of paperwork and emails and repetition to make sure everything is perfect.” Brianne “The last thing you want to hear is that your kid has cancer. It was a whirlwind. It was like we were in a nightmare,” said Abby Bagwill, mother of 12-year-old Brianne. She was diagnosed in August 2019 with acute myeloid leukemia then in September with hemophagocytic lymphohistiocytosis (HLH), a

Brianne Bagwill with Jess Mauk, BSN, RN, BMTCN and Tina Re, BSN, RN

genetic disorder which overstimulates the immune system, causing it to damage the patient’s own tissues, including the bone marrow. After chemotherapy, Brianne received an infusion of cord cells in December and stayed nearly five weeks in the Bone Marrow Transplant Unit. For a time after going home, Brianne returned to the hospital weekly for infusions. “She recovered very fast,” Abby said. “I’m feeling good, but I have low energy,” Brianne said during a clinic visit. She was looking forward to returning to school, tennis and volleyball this fall. Isolation The stringent isolation standards imposed on the unit begin with family education. “We tell them to prepare to be here for six to eight weeks,” said

siblings and miss them. They have anxiety about not knowing how things are going to be, and they feel crummy until their immune system starts working properly,” McKinney said. “We try to involve the Child Life people and music therapy and art therapy.” Another round of education begins before the patient is discharged. “We go over hand-washing and infection control, the everyday things that are important while immunity recovers,” McKinney said. After discharge, patients will return to visit SSM Health Cardinal Glennon for follow-up care, sometimes for years. “We will follow them until they stop wanting to see us,” Ferguson said. “We are seeing some patients who are in their 30s.” Brianne had spent 140 days in the hospital when she was discharged in January.

“We tell them to prepare to be here for six to eight weeks....” Cortney McKinney, RN, blood and marrow transplant coordinator. “During the time it takes for their cells to build a new immune system, their protection is crucial.” Emotional support during isolation is important, too. “Lots of kids are close to

“I don’t have enough good words to say about the staff here,” her mother said. “The oncologists are amazing. The nurses on the fourth floor became part of our family. That was the one bad thing about leaving — we realized we are not going to see them every day.”

glennon.org Spring/Summer 2020 • 47


CHILDREN’S MIRACLE NETWORK UPDATE

Faith, Willa & Kevin 2020 CMN Ambassadors

F

aith Jethro, 8, Willa Woodring, 2, and Kevin Lowery, 5, have been chosen as 2020 Miracle Ambassadors to the Children’s Miracle Network (CMN). The Miracle kids and their families represent their hospital at CMN events to raise awareness and funding for the community’s pediatric hospitals. “Sign us up for anything we can do to yell the praises of Cardinal Glennon,” said Willa’s mom Whitney. “It is a wonderful experience to meet the other parents. I am learning a lot about people and strength,” said Ebony Jethro, Faith’s mother. “She has made a lot of new friends.” Kevin’s first CMN events have helped him acclimate to other children after spending much of his childhood in a hospital bed, said his mother Jennifer. “The hospital saved Kevin’s life. We love sharing his story and giving back to the hospitals that have done so much for us.”

Faith

Watch Faith’s Video

Faith was born in 2012 with a chromosomal abnormality. “She had a deletion on her 13th chromosome,” her mother said. “They only know of about 20 cases with that same deletion on that chromosome. She has multiple disabilities. She has low muscle tone. Her fine motor skills and cognitive reasoning are low. But her vocabulary is great. “When she was very little I was told I might have to be okay knowing she might not walk and talk. Well, she can walk and she can talk. And she talks a lot!” Ebony said. “She is always a happy kid and is easy-going.” Faith is followed by many specialists at SSM Health Cardinal Glennon, including those at the

48 • SSM Health Cardinal Glennon Children’s Foundation

Knights of Columbus Developmental Center. “She’s had extensive testing for her intellectual ability,” Ebony said. “Because her condition is so rare, they aren’t able to tell me what her future might hold. They did tell me she will always need some sort of care with her life skills.” Faith has made many friends at SSM Health Cardinal Glennon. “She recognizes all the people here and they know her. I couldn’t imagine going anywhere else.”

Willa “Willa was born six Watch Willa’s Video weeks prematurely in 2017. By day three her body was not adequately exchanging carbon dioxide for oxygen,” said her mother Whitney. “Her organs were shutting down and that’s when they transferred us to Cardinal Glennon. On our second day in


The Woodring Family

The Jethro Family

the Neonatal Intensive Care Unit, they told us they thought she had congenital central hypoventilation syndrome, or CCHS.” The random genetic mutation causing CCHS has been identified in 1,400 people worldwide. “It affects your autonomic nervous system,” Whitney said. “For Willa, it means she does not breathe when she sleeps and it’s a lifelong condition.” Until recent advances in genetic testing, CCHS was not readily diagnosed and could potentially be a cause of sudden infant death syndrome (SIDS). “If she hadn’t been transferred to Cardinal Glennon, where doctors were familiar with the signs of CCHS, she could have been a SIDS baby,” her mother said. Before Willa was two months old she underwent surgery to have a tracheostomy placed to allow better oxygenation from the mechanical ventilator she must use when she sleeps. “She hasn’t looked back,” Whitney said as Willa hopped and bounced around her living room. “She does that from 5:30 in the morning until 8:00 at night when we put her to bed,” said father Jeremy. Willa’s tracheostomy tube doesn’t bother her, Whitney said.

“It is all she has ever known. Hopefully we will get rid of it as she gets older and she can just use a mask.” Willa sees many specialists The Lowery Family at her hospital, where her visits and needs are coordinated by the Complex Medical Care Program. “We are not native to the St. Louis area. My family is in Virginia and his family is in Ohio,” Whitney said. “Cardinal Glennon’s doctors, nurses and staff have become a huge support system for us.”

Kevin

Watch Kevin’s Video

Kevin was born with Tetralogy of Fallot, a combination of four heart and blood vessel defects that affects 1,660 babies born in the U.S. each year, according to the U.S. Centers for Disease Control. Kevin was also born four months prematurely with underdeveloped lungs and only one functioning kidney. He was hospitalized for the first

two and a half years of his life and often required resuscitation. Kevin needed heart surgery early in his life and breathed with ventilator assistance until recently. “Things could have gone the other way lots of times,” said his father, Dave. “We were lucky the right decision was made every time a decision had to be made.” “He is a very happy kid who is adventurous and a little bit of a daredevil,” his mother said. “He is a bright little boy who wants to learn but he is not verbal yet. He is legally blind without glasses so communication is difficult for him. He has not been around other children a lot so social situations are difficult for him.” The family’s first CMN events were opportunities for Kevin to become accustomed to other children, especially the noisy ones, Jennifer said. “This will be a growing experience for him.”

glennon.org Spring/Summer 2020 • 49


GLENNON AMBASSADORS

Kristyn

Claudia

Glennon Ambassadors:

Giving back with grateful hearts

G

lennon Ambassadors are parents or long-term patients who choose to connect with the hospital beyond their clinical relationship. They say ‘yes’ to opportunities that can support the hospital, our staff or our patient families. Through their gratitude and involvement, these families are truly ‘ambassadors’ for our hospital; hence, the name for the program. Grateful Patient Coordinator Laura Wulf says, “I LOVE meeting our families and harnessing their energy and their experiences! It’s my role to give their journeys an added purpose; molding their stories, feedback or experience into something the hospital and the community can use, see, feel, hear or learn from. Our parents are all so unique with regards to their time, the degree of involvement they can offer or want and their motivation for staying connected. It’s great to be able to offer parents anything from writing thank you notes to speaking opportunities, hospital committee involvement and so much more!” Wulf, a former SSM Health Cardinal Glennon oncology nurse and nurse educator, is a Cardinal

