Glennon Magazine Fall/Winter 2021

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

glennon.org

Clinical Research Associates Guide Participation in International Trials Page 32

Fall/Winter 2021, Volume 40, Number 2

VIEWPOINT

D

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

If the pandemic has taught us anything, it’s the power of community and what can be accomplished through partnership with others. The heroic work of our SSM Health team members throughout the past 18 months has been extraordinary. SSM Health caregivers today are echoing the footsteps of our five founding sisters, who arrived in St. Louis from Germany nearly 150 years ago amid a devastating smallpox epidemic.

With faith, compassion and the generous support of their community, the Sisters persevered through endless challenges to provide hope and healing to those in need.

Like the sisters, the dedicated professionals at SSM Health Cardinal Glennon Children’s Hospital work long hours on the frontline, caring for children and their families. They are physically and emotionally weary, yet they show up every day with compassion, creativity and excellence.

“While we are honored and blessed to care for this community, we simply couldn’t do it without you and are deeply grateful for your ongoing support.”

Our community also has shown great concern for Cardinal Glennon patients and families during the COVID-19 pandemic with many reaching out in support through donations of bundles of handmade masks, flowers, treats, notecards and financial gifts. The inspiring Rise Up for Heroes caravan, organized by civic, sports and business leaders, brightened our parking lot and our day.

On behalf of the entire team at SSM Health, please accept our sincere thanks. Our intention to be a bright light for those we serve is unwavering, and our call to deliver safe, high-quality health care revealing God’s healing presence for all continues regardless of the pandemic disruptions.

While we are honored and blessed to care for this community, we simply couldn’t do it without you and are deeply grateful for your ongoing support.

Together, we can make a difference in the lives of those we serve together at SSM Health Cardinal Glennon.

Sincerely,

Laura S. Kaiser Laura S. Kaiser, FACHE President and CEO of SSM Health

Contents

28

22 20

44 16

FEATURES

16 20 22 26

MICU Intensive Care on the Road

Glennon Gallop Benefiting The Danis Pediatric Center

A Stimulating Solution On the Forefront of IBS Treatment

Glennon Golf Benefiting the Music Therapy Program

28

Growth Spurt

32

Clinical Research Associates

Child Life Teams Expand

Guide Participation in International Trials

38 40 44 46 50

Scoops of Fun Benefiting the FootprintsSM Program

40

DEPARTMENTS 8

GLENNON AROUND THE CORNER Our Impact Grows

10

HIDDEN TALENTS

Addressing the Impact of Gun Violence

12

THE TIES THAT BIND

Sun Run

14

CORPORATE CORNER

Benefiting the Children’s Fund

52

GLENNON AMBASSADORS

People Helping People

56

ASK THE EXPERTS

58

GLENNON GUILD

61

EMERITUS BOARD

The Time Is Now

Neurofibromatosis Clinic Honored with Donation

Dierdorf–Pronger Benefiting The Dan Dierdorf Emergency and Trauma Center

62 71

of Our Hospital Employees

Hospital Connections

Friends of Kids with Cancer

How to Stay Connected

Accidental Marijuana Ingestion

Glennon Card Shopping Days

Fall Gathering

GLENNON FRIENDS Supporting Glennon Kids!

WHERE ARE THEY NOW Joey Renick

ON THE COVER: Glennon kid Riley glennon.org Fall/Winter 2021 • 1

Glennon Volume 40 Number 2 Published semiannually by SSM Health Cardinal Glennon Children’s Foundation

BOARD OF GOVERNORS Most Reverend Mitchell T. Rozanski Chairman of the Board James G. Koman President of the Board

Dear Friends of SSM Health Cardinal Glennon Children’s Hospital, It is with heartfelt gratitude that we present the latest issue of Glennon magazine!

It is hard to imagine that nearly two years after the COVID-19 pandemic began, its effects are still with us. And while these challenges have brought new

Chrissy L. Nardini First Vice President

opportunities for us to display our strength and resilience,

David L. Taiclet Sr. Second Vice President

the fact remains that the strain on our health care system is very real.

Molly N. Cline Secretary

Despite the challenges, there are many exciting things

James F. Whalen Chair, Finance Committee John A. Schreiber Chair, Investment Sub-Committee Sandra S. Koller Foundation President

happening at SSM Health Cardinal Glennon. In this issue, you will read about our amazing staff who are bringing hope and healing to children with cancer through the latest research. In

Steven E. Burghart Hospital President

addition, we feature a new device that helps alleviate pain in

Douglas P. Long Assistant Secretary

children with GI issues that is only available regionally at

Margaret B. Barrett Brian C. Behrens Tony Berg Galen D. Bingham Andrew P. Blassie Cheryl C. Boushka James G. Brennan Clayton C. Brown Anthony J. Caleca Joseph Caro Matthew L. Carr Sharon A. Cliffe Susan R. Conrad William M. Corrigan Jr. Robert Q. Costas John R. Costello Timothy J. Danis Daniel L. Dierdorf John F. Eilermann Jr. Douglas R. Fabick Jeremy Fotheringham Mark J. Fronmuller Reverend Monsignor Vernon E. Gardin Dennis G. Gipson Kristin J. Guehlstorf Shawn Hagan Sherlyn Hailstone John F. Hefele John F. Herber Jr. Thomas E. Hilton Nicole Holland-Hong Leslee Holliday Dennis J. Jacknewitz Lawrence P. Keeley Jr.

SSM Health Cardinal Glennon! Those are just two of the many Craig E. LaBarge James B. Lally John D. Lee Robert G. Leonard Deborah Marshall W. Dudley McCarter Thomas P. McMillin Dennis M. O’Connor, MD Bhavik R. Patel Christopher R. Pronger Douglas A. Ries John S. Ross, Jr. Sister Mary Jean Ryan, FSM Shermini Saini, MD Molly M. Sansone Christopher A. Smith Steven R. Smoot Daniel J. Sullivan Kelvin J. Taylor Sr. Linda K. Tracy Greg J. Twardowski Sumit Verma Raymond T. Wagner Jr. Kevin L. Williams

wonderful things you will learn about in this edition of our Glennon magazine.

We are so very grateful for every one of you. The support of our friends, donors and partners in the community keeps the Mission of SSM Health Cardinal Glennon alive. Whether you support us financially or keep us covered in prayer, we cannot thank you enough.

As we enter the holiday season, it is my hope that we all find rest, renewal and strength for each new day.

Sincerely grateful,

John F. Eilermann III President, Development Board Jerry Herbert Chairman, Knights of Columbus Board of Visitors Julie H. Holland Co-President, Glennon Guild Meg G. Terry Co-President, Glennon Guild

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

Sandy Koller President SSM Health Cardinal Glennon Children’s Foundation

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

Ben

efic

iary

PARTNER WITH US TODAY:

GIFTS YOU CAN MAKE TODAY:

AFTER YOUR LIFETIME GIVING:

• Charitable Gift Annuities

• Gifts of Cash

•W ill or Living Trust beneficiary

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

• Securities now or later • Life Insurance • Real Estate Gifts now or later • Outright Gift of Appreciated Securities or Property now or later

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

• Savings Bonds now or later • Corporate Matching Gift

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

— Rosalyn & Vernon Pursley

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

glennon.org

D.J. Lampert

W

e introduced you to Glennon kid, D.J. Lampert, in 2011. D.J. was born with a condition called biliary atresia, a rare disorder that left him without bile ducts connected to his liver, which are needed to properly digest the fats in any foods he ate. At just 7 months old, D.J. was placed on the liver transplant list. On November 30, 1990, he received a donated liver at SSM Health Cardinal Glennon Children’s Hospital.

“As I got older, I learned that there were four other families at the time whose children needed a liver transplant like me, but three of those children passed away before they could get a transplant,” he says softly. “As I got old enough to understand it all, I realized that life is a blessing to me, thanks to a family who selflessly made the decision to donate organs.”

When D.J. was 18, just prior to entering college, he received a letter from his donor family. They invited D.J. and his family to Kansas City to meet face to face. “My donor was only 8 months old when she passed away,” he said. “How can you truly ever say thank you to someone who, in their own grief, gives you a lifesaving, life-changing gift?

I will never forget that day.”

Keeping physically active has always been an interest and priority for D.J. since his early school age years. He played soccer from a very young

D.J. as an infant at SSM Health Cardinal Glennon

4 • SSM Health Cardinal Glennon Children’s Foundation

age. In college at Quincy University, D.J. was a goalkeeper when the team rose to become fifth in the nation. He trained the F.C. Adrenaline soccer team and helped coach high school soccer players at Lutheran South High School. Additionally, D.J. participated in the Transplant Games of America, both locally and internationally every year from 2000−2017.

Ever-thankful for his liver transplant, D.J. has lectured to multiple groups about the benefits of organ donation. “I think about my transplant constantly,” D.J. says. “I believe that the very least I can do to say thank you to my donor family is to continually talk about the need for organ donation and to show people what a difference it can make to people like me. I am passionate about what I do because life is precious. I was given a second chance at life through organ donation, and I’m going to do all I can to give back to honor the memory of my donor and her family.”

D.J. graduated from Quincy University with his bachelor’s in psychology in 2012. He married his wife, Nicole, in June of 2019, and currently lives in St. Louis City. D.J.’s mother, Cheryl, recalls an emotional moment from D.J. and Nicole’s wedding.

“Seeing D.J. get married was such a happy milestone. D.J. invited his donor family to the wedding, and I was able to share the mother-son

D.J. participated in the Transplant Games of America, both locally and internationally every year from 2000−2017

dance with the donor’s mother that evening. It was something that neither one of us will ever forget,” says Cheryl.

After college, D.J. hoped to join the military. He felt a sense of duty and had a passion to serve and give back. Unfortunately, despite his stellar physical condition, his transplant history prohibited him from serving. He pivoted his energy to joining the Police Academy. Despite two denied applications, D.J. persisted and was accepted on his third attempt. He graduated in 2017 and currently is working in St. Louis City’s Fourth District.

“I see a lot on the job. We make many trips to the adult hospitals in the area, but I also find myself back at SSM Health Cardinal Glennon,” comments D.J. “If it’s an option to have a young person’s situation handled at Cardinal Glennon Children’s Hospital, that is always my first pick and where I want that child and their family to be cared for,” he says. “I remember a young lady that we picked up on the riverfront. She had witnessed a shooting and then was shot herself. The emergency department nurse at Cardinal Glennon Children’s Hospital spent two to three hours just talking with her. I believe her compassion allowed that young girl to mentally survive what she went through that night. You don’t find that level of compassion everywhere, but you find it at Cardinal Glennon,”

In college at Quincy University, D.J. was a goalkeeper when the team rose to become fifth in the nation

says D.J. “There’s just a synergy with the staff. It’s comforting to know we can work together and make impossible situations for families a little bit better.”

Aside from work, D.J. enjoys spending time with his two dogs, playing soccer D.J. today, a police officer in and a weekly game of St. Louis City’s Fourth District golf with his dad. “It’s important to have outlets for both your physical and mental health. I don’t take this life I’ve been given for granted, and I find a balance between what I feel is my responsibility and self-care,” says D.J. He will also take any opportunity offered — formally or informally — to talk to people about his experience. “I will never stop educating people about the importance of organ donation. It’s an honor and a duty to give back.” When asked if he’s ever seen the impact of his advocacy, D.J. humbly recalls a childhood friend. “We used to work at a catering business together. We worked together all through high school and even though our lives went separate ways, we still kept in touch through family. I got a call that he had died in a tragic car accident. When I had an opportunity to talk with his family, they told me he had donated his organs and that his decision was likely because of me. I hate that he died so young, but I also find comfort that someone out there has been given a second chance,” says D.J. As far as future plans, D.J. takes one day at a time. “In addition to work, I would eventually like to coach youth soccer again someday. I want to share the love of the game with the next generation.

Someone did it for me. My parents always taught me the value of gratitude. It’s just natural for me to want to pay it forward.”

glennon.org Fall/Winter 2021 • 5

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Crystal Wagon Awarded to Cardinal Glennon

T

he Crystal Wagon Award ceremony was held on October 25, 2021, at the St. Louis Club in Clayton, Mo. The Crystal Wagon is one of the most prestigious awards given by SSM Health Cardinal Glennon Children’s Hospital and the Board of Governors to honor individuals who are champions of children’s health issues.

Past winners include former senators, mayors and hospital presidents.

At this year’s ceremony, only one Crystal Wagon Award was given out, and could be the most important one ever awarded. This year’s award was collectively given to every caregiver, staff member and employee of Cardinal Glennon Children’s Hospital in honor of everything they have done and will do for those in their care. Hospital President Steven Burghart shared, “Their humility, kindness and strength are greatly appreciated, and we are so thankful to them for being our community’s guiding light in the face of adversity.”

Chief Medical Officer Marya Strand, MD, MS and Chief Nursing Officer Michelle Romano, MSN, RN, NEA-BC accepted the award on behalf of all employees.

Board of Govenors President Jim Koman (center) presents the Crystal Wagon Award to Michelle Romano (left) and Dr. Strand who accepted the award on behalf of all employees at SSM Health Cardinal Glennon

Celebrities Giving Back NHL players Brady and Matthew Tkachuk — sons of former Blues player Keith Tkachuk — take time for a virtual visit with SSM Health Cardinal Glennon Children’s Hospital patients. Brady plays for the Ottawa Senators and Matthew plays for the Calgary Flames.

6 • SSM Health Cardinal Glennon Children’s Foundation

FIND OUT THE LATEST NEWS

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Thankful Threads

T

he Thankful Threads T-shirt design contest is a way to creatively engage the SSM Health Cardinal Glennon Children’s Hospital community while giving back to the hospital. Alivia and Ryan Kraft, grateful parents and owners of the boutique Laree + Co., dreamed up the concept in honor of their daughter, Lilian, born with Trisomy 18.

FALL 2021 WINNING DESIGN

15-year-old Mia Poe is honored to be a Thankful Threads winner.

Her appreciation for SSM Health Cardinal Glennon began in 2019 when she Mia Poe, creator of this stepped into fall’s winning design Sivashanmugam Raju, MD’s orthopedic clinic expecting to be assigned physical therapy for a sore knee. Little did she know that she would embark on a three-year journey with Dr. Raju, Jean, Holly, Samantha and the rest of the orthopedic team: both of her femurs would need to be rotated. In May of 2019, Mia’s left femur

was rotated. Mia’s mom, Dawn Poe, states, “It was very painful and she was new to having major surgery, but the staff was unbelievably caring and Mia thought the food in the cafeteria was amazing.” After months of rehab and clearance from Dr. Raju, Mia was able to get back to competitive swimming with one straight leg and one that still needed surgery. Finally, in the summer of 2020, Mia’s right leg was rotated. After numerous appointments, two more surgeries and a final release from Dr. Raju, Mia returned to the O’Fallon Seahawks and Highland Splash swim teams and became a lifeguard for the Highland Community Pool — with two straight legs and no hardware.

“Words cannot express the gratitude that Mia and our whole family feel for Cardinal Glennon and Dr. Raju,” states Poe. Mia agrees, “Every medal or ribbon that I win, every step I climb at Triad High School, every life that I guard at the pool — all of that is only because of Dr. Raju and his outstanding team of caring people who have always put my best interests and the best interests of many other children before their own.”

“They were patient when she had a meltdown after her first surgery.

They were understanding when she

cried each time her second surgery was canceled due to COVID-19 and they rejoiced with her this past August when the fourth and final surgery was finished,” states Poe, who also admits, “Mia still schedules all of her appointments around when she can eat in the cafeteria! She feels like some of the best chefs in the world work there.”

Mia enjoys all forms of art: chalk art, painting, drawing, digital art and sculpting. In her free time, she watches and makes TikToks with her dogs, Bunnie and Gideon.