Glennon mom, herself. Her own journey, especially with her son Jude (diagnosed with lymphoma in 2009,) has fueled her passion and empathy for the parents and families she has the privilege to meet. “Our parents are a golden resource. Their children and their stories are our ‘why’ and our ‘how’...the inspiration behind our mission and fundraising efforts... and the impact to share with others why their support of our mission matters,” says Wulf. Meet some Glennon Ambassadors who are making a difference: Kristyn Newbern In January 2017, Kristyn’s son, Luke, was born with congenital heart disease. He underwent his first corrective surgery when he was just nine days old. For the month that followed, SSM Health Cardinal Glennon became a second family. Kristyn remembers Luke’s surgeon, Dr. Andrew Fiore, staying up late with them in the NICU to draw diagrams explaining the surgery. She remembers one of Luke’s nurses, Lauren, arranging his many IVs and monitors so that she could hold

him. These are just two of countless memories she recalls. Luke has had three more open heart surgeries since then. In-Between surgeries, he is a thriving three year old. To express gratitude and to celebrate the exceptional care that Luke receives, Kristyn and her husband Kevin formed a fundraising team (Luke’s Skywalkers) for the inaugural Sun Run in 2017. Kristyn subsequently joined the Sun Run planning committee in 2018. She has served in that role for the last two years, while continuing to fundraise thousands of dollars with her team. “The experience of having your child in the hospital is overwhelming for parents and families,” Kristyn says. The ability to pay for these expensive, lifesaving procedures, should not be a factor in a parent’s already unimaginable level of stress. I’m happy to share our story and help out how I can if it will bring support to other families and raise awareness of what Cardinal Glennon has to offer.” Claudia Hall In 2012, Claudia gave birth to her son, Nicodemus (Nic). Within a few weeks after birth, Nic experienced

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 314-678-6635 or laura.wulf@ssmhealth.com 50 or • visit SSM Health Cardinal Glennon Children’s Foundation GlennonAmbassadors.org.


Shana some issues. He had spastic movements of his arms and legs, feeding problems and failure to thrive among other things. When the spastic movements worsened over the next several weeks, he was admitted to a nearby hospital and placed on baclofen - a muscle relaxer and an antispastic agent. His windpipe collapsed, and he was emergently transferred to SSM Health Cardinal Glennon’s PICU. Claudia stated, “They saved his life in the PICU, but then we had to get to the bottom of where all this was coming from.” Nic was eventually discharged home, but was readmitted frequently for seizures, respiratory issues and trouble eating. “There were something like 42 departments who consulted over his life,” Claudia said. By the time he turned 2, Nic was at SSM Health Cardinal Glennon more than home. He spent close to 6 months in the PICU. All of his organ systems were in a downward spiral, and his doctors continued to treat symptoms while still pursuing a diagnosis. The PICU Intensivist and Geneticist advocated for Nic to have a genome test. Genomic testing looks broadly for gene alterations or harmful changes anywhere in the genetic code. Nic turned 3 just before he died in the PICU. Results of his genome test came back several months later, which revealed that Nic had a novel mutation on the CASK gene – one of the genes that controls development of cells in

the brain. Because of this mutation, the more his brain grew, the more he deteriorated. “I was told Nic was the first child diagnosed with this particular mutation to have actually lived years of life. Boys who have the mutation, are usually stillborn,” Claudia says. Claudia and her husband Michael elected to donate Nic’s organs and tissue through MidAmerica Transplant. That was just the beginning of their giving back. “Cardinal Glennon felt like my home. I wanted to help other parents, because I know how overwhelming it can be while you’re there,” Claudia says. “During my long stays in the PICU, one of my lifelines was the parent snack cart – and the happy face that pushed it. Sometimes all you need is a brownie! Sometimes you need an ear and need somewhere to vent. That person and that cart did that for me, and I will never forget her,” emphasized Claudia. “Now I volunteer two days per week pushing the snack cart! My job is to help people have a better day - through smiles, snacks, listening and compassion. I know I can’t fix what they’re going through, but I am one more person that can help them through a tough moment and to bridge between that moment and the next.” Claudia is now a proud mother of her second baby boy, Mattias, born June 25, 2019.

Shana Williams Shana Williams was first introduced to SSM Health Cardinal Glennon in the fall of 2019. Her son, Jimmy, an 11-year-old avid athlete and well-decorated golfer, was diagnosed and admitted to the hospital with pediatric cardiomyopathy. Less than one week after, he was placed on the heart transplant list. On August 29, Jimmy had open heart surgery to place an LVAD (Left Ventricular Assistive Device) to get his left ventricle pumping correctly. Jimmy then carried a backpack with him at all times that held the battery for his LVAD. This was just one phase of treatment for Jimmy’s heart until he could receive a transplant. The plan was to get his body stronger and ready for a new heart while allowing him to leave the hospital during the waiting period. Shana and her husband James signed a lease on an apartment close to SSM Health Cardinal Glennon. The staff worked extensively to train Shana and James on the LVAD – the equipment, the monitoring, the dressing changes – everything associated with it. On December 11, after being on the transplant list for 101 days, the Williams family received the news that a heart was available. On December 27, just 16 days after transplant, Jimmy was discharged. Post-transplant heart biopsies and follow up tests have been positive, and Jimmy currently shows no signs of rejection. James and Shana are passionate about sharing Jimmy’s story. “We want to bring hope and inspiration to people, share about organ donation and raise awareness about cardiomyopathy,” Shana says. On February 1, the very first day of American Heart Month, Jimmy’s story was shared at SSM Health Cardinal Glennon’s Heart & Soul event, which benefits the Dorothy and Larry Dallas Heart Center. After an emotionpacked video capturing Jimmy’s journey and a beautiful speech the family presented a $4,500 check to SSM Health Cardinal Glennon Children’s Foundation, representing funds raised by Jimmy’s family and friends. glennon.org Spring/Summer 2020 • 51


ASK THE EXPERTS

Ask the Experts: Summer Safety

T

he magical months of summer are nearly upon us. Children put away their school books to enjoy longer days full of swimming, enjoying the great outdoors, family vacations and sports. What you may not know, however, is that summer is the busiest time of the year for a pediatric Emergency Department. We checked in with Steven Laffey, MD, SLUCare physician and Erin Bening, MSN, RN, NEA-BC, director of emergency services for the Dan Dierdorf Emergency and Trauma Center at SSM Health Cardinal Glennon, as well as Katie Smith, MEd, ATC, LAT, outreach manager for SSM Health Cardinal Glennon SportsCare to learn more.

What are some of the most common reasons parents bring their children to the Emergency Department in the summer? Laffey: In 2019, falls were the most common cause of injury for trauma visits to our ED. Falls can occur just about anywhere: while playing sports, on playgrounds and at home. We see kids that have fallen down the stairs or off of bunk beds or decks. With warmer weather comes swimming, so we may see a lot of drownings. Among very young children, drowning is the leading cause of death nationwide. In addition, we see a lot of spider and snake bites in the summer months, as families spend more time outdoors. What can parents do to keep their kids safe while swimming?