Thankful Threads design submissions and voting are closed until the next round. Follow @CardinalGlennon on Facebook to stay updated with Thankful Threads. glennon.org/thankful-threads

2022 UPCOMING EVENTS Join us at one of our many annual events and programs. Please visit glennon.org for more details!

Glennon Sunday Glennon Live April 23, 2022

Presented in partnership with Columbia Golf Club

A 30 Year Tradition

Scoops of Fun Spring 2022

Glennon Sunday June 5, 2022

Glennon Golf Classic September 9, 2022

Dierdorf-Pronger Golf Classic October 10, 2022

Glennon Card October 14-23, 2022

Sun Run October 16, 2022

Wine, Dine and Divots | A White Hot Affair

Saturday, September 13

Glennon Gallop September 24, 2022 G ATES

OPEN AT

3:00 P . M . | K RÄFTIG P OLO C LUB

glennon.org Fall/Winter 2021 • 7

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FIND OUT THE LATEST NEWS

AL N I RD A C

Glennon Around the Corner: GLENN ON Cribs for Change Collaboration The ABCs of Safe Sleep:

A

lone

B

ack

C

rib

The ABCs of Safe Sleep billboard for Safe Sleep Awareness Month in October

I

nfant mortality has been a major public health concern for many years.

Even today, despite widespread educational campaigns, most unintentional infant deaths are caused by unsafe sleep practices. In the St. Louis area, babies from low-income and minority families are up to six times more likely to experience sleeprelated deaths.

As part of its heritage of healing, SSM Health Cardinal Glennon Children’s Hospital is committed to serving marginalized members of our community by offering supportive services, community outreach and education, in addition to our awardwinning clinical programs, and giving parents the resources they need to keep their babies and children safe.

This project focuses on training local first responders to be “safe sleep champions,” as well as ensuring access to safe sleep environments to families in some of the most at-risk neighborhoods in our region.

This spring, the SSM Health Cardinal Glennon Safety Program was awarded a grant from the Missouri Foundation for Health and FLOURISHSt. Louis that enabled us to launch a new project, the Cribs for Change Collaboration. This project focuses on training local first responders to be “safe sleep champions,” as well as ensuring

Safe sleep public awareness campaign featuring Chief James Gholston from Berkeley Fire Department

8 • SSM Health Cardinal Glennon Children’s Foundation

access to safe sleep environments to families in some of the most at-risk neighborhoods in our region.

As of the end of August, more than 700 firefighters, EMS personnel and police officers from 25 agencies have completed the safe sleep champion training, which equips first responders to identify a potentially unsafe sleep environment and connect families with the resources they need.

As part of the Cribs for Change Collaboration, SSM Health Cardinal Glennon also launched a public awareness campaign that includes high-visibility signage at MetroLink and MetroBus stops in four strategic zip codes, as well as a billboard for Safe Sleep Awareness Month in October.

A special thank you to all our collaborating agencies for partnering with us on this important work and to Battalion Chief James Gholston from Berkeley Fire Department for being our mode and advocate!

Glennon Around the Globe: Midwest Pediatric Trauma Conference

T

he Dan Dierdorf Emergency and Trauma Center at SSM Health Cardinal Glennon Children’s Hospital is the longest-running Level I Pediatric Trauma Center in Missouri. In addition to ensuring round-the-clock coverage by a wide range of medical specialties, a primary responsibility of a Level I Trauma Center is to have a strong community outreach presence and a robust public education and injury prevention program. One of the ways SSM Health Cardinal Glennon fulfills this role is by hosting the annual Midwest Pediatric Trauma Conference.

Open to all caregiving disciplines, the conference typically draws more than 300 attendees from across the region to St. Louis for a day of networking and knowledge-sharing on a wide variety of topics. Sadly, the 2020 conference was cancelled due to COVID-19.

However, the conference team quickly adapted and began preparations for a virtual conference in 2021. “We try to deliver everything we possibly can with these conferences,” says Josh Dugal, Trauma program manager.

“We had never done a virtual conference, but everybody pulled together to make it work. It was a great team bonding exercise!”

Kristy Deutschmann, Trauma operations manager, became the champion for making this virtual conference a success. “This was right around the time SSM Health was beginning the migration to Microsoft Teams,” says Tiffany Taylor, Trauma

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

glennon.org

Faith, Glennon Kid

Members of the Cardinal Glennon Trauma and Injury Prevention teams who planned and presented at the Trauma Conference

performance improvement coordinator.

“Kristy was really the first person in the whole system to explore Teams in this way to make sure we were getting the most out of it for the conference.”

For the 2021 conference, a total of 358 registered attendees represented more than 100 hospitals, EMS agencies, school districts and community agencies from across the region and beyond — including Hawaii!

Going virtual had numerous advantages over an in-person conference. First, the platform enabled three offerings of the conference material on June 4, 11 and 25, as opposed to a single, daylong event as was done in the past. An evening session was also offered. This was especially enticing for attendees who

UPDATE

Fall/Winter 2020 issue

Demolition work to convert an abandoned basement lab into a Milk Lab is complete.

Construction will begin in November 2021 to create a dedicated space away from busy patient areas to prepare and store human milk to ensure the infant’s safety and best health outcomes.

It can take mothers whose babies require a very low-fat diet over an hour and a half

SAVE

SAVE

20% 20%

Glennon Card Glennon Card

Glennon Card: 10 Years of Support Page 38

work night shifts and for attendees from Hawaii, where a daytime conference in St. Louis would take place in the middle of the night.

“We had everything set up in a conference room and had our speakers come to the hospital to present. It made them feel like they were actually presenting to an audience,” adds Dugal.

“We got a lot of great feedback.”

Next year’s conference will be a hybrid of in-person and virtual. “We are so blessed to have the backing of the hospital administration for us to host this conference,” concludes Dugal.

“And after we’ve covered our expenses, any extra we make from registration fees goes right back into our injury prevention efforts. It’s a win−win.”

to pump and skim milk for their babies.

When the Milk Lab opens next year, it will have a centrifuge, which is a device that separates milk into cream and skimmed milk, reducing this time to 23 minutes. The centrifuge, along with trained certified milk lab technicians to operate it, will remove this burden from moms and allow them to spend more time with their babies.

Fall/Winter 2020, Volume 39, Number 2

glennon.org Fall/Winter 2021 • 9

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WHAT’S YOUR HIDDEN TALENT?

Ask 10 people what their talents are and you are bound to get a variety of responses. Many might respond that they simply don’t know, but sometimes they are hidden in plain sight.

WHAT’S YOUR

Hidden Talent?

At SSM Health Cardinal Glennon Children’s Hospital, our staff are known and appreciated for their clinical expertise — working diligently, skillfully and compassionately for long hours in lab coats, scrubs and various hospital uniforms.

Underneath all that knowledge and skill, many of these same passionate people are masters of other talents. Welcome to the first edition of “Hidden Talents,” where we will showcase the unique gifts and abilities of some of our staff. We have opera singers, cross-fit champions, artists and more. Stay tuned issue to issue and find out if your favorite caregiver reveals a talent that most people don’t know about.

SHADI AL-JUREIDINI, PHARMD, BCPPS Q: What do you do at SSM Health Cardinal Glennon?

Q: What do you do in your spare time? Do you have a hidden talent?

A: I am the Clinical Pharmacy Specialist with the pediatric cardiology group. I spend 50 percent of my time rounding with the cardiology team and the other 50 percent within the inpatient pharmacy.

A: I grew up playing the piano. Sometime during middle school, I gravitated toward playing drums. I loved the drums, but as I made plans to go to college, I knew that bringing them might prove difficult, so I tried my hand at playing guitar. Once I tried it, I committed to it, and I’ve been playing it exclusively for over 17 years. I play anything from classical to rock. I play weddings and events, and love playing on stage. I’ve played in a rock cover band

Q: What led you to SSM Health Cardinal Glennon, and what makes you stay?

A: My father spent the majority of his career as a pediatric cardiologist at Cardinal Glennon Chidren’s Hospital. As my siblings and I were growing up, I think he hoped that at least one of his children would be involved in a medical profession. I attended Southern Illinois University – Edwardsville School of Pharmacy and graduated in 2012 with my PharmD. I hadn’t gotten much exposure to pediatrics in school, but I remember my dad showing me the hospital and feeling his love for pediatrics.

Ultimately, I hoped to practice pharmacy in the pediatric setting.

I did two years of residency in South Carolina and took a position as an inpatient pharmacist at SSM Health Cardinal Glennon in 2015. I transitioned to working on the floors, became board certified in 2016 and took an opportunity to work with the cardiology team. I love my team, for sure, but I also love being involved with patients and families and making an impact on their care. I’m able to be part of transforming care for the better for these families, and that’s amazing.

with another pharmacy staff member, and I’m also part of a local metal band called Oracle. Since the pandemic, we haven’t been doing many shows, but we are recording and making an album.

Fortunately, I’ve even been able to share my love of guitar with SSM Health Cardinal Glennon. I performed at Heart and Soul in 2016, 2017, 2018 and 2019, and most recently, I was recruited to play classical guitar at a co-worker’s wedding.

It really feels great to be able to help. I miss the stage and look forward to more shows and opportunities.

Shadi Al-Jureidini performed at the Heart and Soul Gala, benefiting SSM Health Cardinal Glennon, from 2016 - 2019

10 • SSM Health Cardinal Glennon Children’s Foundation

WHAT’S YOUR HIDDEN TALENT?

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AMANDA COX, MSN, RN Q: What do you do at SSM Health Cardinal Glennon?

A: I am the Quality Improvement Coordinator and Nurse Educator for the Neonatal Pediatric Transport Team.

Q: What led you to SSM Health Cardinal Glennon, and what makes you stay?

A: Growing up, I knew I wanted to help people. I attended the University of Missouri in Kansas City and initially went to pharmacy school. Realizing I wanted to be more “hands on” with patients, I switched gears and completed my nursing degree. After several years in a NICU in Colorado, I moved home to Missouri and began working at SSM Health Cardinal Glennon’s NICU in 2016. I joined the transport team in 2019 and became the Quality Improvement Coordinator for the team in 2020. I am always looking to grow. I’ve had numerous opportunities to see and do things within my career here, but the best part has truly been the relationships built with families.

Q: What do you do in your spare time? Do you have a hidden talent?

A: I live on The Hill in St. Louis, so I love riding around in our golf cart, and of course enjoy eating and drinking up the culture there! My other two passions, that not as many folks know about, are clog dancing and competitive bike riding.

I have been dancing for 28 years and began clog dancing when I was 4 years old. My parents were part of the original founders of the Cadence Cloggers, based in Shiloh, Ill. It just became natural that both my sister and I grew up clogging, too. I still practice with that same group on Thursday evenings, and we perform throughout the St. Louis and Illinois metro area. During non-pandemic times, we average about 10 performances per year, the biggest of which is usually the annual Shiloh homecoming picnic hosted in September each year.

I also have a love for biking that was inspired by a SSM Health Cardinal Glennon patient. While I was working as a nurse in the NICU, I crosstrained with the sedation team to help with procedures. I met a young boy named Thomas who was being treated for leukemia. One of his favorite doctors at SSM Health Cardinal Glennon was an avid biker who did Team In Training

Amanda Cox (left, top right) has been dancing for 28 years and began clog dancing when she was 4 years old Bottom right: Amanda celebrates her achievement of biking 100 miles for the Leukemia and Lymphoma Society

events with the Leukemia and Lymphoma Society (LLS). I had never really biked before, but as I was helping him through a procedure one day, he challenged me to team up with his doctor and bike 100 miles around Lake Tahoe for LLS. Thomas is pretty convincing, so I joined the team with a few others and trained every week beginning in 2019. I flew to Tahoe in June 2019 and completed the 100 miles in one day. Thomas has since completed his treatment and I have never stopped.

I signed up for the Tahoe event in 2020 and 2021. Unfortunately, both events were cancelled due to the pandemic. Though I’m hopeful for a 2022 event, some of us took matters into our own hands for 2021. Friends and colleagues joined me for a home-grown 100-mile adventure of our own. Joe Lorenz (Thomas’ dad), Joey Renick (Thomas’ uncle, former Glennon kid and leukemia survivor), Luke Weaver, MD (former Glennon kid and leukemia survivor turned Glennon pediatrician), Tara Gardner-Dino, BSN, RN (manager,

neonatal/pediatric transport team), Kim Perry, RN and I biked 100 miles around St. Louis on June 6, 2021. We ended our trek at 1465 South Grand, in front of the hospital. It was great to finish here, and I look forward to continuing more adventures with these folks.

Are you an SSM Health Cardinal Glennon staff member with a talent you would like to share? Don’t be shy! Let us know us know about your hidden talent. We are hoping to make this a regular feature and give you the chance to share your passions. Email Laura Wulf at laura.wulf@ssmhealth.com if you have a talent you would like to share.

glennon.org Fall/Winter 2021 • 11

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THE TIES THAT BIND

MOTHER AND DAUGHTER

Rita and Katherine Chrivia

THE TIES THAT BIND: Glennon Family Raising the Next Generation of Glennon Family There are countless definitions of family. A mother and father together, a single mom or dad with kids. For some it’s friends or co-workers that assume the role of “family.” Whatever the case, the word family is a very significant word. These are people that surround you with care, concern and love. These are the people who see you, who understand what you are going through and, through it all, they stand by your side loving you through life.

Many caregivers who walk the halls of SSM Health Cardinal Glennon Children’s Hospital consider it their second home — and the people in it their “family” or second family. For others, their mother, father, spouse or grandparents worked here; some generations work together currently. The family ties are numerous and none of it seems coincidental. That indescribable “Glennon Factor” is evident within these family relationships, and we would like to introduce you to a few SSM Health Cardinal Glennon family members who started out as biological family but also call SSM Health Cardinal Glennon their second home.

Rita Chrivia, RD, CSP, LD

Katherine Chrivia, RN, BSN

Q: What’s your history and role with SSM Health Cardinal Glennon?

Q: What’s your history and role with SSM Health Cardinal Glennon?

A: I worked at SSM Health St. Mary’s Hospital-St. Louis from 1994–1998, but I have worked at SSM Health Cardinal Glennon since 1998. I am a registered, licensed dietitian and a boardcertified specialist in pediatric nutrition.

I was hired to work in the NICU, but I have also covered other floors and currently cover the nursery follow-up clinic.

A: I have been with SSM Health Cardinal Glennon for 10 years. I worked as a unit secretary in the NICU for one year and have been a nurse in the NICU for nine years.

Q: What was your inspiration to work at SSM Health Cardinal Glennon?

A: I was working at SSM Health St. Mary’s and learned of the NICU position becoming available at SSM Health Cardinal Glennon. I had done some NICU work previously and really enjoyed it.

Q: What is the best part about your job?

A: I am so blessed to be able to work with our preterm infants and their families. I get to help the babies grow and develop so they can go home.

Then, I have the benefit of being able to see them when they return to clinic and see how well they are growing and developing. I also love having the respect of the NICU team and the opportunity to be involved in research, protocol development and education.

Working Together at SSM Health Cardinal Glennon “When Kasey was in college and considering nursing, I knew there was a NICU unit secretary position available and encouraged her to apply. She has been with SSM Health Cardinal Glennon ever since. Because she works the night shift and I work the day shift, we will meet in the mornings to get to spend some time together. I am very proud of my daughter and the excellent nurse she has become.”

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— Rita Chrivia

Rita Chrivia with daughter Katherine Chrivia

Q: What was your inspiration to work at SSM Health Cardinal Glennon?

A: I started working as a unit secretary while in nursing school after my mom told me about the position. I loved working in the NICU and was lucky enough to be hired into a nursing position when I graduated.

Q: What is the best part about your job?

A: I love that I have the opportunity to care for the babies in the NICU. It is the best feeling when I get to see a baby who was born sick or early getting healthy and going home. I also enjoy that I am able to help parents learn how to participate in their infant’s care and bring a little bit of normalcy into what is usually a stressful situation for our families.

THE TIES THAT BIND

/ AROUND GLENNON

HUSBAND AND WIFE

Chris and Heidi Sallee Chris Sallee, MD, Assistant Professor Pediatrics – Hospital Medicine, SSM Health Cardinal Glennon Children’s Hospital

nursery (2013–2016). I was the pediatric residency program director from 2007 to 2018.

I have been serving as the medical director for The Danis Pediatric Center since 2018.

Q: What’s your history and role with SSM Health Cardinal Glennon?

A: I trained at SSM Health Cardinal Glennon during medical school between 1993– 1995. I also did my pediatric residency here from July 1995 through June 1998 and served as chief resident from July 1998 through June 1999. I took a position serving as hospital Chris and Heidi Sallee medicine section chief in November 2008. I continue in that Heidi, was already faculty at SSM Health role and have also served as the medical Cardinal Glennon, so the opportunity to director of informatics since 2010. work with her was attractive.

Q: What was your inspiration to work at SSM Health Cardinal Glennon?

A: I wanted to get back to working around people that had inspired me during my training. Working outside academics as a hospitalist was more isolating than I liked, as we did shift work and rarely worked alongside other pediatricians. Coming back to SSM Health Cardinal Glennon allowed for interactions with folks from all the various specialties and with medical students and residents. I’m a big believer in the saying, “there’s always someone smarter.”

The opportunity to work with people with varying interests and knowledge far greater than my own was intriguing.

Becoming the first hospitalist at SSM Health Cardinal Glennon and helping the program grow was also an interesting challenge. I had no idea that so much of my time would end up being devoted to informatics. I had used Epic (electronic medical records) at other SSM Health facilities. I arrived as Glennon was preparing to implement Epic in April of 2010. Figuring out how to make it work efficiently in the inpatient setting was a fun puzzle to solve. And seeing things that we developed here at SSM Health Cardinal Glennon be adopted as “foundation” within the Epic has been very rewarding. And of course my wife,

Q: What is the best part about your job?

A: I enjoy puzzles and problem solving.

The diagnostic/treatment challenges of inpatient pediatrics fit well with that.

Design and implementation of things within the electronic health record and design of data extraction strategies to support quality improvement and research projects mesh well with how my brain works, as well.

Heidi Sallee, MD, FAAP, Associate Professor of Pediatrics, General Academic Pediatrics, Medical Director of The Danis Pediatric Center Q: What’s your history and role with SSM Health Cardinal Glennon?

A: I was a resident in pediatrics from 1995–1998, learning the trade. When I returned in September 2003, I began my career as an academic general pediatrician, teaching medical students and residents, caring for patients in the primary care setting of The Danis Pediatric Center (2003–present), the general inpatient floors at SSM Health Cardinal Glennon (2003–2020), the newborn nursery at SSM Health St. Mary’s (2011–2016) and serving as the medical director for the newborn

Q: What was your inspiration to work at SSM Health Cardinal Glennon?

A: My grandfather, Peter Danis, MD, who is the founder of this hospital, is a huge inspiration for my career in pediatrics.

My aunt and uncle were also significant role models for me.

My uncle, Richard Danis, MD, was a pediatric surgeon here until his retirement in 1993 and my aunt, Mickey (Mary Katherine) Fellows was a nurse working in administration and nursing education here for many years.

Mostly, though, I believe that God called me to serve children and their families.

SSM Health Cardinal Glennon was founded on the premise of service and education, and the fit for my calling could not be any better.

Q: What is the best part about your job?

A: The best part of my job is caring for children and making a difference in their lives. I also just love the people that I work with, especially the staff at Danis Pediatrics. They are absolutely amazing.

Working Together at SSM Health Cardinal Glennon “It’s definitely an added benefit to be able to see my husband around!

Chris and I first got to know each other caring for a little girl named Savannah who was hospitalized with new-onset seizures. I was on my neurology rotation and he was on his general inpatient pediatrics rotation when we were starting our fourth year of medical school.”

— Dr. Heidi Sallee

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CORPORATE CORNER

The 4 North playroom enjoyed by Costas Center patients during hospitalizations.

Friends of Kids with Cancer Celebrating the Art of Childhood

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oing on 29 years ago, a group of families recognized that kids with cancer needed opportunities to continue to be kids even though they were dealing with adversity.

They founded Friends of Kids with Cancer with this priority at the forefront,” says Valerie Kennedy Lang, MSW, LCSW, OSW-C, the organization’s program director.

Friends of Kids with Cancer (FOKWC) supports patients in the region’s three pediatric hematology/oncology programs, including The Costas Center and inpatient hematology/oncology unit at SSM Health Cardinal Glennon Children’s Hospital. About 150 children and teens are diagnosed with cancer in those hospitals each year.

The organization also has funded a full-time art therapist for patients in The Costas Center and the 4 North inpatient hematology/ oncology unit.

“We take a three-pillared approach to helping kids: educational, emotional and social/ recreational perspectives,” Lang says. “Our programming connects patients and their siblings to tutors. We host parties so kids and families can have fun and let loose.

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Our emotional programming encompasses art support groups; survivorship, grief and bereavement Valerie Kennedy Lang, MSW, LCSW, OSW-C, counseling; program director at and individual FOKWC counseling.”

Patients and families may continue to participate in FOKWC programs for years after their treatments have ended.

Many SSM Health Cardinal Glennon patients have benefited from the programs of FOKWC, which includes a playroom on the hospital’s 4 North wing, where patients with cancer are admitted when they require hospitalization.

“The involvement on the floor evolved from the incredible

Margie Sedlack, retired program coordinator and current board member of FOKWC

efforts of Margie Sedlack, a retired program coordinator and Friends of Kids with Cancer board member,” Lang says.

Cancer treatments may continue for months to years, she notes. “There is a duality of being in two worlds. They live in a medical world where their life is consumed with medications and immune systems. Then they live in a normal world where they just want to be a kid and play, have fun and go to school.”

The FOKWC organization is supported by annual fundraising events that include a golf tournament and a fashion show featuring patient models. “In September we have our annual ‘Art from the Heart’ event. Art therapists work with the kiddos to create pieces of art,” Lang says.

Art therapist Briana McKee helps Glennon kid Waylon pass the time with crafts projects during his Costas Center visits

social worker. “They can utilize art media to articulate feelings or thoughts or responses to their challenging situation. If they can’t find the words, maybe a color can do it.”

Prior to the COVID-19 pandemic, FOKWC supported a part-time art therapist for The Costas Center and 4 North patients.

In that role, Briana McKee, MS, ATR, PLPC, was classified as a

“ Art therapy is an opportunity to connect with patients, siblings and families in a way that is emotionally supportive...”

“Each piece tells something about their story or shares something about them. Then the pieces are auctioned.”

Art also is a central aspect of FOKWC’s services. “Art therapy is an opportunity to connect with patients, siblings and families in a way that is emotionally supportive,” says Lang, who is a licensed clinical

hospital volunteer. After pandemic safety protocols prevented visits by volunteers, the FOKWC organization provided a three-year grant to fund the position full-time so McKee could be classified as a hospital employee. McKee is a registered art therapist a nd provisionally licensed professional counselor.

“The art therapist is a professional who is part of the Child Life and Creative Arts Therapy team,” Lang says. “The doctors and nurses are doing curative things Briana McKee, MS, ATR, PLPC and McKee is taking care of heads and hearts.”

“I am a classically-trained mental health clinician. I can do talk therapy sessions like other counselors and I have a masters degree in art therapy,” says McKee, who the kids call Bree.

ART AT GLENNON Waylon Vick, 9, paints mountains, rivers and lakes — especially lakes. When he is not attending third grade classes or visiting The Costas Center for chemotherapy, he likes to go fishing for bass and bluegill at a state park lake near his home in Iuka, Illinois.

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INTENSIVE CARE ON THE ROAD:

Glennon’s New Fleet of Mobile Intensive Care Units Travel the Midwest

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hen intensive or trauma care is needed, SSM Health Cardinal Glennon Children’s Hospital is the destination for children and teens who live in southern Illinois, much of Missouri and parts of Iowa, Kentucky, Ohio, Indiana, Tennessee and Arkansas.

The hospital’s transport team

assists more than 120 hospitals in the region and brings about 1,600 patients to the hospital each year, an average of nearly five each day.

To improve service and flexibility for these transports, the hospital has acquired five new ambulances equipped to the level of mobile intensive care unit (MICU).

“We cover a 250-mile radius.

These ambulances enable us to

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deliver intensive care during the transport, a higher level of care than some hospitals can provide because they don’t have the experience or equipment that we do,” says Andrew West, MA, EMTP, CMTE, operations manager of the pediatric and neonatal transport team at SSM Health Cardinal Glennon.

Two vehicles are built on the Ford 550 chassis that carries many

of the standard ambulance bodies now on the road and cost about $250,000 each. The other three vehicles represent a new generation of MICUs, based on a larger International MV chassis typically used for fire trucks. Equipped for intensive care delivery, each one costs nearly $500,000. Two of the larger MICUs will be based in Hannibal, Mo., and Cape Girardeau, Mo. “We transport many kids from those regions,” West says. “Our goal is to get our team to the kids faster. Even if it takes the same amount of time to come back to St. Louis, our clinicians are taking care of the babies and pediatric patients sooner.”

The MICUs were acquired through generous support from over 40 local foundations, corporations and individuals.

“We are proud to support our longstanding client, SSM Health, and celebrate the arrival of the new MICU fleet that will allow SSM Health Cardinal Glennon to continue providing the most advanced care to not only the St. Louis area, but to outlying areas of Southern Illinois and Missouri,” says Greg Hesser, president and

CEO of Alberici Constructors.

“For Alberici, building healthier communities goes beyond building the facilities that deliver world-class health care to our families, friends and neighbors.”

Greg Hesser, president “As corporate and CEO of Alberici citizens and Constructors community builders, we seek out opportunities to volunteer and support causes that make a difference. Through John Alberici’s leadership, The Alberici Foundation has provided meaningful, focused gifts to local health care and educational organizations, including SSM Health Cardinal Glennon Children’s Foundation, to help address some of our region’s most challenging needs,” Hesser adds.

“The hospital and foundation were very generous to donate a huge capital investment for us to have our own ambulances,” West says.

Since the hospital formed its transport team in 1979, it had contracted with outside operators that dispatched an ambulance and driver to pick up the team when a call was received. With MICUs and drivers on hand at all times, the average departure response time will be reduced from about 45 to 15 minutes.

“Now we control the operators, the drivers and the policies,” West says. “We know how the equipment is maintained and make sure it is up to date. This makes the atmosphere much safer for the team and the patients.”

Each MICU is nicknamed for the characters that decorate it. The Ford trucks are called Cheetah and Otter. Two of the International ambulances carry likenesses of St. Louis Cardinals mascot Fredbird and have been named Fred and Cardinal. The other vehicle is named for hospital facility dog, Thor.

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INTENSIVE CARE ON THE ROAD: GLENNON’S NEW FLEET OF MOBILE INTENSIVE CARE UNITS TRAVEL THE MIDWEST

Andrew West, MA, EMTP, CMTE, operations manager of the pediatric and neonatal transport team at SSM Health Cardinal Glennon

THE TEAM The transport team has a staff of about 50 people. “There are four teams on duty 24 hours a day. One is in Hannibal, one is in Cape Girardeau and two are at the hospital,” West says. “Each team has a registered nurse and either a respiratory therapist or a paramedic.

We have an EMT to operate the vehicle. They are required to have at least three years of critical care experience working in the pediatric or neonatal critical care units or the emergency room.”

New team members undergo a minimum three-month orientation during which they spend time in hospital units learning disciplines that may be new to them. A nurse with neonatal intensive care experience, for example, will work in the pediatric intensive care unit and emergency room.

“There is ongoing monthly education and certifications in skills like CPR, pediatric advanced life support and neonatal resuscitation,” West says.

MOBILE INTENSIVE CARE The transport team generally does not have to race back to St. Louis after picking up a patient because the MICU is equipped to

provide care that is comparable to what will be available in the hospital’s intensive care unit.

“We typically don’t have to run with the lights and sirens on because we are giving our patients such a high level of care.

Sometimes we do if there is a timecritical diagnosis,” West says. “Most of the time, the care we can provide is much higher than the referring hospital can provide.”

The MICUs are equipped with specialized intensive care technology, such as cardiac monitors, defibrillators, ventilators and other advanced respiratory equipment.

“We have isolettes that keep babies warm. The isolettes are fitted with ventilators that provide the precisely measured breathing assistance needed by tiny lungs.

We also have a cooling mattress.

Sometimes a baby has had a catastrophic event at birth and we want to keep them a little cooler,” West says.

“We have several types of IV pumps. We have to administer medications to tiny neonates who are sometimes born 17 weeks early at 23 weeks’ gestation. We also can deliver medications to people into their 20s who might have

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had a heart procedure or a lung transplant,” he continues.

“For our respiratory patients, we have oxygen, which any ambulance has, and we have medical air if the goal is to blend a certain percentage of oxygen to help kids feel better if they are having a cardiac problem. We carry nitric oxide, which helps some of the really sick respiratory patients.”

“They put a lot of thought into providing what we need to do our job efficiently,” says Glorine Lampe, a critical care flight paramedic who joined the transport team more than seven years ago. “The new trucks have all of the equipment we use at SSM Health Cardinal Glennon. Before, we would have to bring our own equipment onto the contracted standard ambulance.”

The three larger units have fittings to secure two stretchers or isolettes simultaneously.

“We can bring back Glorine Lampe, a two patients at once critical care flight paramedic or we have the option to keep an isolette loaded while we bring back an older patient,” West says. “If the team is headed back to Cape Girardeau or Hannibal after they have dropped off a patient here and another call comes in, they will be ready to go straight to that child’s hospital.

With the smaller trucks they would have to go all the way back to their base, switch out the equipment and then head back out.”

SAFETY AND COMFORT Transport team members work in snug, race car-style seats with fivepoint safety belts. The larger units were ordered with extended cabs that hold another row of seats in front of the work area. One seat is reserved for a parent.

“We can bring a member of the family back with us. Sometimes families don’t have transportation to St. Louis,” West says. “There is a refrigerator for them to have water and food and a charging outlet for their cell phone. They can use the time during the trip to rest and relax. Often they have been at the hospital for quite some time.”

Each MICU carries its own Wi-Fi hotspot to enable cellular communications with hospitals from the road. A new-generation suspension system isolates the ambulance cabin from the truck frame. “They have really nice hydraulics. The roads are still rough, but the ride is very smooth compared to the trucks we used to have,” Lampe says.

A large-screen television can be folded down from the ceiling to face the stretcher. “If the child wants to watch a cartoon, we can distract and entertain them,” Lampe says.

GLENNON CARE ACROSS THE MIDWEST “Some of our outside hospitals may see a critical pediatric patient once in a while, but they just don’t have the experience or equipment that we do,” West says. “Sometimes they almost give us a standing ovation when we walk into a rural hospital to take care of a baby that they are not comfortable caring for.”

“When we pull up to a hospital and people recognize the SSM Health Cardinal Glennon ambulance, there is a very positive response,” Lampe says. “People tell us it is nice to know that we are there.”

Lampe worked for municipal and district ambulance services before joining the transport team at SSM Health Cardinal Glennon.

“What I love about this team is that the work is challenging but we do what is right for our patients and families, taking care of very sick patients and seeing positive outcomes. We really take pride in that.”

“I Miss You” CHILDREN’S BOOK RAISES FUNDS FOR NEW MICUS Early in the COVID-19 pandemic, Toni Pagano missed the visits and hugs of her two granddaughters and thought of creating a book ­— her first — to send them her love.

In April 2020, her third grandchild was born prematurely and was quickly transported by ambulance to the Dana Brown Neonatal Intensive Care Unit at SSM Health Cardinal Glennon Children’s Hospital.

Pagano had long been a volunteer and donor for the hospital and decided to donate the proceeds from her book, “I Miss You,” to help the hospital purchase five new mobile intensive care units (MICUs).

In 2001, Pagano created a charity called “Hugs for Kids” that made blankets for patients. That effort ended in 2011 after new infection control guidelines made it more difficult to bring the blankets into the hospital. But blankets were on her mind during her grandson’s hospitalization.

“When my grandson returned home we were so grateful and wanted to know what we could do for the doctors, nurses and staff who were the blankets of love and protection around our precious grandson,” she says.

In a moment of inspiration, the text of the book came to her immediately. “Then I contacted a friend of ours, artist Michael Anderson, and he was so kind to donate his time and talent to illustrate the book.”

The book’s theme “is how much a grandmother misses her grandchildren when we are not able to be in contact,” she says and recites lines from the text. “I miss you today more than ever before. My prayer, my precious grandchild, is that you stay safe and protected in God’s hands today.”