Steven Laffey, MD

Erin Bening, MSN, RN, NEA-BC

Bening: The best thing parents can do is to be vigilant. With young

52 • SSM Health Cardinal Glennon Children’s Foundation

Julie A. Weber, BS Pharm, CSPI Director, Missouri Poison Center

Katie Smith, MEd, ATC, LAT Outreach Manager, SSM Health Cardinal Glennon SportsCare

children, it is recommended that parents should always be within arm’s reach, even if their child is wearing a life jacket. This is especially important in open bodies of water, like lakes. For pool parties involving older children who know how to swim, a popular thing to do is for all the parents to take turns watching the pool. You can make a game out of it, where you choose an object and whomever is holding that object – say it’s a yellow cup – is the “lifeguard on duty.”


What should parents do if their child experiences a fall?

How concerned should parents be about snake bites?

Smith: Many falls are just part of being a kid. We encourage our children to lead active, healthy lives and sometimes accidents just happen. Anytime a child has a significant fall, either from a far distance or when his or her head comes into contact with something at a fast pace, parents should be on the lookout for signs of a head injury. While most kids who experience falls suffer only minor bumps and bruises that go away quickly, it is important to monitor your child for any changes in their behavior after a fall.

Weber: Missouri has 47 native species of snakes and most of them are harmless. Of the five venomous species, copperheads and cottonmouths are the most common. While about a quarter of snake bites are considered “dry bites,” meaning no poison has been injected, it’s still a good idea to exercise caution in wooded areas, hiking trails and while camping. Best advice – if you see a snake, leave it alone!

What are the signs of a concussion, and when should parents be concerned? Smith: If you suspect your child has sustained a concussion, the primary things to look for are headache, dizziness, nausea, balance problems, lethargy and memory issues. If your child exhibits these signs, you should call their pediatrician right away. If he or she experiences vomiting, worsening headache or if you notice behavioral changes, the best thing to do is to take your child to the Emergency Department to rule out more serious conditions. If you are concerned that your child may have a concussion or needs to be evaluated by a concussion specialist, call the Cardinal Glennon SportsCare access line at 314-577-5640. Did You Know? For expert advice on snake and spider bites, we turned to Julie Weber, Director of the Missouri Poison Center. Did you know that poison center help is free and confidential? The Missouri Poison Center is open 24/7 to answer questions and help people of all ages in all types of poisoning emergencies.

What should parents do if a snake bite occurs? How dangerous are spiders? Weber: Spiders are very misunderstood creatures. They consume tons of insects every year – including mosquitoes! There are over 300 types of spiders in Missouri and only two species are poisonous: the black widow and brown recluse. The good thing about spiders is that they don’t seek us out. They prefer to run and hide in dark places like wood piles, garages, closets and under sinks. Most bites occur when spiders in clothing are disturbed or squashed when you are dressing. Despite the common belief that bites from poisonous spiders are fatal, those cases are extremely rare.

Weber: The first thing parents should do is call the Poison Center at 1-800-222-1222. (It’s always a good idea to have the Poison Center’s number programmed into your phone.) Our trained nurses and pharmacists will provide first aid instructions and can even point you in the direction of the closest hospital if you are away from home. Do not use ice or apply a tourniquet, as this may cause more damage. Take a picture of the snake if you can, but don’t go chasing it if it gets away. Never try to pick up a snake.

If a bite occurs, wash with soap and water and apply a topical antibiotic to avoid the risk of infection. Check with your child’s pediatrician or call the Missouri Poison Center if the area becomes red, swollen or warm to the touch. Cleaning is the first step in spider control. Regular vacuuming, cleaning closets and storage spaces, reducing clutter and shaking out shoes and clothing before wearing all help reduce the chances of a bite.

For more tips on child safety, visit the Safe Kids Worldwide website at safekids.org

glennon.org Spring/Summer 2020 • 53


GLENNON FRIENDS / TRIBUTE

GLENNON FRIENDS celebrates the faith, commitments and generosity of our supporters. To view the full listing of gifts received from our Glennon Friends visit glennon.org/friends.

TRIBUTE

Mary McDermott Basketball Tournament scores the game-winner

Hybrid cardiac catheterization lab will be named in her memory

S

warms of third-grade boys and girls careen around the Immacolata School gym while experiencing their first organized basketball games. Baskets are scored rarely — some games end with scores around 10-8. Many people spending the weekend in the gym remember when Mary McDermott was a kid like that. “We were fortunate to have Mary with us for 24 years because of the doctors and nurses at Cardinal Glennon, pure and simple,” said Bill McDermott. “Her cardiologist didn't want her to play soccer but she loved basketball,” Connie McDermott said. Mary McDermott, their daughter, passed away in 2008, after a lifelong battle against congenital heart and liver defects. She and twin sister Colleen were born two months prematurely and spent their first months of life at SSM Health Cardinal Glennon Children's Hospital. Colleen went home first and enjoyed an active, athletic youth while Mary's activities were limited.

neonatologist at SSM Health Cardinal Glennon, counseled them on what to expect after their birth. “I had a connection to Cardinal Glennon but I hadn't been back there in years. When we found ourselves in that situation, Cardinal Glennon seemed like the best place for us to be,” she said. “They took such good care of us. Every time Mary went back to the clinic, everybody was so excited to see her. “Mary felt right at home at Cardinal Glennon. The doctors were always there for us and we had the most incredible nurses. They always put us at ease and we had every confidence in their ability.” Mary, then a young adult, was still visiting her doctors at SSM Health Cardinal Glennon in 2008

“Right at Home” Connie had volunteered at the hospital as a candy striper when she was in high school. Before the twins were born Bill Keenan, MD,

54 • SSM Health Cardinal Glennon Children’s Foundation

when liver disease resurfaced and she was placed on the transplant list. Before a donor arrived, on the morning of December 21, she did not wake up.

The Memory “A friend and I were talking about how we could keep that young lady's memory going,” said Steve Mattingly, a member of the Immacolata Catholic parish in Richmond Heights, MO. His children had grown up playing sports with Mary, Colleen and their older sister Elizabeth in the parish elementary school. “There was no third-grade basketball tournament in the Catholic Youth Council of St. Louis. I brought the idea to Bill and Connie,” he said. That was the start of the Mary McDermott 3rd Grade Basketball Tournament, held around Christmas each year to raise funds for SSM Health Cardinal Glennon. “We set out to honor Mary's memory and raise funds to help Cardinal Glennon provide care for other children,” Bill said. “We wanted to put Mary's name on the hybrid cardiac catheterization suite.” (L to R) The McDermott sisters — Colleen, Elizabeth and Mary


TRIBUTE

How was a weekend basketball tournament for little kids able to attract so many donations? “This guy!” Connie said, pointing to Bill. “I know a lot of people,” he said with a smile. “And I am not hesitant to ask for their support for the hospital. Bill played on Saint Louis University soccer teams that won national championships in 1967 and 1969. After college he became a soccer commentator on local and national broadcasts, and has covered 11 World Cup soccer tournaments.