Her grandson has celebrated his first birthday. “He is home, thriving and growing,” she says. “We are so fortunate that a premier hospital like Cardinal Glennon is right here and families have such wonderful accessibility to its medical care. When I heard the MICUs had been funded, I said ‘They are a Buy the book! blessing on wheels.’”

The books are sold for $3.99 and may be purchased online at bit.ly/3kechOl. All proceeds benefit SSM Health Cardinal Glennon Children’s Hospital.

glennon.org Fall/Winter 2021 • 19

GLENNON GALLOP 2021

Glennon Gallop | Field-Side Party

Benefiting The Danis Pediatric Center at SSM Health Cardinal Glennon

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he 2021 Glennon Gallop, presented by T. Danis Charitable Trust, returned to August Busch Polo Club in Defiance, Mo., for an unforgettable day of fun and fundraising! Now in its ninth year, Glennon Gallop has become one of St. Louis’ most unique and sought-after events. Proceeds from the event support The Danis Pediatric Center at SSM Health Cardinal Glennon Children’s Hospital.

The Danis Pediatric Center is a vital resource for the St. Louis region, providing comprehensive primary pediatric care for all children, regardless of their family’s ability to pay. More than 75% of

families who call Danis Pediatrics home are living in poverty. The funds raised at Glennon Gallop ensure all the needs of Danis Pediatrics families are met, from high-quality care in a comfortable space to assistance with basic needs, such as food and diapers.

Guests in the VIP tent enjoyed wines by Bommarito Wine and Spirits, a lunch buffet by LaChef Catering and an exciting live auction followed by a fast-paced polo match.

Field-Side Party guests enjoyed yard games and tried their luck at the cooler of booze and bourbon raffles before taking in the polo match. The Moss Family (grateful patient family) attended to serve as judges for the Tailgating Contest.

P R E S E N T E D BY:

T. Danis Charitable Trust

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Grant and Sebastian Moss are identical twin boys. Born in 2013, the boys seemed perfectly healthy

Danis Pediatrics kids Grant and Sebastian Moss, along with their mother Amber, served as the judges for best tailgate at Glennon Gallop’s Field-Side Party

at first, but that quickly changed.

Doctors suspected a genetic cause at the root of their symptoms, so they were quickly transferred to SSM Health Cardinal Glennon because of the genetic specialists there. They were eventually

diagnosed with Propionic Acidemia: an inherited, rare metabolic disorder characterized by the lack of enzyme involved in the breakdown of amino acids (the building blocks of proteins). Their mom, Amber Moss, refers to SSM Health Cardinal Glennon as her “home away from home” as they must visit monthly and utilize a plethora of specialties for care. Five prizes were awarded by the family who thanked guests as they visited each tailgate.

Special thanks to our Presenting Sponsor – T. Danis Charitable Trust; Barrel Sponsors – Drury Hotels, Fabick Cat, Fogarty Services, Inc.,

Hubbard Radio and the St. Louis Post Dispatch; along with our Imperial Sponsor – Bommarito Wine and Spirits.

Thanks to all who joined us on this special day to celebrate the mission of The Danis Pediatric Center!

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1 Karla and Eddie Sutton (right) enjoy Retail Row 2 Billy and Christi Busch and Family 3 Field-Side Party Best Tailgate 4 Molly and Doug Sansone 5 Tim and Jackie Danis 6 Cindy and Tim Drury 7 Bill and DeAnn Gueck 8 Monique and Galen Bingham

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Michael Anderson is a local artist working in traditional and digital mediums, an avid sketcher with several sketchbooks going at once and a plein air (outdoor) enthusiast. He joined Glennon Gallop for the first time this year, painting ‘Right Of Way’ live as an auction item while sharing his talent, passion and stories with guests.

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A Stimulating Solution to Abdominal Pain On the trails near her home in Leawood, Kan., 17-year-old Morgan Swarts runs six to ten miles a day, six days a week. The senior from Blue Valley West High School also is competing in cross country track meets for her school this year.

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organ is able to return to running after almost a year off the track thanks to a specialized neurostimulation device that cured her severe, chronic abdominal pain associated with irritable bowel syndrome (IBS); it is only available regionally at SSM Health Cardinal Glennon Children’s Hospital in St. Louis.

“It’s been amazing,” says Morgan. “Last December, I could barely walk during a run because the pain was so intense. But the first week after I came to Cardinal Glennon, I was able to go home and run again.”

For Morgan and her mother, the eight-hour round trip to St. Louis was worth their time to explore a non-drug alternative to treating Morgan’s chronic abdominal pain.

Morgan had been in and out of her local hospital emergency department and had tried medications and diet modifications to alleviate the pain. Nothing worked.

“The doctors here checked her from top to bottom and finally said it might be a form of nerve pain,” recalls Lisa Swarts, Morgan’s mother. “We were told to go to Cardinal Glennon to see if neurostimulation might help.”

In young patients with IBS, research studies have found there is a mix-up of nerve signals from the brain to the gut in some patients, which leads to over-activation in

Top: Morgan (far right) with her brother, Nicholas (far left), and parents, Lisa and Doug Swarts.

Above: Morgan trains with her cross country coach Mallory Huseman at Blue Valley West High School in Overland Park, Kan.

the amygdala, the portion of the brain that controls pain. The mix-up can lead to bouts of severe, chronic abdominal pain that is not associated with other medical conditions and does not respond to standard medications.

condition, which translates into hundreds of kids that we see each year.”

For many children, changes in diet, such as the elimination of dairy or carbohydrates, can help reduce the pain. For others, prescription medications (antispasmodics),

“...30–40% of our patients have this condition, which translates into hundreds of kids that we see each year.”

Morgan Swarts with her first IB-Stim™ device in place

“Functional abdominal pain and IBS actually is very common in children and adolescents,” says SLUCare Physician Group pediatric gastroenterologist and motility disorders expert Dhiren Patel, MD, medical director of SSM Health Cardinal Glennon’s comprehensive Neurogastroenterology and Motility Center. “In our outpatient clinics, 30–40% of our patients have this

probiotics, fiber and/or laxatives can help. In mid-2019, the US Food and Drug Administration (FDA) approved a new treatment option — a nerve-stimulating device called IB-Stim™, the first non-surgical, non-drug device for the treatment of functional abdominal pain associated with IBS. It is approved for use in children ages 11 to 18.

glennon.org Fall/Winter 2021 • 23

A STIMULATING SOLUTION TO ABDOMINAL PAIN HOW IT WORKS IB-Stim™ looks like a hearing aid. It is an electrical nervestimulating device that children wear behind one ear. The device emits painless, low-frequency electrical impulses into the nerves behind the ear that are involved in the brain–gut nerve pathway. Over time, the treatment modulates the nerve signals, reducing or eliminating abdominal pain.

“Our patients wear the device for 24 hours a day for five days and then remove it,” explains Dr. Patel.

“They then come back to the clinic the following week and have a new neurostimulator placed and repeat the process for up to four weeks.”

Results have been nothing short of dramatic for the overwhelming number of children treated since SSM Health Cardinal Glennon began offering the procedure in 2020.

Patients now come to the clinic from Missouri, Illinois, Kansas and Iowa. In addition to eliminating or significantly reducing bouts of abdominal pain, the procedure is credited with enabling children to resume school and other activities and improving the quality of their lives.

Emma Peper, 18, was the hospital’s first IB-Stim™ patient. She had dealt with symptoms related to IBS for years. When she turned 16, however, the symptoms got worse.

Dr. Dhiren Patel and gastroenterology nurse navigator Jennifer Kvale, MSN, RN, with Emma Peper

“I had really bad stomachaches to the point I could not move, and I’d curl up into a fetal position for a long time,” she says. “We’d go to doctors and the hospital emergency department in our area, but no one could find the reason why it was happening.”

stopped crewing for hot air balloons and withdrew from archery competitions. “I used to be so active, but I couldn’t do anything, not even get a job, because the pain was random and so intense. It could last anywhere from 15 minutes to several hours. Some of

“I had really bad stomachaches to the point I could not move...”

Emma tried food elimination diets and pain medications, but nothing worked. Last year, the teen from Walnut Hill, Ill., stopped participating in local theater events, gave up singing at her church,

the doctors told me it may be something I’d just have to live with for the rest of my life.”

Her mother, Mary Ellen Peper, refused to give up and was finally told that Emma may have a neurogastroenterology issue. In June 2020, she brought her daughter to Cardinal Glennon Children’s Hospital, just when SSM Health Cardinal Glennon Children’s Foundation purchased the first IB-Stim™ devices through generous contributions from donors. Innovative Health Solutions, the manufacturer of the device, also contributed funds to start the program.

Says Peper, “This one simple thing made such a difference, and I can’t tell you how grateful we are that we were able to be helped Emma Peper and her mother, Mary Ellen

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because of the donors that made it all possible and the doctors and staff who understood and were skilled at finding a real treatment for Emma’s pain.”

In fact, Emma’s pain went away from day one. “It gave me my life back,” Emma says with a laugh. “I’m singing at church and doing theater again and I have a job now. I also have plans to compete nationally in archery, so I’m excited!”

Pain-free for more than a year, Emma is now in college, with plans to study nursing. Near Kansas City, Morgan is so interested in how neurostimulation works that she’s talking about majoring in neuroscience when she heads to college next year. “I did a research project for my science class about it,” she says. “It not only helped with my abdominal pain, it also helped with my migraines. It makes me wonder what else it can be used for!”

Dr. Patel agrees. “We already know this works, relieves pain and improves quality of life,” he says.

“We do think that neurostimulation can be used for broader applications than just IBS because some of the neuronal pathways are similar with other diseases. Chronic pain conditions, migraines and cyclic vomiting syndrome may be next on the horizon to see if this type of non-drug therapy works.”

Thanks to YOU!

Dr. Patel fits Emma with her first IB-Stim™ device

With continued support, Dr. Patel plans to expand the volume of patients that can be seen in the Neurogastroenterology and Motility Center. He and his team also work hard to obtain insurance approval to cover the cost of the devices, which average $800– $1,000 each and cannot be re-used.

Each patient needs up to four devices. Dr. Patel notes that more research needs to be done on long-term outcomes as well.

Success varies from months of pain relief to more than a year, like with Emma.

“I truly get goosebumps every time I talk about this,” says Peper.

“Just look at my daughter. She’s able to go to college and have fun again after years of being in pain.

Because of everything that Dr. Patel and his team did, she’s able to live life. It’s just wonderful!”

Thanks to generous donors to the SSM Health Cardinal Glennon Children’s Foundation, we can bring several innovative treatment options to children. Just within the Division of Gastroenterology and Hepatology, donations have helped fund equipment and services for several programs, including: • Neurogastroenterology and Motility Center •G lennon Intestinal Rehabilitation and Feeding (GIRAF) Program • Childhood Nutrition Center • I nflammatory Bowel Disease (IBD) Center Your contributions also have supported various research efforts that have improved patient care for gastrointestinal diseases and disorders. Continued support will enable the expansion of time and resources for IB-Stim™ and other services. We appreciate your help in advancing the best care for children!

Emma Peper takes steady aim while practicing for an upcoming archery competition Avatar

glennon.org Fall/Winter 2021 • 25

GLENNON GOLF CLASSIC 2021

Martha and Bill Hawn, Cardinal Glennon Children’s Hospital president Steven Burghart, SSM Health Regional president Jeremy Fotheringham

Glennon Golf Classic Benefiting the Music Therapy Program

T

he Columbia Golf Club is nestled into the tall bluffs on the Illinois side of the Mississippi River, within sight of the St. Louis skyline and the clear blue skies stretching far to the west. On one day each year, the tree-lined, rolling course welcomes some of the area’s sports celebrities and other friends of SSM Health Cardinal Glennon Children’s Hospital.

This year’s Glennon Golf Classic was the 38th annual running of the event and the 20th hosted by the club’s current owners, Bill and Martha Hawn, who acquired the course in 2001.

The Glennon Classic has raised $1.75 million for SSM Health Cardinal Glennon under the Hawns’ hospitality.

“The tournament was ongoing when we purchased the course and we elected to continue the tradition,” Bill says. “Cardinal Glennon is a great hospital and a great cause. It is all about giving back. We have been blessed and this is one of the ways we can help.”

“We have had a couple of family members whose kids have been very sick and cared for at Cardinal Glennon,” Martha adds.

“The experiences we had there were incredible. The outcomes have been positive. The professionalism was second to none.

“We experienced that firsthand. We know what we’re giving back to. There is no better hospital than Cardinal Glennon.”

When the Hawns acquired the 18-hole Columbia Golf Club,

26 • SSM Health Cardinal Glennon Children’s Foundation

which opened in 1968, the package included the nearby nine-hole Bridges Golf Course. They bought additional land and added another nine holes there.

Most of the clubs’ golfers come from the Missouri side of the river. “There are not a lot of public courses left on the Missouri side,” Bill says.

While Bill was a golfer when the Hawns bought the courses, Martha was not.

“But I know what a great experience it is,” she says. “It is a spiritual experience when you are walking on a golf course. It is quiet and you are in tune with nature.”

The event and hospital have been supported by friends of the hospital and some of the city’s sports stars.

“We have had some of the St. Louis Blues hockey players and other sports celebrities,” Bill says.

“They are just like regular people.

They are there for the kids and Cardinal Glennon.”

Also visiting on Golf Classic day were the hospital’s music therapists.

“Our contribution is directed to music therapy at the hospital,” Martha says. “We are thrilled about that.”

Music therapy has been shown to reduce stress and anxiety, alleviate pain, promote relaxation and build self-esteem. The music therapists share the healing power of music with all of the hospital’s patients.

“Music is a universal experience

P R E SE N T ED BY:

and has a positive healing impact where medicine cannot reach,” Martha says. “You can’t separate the mind from the body. It is important to the whole healing process.”

Some Glennon patients visit the golfers, too.

“Having them there adds to the experience,” Martha says. “The golfers meet the kids and see what the music therapists do. They get a feel for the program. There is no better focus than Cardinal Glennon.

What they do every day is such an important mission.”

Glennon kid Jimmy — who received a heart transplant in December 2019 — is a world-ranked golfer. He first met many of the repeat Golf Classic golfers last

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year and played with teams for an entire Par 3 this year. Teams gladly made a donation for this special opportunity and advantage.

FabickCAT continued their support as Presenting Sponsor of the tournament for the 38th year in a row. Their consistent involvement is a major contributor to the longevity and success of this annual event. Thanks to generous donors like FabickCAT, a third full-time certified music therapist was hired into the program this year. Because music therapy is not covered by insurance, we rely on the generosity of our sponsors and friends to make this program a reality.

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1A dvantage Capital and Aurora Tech teams 2T he Gori Law Firm, P.C. team 3W itterschein and American Metals Supply Co. teams 4 Glennon kid Jimmy Williams 5M usic therapists Kelli McKee & Kim Iverson; Committee Co-Chairs Pat VanCleave and Ben Albers; Glennon kid Charlotte Bishop

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4

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glennon.org Fall/Winter 2021 • 27

IMPACT Last year, SSM Health Cardinal Glennon child life specialists had more than 23,000 interactions with patients and families.

GROWTH SPURT

Child Life Services Expand to Meet Needs and Foster Resilience

In 2009, Kimberly Eighmey, MA, CCLS, was watching a Discovery Channel documentary about a set of conjoined twins waiting to undergo separation surgery. The documentary featured a child life specialist using medical play to help the girls and their parents process their anxiety about the complex surgery. The specialist sewed together two dolls and separated them to illustrate what the twins would experience.

Eighmey had never heard of a child life specialist before but knew in that moment she wanted to be one.

“A light bulb went off in my head,” says Eighmey. “It was the perfect combination of everything I was looking for in a job — kids, medicine and creativity.”

Child life specialists use therapeutic play and expressive activities to enhance a child’s coping skills when dealing with fear, pain, anxiety and separation from family, friends and familiar environments. They empower patients and their families to help promote healing and resilience.

After earning a master’s degree

“The child life specialist was amazing. She took such great care of my 5-year-old and he was not scared to leave us because she was there with him.”

(Mother of a surgery patient)

in child life studies and certification as a child life specialist, Eighmey joined SSM Health Cardinal Glennon Children’s Hospital in 2013. She is manager of Child Life Services and is overseeing a period of robust growth in the department. When she signed on, the department had seven full-time child life specialists.