11th Annual The 11th Annual Mary McDermott tournament was held in the Immacolata gym in December for eight boy and eight girl teams. “Eleven years ago it was the first time many kids had touched a basketball,” Steve said. “As the years went by, you could tell the kids were starting to play when they were younger and the play got better. We had a score this year of 29-26. The games were a lot of fun to watch.” As each team gathered for its final game, international sportscaster Bill McDermott stood at center court with a microphone and introduced each eight and nine-year-old player.

“He would explain that there are kids less fortunate than you who are in the hospital over the holidays,” Steve said. “Through the gift of your health, you are helping others who are not so fortunate. I think they understood that.”

The Final Score The event boosted the tournament's fund-raising total to $512,258.02, beyond its goal for placing Mary's name on the cath lab. “This means we will perpetually honor Mary's memory and the people who were so good to her,” Bill said. Those dollars were raised through admission tickets, concession sales, silent auction items and considerable donations. “Steve Holmes of Summit Strategies (an investment firm) staked us with a large donation in the beginning,” said Steve, who

/ GLENNON FRIENDS

served as tournament chairman. “Everybody who worked at the tournament was a volunteer.” “In later years the guys who drove our success were from World Wide Technology,” Bill said. “Three of the executives there — ­ Jim Kavanaugh, Joe Koenig and Tom Strunk — were playing soccer at Saint Louis University when I announced their games. “We won't continue to have the tournament on a yearly basis, but we will continue to do whatever possible to give money to the hospital,” Bill said. “We set a goal and weren't going to leave until we got it done,” Steve said. “The hospital does phenomenal work and everybody on that committee is proud to be associated with it.” “When the twins were at Cardinal Glennon I realized that miracles were happening every day on the corner of Grand and Vista and a lot of St. Louisans weren’t even aware of the hospital,” Connie said. “We hope to make more people aware of the outstanding doctors and nurses and the amazing differences they make in children’s lives.”

glennon.org Spring/Summer 2020 • 55


GLENNON FRIENDS / TRIBUTE

TRIBUTE

John J. Lucken

J

ohn Lucken was what most people would call an eccentric artist with a golden heart. The St. Louisan was born in 1940 and looked at life through an artistic lens from childhood until he passed away in May 2018 just four days before he would have turned 78 years old. Lucken graduated from Bishop DuBourg High School and briefly attended Washington University in St. Louis’ School of Fine Arts under the tutelage of acclaimed artist Siegfried Rhinehardt. He started work in the Art Department of the Graham Paper Company before being hired as the Artistic Director for the St. Louis Planetarium when it opened in 1963. “He drew the entire solar system and the zodiac, which was incorporated into the star shows,” recalled his sister Mary Carol Jablonski. “Some of his original artwork still exists in exhibits today. He painted and created things for his own pleasure and enjoyment rather than for monetary gain. Oil paintings, sketches, woodworking and sculpting, he did it all.” Lucken replaced his walkways with hand-set stones in a unique mosaic with subtle coloring and extended this pattern to his patio, finishing off with a hand-set sponge rock wall. He made his own molds for handmade birdbaths and benches. During his oriental phase, he also built pagoda birdhouses 8-10 feet tall with intricate oriental carving. Lucken saw a potential use for everything that he ultimately collected and stored. Nothing was ever thrown away. While maintaining a frugal lifestyle, though, Lucken invested in stocks, with the ultimate goal of giving it to charity.

Lucken was a lover of nature and subsequently planted probably every flower and shrub known to mankind — to the chagrin of his neighbors. Walking down the street it was a struggle to see where the house was behind the greenery. These idiosyncrasies were overlooked somewhat because of his cheerful nature and generosity. He would help anyone in need and shared cuttings of his beloved plants. Lucken connected with SSM Health Cardinal Glennon Children’s Hospital when Jablonski’s daughter Mary Melissa, “Missy,” was born in 1974. Diagnosed with spina bifida and hydrocephalus, a condition in which fluid builds up in the brain,

Lucken’s first serious health episode occurred in November 2016. He was putting pro-life signs up when he knew he had a heart attack. But he had not voted yet, so he drove to the polls, voted and then told the poll workers that he had a heart attack. He was sent by ambulance to the hospital. He miraculously survived but his health was compromised. He experienced another health crisis in 2018. Jablonski’s daughter, a nurse, was working the night shift. He appeared on her floor during her shift and was calling out for his sister, Mary Carol, to walk through his door. His eccentric lifestyle had led to a 25-year estrangement from his family. Jablonski’s daughter told her mom that he had called for her and that he was in bad shape and perhaps she could see him. “That Sunday at Mass, the priest said during the sermon that we all have people in our lives that we don’t like or don’t speak to and vice versa. However, he said everyone needed to walk through that door and reconnect. It was like Divine Providence,” Jablonski said. “So I went to see him. To this day, I’m glad I did.” Jablonski remained part of Lucken’s life until he passed away.

“He was so impressed with the care she received at Cardinal Glennon that it was the driving force leading to his donation...” Mary came to the hospital clinic every month for continuing care. “He was so impressed with the care she received at Cardinal Glennon that it was the driving force leading to his donation to Cardinal Glennon and other charities benefiting children,” said Jablonski.

56 • SSM Health Cardinal Glennon Children’s Foundation

“It was only after he passed that we knew the extent and complexities of his finances and personal life,” she said. “He kept so much 'stuff,' but also kept his investments, which makes it possible for his legacy to live on through his generous donations to places like Cardinal Glennon.”


WHY I GIVE

/ GLENNON FRIENDS

“Why I Give”

My great grandson, Dominic, was airlifted at two and half weeks old due to RSV. He spent 10 days in the PICU, with a pneumothorax and in a medically-induced coma. He coded twice and both times was able to stabilize. Today he’s 7 and is perfectly healthy and only has two scars from chest tubes that he is left with from this horrific experience. Thank God for you and your care. This is why I am inspired to give to Cardinal Glennon. Rose Marie Schroeder

We are blessed to be able to give back to Cardinal Glennon. My daughter and I have been a part of Cardinal Glennon since October 2018, when she was diagnosed with agenisis of the corpus callosum in utero. At 5 months of age, we found out she was also aspirating liquids so she now has a feeding tube. We see a number of doctors and specialists and we couldn’t be a part of a more outstanding hospital with amazing people, staff, doctors, nurses and teams. We appreciate everyone for taking such great care of Fayth.

We are inspired to give to Cardinal Glennon because they saved the life of our now 1 year old, who was born with severe meconium aspiration and needed to be on ECMO. We are so grateful to the entire Cardinal Glennon community for everything they did to save Elliot’s life. We are very lucky that he is thriving. Tzivia and Brett Kalmes

Jessica Davitz

glennon.org Spring/Summer 2020 • 57


GLENNON FRIENDS / DEVELOPMENT BOARD

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 Membership Chair

Ben Albers Secretary

Lauren Vandegriffe Public Relations Chair

Jeremiah Dellas Young Friends Leader

Serafina Nicolais Board Members

Liz Barrett Teresa Braeckel Hannah Castellano Patrick Donlan Dana Ferrick Lacie Good Mike Gregoritsch Marcy Handlan Zach Kratofil Rick Kuhlman Brian Lamping Chris Leonard Jeff Meyers John Marino Adam Morgenthaler Michael Niemann Declan O’Neill Nathan Riner Matt Sartori Patrick Sheley Tracey Swabby Patrick Van Cleave John Vitale Stephen Wagner Brandon Wappelhorst Alex Wasson

Meet the 2020 Development Board’s Executive Team Joe Stroot, Development Board President Producer at Lockton Companies

Lauren Vandegriffe, Development Board Secretary Commercial Card Account Executive at UMB Bank

A former patient of SSM Health Cardinal Glennon, Joe was looking to get involved in a nonprofit organization and made a connection to SSM Health Cardinal Glennon through his mentor and partner at Lockton Companies. As President he leads the board’s efforts to fundraise for the hospital. His involvement inspires him to donate time, effort and energy to ensure the hospital can operate to its fullest potential. While President, he hopes to create and maintain a culture with the Development Board attracting members that are brought into and live the mission of SSM Health Cardinal Glennon. He hopes to look back at his time served and know his efforts helped the hospital to provide exceptional care to all patients.

Through Lauren’s career and professional networking, she became involved with the Development Board at SSM Health Cardinal Glennon. As Secretary she assists with administrative duties for the Development Board, enjoys seeing the impact they can make on the hospital services and puts the team page together for the Sun Run 5k. She serves on the Development Board to help raise awareness and vital funds so children and families seeking treatment have the best programs and state-of-the-art equipment available to them. Through her time on the Development Board, she hopes to ensure resources are available to all children and families in the future, regardless of their ability to pay.

Jake Eilermann, Development Board President-Elect President at McBride Homes

Jeremiah Dellas, Development Board Public Relations Chair President & CIO at STL Wealth

Jake is a Cardinal Glennon kid and spent a few months in the hospital after he was born. While he was too young to remember the experience, his parents absolutely rave about the hospitality and care provided. This led him to get involved on the Development Board through his father and other members of the Board of Governors. As President-Elect, he enjoys working together with other Development Board members and the Foundation staff to create some very impactful events, with Scoops of Fun being his favorite. It’s a kid-centric event at the Magic House that benefits the Footprints program at the hospital. It’s a fun and interactive way to give back to the hospital. Through his time on the Development Board, he hopes to further the Foundation and strategic vision already in place, create more awareness of the hospital and bring in additional funding.

As a rambunctious kid, Jeremiah became familiar with the care provided at SSM Health Cardinal Glennon so he jumped at the chance to be involved on the Development Board. As Public Relations Chair he serves as a liaison between the Development Board and Foundation office. Jeremiah and his wife are both passionate about the great and important work at the hospital. They even involve their kids in fundraising events like Glennon Style and the Field-Side Party at Glennon Gallop. Jeremiah recognizes the critical role the hospital plays in our region and hopes to continue to see amplified efforts when an individual’s charitable activities align with other networks, both social and professional. Jeremiah is practicing this by having his professional team host 70 guests at Scoops of Fun to the Magic House later this year, raising awareness to more people in our community.

Ben Albers, Development Board Membership Chair Commercial Real Estate Broker at Newmark Grubb Zimmer

Serafina Nicolais, Development Board Young Friends Leader Attorney at Greensfelder, Hemker & Gale, P.C.

SSM Health Cardinal Glennon has always been a safe place for Ben and his family. With his entire family having some involvement in the hospital for his entire life, he joined the Development Board to provide his unique contribution to the hospital’s mission. As Membership Chair, he meets with new members and keeps current members engaged in various fundraising efforts throughout the year. His time on the Development Board is extremely fulfilling as his support of events, like the Glennon Golf Classic, directly impact the day-to-day lives of the patients through the hospital’s Music Therapy Program. He hopes to not only raise funds and awareness for a world-class hospital, but also set up a program that continues to grow long after his involvement on the Development Board.

Serafina was introduced to the mission of SSM Health Cardinal Glennon through her involvement on the Glennon Gallop event planning committee. After volunteering and seeing the impact the Foundation’s events have on the hospital, she couldn’t wait to get involved. She quickly became part of the Development Board where she now leads the Young Friends group initiatives to introduce other young professionals to the hospital’s mission. She’s excited to grow the membership of Young Friends along with chairing the Field-Side Party at Glennon Gallop this fall. She serves on the Development Board because of the important role community support provides for the hospital and wants to instill that in other up-and-coming professionals. She recognizes most of them are focusing on their careers, but knows it’s also important to give back to the community they are part of – and that’s the impact she hopes to have during her time on the Development Board.

58 • SSM Health Cardinal Glennon Children’s Foundation


SPOTLIGHT

SPOTLIGHT

/ GLENNON FRIENDS

KIDS HELPING KIDS

Community Toy Drives Spread Cheer for our Young Patients

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t SSM Health Cardinal Glennon Children’s Hospital, we are blessed by the many organizations that help fund major projects throughout the hospital that enhance care and improve the quality of services we provide. We are also indebted to the many individuals and groups who think of our young patients and want to spread a little cheer. This past Christmas, two high schools held toy drives to collect toys for our patients. In the Chelsea Detrick Experiential Learning Center at Webster Groves High School, students in the Real World Problem-Solving class explored global issues such as poverty, drilling the topic down to research how countries, states, local communities and small organizations address ways to support families and children. More than just experience a day or two of service, the students wanted to explore ways to effect change. After fundraising for another project, students learned that SSM Health Cardinal Glennon was trying to collect toys during the holidays to give to hospitalized children. “We wanted to help by donating toys for kids in our own age group, so we held a toy drive to collect items for middle school and high school kids that were being cared for in the hospital,” said Elise Keller, a senior at the high school. Brainstorming ideas, the class created Idea Boards that listed potential crafts, toys and games, such as friendship bracelet kits and other crafts, card games and board games. With friendly competitions between classes and departments, the class succeeded in collecting more than $400 worth of games and crafts. “My hope for the students in my class was for them to feel empowered when they look at multi-faceted problems in the real world and to gain some experiences that can have small changes that lead to a ripple effect,” said Kerry Arens, EdD, educator and coordinator of the Experiential Learning Center. “The class teaches them to ask questions, overcome hurdles and lead with empathy and understanding before trying to fix a problem. The end result, I hope, is that they see that their activism is valued and vital for communities to come together and solve a wide range of issues.” At Lafayette High School in the Rockwood School District, the Class of 2022 is already engaged. Sophomores in the school researched community organizations to see where they could make a difference. After receiving a letter from Ryan Jennings, Community Outreach Coordinator with the SSM Health Cardinal Glennon Children’s Foundation, student leaders of the Class of 2020 also decided to hold a “kids helping kids”

Students from Lafayette High School (above) and Webster Groves High School (below) held toy drives to collect toys for patients.

toy drive. “We worked with community partners such as Home Depot to get large boxes that we decorated and put in every classroom,” said sophomore Brad Simmons. “At Lafayette High, our biggest strength is our size and we knew we could make a difference if we all contributed and donated toys for the patients at Cardinal Glennon.” Working with fellow sophomore leaders Pooja Reddy, Talya Parr and Aashish Allu, Simmons says the team created friendly competitions in all grades. “We had people bringing in everything from Marvel super hero toys to baby toys,” he recalled. “We collected more than 100 toys to donate.” He added, “Cardinal Glennon is a phenomenal organization. I’m sure every neighbor or friend knows someone who has been impacted by them. I’ve had family there, too, so it was very gratifying and seemed like the perfect way to give back. My own reflection is that I hope the kids in the hospital realize that there is hope and that help is available from many areas of the community to make their days brighter.” SSM Health Cardinal Glennon always welcomes the support of the community. If you’d like ideas for fundraising activities, contact our Community Outreach Coordinator Ryan Jennings at ryan.jennings@ssmhealth.com. glennon.org Spring/Summer 2020 • 59