Today, there are 23 specialists and a host of new programs.

“We have incredible support from hospital leadership, donors and the SSM Health Cardinal Glennon Children’s Foundation,” says Eighmey. “We work very hard to create an environment in the hospital where kids can thrive and families can find

support. We encourage our kids to be the resilient human beings we know they can be, and the St. Louis community has provided funding for our programs to ensure that every child has access to these important resources for coping with their hospital experience.”

BEING YOUR OWN BOSS In the last five years alone, Child Life Services has added three music therapists, a dance/movement therapist, a facility dog program, a respite program and a special events coordinator.

The most recent hire is Briana McKee, MS, ATR, PLPC, an art therapist who works with hematology/oncology patients on inpatient units and in the outpatient The Costas Center. Her position is funded by the Friends of Kids With Cancer (FOKWC) organization.

McKee utilizes art as part of her own self-care to process difficult sessions and make sense of the world around her. In her therapeutic approach, sessions are patient-centered and grounded in meeting children where they are, empowering them to make choices.

“Kids don’t get to make a lot of choices when they come to the hospital,” says McKee. “They don’t get to choose whether to get a needle stick or take yucky medicine.

In an art therapy session, they’re

Child life specialists use therapeutic play and expressive activities to enhance a child’s coping skills when dealing with fear, pain, anxiety and separation from family, friends and familiar environments glennon.org Fall/Winter 2021 • 29

GROWTH SPURT CHILD LIFE SERVICES EXPAND TO MEET NEEDS AND FOSTER RESILIENCE the boss. I empower the kids to use their art as a means of expression and encourage them to speak honestly and openly about how they’re feeling. Even little choices, whether to use markers or paints, can be empowering. It’s amazing how much more confident kids become when you give them some control.”

BREADTH AND DEPTH Nationally, the child life profession began developing in the 1920s with hospital staff and volunteers providing bedside

“Child Life is, wow… I’m not sure there are enough words to describe how life-changing these individuals are. They have done so much for our daughter, her dad and me. Even after we lost her, the things they sent to us will be treasured forever.”

(Mother of a hematology/oncology patient)

“The respite basket gave me something positive to focus on when so much was uncertain about my baby.”

(Mother of a NICU patient) comfort and distraction. At that time, family members often were excluded from pediatric units.

The field began to flourish in the 1960s as health care providers learned more about the special emotional needs of hospitalized children and the importance of family in the healing and coping process. Family participation in the care of children is integral to child life services — a philosophy that became the precursor of family-centered care.

At SSM Health Cardinal Glennon, the Franciscan Sisters of Mary served as the hospital’s first unofficial child life specialists by providing comfort and socialization in a playroom setting. Specially trained staff joined the hospital in the 1980s and programs have been proliferating

Briana McKee, MS, ATR, PLPC, guides two children in The Costas Center in an art therapy session

since. You can find child life specialists on every floor, in every department and in outpatient clinics.

Child life specialists provide advocacy for patients by communicating a child’s individual needs and coping styles to staff and family. Specialists prepare children

“I’m happy for the first time in a very long time.”

(Patient with an eating disorder after participating in breathing exercises and a movement improvisation session) for procedures and hospitalizations by using pictures, books, puppets, realistic medical equipment and

30 • SSM Health Cardinal Glennon Children’s Foundation

medical play to decrease stress and anxiety. They use guided imagery, music, biofeedback and distraction to help manage pain. Specialists also offer sibling support groups.

Examples of growth over the last five years by the SSM Health Cardinal Glennon Child Life team include: • Adding two full-time child life specialists to cover outpatient clinics. Prior to this, outpatient clinics did not have access to child life specialists to help patients cope with potentially stressful procedures.

• Expanding the Journey Beads Program to the NICU, where caregivers celebrate their baby’s milestones by stringing together special, hand-crafted glass beads.

• Adding activities assistants seven days a week to ensure

“We are beyond grateful for Child Life! Our daughter has spent the last nine months — since birth — at Cardinal Glennon, and child life has helped us get through things we never would have imagined.”

(Parent of a NICU patient) patients have the opportunity for normalization and play in a playroom setting.

• Establishing the Respite Care Program, which allows caregivers the opportunity to take a break from their child’s bedside for a night out or to attend an in-hospital event, such as a painting or floral arrangement class.

• Establishing a Diversity, Equity and Inclusion Committee to help diversify toys, movies and events.

• Increasing the number of music therapists, who now cover all inpatient units, including the NICU and mental health patients in the emergency department who are waiting for bed placement — a need especially

“She loves coming here because of you.”

(Mother of a frequently admitted hematology/oncology patient after a dance/movement therapy session)

pronounced during the pandemic.

• Growing the presence of child life specialists in the emergency department from 40 hours a week to as many as 20 hours a day.

OUT AND ABOUT Hannah Byrne, MBA, CCLS, brings the outside world in to help promote positive coping during hospitalization. As the special events coordinator for the Child Life Department, she partners with outside organizations to plan special events for patients and their families.

This has been a challenge during the pandemic with visitor restrictions in place, but the Child Life team gets creative by utilizing technology, such as iPads and three new Ohmni Robots, purchased with support from the SSM Health Cardinal Glennon Children’s Foundation. Patients use the robots to virtually travel outside their rooms, participate in events, engage in distraction and increase

“It’s so nice to be at a hospital that not only cares for your baby but also the parent.”

(Parent of a NICU patient) hospitalization,” says Byrne.

This flexibility and creativity is what makes child life specialists vital members of a child’s care team according to Eighmey. She says team members, whose salaries

“I don’t know what I would do without Kaity [child life specialist]. Most of our patients have anxiety issues, and she works wonders with getting them ready for their procedures.”

(Nurse in the endoscopy department) their social interaction.

The new technology also is used to host special events or visitors, such as local athletes and community partners, including the Contemporary Art Museum St. Louis or Missouri Botanical Garden.

“Community involvement has the biggest impact on our patients, brightening their day and distracting them from the everyday challenges that come with

are supported primarily through donor contributions, adapt their techniques, materials and language to any situation and to the unique personality of each child.

“We never stop thinking about what we can do to help our kids and their families, whether they’re a kid with sickle cell disease who has been coming here his entire life or a kid who just showed up in the emergency room,” she says.

glennon.org Fall/Winter 2021 • 31

Cancer patient Riley LaBarge received a ground-breaking new treatment in one of the clinical trials being conducted at SSM Health Cardinal Glennon Children’s Hospital.

COVER FEATURE

Clinical Research Associates Guide Participation in International Trials 32 • SSM Health Cardinal Glennon Children’s Foundation

“Our progress has been dependent on research.”

“I’m so glad we did it. It is amazing that it is working for her, and it gives other families hope that it could work for them,” says Samantha LaBarge.

Her daughter Riley was 1 year old when she received a groundbreaking, investigational treatment for acute lymphoblastic leukemia. She participated in one of about 75 cancer research trials underway in The Costas Center at SSM Health Cardinal Glennon Children’s Hospital.

“If you go back 50 or 60 years, the survival rates for most childhood cancers were close to zero unless you had an unusual solid tumor that could be surgically removed without a chance of recurrence. Now we have survival rates that are approaching 85 – 90% and for some tumors even higher. That all has come about through clinical research that has allowed us to improve our treatments over time,” says William Ferguson, MD, medical director of The Costas Center.

The center’s staff participates in two international pediatric cancer research groups.

Each trial follows a unique, complex protocol for administering medications and collecting data. The William Ferguson, MD, studies are guided medical director of The by two clinical Costas Center

It is estimated that 15,590 children and adolescents will be diagnosed with cancer in 2021

research associates who are funded through contributions to SSM Health Cardinal Glennon Children’s Foundation.

“Our clinical research associates help us maintain good clinical care for patients and collect the right data and report it correctly,” says Dr. Ferguson, a SLUCare physician who is division director of hematology/oncology and a professor of pediatrics at Saint Louis University School of Medicine.

“We are the gatekeepers,” says Gina Martin, BSN, RN, CCRP, one of

“The protocol is the guidebook that describes the mandatory steps and tests, the purpose of the study and its objectives. As coordinators, we help to make sure everybody on the team is following the protocol,” says Donna Marin, BA, RN, the center’s other clinical research associate.

PEDIATRIC ONCOLOGY “Although childhood cancer is rare, it is the leading cause of death by disease past infancy among children in the United States,” reports the National Cancer

“Although childhood cancer is rare, it is the leading cause of death by disease past infancy among children in the United States...” the clinical research associates. “We screen the patients for available studies. Once they meet all the criteria and have signed informed consent, we enroll them in the study and keep track of the evaluations they should be getting.”

Each study follows a 300- to 500-page document, called a protocol, with background information, flow charts and decision trees.

Institute. “In 2021, it is estimated that 15,590 children and adolescents ages 0 to 19 will be diagnosed with cancer.”

“Pediatric cancer is relatively rare, so we participate in cooperative group trials that allow people from all over the country — and sometimes the world — to pool information so we can make better informed decisions about the best ways to treat these cancers,” Martin says.

glennon.org Fall/Winter 2021 • 33

CLINICAL RESEARCH ASSOCIATES GUIDE PARTICIPATION IN INTERNATIONAL TRIALS BENEFITS FOR THE PATIENT… AND OTHERS

Clinical research associates Gina Martin, BSN, RN, CCRP, and Donna Marin, BA, RN, guide the hospital staff through clinical trials of cancer therapies

SSM Health Cardinal Glennon is a member of the Children’s Oncology Group, the largest organization devoted exclusively to pediatric and adolescent cancer research. It combines the research of 10,000 experts at more than 200 hospitals, universities and cancer centers in North America, Europe, Australia and New Zealand.

The Beat Childhood Cancer Research Consortium links 47 children’s hospitals and universities in the US, Canada and Lebanon.

Dr. Ferguson serves on the consortium’s executive committee.

“Between the two groups, we span the entire spectrum of childhood tumors. Each focuses on slightly different things,” Dr. Ferguson says.

“We have dozens of clinical trials going on at any time, both to improve outcomes but also to

decrease side effects and improve the long-term quality of life for our patients.”

“It is a source of pride and credibility to have these research affiliations,” Marin says. “Not everybody hospital can participate.

These studies are audited for quality on a regular basis by the study sponsors. The groups make sure certain things are done correctly and according to the protocols. You need to have the resources, the labs, the pharmacy and the staff for these trials to work.

“For the hospital, it means we can offer the community treatments that aren’t available at every facility.

Sometimes the next closest place offering a trial we have here may be on the east or west coasts.”

34 • SSM Health Cardinal Glennon Children’s Foundation

About half of the newly diagnosed cancer patients at SSM Health Cardinal Glennon participate in a clinical trial.

“Sometimes it gives them access to investigational drugs that we think are promising but that they wouldn’t be able to access otherwise,” Martin says. “Sometimes they receive additional tests that provide more insight into their disease.”

“Sometimes there are not direct benefits to the child,” Marin continues. “The benefit is to the society at large because the information we collect can be disseminated to other caretakers to assist them in their work with other children.”

Clinical trials may utilize investigational drugs that have yet to be approved for general use, “but the majority of our trials compare two standard treatments. We know each treatment works, but we want to know which one works better,” Martin says. “If the family decides not to participate in the trial, their child will be treated the same way.

We are just not going to be able to collect their information to help other patients in the future.”

The trial protocols extend past the administration of treatments.

“Oncology treatments can have side effects, especially for young kids, that sometimes don’t show up until later,” Martin says. “We want to know how we can reduce the toxicity of their medications. The protocols often have years of follow-up to collect information about long-term side effects.”

PATIENT SAFETY Clinical trials of new drugs, medical devices, vaccines, blood products and gene therapies are required by the US Food and Drug Administration (FDA) before they may be widely used. The FDA regulates trials and requires adherence to principles of good

“We want to know how we can reduce the toxicity of their medications...” clinical practice and protection for human subjects.

Clinical research conducted through The Costas Center also must be approved by the Institutional Review Board of Saint Louis University, which employs the hospital’s physicians, surgeons and some nurses.

Under federal and university guidelines, patients and families must thoroughly understand the ramifications, goals and any risks of the trial before signing an informed consent document.

“The physician will sit with the patient and go over all of the information,” Marin says. “They will answer questions and give families opportunity to review the consent and make sure they understand the risks and benefits of enrolling in a clinical trial.”

“Children who are treated in clinical trials by and large have better outcomes, probably because they have more people paying very close attention to everything that happens to them,” Dr. Ferguson says.

clinical trials by the FDA that is based on chimeric antigen receptor-T cell (CAR-T) technology.

“We now have the first of a series of immunologically-based therapies that utilize the patient’s own immune system and modify it in a way to attack tumors and cancers that otherwise would elude attack,” Dr. Ferguson says.

“CAR-T is a very exciting new technology. We don’t have to look for a donor, we don’t have to worry about donor cells reacting badly the way they might with a bone marrow transplant. CAR-T-based therapies reeducate the immune system in a way that allows it to attack the tumor with less toxicity than chemotherapy, radiation or surgery.”

The Kymriah process begins with the withdrawal of blood from the patient. T cells, part of the natural immune system, are separated and sent to a laboratory. There the T cells are reprogrammed to recognize an antigen on the surface of cancerous B cells, which look similar to normal B cells.

After the patient undergoes a brief course of chemotherapy, the modified cells are re-infused. “I collect the cells and send them off.

They genetically modify them, send them back and we infuse them,” says Cortney McKinney, BSN, RN,

“Children who are treated in clinical trials by and large have better outcomes.”

THE NEXT ERA The Costas Center is one of 71 pediatric oncology facilities participating in a trial of a new technology to treat cancer. Kymriah is the first treatment approved for

blood and marrow transplant coordinator. “When I started working here 18 years ago as a hematology/oncology nurse, we would have thought this was from a science fiction movie.”

During her career, she says, “The advances have come in tiny steps. When I was a new nurse, a lot of the kids got nauseous during their treatments. Now they have less nausea or sometimes no nausea because we have found that reduced dosages of chemotherapy are just as effective and because we have new antiemetic drugs. The science is amazing.”

The CAR-T trial was recommended for Riley LaBarge earlier this year. “The standard chemo wasn’t working for her, and CAR-T was our last hope of a cure

Riley LaBarge and her mother, Samantha

for her,” says her mother, Samantha.

“She received her transplant in April and has been cancer free. She is a normal baby now.”

When the clinical trial was suggested, “I was nervous at first because there hasn’t been a lot of experience with that treatment,” she says. “It obviously has worked for her. It is amazing. It is awesome that now kids have another chance.”

“Our field is so dependent on research,” Dr. Ferguson says. “The research associates are our unsung heroes. If they weren’t making sure we do things the right way and collect the right data, we would not have the progress that we have made.”

glennon.org Fall/Winter 2021 • 35

Hailey,

Glennon kid

GIVE HOPE to a child this Christmas.

N

o child deserves to spend the holidays in the hospital. While most kids are waking up on Christmas morning opening presents in their homes, there are many children in the hospital who won’t be able to open gifts around their tree this year.

Please give the gift of hope and healing to Cardinal Glennon kids this Christmas. Your support will ensure our brave patients can continue to receive the critical care they need during these difficult times. Thank you for making healing possible.

Give at SCAN TO GIVE

treeofhope.org

Hailey, celebrating her transition out of intensive care.

an exclusive concert experience

APRIL 23, 2022 5 pm | Chaifetz Arena For more information visit

glennon.org/LIVE

proceeds benefit:

SCOOPS OF FUN 2021

Scoops of Fun Treats the Hospital Benefiting the Footprints℠ Program

T

he Development Board of SSM Health Cardinal Glennon Children’s Hospital once again brought Scoops of Fun to the hospital this year. Amidst the COVID-19 pandemic in spring 2020, we shifted the event — from all-youcan-eat ice cream and sweet treats at the The Magic House, St. Louis Children’s Museum — to offering a special treat to hospital staff and patients. We expanded the same model this year and offered six treat days to hospital staff and patients with a variety of local, sweet treats.

As planning began for the 2021

event with many unknowns, one thing was certain — the patients and staff at SSM Health Cardinal Glennon need our support.

The Development Board worked with the Child Life team at the hospital and planned six treat days: once a month from April through September. Each month featured different community partners and a sweet treat for patients and staff to enjoy.