GLENNON FRIENDS / SPOTLIGHT SPOTLIGHT MARYVILLE UNIVERSITY’S KIDS ROCK CANCER

Kids Rock Cancer

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hat do you think when you hear the doctor say, “You have cancer?” For 14-year-old, Jamie-Lynn, this was a very shocking and scary thing to swallow. Prior to diagnosis, she was having significant periods of shortness of breath, great difficulty sleeping and a swollen abdomen. She knew something just wasn’t right. She was diagnosed with a rare form of cancer normally found in adults. In fact, statistics show that someone under the age of 18 is only diagnosed once in 10 years. Though startled by this monumental life change, Jamie-Lynn was also comforted by very close family and friends all around her. She welcomed the opportunity to spend time in the hospital with Tracie Sandheinrich, MA, PLPC, MT-BC, Senior Music Therapist with Maryville University’s Kids Rock Cancer. Feeling stronger, Jamie-Lynn said, “Ya know, I’m not lucky, I’m just rare.” This phrase seemed to describe the nature of her situation and fit naturally into the creation of a song. She wanted to be an inspiration for others because “even though this is a tough situation, I’m getting through with a positive mindset,” she felt and wrote her first song: “I’m Not Goin’ Nowhere.” Nine months later, Jamie-Lynn needed treatment for an additional cancer diagnosis. Though unexpected, she took the news with a positive attitude. This meant a complete treatment conversion, much different than her previous treatment. After the first round of the new chemotherapy, the doctor found no evidence of disease and she is now in remission. In early March, Jamie-Lynn worked again with Sandheinrich, who offered, “There is an undeniable bond that patients have with their

therapists. When there is a chance for collaboration, a co-treatment experience can heighten the positive psycho-social benefits of a music therapy session.” Sandheinrich teamed up with Kelli McKee, MA, MT-BC, SSM Heath Cardinal Glennon Music Therapist, who adds, “Music plays a huge part in Jamie-Lynn’s life, so the more opportunities to make music, “I’m Not Goin’ Nowhere” Written by Glennon Patient, Jamie-Lynn I’m not in the bed just lying around I’m wondering if answers will ever be found I am strong – I won’t give up on myself I know it feels unfair, but I’m okay now But I won’t let it take me down I won’t let it push me to the ground And I say… I am an inspiration I’m not lucky, just rare I’m getting through with a positive attitude Don’t ya know, I’m not goin’ nowhere I said, I’m not goin’ nowhere I never knew I would be a "1 in a million” A cry for pain I never thought I’d know Breathing hard like I couldn’t get enough In my stay, I knew I had to be tough But I won’t let it take me down I won’t let it push me to the ground And I say… I am an inspiration I’m not lucky, just rare I’m getting through with a positive attitude Don’t ya know, I’m not goin’ nowhere I said, I’m not goin’ nowhere No I won’t have any doubt Yeah I’m gonna break through now Don’t stop me now I am an inspiration I’m not lucky, just rare I’m getting through with a positive attitude Don’t ya know, I’m not goin’ nowhere I said, I’m not goin’ nowhere Don’t ya know, I’m not goin’ nowhere I said, I’m not goin’ nowhere

60 • SSM Health Cardinal Glennon Children’s Foundation

the better. The three of us joining forces to create her new song was the perfect way to bring two of her favorite caregivers together, a very special day.” Jamie-Lynn’s second song called “Bright Side,” much different from her first, has themes of transition, support, gratitude, family, faith, purpose and realization. It’s an upbeat, beautiful tribute to her amazing journey. Even though their path has changed, today, Jamie-Lynn and her family are hopeful for what the future holds. Both Sandheinrich and McKee are so happy for Jamie-Lynn and her family, and thoroughly enjoyed getting to know them and be part of this special journey. Kids Rock Cancer (KRC), now celebrating its 10th year, is an innovative Maryville University program that helps families successfully cope with the challenges of a cancer diagnosis through the power of music therapy. The program provides a boardcertified music therapist to help children battling cancer and blood disorders (ages 5 and up), teens, young adults, siblings and other children affected by a diagnosis within the family - using music and therapeutic songwriting as a vehicle for expressing their feelings. Heart & Harmony, a 10th anniversary gala to support KRC, has been rescheduled. Please check kidsrockcancer.org for event updates.


SPOTLIGHT

/ GLENNON FRIENDS

SPOTLIGHT FRIENDS OF PATIENT LUKE NEWBERN

Santa Cause Workshop

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riends of Cardinal Glennon patient Luke Newbern hosted the 1st Annual Santa Cause Workshop this past holiday season. Luke is an amazing young boy battling congenital heart disease. Friends, family and neighbors visited one of the biggest personal Christmas light displays in Wentzville for a free donation-based event to raise

funds for SSM Health Cardinal Glennon Children’s Hospital. Guests enjoyed a visit with Santa, hot cocoa, cookies, crafts, macaroons and holiday cheer all while supporting a great cause. In the first year of this event, they raised $1,099 in Luke’s honor and look forward to raising even more next year!

SPOTLIGHT ST. ALBAN ROE COUNCIL 12022

St. Alban Roe Knights of Columbus

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n Saturday, October 12, St. Alban Roe Council 12022 hosted its 19th Annual “Tee Off for the Kids” at the Pevely Farms Golf Club. Despite cooler temps and rainy conditions, 110 golfers came out to enjoy a fabulous day of golf to support patients served at The Knights of Columbus Developmental Center at SSM Health Cardinal Glennon Children’s Hospital. The Knights of Columbus Developmental Center supports children with autism and other neurodevelopmental disorders by helping them to reach their highest potential through comprehensive evaluation, care, family guidance, education and innovative research. Just a month later, on Saturday, November 23, St. Alban Roe Council 12022 hosted its first-ever “Trivia Knight” at the St. Alban Roe Parish Life Center gym. More than 320 attendees and 30 volunteers enjoyed a

fun-filled evening of trivia and bidding on many great items in a silent and live auction. Gary Schroeder, Trivia Knight Chairman, said, “Everyone was a winner, because the proceeds went to such a worthwhile cause at Cardinal Glennon.” On January 6, 2020, a check in the amount of $35,975 was presented to SSM Health Cardinal Glennon Children’s Foundation. Since their first event in 2001, proceeds have grown each year and now total in excess of $460,000. Their longstanding partnership and dedication to serve God’s special children is deeply appreciated by all patients, families and staff at SSM Health Cardinal Glennon! glennon.org Spring/Summer 2020 • 61


GLENNON FRIENDS / DID YOU KNOW?

F R EE LI FE P LANNI NG FORUM

Did you know? You can create a personal legacy that brings lasting hope and joy to a child:

WAYS TO GIVE

PARTNER WITH US TODAY: • Charitable Gift Annuities • Charitable Trusts • Donor Advised Funds • Volunteer

Reflections Reflections Prepare yourself and your family for the unexpected.

GIFTS YOU CAN MAKE TODAY:

Fall 2020

• Outright gift of cash • Securities now or later • Life insurance

Join us as our experts reveal the essentials for life planning.