The special treat days lift spirits, put smiles on many faces, provide a normal family activity for our patients and treat our

38 • SSM Health Cardinal Glennon Children’s Foundation

frontline staff while also benefiting the Footprints℠ program at the hospital. The Footprints℠ team is dedicated to providing comfort, advocacy and support for children with complex medical issues. As part of our family-centered holistic approach to care, mental health support is available to all family members, whether they are in the hospital setting or at home.

Focus and attention are given to the unique emotional difficulties that arise for parents experiencing life with a child suffering from an advanced serious illness.

Thanks to the generosity of our donors, the Footprints℠ program continues to grow, now serving 290 families each year.

We offer special thanks to our sponsors for providing continued funding for Footprints℠ at SSM Health Cardinal Glennon.

Sponsors include: Prairie Farms, McBride Homes, RubinBrown, UMB

Bank, Martin-Jetco Heating & Air Conditioning, Inc., VSP Construction Services, Acertus, American Metals Supply Co., Inc., Domash DesignSource LLC, Esse Health Pediatrics and Lockton. Sweet treats were provided by Andy’s Frozen Custard, Chick-Fil-A, The Cup, Nothing Bundt Cakes, Prairie Farms and Strange Donuts.

We are also grateful for our Development Board, whose efforts and support continue to change the lives of the families we serve. We’re looking forward to returning to The Magic House in 2022 while still providing sweet treats to patients and staff at the hospital.

Patients and staff enjoy sweet treats at the hospital

glennon.org Fall/Winter 2021 • 39

The Time Is Now Addressing the Impact of Gun Violence

While Jeremiah’s arm shows the visible scar from a gunshot wound, the emotional and psychological toll runs deeper.

Blaring sirens that could be heard for blocks, the ambulance pulled into the emergency department at SSM Health Cardinal Glennon Children’s Hospital late one evening earlier this year. Inside, a child, another victim of an unintentional gunshot wound.

A

s the hospital trauma Dugal vividly team moved into action, recalls when six the sobering reality to the children with gunshot wounds died after doctors and nurses treating her being transported was that this was the second time to the emergency this child had been unintentionally department. Those shot and brought to the emergency happened in a span department. The first time, the of just two-and-achild’s family had been walking half months in the her in a stroller on a neighborhood summer of 2019. street. The second time, a bullet “Our emergency came through the window of her rooms typically are home. She was still under the age filled with children of 2. who have been Around the St. Louis bi-state in motor vehicle region and, indeed, in many accidents or had other cities across the country, bad falls or are gun violence is on the rise at an ill,” he says. “But alarming rate. Last year, gunshot cases are SSM Health Cardinal Glennon saw disproportionally a 54% increase in the number of high lately, and that’s young gunshot victims treated at not going away the hospital. Injuries ranged from anytime soon unless minor wounds to more serious something is done. injuries that required surgery, Even the shutdowns hospital admission and longerrelated to the term care. Of the 111 children who The hospital offers free gun locks to anyone who wants one COVID-19 pandemic were shot in 2020 and rushed and fewer instances to Cardinal Glennon Children’s explains Dugal. “But nurses would of people gathering Hospital, seven died. come back to us and say that together have not resulted in a For those that survive, the reduction in numbers.” families didn’t want the locks if they long-term impact lasts far longer In 2020, there were at least 369 had to give out private information.” than it takes for the wounds to unintentional shootings by children The hospital then eliminated heal; children and their families nationwide, resulting in 142 deaths the paperwork and instead placed have to deal with stress, anxiety, and 242 injuries. the gun locks in buckets and bowls anger or other mental health issues in addition to possible physical inside the emergency department THE GUN LOCK PROGRAM disabilities. At the same time, and in several inpatient and Cardinal Glennon Children’s problems at school and an unsafe outpatient primary care clinics. It Hospital decided that it couldn’t home environment may add to was a way to knock down barriers, just “patch up” children who were the complex world of these young to keep guns safe and out of reach impacted by gun violence; victims. of children. Donations from SSM it needed to do more. Two “We’ve seen a Health Cardinal Glennon Children’s years ago, a large gun lock dramatic rise in the Foundation and funds from the program was started, with number of kids treated hospital’s trauma department have the hospital offering free gun for gunshot wounds kept the program going. locks to anyone who wanted here,” says Joshua While there’s no way to one. At first, families were Dugal, BSN, RN, TNS, reluctant to take one because prove a gun lock in a home EMT-P, manager of paperwork needed to be prevented a tragedy, SSM Health the hospital’s trauma, filled out.

Cardinal Glennon has seen a drop EMS and injury “We were required to ask specifically in the number of children Joshua Dugal, BSN, prevention programs. demographic information, RN, TNS, EMT-P with unintentional gunshot wounds “The vast majority are zip codes and the type of gun treated. Even so, the trauma team not targeted. They are in the wrong or guns in the home as part of and hospital officials knew that more place at the wrong time, and they the initial funding grant we had,” get shot.” needed to be done. glennon.org Fall/Winter 2021 • 41

THE TIME IS NOW ADDRESSING THE IMPACT OF GUN VIOLENCE

Decline in Unintentional Gunshot Wounds Since SSM Health Cardinal Glennon Started a Gun Lock Giveaway Program in 2018

THE NEED FOR HOSPITAL VIOLENCE INTERVENTION PROGRAMS May 10, 2020. Juanita Thompson was expecting a fun family gathering in south St. Louis to celebrate Mother’s Day. Her brother told her to bring her children over for the day. After visiting for a while, she left her two boys there to hang out with family members and returned home to Jennings, Mo. Her brother said he’d bring the kids home soon.

“My phone rang that evening,” Thompson recalls as she shakes her head and remembers. “I could hear my brother screaming in the phone.

He said, ‘Jeremiah’s been shot!’ I could hear someone else calling 9-1-1 and asking for an ambulance. It was horrible.”

Jeremiah, Thompson’s oldest son, was simply sitting on a couch in front of a glass sliding door and scrolling on his phone. Next to him, at the kitchen table, two younger children sat playing.

“We heard gunshots outside of the house while I was sitting there,” says Jeremiah, then age 14. “I felt something and lifted up my shirt and saw blood. I got shot three times and fell on the floor. I couldn’t get back up and had to crawl through the room.”

His eyes suddenly cloud up with frustration as he says it again. “All I was doing was just sitting there. I thought I was going to die.”

Jeremiah was rushed to Cardinal Glennon Children’s Hospital where doctors found that one bullet had gone through his hip, barely missing his spine. Another bullet hit the top part of his shoulder and a third went through his arm and chest, just missing a major artery. He was in the hospital for almost two weeks and underwent lengthy physical therapy to learn how to walk again. More significantly, other issues — anger, anxiety, fatigue, suicidal thoughts — needed to be addressed for Jeremiah to be fully on the road to recovery.

Enter the Life Outside of Violence (LOV) program, a St. Louis-area hospital-based violence intervention program designed to provide individualized therapeutic case management and guidance to get kids moving forward in positive ways after a gunshot or stab wound or if they had been a victim of assault.

LOV is a large-scale, communitywide effort to tackle the rising numbers of victims of violence. It’s a collaborative partnership funded by a three-year, $1.6 million grant from the Missouri Foundation for Health

42 • SSM Health Cardinal Glennon Children’s Foundation

that includes two health systems, three universities and the four major adult and pediatric trauma hospitals in St. Louis, including SSM Health Cardinal Glennon.

LOV is one of just a handful of hospital violence intervention programs (HVIPs) across the country that have been formed to deal with the rise in gun violence and to address it as a true public health epidemic. The programs place a licensed clinical social worker at each hospital to connect directly with families and offer resources that get kids and families moving away from the potential for re-injury, retaliation and school or home disruptions. These social workers engage families within hours or days after a shooting, stabbing or assault occurs.

In St. Louis, LOV has five social workers, four of whom are based at the regional trauma hospitals.

At SSM Health Cardinal Glennon, Melik Coffey, MSW, LCSW, is on the frontlines of intervention and

Life Outside of Violence Partners • SSM Health • BJC HealthCare • Saint Louis University • University of Missouri–St. Louis •W ashington University in St. Louis • Barnes-Jewish Hospital • Saint Louis University Hospital •S SM Health Cardinal Glennon Children’s Hospital • St. Louis Children’s Hospital

LOV program social worker Melik Coffey, MSW, LCSW, Glennon patient Jeremiah Thompson and his mother, Juanita, and trauma program manager Joshua Dugal, BSN, RN, TNS, EMT-P

support. He typically sees a family within 24 – 36 hours after they arrive at the hospital, oftentimes meeting in the emergency department.

“Law enforcement may be here, doctors and nurses are everywhere, and families are confused, scared and struggling,” says Coffey. “It’s chaotic and we try to be the stabilizing force in that hub. I check on what they need, build a rapport and start reaching out.”

Coffey offers a calm presence to try to prevent the onset of long-term trauma symptoms. “My first job is to listen,” he says emphatically. “I may have ideas of what they need, but I don’t know them personally. We need to create that relationship from day one.”

LOV is open to any St. Louis City or County resident between the ages of 8 and 24. Families enroll in the program for six months to a year. While some are reluctant to be involved, Coffey works hard to get them to understand the

benefits of the program. “I go to the child’s home, school, even work, if need be, to get an understanding of their needs and how to obtain the necessary resources to thrive,” explains Coffey.

For Jeremiah, that meant advocating at school and figuring out ways for him to complete classwork online amidst a pandemic. It also meant working through physical and emotional issues. This year, with Coffey’s help, Jeremiah got his driver’s license permit. He also now has a job and already is looking at career opportunities as he finishes his last two years of high school.

Thompson says “Jeremiah looks to Melik as kind of an older brother, who just listens and laughs with him and guides him to where he needs to go to have a better life. He’s been such an amazing influence and friend to our family.”

THE FUTURE OF LOV The challenge now is to maintain and grow the LOV program. The regional partners are trying to find more funding because the Missouri Foundation for Health grant runs out at the end of 2021. Dugal also wants to see the program expand resources to help children in Illinois, because many of the children seen at SSM Health Cardinal Glennon come from across the river.

Says Dugal, “Sustainability is needed because this type of program should be a part of every trauma center. We are advocating for this not only here but nationwide.”

“I’m grateful that families allow me to be part of their journey,” adds Coffey, “but the ideal is to create a full continuum of resources that includes prevention, intervention and community-based support for the long haul.

“It can be done if we all work together to break this cycle.” glennon.org Fall/Winter 2021 • 43

SUN RUN 2021

Watch the Program

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

O

ver the weekend of October 10, the community got moving in support of SSM Health Cardinal Glennon Children’s Hospital for the fifth annual Sun Run. In response to the COVID-19 pandemic, this year’s event was held virtually, but the energy was still abundant to fundraise for children and families in need.

Proceeds from the Sun Run benefit the Children’s Fund at SSM Health Cardinal Glennon. This unrestricted support allows us to invest in new or enhanced programs, update our facilities, create childfriendly and family-centered spaces and so much more. Over the years, unrestricted support has helped launch or expand such programs as STARS, Healthy First Weight Management program, Footprints℠ and Child Life. It has helped us purchase innovative technology, such as ROSA robot, and updated

GIRAFFE beds for our NICU. Most importantly, it has helped us continue to be there for all families throughout the COVID-19 pandemic.

New additions for Sun Run 2021 included additional fundraising incentives and “Captains’ Club” recognition for team captains who took fundraising to new heights.

Not being able to gather wasn’t a hindrance for many of our individual participants and teams that have excitement around this event and its purpose each year. The morning began with a special virtual program to celebrate the season of Sun Run fundraising, which started in June. The program featured a message from hospital president, Steven Burghart, and several team captains shared how they chose to “move” for Sun Run and what the event means to them. The program concluded with an impactful video illustrating the power of participant support for the hospital, which

44 • SSM Health Cardinal Glennon Children’s Foundation

served as both a celebration of funds raised and a motivation for others to join in the fun! From yoga to running to hula-hooping, participants moved in all kinds of ways for Glennon kids! Thanks to our race partner, Fleet Feet St. Louis, true runners were still able to compete by recording their own 5K time and uploading it to the virtual Sun Run race page.

Many participants proudly wore their new Sun Run shirt and sunglasses during race weekend, also thanks to Fleet Feet St. Louis, who served as our fulfillment partner.

Fleet Feet handled the delivery of thousands of swag shipments to participants from all over the country — and even the world!

A special thank you to all our team captains whose leadership ensured this year’s event was a huge success for SSM Health Cardinal Glennon Children’s Foundation! Their hard work

allowed us to surpass all our goals despite the uncertainty faced by our community.

The 2021 Sun Run was presented

by Walgreens, and we’d like to say thank you to all the sponsors who helped make this year’s event a success: Hope Sponsors SM Wilson

and Company and Title Partners Agency, LLC; Care Sponsors McBride and Son Management Co. and US Foods; Inspire Sponsors Circa Properties - Clayton, Mark & Marga Fronmuller, HireLevel, Enterprise Bank & Trust, Chrissy & Mike Nardini, Northwestern Mutual -

Fairview Heights; and special thanks to iHeart Media and St. Louis Post Dispatch!

Save the date for next year’s Sun Run in-person at Forest Park on October 16, 2022!

P R E S E N T ED BY:

glennon.org Fall/Winter 2021 • 45

People Helping Neurofibromatosis Clinic Honored With Donation From the Missouri Fraternal Order of Eagles

46 • SSM Health Cardinal Glennon Children’s Foundation

People

Mary Massey, president of the Missouri Aerie of the Fraternal Order of Eagles, with her granddaughter, Ariel, a patient of the Neurofibromatosis Clinic at SSM Health Cardinal Glennon

Veronica Stovall, office coordinator; Julie Engel, RN; neurologist Ali Jamal, MD; orthopedic surgeon Elizabeth Engel, MD; ophthalmologist Bradley Davitt, MD; with Mary Massey and her granddaughter Ariel after they presented a generous donation to the Neurofibromatosis Clinic on behalf of the Missouri Fraternal Order of Eagles

Mary Massey laughs as she hugs her granddaughter, Ariel, and thinks back on the many activities around the state held by the Missouri Fraternal Order of Eagles (FOE) to raise funds for the Neurofibromatosis Clinic at SSM Health Cardinal Glennon Children’s Hospital.

“One of our FOE chapters had a big bass tournament last year and said they would raise $7,000 for the

clinic if I’d come and kiss a large bass,” she says with a smile. “Yeah, I did that because it was for a great cause!”

The Fraternal Order of Eagles is an international organization dedicated to “people helping people.” Its members promote peace and hope and hold annual charity events across the country, giving 100 percent of monies raised to local organizations, particularly to health care initiatives.

As the 2020–2021 president of the Missouri Aerie of the Fraternal Order of Eagles, Massey was able to select which organization would receive the annual fundraising donations during her tenure.

She was passionate about the Neurofibromatosis (NF) Clinic at SSM Health Cardinal Glennon because she also had a personal connection.

“My granddaughter Ariel was diagnosed with NF when she was just 7 months old,” said Massey, who not only is Ariel’s grandmother glennon.org Fall/Winter 2021 • 47

PEOPLE HELPING PEOPLE NEUROFIBROMATOSIS CLINIC but now her mother too, having formally adopted Ariel after Massey’s daughter passed away.

“The program at Cardinal Glennon Children’s Hospital is simply one of a kind. I wanted more people to be aware of it while also helping to raise funds to support its services.”

Neurofibromatosis is a genetic disorder that affects how nerve cells grow and form. In its earliest stages, it can cause multiple light brown (café au lait) spots on the body within the first months or years of life. More serious symptoms include non-cancerous tumors anywhere along the nervous system, including the brain, spinal cord and nerves. It also can lead to bone deformities, vision or hearing problems, skin tumors and learning disabilities. Most often, it is due to an inherited condition, but it can occur in children without a family history of the disorder.