• Real estate gifts now or later • Outright gift of appreciated property now or later • Savings bonds now or later • Corporate Matching Gift

Ethics: Moral Understanding Peace for faith and family Wills and Trusts: Financial Certainty Peace of mind for your loved ones Philanthropy: Legacy for All Peace for your heart and soul

Ben

efic

iary

AFTER YOUR LIFETIME GIVING: • Life insurance beneficiary • Will or living trust beneficiary • Retirement plan gift beneficiary

62 • SSM Health Cardinal Glennon Children’s Foundation

Health Care Directives: Legal Harmony Peace with medical decisions

For more information visit glennon.org or call 314-577-5605.


SPOTLIGHT

/ GLENNON FRIENDS

SPOTLIGHT CLAY COUNTY CANCER CRUSADERS

Clay County Cancer Crusaders

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he Clay County Cancer Crusaders are a nonprofit group that raises funds to support local cancer patients and cancer research facilities. The group was founded in 2011 by Nancy Mills, Lisa Haycock and Rick and Sherry Gibbs. They saw a need in their community and wanted to do something about it, so they work year-round to raise funds for these causes. In 2019, the group chose The Costas Center at SSM Health Cardinal Glennon Children’s Hospital to donate $15,750 earmarked for cancer research. One important aspect that these funds will support is the hospital’s membership to the Children’s Oncology Group. This organization is a clinical trials group supported by the National Cancer Institute and is the world’s largest organization devoted exclusively to pediatric cancer research. This membership gives local children access to the latest and greatest treatment options and trials right here in St. Louis. To date, the Clay County Cancer Crusaders have donated nearly $50,000 to support cancer research at SSM Health Cardinal Glennon.

SPOTLIGHT KIMBALL AND WORKING SPACES

Rocking a Stocking

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imball and Working Spaces, office design partners, hosted their annual Rocking a Stocking design contest in December in the newly renovated Working Spaces showroom. Local designers came together to compete in a friendly competition in Maryland Heights and all of the stockings were later donated to SSM Health Cardinal Glennon Children’s Hospital for kids who had to spend the holidays in the hospital. Design groups also collected thousands of new toys which were donated to Cardinal Glennon kids. The generous donations from Rocking a Stocking allows our Child Life Team to continue to have age-appropriate options readily available for all patients throughout the year. Play is considered an important part of the healing process at SSM Health Cardinal Glennon. Child Life Specialists provide opportunities for patients to gain a sense of control over their hospital experience via play. Playrooms are also available on each inpatient floor, and offer toys, games, art, books, movies and music to help children cope with hospitalization.

glennon.org Spring/Summer 2020 • 63


GLENNON FRIENDS / SPOTLIGHT SPOTLIGHT D1 TRAINING ST. LOUIS WEST

Ultimate Frisbee Tournament

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hout out to D1 Training St. Louis West for hosting an ultimate frisbee tournament to benefit Cardinal Glennon kids! The tournament kicked off at noon on Sunday, March 1, and each team played a minimum of two games in the double elimination set-up. Players enjoyed yard games and camaraderie between games. SSM Health Cardinal Glennon caregivers (pictured right) Brooke Brothers, BSN, RN, and Amanda Denny, BSN, RN, were among the 42 players who came together for the friendly competition which raised $780 for the kids. They spoke briefly to thank their fellow gym-goers for their support. Brooke says, “It was a fun day! It meant a lot to Amanda and me to have our D1 family supporting a cause that is dear to both of us.”

SPOTLIGHT CITY WIDE PROGRAM BY 4 HANDS BREWING COMPANY

4 Hands Brewing Company

4

Hands Brewing Company has been supporting the local St. Louis community since 2016, including SSM Health Cardinal Glennon Children’s Hospital. Their team has partnered on events and projects have provided them a deeper look into our mission, specifically with the annual Heart & Soul event. Liz Swyers, Marketing Manager said, “We look forward to collaborating and working with Cardinal Glennon any chance we get to do something special!” In April 2016, 4 Hands launched their City Wide Program into the St. Louis market. City Wide is dedicated to fostering the city of St. Louis and supporting local non-profits. Each year the 4 Hands team picks organizations that cover a wide range of services and contribute to our community in a unique way. Since the program launched, 4 Hands has contributed more than $200,000 to organizations in the city

64 • SSM Health Cardinal Glennon Children’s Foundation

of St. Louis. In January, 4 Hands announced that SSM Health Cardinal Glennon would be a 2020 City Wide Recipient, and we could not be more grateful!


SPOTLIGHT

/ GLENNON FRIENDS

SPOTLIGHT ST. LOUIS MEN’S GROUP AGAINST CANCER

St. Louis Men’s Group Against Cancer

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ince 1969, St. Louis Men’s Group Against Cancer has raised millions of dollars for cancerrelated organizations and brought the entire cancer community together to be a valuable resource for families facing a diagnosis. To celebrate their 50th Anniversary, they chose SSM Health Cardinal Glennon to receive $100,000 to support inpatient and outpatient oncology services at The Costas Center. When children come in for chemotherapy treatments at The Costas Center, their treatments can last anywhere from one hour to eight hours. With

With the generous gift from the St. Louis Men’s Group Against Cancer, SSM Health Cardinal Glennon was able to purchase new infusion chairs, patient trays and all new seating for guests. more than 6,000 children receiving treatment at The Costas Center each year, the infusion treatment area was transformed into a more functional and childfriendly space where children and their families can relax and feel at home during treatments. In addition to enhancing the patient experience, funds also helped update technology for the nurses station. The new electronic tracking board will ensure patient confidentiality, efficiency and functionality for the oncology team. For the past 50 years, the St. Louis Men’s Group Against Cancer has hosted an Annual Men’s Dinner where proceeds from the event benefit St. Louisarea cancer organizations that focus on prevention, research and care activities for patients and their families. “We are proud to support the enhancements to The Costas Center infusion treatment area,” said Executive Director Margie Price. “Knowing that our donation is playing an integral role in the healing process by promoting safety — as well as providing emotional and physical comfort for patients and their families — is really special to us.”

glennon.org Spring/Summer 2020 • 65


GLENNON FRIENDS / SPOTLIGHT

SPOTLIGHT THE FRIENDS OF KIDS WITH CANCER

Friends of Kids with Cancer Coat Drive Friends of Kids with Cancer goes above and beyond to support our families throughout their child’s treatment journey. This past winter Friends of Kids put on a coat drive to provide new coats for many of our patients in oncology treatment and their siblings. Patients and siblings were able to request favorite colors and receive a personalized coat they were really excited about for the winter season. Oncology/Hematology Social Worker, Aleeza Granote, MSW, shared, “Each winter, I realized the great need of securing winter clothing. I reached out to Friends of Kids with Cancer to address a growing need. This project helps to ensure our kids are warm, safe and able to alleviate the stress on our families.” Granote adds, “We are very blessed to have such an incredible organization in St. Louis supporting Cardinal Glennon families.”

Gift Planning Tax Change Highlights • The Tax Cuts and Jobs Act of 2017 drastically reduced the number of itemized deductions.

SSM Health Cardinal Glennon Children's Foundation Planned Giving Council

• The SECURE Act of 2019 increased the Required Minimum Distribution (RMD) from 70 ½ to 72 years of age and changed rules for inherited retirement accounts to require accelerated withdrawal by a beneficiary.