SSM Health Cardinal Glennon’s clinic is Missouri’s only pediatric NF multispecialty clinic. “We not

NF Clinic patient Ariel

only see patients from Missouri, but also from surrounding states, including Kentucky, Indiana, Illinois, Kansas, Tennessee and Arkansas,” says SLUCare neurologist Ali Jamal, MD, medical director of the clinic. “Our uniqueness lies in our ability to provide comprehensive, multidisciplinary treatment in one clinic visit. Our team includes neurology, ophthalmology,

orthopedics, neurooncology, audiology and genetics. In certain cases, we also bring in plastic surgery, neurosurgery, cardiothoracic surgery or specialists in ear, nose and throat procedures.

By offering all of this under one roof, we can prevent multiple visits to a wide variety of specialists while also enhancing SLUcare neurologist and medical director of the NF clinic, the experience for Ali Jamal, MD, examines Ariel patients and their reading, and I love to play the game families.”

Minecraft.”

Now 11 years old, Ariel has Massey is grateful that FOE been a consistent presence at members across Missouri rallied the hospital, having undergone a around her desire to support the NF procedure to reduce excess fluid in Clinic. “It was amazing,” she recalls. her brain due to a condition caused “There were golf tournaments, by a benign brain tumor. She sees 50/50 raffles, tie-dye shirts and SLUCare orthopedic surgeon cooler cups that we sold, chili Elizabeth Engel, MD, to monitor suppers, horseshoe tournaments some bone problems that impact and fishing tournaments. I would Ariel’s ability to walk well. For the travel to each one and tell them past 14 months, Ariel has also been about NF and the great things receiving chemotherapy to reduce that were being done at the size of a tumor impacting one Cardinal Glennon Children’s of her optic nerves.

Hospital to help children. It was just “Up to 20 percent of children awesome to see all of the support.” diagnosed with NF will have an All totaled, the Missouri FOE optic pathway glioma,” explains raised more than $66,000, which SLUCare ophthalmologist Bradley they presented to the NF Clinic Davitt, MD. “In Ariel’s case, she at the FOE State Convention in sees very little out of her left eye Sullivan, Mo. Massey and Ariel because of her optic nerve tumor. then attended a special check Our goal is to make sure the tumor presentation at the hospital. “My does not go on to impact the other theme for our fundraiser was ‘Dare eye.” to Dream,’” says Massey. “I had The clinic, which has been in hoped we could raise lots of money, operation for decades, sees more but I was so overwhelmed with than 500 children diagnosed the amount that was collected with NF. Ariel has been under the for the hospital in small and large clinic’s care for 10 years. She says communities throughout the state.” neurofibromatosis is “a big word for “It’s amazing to see what she’s a small part of who I am.” Despite done for us,” says Dr. Jamal. “The some learning disabilities, Massey FOE is all about people helping says Ariel, now in fifth grade, is a people, and that’s what Mrs. Massey constant ball of energy. and the FOE have done for us so “I like to ride my bike and that we can better care for the play with my dog, Peanut,” Ariel says. “I’m good at spelling and children we see.”

48 • SSM Health Cardinal Glennon Children’s Foundation

Once again, you inspired us.

Let us celebrate you.

Thank you to our annual donors making a difference every day, every year — full circle. Scan this code to learn more and see our list of Glennon Circle members.

Committed to what matters. Devoted to more.

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

DIERDORF–PRONGER GOLF CLASSIC 2021

Dierdorf–Pronger Golf Classic Benefiting The Dan Dierdorf Emergency and Trauma Center

T

he Dierdorf-Pronger Golf Classic celebrated its 36th year and continues to benefit the Dan Dierdorf Emergency and Trauma Center at SSM Health Cardinal Glennon Children’s Hospital. NFL Hall of Famer Dan Dierdorf and NHL Hall of Famer Chris Pronger team up to host this tournament every year.

The tournament took place at Boone Valley Golf Club in Augusta, Mo., as a five-player team scramble.

Prizes were given to the top two teams overall in addition to several special hole contests including Closest to the Pins, Longest Drive and even a Shortest Drive prize!

During their round of golf, participants were able to support the emergency department through an on-course raffle. Golfers also had the opportunity to meet some of our emergency department staff, who were there to show their

gratitude and appreciation for the continued support.

We were honored this year to have a few special guests, including Jimmy Williams, Glennon kid and world-ranked golfer, who returned to share the hospital’s Mission and provide each team with their drive on Hole No. 9.

Following golf, Pronger and Dierdorf entertained the crowd with back-and-forth banter during the live auction and awards presentation. Dierdorf then surprised Pronger by recognizing him for his 10 — well, now 11 — years teaming up to host the tournament.

Infants and children come to the Dan Dierdorf Emergency and Trauma Center from all over the region. As a Level I Pediatric Trauma Center, we are one of the busiest emergency rooms in the city and can handle any type of emergency, day or night.

50 • SSM Health Cardinal Glennon Children’s Foundation

The Dan Dierdorf Emergency and Trauma Center at SSM Health Cardinal Glennon houses four large trauma bays, each containing a full complement of equipment necessary to assist caregivers in the event of a trauma. For ease of access to all staff, this equipment is held in one unit that includes monitors, defibrillators, oxygen and suction, and also manages cords so the floor stays clear. The current units were purchased in 2003 and are in need of upgrades; proceeds from the tournament will provide crucial support for such upgrades.

Thanks to everyone who generously supports this one-of-akind tournament each year. We look forward to seeing you in 2022!

PR ESEN TED BY:

1

2

3

4

6

8

5

7

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1 Albrecht team 2 UMB Bank team 3 Tom McMillin’s team 4 Jimmy Williams with Dan Dierdorf 5 Fabick team 6 Jimmy Williams with Chris Pronger’s team 7 First Place team from Alberici 8 Stifel team 9 Crescent Capital team

glennon.org Fall/Winter 2021 • 51

GLENNON AMBASSADORS

Glennon Ambassadors are parents or patient families of SSM Health Cardinal Glennon who connect, share and make a difference.

Glennon Ambassadors

A

“Glennon Ambassador” is someone with a connection to the hospital who helps us share our Mission. Most ambassadors are SSM Health Cardinal Glennon Children’s Hospital parents, caregivers, patients or staff.

As an extension of their clinical relationship, many of these treasured individuals find value and purpose in saying “yes” to opportunities that can support the hospital. Grateful patient coordinator Laura Wulf says, “Caregivers and families are an incredible asset to us. They are

our best storytellers because they live, eat and breathe our hospital life every day. Their stories showcase who we are and what we aim to be.”

Wulf, a former SSM Health Cardinal Glennon oncology nurse and Glennon mom herself, considers it a privilege to discover these caregivers and offers these ambassadors another purpose to their journey. “Some families and staff spend a short, yet impactful amount of time here, and some have spent a lifetime here. It’s an honor to find opportunities that

52 • SSM Health Cardinal Glennon Children’s Foundation

give their stories legs and allow us to connect more deeply with our supporters. From story sharing to serving on a hospital committee, to writing thank you notes, to speaking opportunities, to volunteering… any number of things,” says Wulf. “There is always a way to connect the dots.

We are blessed to have families and staff that are willing to share of themselves. They are our best tools to effectively communicate the impact of donor support, and what exceptional care looks and feels like,” says Wulf.

Meet some Glennon Ambassadors who are making a difference: Sara Ward Following a 33-week ultrasound in August 2018, expectant mom Sara Ward was sent to SSM Health Cardinal Glennon for a fetal MRI. The MRI showed an extremely rare series of congenital birth defects called Pentalogy of Cantrell. She was followed closely by our team at the SSM Health Cardinal Glennon St. Louis Fetal Care Institute and met several of our pediatric subspecialists in the weeks before delivery. After baby Lily was born, she faced some feeding issues, requiring a nasogastric (NG) tube, and some breathing challenges caused by fluid build-up around her lungs. Following discharge from the NICU, Lily saw a dietitian and occupational therapist weekly and made monthly visits to the Dallas Heart Center for checkups.

In the months to follow, Lily had open-heart surgery, and one more surgery to repair her congenital diaphragmatic hernia and omphalocele.

Today, Lily is thriving. She is walking, playing with toys and loves giving hugs and kisses. She is getting more and more mischievous with her older sister and is always on the move and into everything.

Lily had her feeding tube removed and her favorite foods are mac and cheese, scrambled eggs and provel cheese (definitely a St. Louis girl!)

Her parents, Sara and Tony, are

Sara Ward with Lily

so thankful that Lily has turned a corner and is really thriving right now!

Sara hopes her experiences with Lily and with SSM Health Cardinal Glennon can be a resource for other parents and for the hospital at large. She has shared their journey for multiple hospital campaigns and events, and currently enjoys serving on the hospital’s Patient Family Advisory Council (PFAC).

Sara is spearheading an effort within the PFAC to launch a new parent mentor program. “The main objective of the parent mentor program is to offer the opportunity for families at SSM Health Cardinal Glennon Children’s Hospital to receive emotional support and encouragement from parents who have had like diagnoses and circumstances. The program will consist of a network of trained parent volunteers who mentor other parents through the challenges of their child’s health condition. We are in the beginning planning stages right now. The steering team will pilot the program in one specialty area for 2022, and expand to additional service areas from there,” Ward says.

Shamika Johnson In 2018, Shamika and her daughter, Sariah, were involved in a devastating motor vehicle accident. Sariah sustained two spinal cord injuries that would leave the aspiring ballerina and once-healthy child paralyzed from the shoulders down and unable to breathe on her own. Sariah underwent surgery to stabilize her spinal cord injuries. She also received a tracheostomy and had a gastrostomy tube (G-Tube) placed for some of her nutritional needs and medications. After almost six

Shamika Johnson with Enrique and Sariah

months of rehabilitation at Ranken Jordan Pediatric Bridge Hospital, Sariah was able to go home. She remains dependent on mechanical ventilation for breathing 24 hours a day. She requires assistance for bathing, feeding, dressing and mobilizing. Sariah is at constant risk for blood, lung and urine infections, pressure ulcers and more. Ongoing, Sariah has appointments four to five times a month with a variety of subspecialists at SSM Health Cardinal Glennon, and Shamika finds support in coordinating all of that with the help of the Complex Care Team.

Sariah is currently 8 years old and a second grader.

Shamika functions as her school paraprofessional, full-time caregiver and mom. “Sariah is intelligent, and she cares for others very deeply, especially me… her mother. My focus right now is to make sure Sariah lives her best life while being able to be as ‘normal’ as possible.

My goal is to make sure that her wheelchair doesn’t limit her. I also want to make sure she gets the mental and emotional support that she needs,” Johnson says.

Ironically, Shamika was a Glennon kid most of her life. Born weighing 2 pounds 6 ounces, she spent the first several weeks of her life in the NICU. A chronic diagnosis of asthma kept Shamika connected glennon.org Fall/Winter 2021 • 53

with SSM Health Cardinal Glennon her entire childhood. Those years of care fostered the faith and trust she had to rely on at the time of her accident. “I would never want to be anywhere else with Sariah. Glennon is an extension of my family. The people are patient, responsible, helpful and advocates. A lot of why I’m alive and why my daughter is alive is because of them,” says Johnson. Shamika shared their journey for this year’s Glennon Sunday campaign and hopes other families find hope through their story. “There’s PTSD for both of us, remorse about the past, feelings of isolation because it’s difficult for others to understand our ‘life,’ anxiety about the future and so much more,” Johnson says. “I look to God for my wholeness and hope, and I have to be open-minded about how our problems can be blessings. Maybe sharing our story can be a blessing for someone else.

I pray every day for Him to keep filling us with positivity and vision.”

Erica Stearns Erica Jolene Stearns was born with non-isolated esophageal atresia and tracheoesophageal fistula. She was mute until the age of 3, G-Tube dependent until the age of 5 and tracheostomy dependent until the age of 15.

Throughout her childhood and early adulthood, Erica witnessed her parents face numerous challenges as they confronted many complex medical issues. “Specialists say it is a miracle I can talk, eat and drink on my own.”

Now, Erica and her husband, Randy, are the proud parents of two beautifully bald miracles,

Erica Stearns with Margot and Caratacus

Margot and Caratacus (Cary). As a result of an extremely rare and only recently discovered genetic mutation, lanosterol synthase (LSS), their children have a long list of diagnoses including profound intellectual and physical disabilities, microcephaly, malignant migrating epilepsy and ichthyosis (a group of skin disorders characterized by sometimes painful and dry, scaly, or thickened skin). Margot and Cary are non-verbal, G-Tube dependent, and have cortical visual impairment and cerebral palsy.

The sum of Erica’s life experiences prepared her to be exactly the mother her children needed her to be: a fierce, vocal and experienced advocate for their quality of life. Margot and Cary are “frequent fliers” at Cardinal Glennon Children’s Hospital. Both are considered medically fragile and struggle with respiratory issues that stem from their low muscle tone and inability to swallow safely or cough on their own. While at home, they have what is described as a “mini-hospital” setup, complete with monitors and life-sustaining medical equipment that helps them do things like mechanically produce a cough, eat and maintain healthy oxygen levels. While this

setup helps to provide them with a comfortable and happy life while at home, they do occasionally require interventions only the hospital can provide.

Erica was encouraged by friends and clinicians to use her unique voice to help others. She serves as co-chair of the Patient Family Advisory Council (PFAC) and is a member of the hospital Ethics Committee. She has also started her own podcast called Atypical Truth. Stearns explains, “Atypical Truth is an accessible public space where people like me can honestly explore vulnerable subject matter free of judgment.

We celebrate the smallest victories, revel in new discoveries, discuss the shared obstacles and learn helpful coping strategies from the challenges that others have overcome. It’s important for the disabled and medically complex community to be able to find their people, use their voice and hear stories that mirror their own. I hope my efforts on these committees and my podcast can help to bridge the physical gap between our rare but shared lives.”

Stearns fondly shares that, “all members of the Stearns family feel as though Cardinal Glennon is an extension of their own family and their home away from home.

From the staff representing environmental services, the nurses at the bedside and the physicians calling all the shots, Glennon has a long history of showing our family a level of compassion and respect that has made us feel welcomed, comforted and understood. That is the magic of Cardinal Glennon.”

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 or visit GlennonAmbassadors.org.

54 • SSM Health Cardinal Glennon Children’s Foundation

The ABCs of Safe Sleep:

A

lone

B

C

ack

rib

glennon.org/safetyprogram glennon.org Fall/Winter 2021 • 55

ASK THE EXPERTS Marijuana gummy bears can look and taste almost identical to the gummy bear candies

Ask the Experts: Preventing Accidental

Marijuana Ingestion by Children

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ookies, brownies, chips, chocolates, pizza, ice cream, soda, nuts. These are just some of the marijuana edibles available today — all of which can be confused with regular food, especially by children.

Incidents of children mistakenly ingesting cannabis are increasing, so we asked Julie A. Weber RPh, CSPI, director of the Missouri Poison Center based at SSM Health Cardinal Glennon Children’s Hospital and president of the American Association of Poison Control Centers, about this trend and how to protect children.

Q: How prevalent is the problem of children mistaking a cannabis product for normal food?

Julie A. Weber RPh, CSPI, director of the Missouri Poison Center based at SSM Health Cardinal Glennon Children’s Hospital and president of the American Association of Poison Control Centers

A: We are seeing exposure to edible cannabis products by children growing both nationally and in the metro area. Nationally, between 2016 and 2020, we had 155 cases of exposures to children ages 5 and younger. In 2020 alone, we had 2,473 exposures nationwide. In Missouri, we had just three exposures in 2016 but we had 57 in 2020. Looking at current reports, we expect 2021 cases will easily surpass that.

56 • SSM Health Cardinal Glennon Children’s Foundation

Q: To what do you attribute this dramatic jump?

A: It’s about accessibility of these products in the home and how they look like something to eat. In Missouri, medical marijuana use is legal by adults and in Illinois, both medical and recreational use is legal, so products are in more homes than ever before. Children often get up before parents, they’re hungry, they find things in cabinets and think it’s candy.

For example, a child found a bag of marijuana gummy bears that looked and tasted almost identical to the gummy bear candies. He ate a bag and a half. Another example is a parent who made brownies using THC (the main psychoactive compound in cannabis that produces the high sensation) or CBD (a naturally occurring compound found in cannabis used by some for relief of pain and other

ailments but without the mindaltering effects). The parent didn’t put the brownies in a specially marked container and accidently gave one to their child.

Q: What impact can cannabis ingestion have on a developing brain?

A: Researchers are still exploring what impact this has on children.