Karen Blumeyer

Sandy Koller

Cheryl Boushka

Andrew Mitchell

Rose Brower

Jessie Naeger

Chris Brumbaugh

Cindy Parson

Christine Burghoff

Dominic Pisoni

Jackie Capriano

David Rath

Hannah Castellano

David Skaggs

Bryan Cernicek

Deborah Smiley

Jack Challis

Mike Smith

Dawn Christoffersen

Evan Sowers

Adam Ford

Michael Stagoski

Paul Gantner

Stephen Steele

Marti Gurley

Lauren Wagner

• The CARES (Coronavirus Aid, Relief and Economic Security) Act of 2020 added new provisions such as expanding charitable deductions to $300 as an above-the-line adjustment for those who take the standard deduction and raises the AGI limit from 60% to 100% for those who itemize. While RMDs are not required this year, every donation matters and as with other accounts, you can make Cardinal Glennon Children’s Foundation a beneficiary. We encourage you to work with your financial advisor to create the giving plan that works best for you. As always, we are truly thankful for your generosity, especially during these challenging times.

66 • SSM Health Cardinal Glennon Children’s Foundation

Ed Higgins Dennis Jacknewitz


When you establish

a charitable gift annuity, you will receive a fixed payment for the remainder of your life — giving hope to young patients in need.

The best gifts under the sun

for America’s only free-standing Catholic children’s hospital.

We invite you to join those who

have created their legacy and changed lives.

Single-Life Gift Annuity Rates* 10%

9%

8%

6.8% 6%

10%

CONTACT US to receive your personal and confidential tax and income calculations offered for the rest of your life. Cardinal Glennon Children’s Foundation Rose Brower, Director of Planned Giving 3800 Park Ave., St. Louis, MO 63110 Toll free: 1-800-269-0552 or 314-577-5605 Tax ID: 43-1754347

7.9%

5.85% 5.2%

Age 65

70

75

80

85

90+

* Annuity rate and charitable deduction depend on your age at time of gift. Rates subject to change. Deferred annuities available beginning at age 55.

Return tear-off for more information

glennon.org

Address___________________________________________________________

Check below if you or your family have been impacted by the exceptional care provided by SSM Health Cardinal Glennon. ❑ I received care

❑M y family member received care

City___________________________ State/Zip___________________________

❑ I would like more information on how to make a gift today and/or after my lifetime to help children in need.

Phone____________________________________________________________

❑ I have included SSM Health Cardinal Glennon in my estate plans.

Email_____________________________________________________________

❑ I would like to learn more about how to include SSM Health Cardinal Glennon in my estate plans.

PLEASE RETURN TO: SSM Health Cardinal Glennon Children’s Foundation, 3800 Park Avenue, St. Louis, MO 63110

glennon.org Spring/Summer 2020 • 67

2020STLREVIEW

Name ____________________________________________________________

1-800-269-0552


WHERE ARE THEY NOW?

Where Are They Now? Brooke Schuessler / THEN: Injured in Accident, age 7

now Wild Mustang Trainer!

THEN

C

atching Brooke Schuessler in a quiet moment can be a tough challenge. Schuessler, a government-certified Mustang Trainer, is in the middle of training a wild horse for the Extreme Mustang Makeover, slated for late June in Kentucky. “I have 100 days to gentle and train a mare under a saddle,” she said with a laugh. “It’s day three, and so far, it’s going very well!” Schuessler began training wild horses at age 15. “I begged for a baby horse and my parents gave me one that was eight months old that was just weaned from her mom,” she said. “I taught her everything. After that, I was hooked on training horses.” Her active life is all the more amazing considering that Schuessler was in a life-changing accident when she was seven years old. Trying to surprise her grandfather who was mowing the lawn, she sneaked up behind him as he started to reverse. “I lost my balance and fell, and the lawn mower went over my right leg, taking the knee out and cutting up

NOW

the rest of the leg,” she said. She was immediately air lifted to SSM Health Cardinal Glennon Children’s Hospital. Then came a decision — should the leg be amputated? Schuessler’s mom talked with orthopedic surgeon Robert Medler, MD, and decided to try to keep the leg. Five years after the accident and with ongoing medical problems, however, Schuessler told her mom she wanted the leg amputated. “It was the best decision ever,” she said. While in the hospital, Schuessler recalls vivid memories. “Among them, I had a vision of Jesus with two angels. It is the strongest memory I have to this day,” she said passionately. “There also were several amazing nurses who took care of me. One of my favorites was Brooke Brothers. I also remember Barbara Brengle as the best brace lady you could ask for and the really great staff in rehab who kept me entertained while I was stuck in bed. Lastly, I met my prosthetist, Matt Ruengert, through

68 • SSM Health Cardinal Glennon Children’s Foundation

Cardinal Glennon. He has been the best prosthetist an active amputee could ask for!” Now 24, Schuessler earned her associate of arts degree and currently works in a trucking insurance agency. But her real love is training American Mustangs. “Mustangs have changed my life,” she said. “I have gentled and trained three of them for competition and am currently on my fourth. For the first one, I had 90 days to train him for an in-hand competition. We placed 16th out of 37 trainers. Two weeks after that, I picked up two more mustangs to compete in a 100-day competition. One placed champion; the other reserve champion!” Says Schuessler, “The horses and my time at Cardinal Glennon taught me a lot about life — determination, communication and passion for life. I translate that into everything I do.”


Dear Friends and Supporters,

D

uring this unprecedented time in our nation, and as we come together as a community to battle the COVID-19 pandemic, we once again recognize how truly blessed we are to have SSM Health Cardinal Glennon Children’s Hospital serving children and families across the region. Their specialists, physicians, surgeons and nurses are providing world-class pediatric care that’s second to none. For that reason, Prairie Farms is proud to support the annual Scoops of Fun fundraising event at The Magic House in St. Louis. Almost nothing relates better to a child’s world than a scoop of Prairie Farms ice cream. This wonderful event invites families to come out and enjoy ice cream treats while exploring The Magic House, one of St. Louis’ most beloved children’s museums. In between ice cream breaks, children and their parents are invited to experience face painting and other fun surprises waiting for them throughout the museum. It’s a perfect day for families to enjoy all the museum has to offer while also supporting children with unique challenges. Each year, proceeds from Scoops of Fun benefit The Footprints Program at SSM Health Cardinal Glennon, which is designed to improve the quality of life for children living with complex medical illnesses. It provides individualized childcare programs designed to prolong a child’s life and provide relief from suffering while they make a full recovery. Footprints staff tend to all needs including the physical, emotional and spiritual needs of children and their families. On behalf of everyone at Prairie Farms and the hundreds of our dairy farm families, we thank you for your continuous support of SSM Cardinal Glennon through events like Scoops of Fun. Because of your support we can help make a difference for children one scoop at a time. I can’t think of a sweeter way to give back to our children in need! Sincerely,

Matt McClelland Senior Vice President – Sales Prairie Farms Dairy, Inc.


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Children’s Foundation Published by SSM Health Cardinal Glennon Children’s Foundation 3800 Park Avenue St. Louis, MO 63110 314-577-5605 • 1-800-269-0552 email: info@glennon.org

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Glennon Sunday Where Faith and Healing Unite “ The miracles that happen every day at SSM Health Cardinal Glennon are made possible through the faithful support of our community and beyond.” - Archbishop Robert J. Carlson

give at glennon.org

You can be part of making miracles possible.

Lily, Glennon Kid


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