I wouldn’t anticipate any injuries with a child or young adult mistakenly eating one or two edibles. But, if those young adults are eating edibles or abusing marijuana on a regular or long-term basis then I think we would have concerns about the impact on their memory and IQ because their brains are still developing.

Q: If a child accidentally ingests a cannabis product, how might a parent know?

A: As parents, we obviously know if our child isn’t acting normally.

A child takes a nap when it’s not naptime and they’ve had a good night’s sleep. The child might be stumbling or off balance. Maybe the child isn’t talking clearly, or their speech is slowed. In worst-case scenarios, a high dose can cause difficulty breathing or seizures.

Fortunately, in Missouri we haven’t seen that frequently. We mostly see confusion, loss of balance, extreme lethargy. The tricky thing is symptoms can be delayed. With edibles it can take one to two hours for the body to absorb the chemical so you likely wouldn’t see an immediate reaction.

waste time and worry by going on the internet to find answers. If you call the center, you’ll speak with a specially trained pharmacist or nurse who can answer any question without judgement. The hotline is confidential. We ask the right questions and talk about symptoms.

We let parents know whether it’s okay to let their children drink or eat or sleep. And we call back — once, twice, maybe more. We want to keep the child at home and out of the emergency department if possible; however, it all depends on the amount and strength of the edible a child has ingested.

Q: What tips do you have for preventing a child from mistakenly consuming a cannabis product?

A: The number one tip is proper storage.

•K eep cannabis products out of reach and out of sight.

•G o even farther by locking them in a box.

•T reat cannabis products like medications you wouldn’t want your children to have.

Q: What steps should you take if you think your child mistakenly consumed a cannabis product?

•R einforce from a young age that your child shouldn’t take medication without permission, and they shouldn’t take anyone else’s medication.

A: Whether you suspect your child has consumed cannabis or have a related question, we recommend you call the Missouri Poison Center. You don’t want to

•H ave developmentally appropriate conversations about cannabis products and why taking them without consent can cause problems.

•E xercise caution when bringing your children into the homes of people who use cannabis products, especially those without children. They may have these products lying on countertops, dressers or desks where your child can get into them.

Q: If parents have other questions about children and cannabis, whom do you suggest they contact?

A: Call the nationwide poison center toll-free hotline at 1-800-222-1222 and you’ll be directed to the poison center in the state where you live. You can get information not just about cannabis edible lookalikes but all kinds of look-alikes.

Windshield wiper fluid, for example, looks just like blue Gatorade or Kool-Aid. It’s staggering the number of products with attractive packaging and contents that can confuse children. It goes beyond medication.

We also encourage parents to go to our website, missouripoisoncenter.org, for information and free educational brochures.

Additionally, they can find information on our Facebook page, facebook.com/ MOPoisonCenter, our Twitter account, @mopoisoncenter, or on our Instagram page, @ mopoisoncenter.

glennon.org Fall/Winter 2021 • 57

GLENNON CARD 2021

S 0%

220%

Glennon Card Glennon Card

SUPPORT

10 DAYS

VE SA AVE

Glennon Card: Shopping Local to Support Local Kids

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ach fall, the Glennon Card program offers the St. Louis community the chance to save big at their favorite local businesses while supporting the patients cared for at SSM Health Cardinal Glennon Children’s Hospital. With the purchase of a $60 Glennon Card, the buyer receives a 20% discount at more than 270 businesses over a 10-day shopping period in October. The shopping program is organized

by SSM Health Cardinal Glennon Children’s Foundation and the Glennon Guild, a 300+ member

P R E S E N T E D BY:

Amy and Eric Holland

women’s organization serving the patients and families at SSM Health Cardinal Glennon.

“This year’s program was a huge success, with many new participating businesses and special events. We had more sponsors than ever before and shaped a strong presence on social media,” says Vicki Mower, Glennon Card co-chair and member of the Glennon Guild.

“It’s incredible to see the community come together to make an impact on the lives of Cardinal Glennon patients,” Mower notes.

Since it began in 2011, the Glennon Card program has raised nearly $2 million, which has gone toward key health initiatives to ensure SSM Health Cardinal Glennon physicians and staff can provide the very best care to every patient who comes through the hospital’s doors.

The funds from this year’s Glennon Card will benefit important hospital programs like The Danis

58 • SSM Health Cardinal Glennon Children’s Foundation

Pediatric Center, which offers outpatient pediatric care to children regardless of their family’s ability to pay. In 2020, the center had a total of 20,225 visits at its two locations at SSM Health Cardinal Glennon and Midtown and many of those visits are by patients that live in our region’s most vulnerable population.

The devoted team of physicians, nurses and social workers at The Danis Pediatric Center are committed to providing exceptional

HOW THE GLENNON CARD WORKS

In early September, purchase a $60 Glennon Card at

GlennonCard.org More than 200,000 children each year are impacted by the programs and services of SSM Health Cardinal Glennon

primary care to children through their developmental years. That commitment extends to also offering specialized services to meet the needs of the patient’s entire family. The Danis Pediatric Center offers a variety of resources

or at a participating card selling retailer

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to help patient families provide the very best care to their children.

These resources help families overcome obstacles like food insecurity, financial hardships, mental health issues and much more. Many of the life-saving

services provided by The Danis Pediatric Center would not be possible without the help of fundraising programs like the Glennon Card.

Thank You 2021 Sponsors, Donors, Restaurants and Businesses Brigette and Tom McMillin Dana and Tim Bacich

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ATTRACTIONS/ ENTERTAINMENT The Magic House, St. Louis Children’s Museum Missouri Botanical Garden Play Street Museum Union Station St. Louis Carousel Union Station St. Louis Mini Golf Union Station St. Louis Wheel

The Pasta House Co. Ladue Peel Wood Fired Pizza Pickles Deli Sisters Sandwich Shoppe StackHouse Pub and Grill Texas de Brazil Trainwreck Saloon Trainwreck West Zia’s on The Hill

The Bedroom Store Bella Chic Home & Gift Bella Gente Salon and Boutique Big River Running Company The Bike Center Birkenstock & More Blown Away Blow Dry Bar Blue Dahlia Designs Brody’s Lamps & Accessories Calihoo RETAILERS & SERVICES Carol House Furniture Abby Keough Custom Creations Cassie’s EATERIES Abigail’s Gift Boutique Cat’s Meow Personalized The Art of Entertaining The Aesthetics Center at Gifts Bartolino’s Osteria Parkcrest Plastic Surgery Celsius Cryotherapy Bartolino’s South Affton Lawn Equipment Checkered Cottage Bissinger’s Handcrafted All About Skin Chesterfield Jewelers Chocolatier The Alley Clothing Co. Christopher’s Home Accents Chocolate Chocolate Alpine Shop Circle of Knowledge Toys Chocolate Company Amelia’s Fine Linens City Sprouts Cleveland-Heath American Institute of Clayton Jewelers Crushed Red Architects (AIA) Clementines’ Boutique Culver’s of Manchester St. Louis Bookstore Closet Factory Cyrano’s Café Arch Apparel Cloth + Style Deer Creek Coffee Arco Lawn Equipment Coach Espresso Yourself Coffee Arhaus Furniture College Hunks Hauling Junk & Café Artmart & MI Box Mobile Storage Favazza’s on the Hill Aurelia Aromatica The Curated Table I Love Juice Bar B Ann’s Boutique Curio Press Rock Hill B. Davis Design daph.

Loaded Elevated Nachos The Back Store David Kodner Personal Maggiano’s Little Italy Baked T’s Jewelers Narwhal’s Crafted The Bar Method – Dominic Michael Salon Nothing Bundt Cakes Brentwood Dotdotdash St. Peters The Bar Method Eileen Fisher Nothing Bundt Cakes Town & Country Town & Country Elephant Spirit

Erker’s Fine Eyewear The Eye Bar Eye Candy Boutique Eye Roc Eyewear Eyewearhaus Fabletics The Flower Petaler Forest & Meadow Herbal Shop and Clinic Forever Tennis Forget Me Not Boutique Genovese Jewelers The Gifted Gardener GIN & KIN Gina Graphics Glenn Betz Jewelers Gold Bee Golden Hour Design Co. The Great Cover-Up The Great Frame Up of Clayton Happy Up Inc. Heels Boutique Identity Salon + Boutique Imagination Toys The Initial Design Ivy Hill Boutique J. McLaughlin J.A. Whitney Gift Boutique JAC Designs Jeans, Jackets & Jewels Joya Ju Ju B’s K. Hall Designs K.Ferrara Color Ken Miesner’s Flower Shoppe

Kendra Scott KIND Soap Company Kirkwood Florist Klutch Boutique Koho Boutique Ladue Pharmacy Lalo Salon Lass & Laddie Laurie Solet Laurie’s Shoes Lilly Pulitzer Little Lemon Candles Lusso Lux and Nyx Madewell Mark Anthony’s Gifts & Spa Marketplace at The Abbey Marmi Marta’s Boutique Mary Tuttle’s Flowers Michelle’s Mildred Dot. Millbrook Pharmacy Minerva’s Mark Mister Guy Men’s Store Mister Guy Women’s Store MOD ON TREND Moonbeams MOss Boutique mud + rose Mueller Furniture & Mattress - Ellisville Mueller Furniture & Mattress - Lake St. Louis My Hygge Jacket Namaste Yoga Studio Never Enough Boutique

NewSpace Home Organization The Normal Brand Olive Tree Marketplace Olympic T Shirts Orangetheory Fitness Chesterfield Orangetheory Fitness Ladue Paperdolls Boutique Papillon Press Pleated Boutique The Porch in Wildwood Pure Perfection Candles Rachel Roe Art Racketman Rawlings Sporting Goods Relax The Back Roadside Runway Boutique Roaming Druggist ShopRusted Chandelier Saks Fifth Avenue Sallie Home sammysoap Sasha Nicholas Series Six Company The Service Bureau Fine Stationery & Gifts Shana Watkins Photography Shoemaker Books Sign of the Arrow Simply Chic Jewelry Soft Surroundings Sol Sunless Tan Sole Survivor Leather Special Occasions by Paulette & Teddy SPENGA - Des Peres

Splash The Spotted Pig St. Louis Cosmetic Surgery and Medical Spa Stonewater Spa & Salon Story Seven Sweet Boutique Synergi Facial Surgery & MedSpa TERRA There She Goes Three French Hens Thro’s Tommy Bahama Tommy’s Express Car Wash Treats Unleashed tru candle studio TruFusion STL TUMI Two Pink Elephants Unique Boutique Design Urban Candle Company Vera Bradley vineyard vines Vivi Design Studio Vom Fass St. Louis The White Rabbit White Stable Farms Wild Birds Unlimited Chesterfield Wilson Lighting The Woman’s Exchange of St. Louis Woodard Cleaning & Restoration Woody’s Mens Shop YLANG YLANG

glennon.org Fall/Winter 2021 • 59

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EMERITUS BOARD

Members of the Emeritus Board Chair Douglas A. Ries Emeritus Board Members Ronald L. Aylward Patrick D. Barron John M. Bruno Julian L. Carr Jr. James G. Castellano Ralph W. Clermont

Emeritus Board Hosts Fall Gathering

M

embers of the SSM Health Cardinal Glennon Children’s Foundation Emeritus Board gathered on October 14 at the St. Louis Club for wine and hors d’oeuvres.

Made up of retired Board of Governors members, the Emeritus Board hosts

1C hris Clermont, Marge Aylward, Kathy Bruno 2 Ali Allman, Bob McCoole 3 Margaret & Mike Heinz 4 Karen & Ed Hempstead, Sandy Koller 5 Ralph Clermont, Doug Ries

3

1

Richard E. Fister Sr. Donald J. Gunn Jr. Michael H. Heinz Edward T. Hempstead Edward D. Higgins

one business meeting and one social gathering each year. Since there was no gathering last year due to the pandemic, everyone was happy to be together and reconnect over their shared passion for the Mission of the hospital.

Russell H. Isaak Robert F. McCoole Jr. Robert M. Merenda Jerry E. Ritter

2

4

5

glennon.org Fall/Winter 2021 • 61

GLENNON FRIENDS /

TRIBUTE

GLENNON FRIENDS

celebrates the faith, commitments and generosity of our supporters.

TRIBUTE

Jim Froesel

J

im Froesel Debbie Daly is a niece of Mr. was truly an Langenberg, who died in 2020.

American "Jim became a very good friend of success story. After my uncle in the 1960s," she says. graduating from "They were friends until they passed high school he was away. Jim became very close to our hired by an upscale family. My sisters and I were very clothing store little when we met him. I remember chain. He literally he always was dressed so nicely. began by sweeping He was very gentle and warm and floors, then worked diligently while generous." learning the business and rising Mr. Langenberg and Mr. Froesel through the ranks. "loved collecting antiques," Daly "He was just cleaning up and says. "Neither of them had children doing nothing special," says Betty and we became very special to Schott, Mr. Froesel's cousin. "Then them." he started decorating windows and Mr. Froesel and Mrs. Schott got more and more involved and were both the only children in their ended up as vice president." families.

Mr. Froesel passed away on "We were never really close March 29, 2021, at the age of 93. but we kept in touch," Schott He spent most of his career at The says. "Once in a while we went out Libson Shops, a women's clothing together. When my husband was retailer that grew to 29 stores in overseas in the Army, Jim and I Missouri, Illinois and Kentucky. The went out on the Admiral." chain was founded in 1929 and went The SS Admiral was an out of business in excursion boat based 1982. An economic on the Mississippi River recession, high at downtown St. Louis interest rates and the from 1940 to 1978, often emergence of cutfeaturing live music in an rate big box stores enormous dance hall. were blamed for "Jim was a very Libson's demise. good dancer and always Mr. Froesel full of laughter. He was a transferred his lot of fun to be around," experience and Schott says. "He also talents to West had a flair for decorating Port 1, a successful and fashion and took women's fashion advantage of that." store he opened at Oil painting was Mr. Froesel painted portraits West Port Plaza in St. and still lifes Mr. Froesel's passion, Louis County. He later Daly says. "He painted became a partner with long-time portraits and still lifes. He took a lot friend Ed Langenberg in an antique of lessons and had many books on shop in Drake, Mo., a village in the painting. He didn't sell anything, he forested hills south of Hermann. just really enjoyed painting them.

62 • SSM Health Cardinal Glennon Children’s Foundation

Oil painting was Mr. Froesel's passion

He set up a studio in the antique store, which was in a building that had been my grandfather's general store. Some of his paintings are still hanging there. They are beautiful."

While Mr. Froesel was generous to friends and family, he did not discuss his philanthropy.

"I think he gave money to his church," Schott says. "He was faithful to his religion and went to Mass. He had friends who were priests."

SSM Health Cardinal Glennon Children's Foundation was named as a beneficiary in Mr. Froesel's estate plan.

"Most of his family is deceased except for three of his cousins," Daly says. "He loved children.

I think that was his link to Cardinal Glennon. It is a place he thought he could assist."

"Our hospital is so fortunate to have the support from Jim, and his generosity will make a difference in the lives of sick and injured children for years to come," says Sandy Koller, president of SSM Health Cardinal Glennon Children's Foundation.

"Our ability to treat all who come through our doors is only possible with support from our community.

Jim's dedication to our Mission is truly inspiring."

SPOTLIGHT

/ GLENNON FRIENDS

SPOTLIGHT

Supporting Cardinal Glennon's Tradition of Nursing Excellence

P

"

ediatric nurses are special.

Those women and men at Cardinal Glennon are amazing and what Glennon does is pretty special,” says Don Ross, a longtime supporter of the nursing staff at SSM Health Cardinal Glennon Children's Hospital. His wife, Nancy Fedak Ross, experienced that tradition of nursing excellence when she was a nurse at the hospital.

This year the Rosses established the Nancy Fedak Ross Endowment for Nursing Education at SSM Health Cardinal Glennon.

In 2005 they founded the annual Nancy Fedak Ross Nursing Awards to acknowledge excellence and leadership among members of the hospital's staff.

Nancy is a registered nurse who once worked on the hospital's 2 South wing, which then was a burn unit. Her love for children and efforts to support the hospital have continued.

The nursing awards, which her husband named in her honor, recognize the Rookie of the Year, Leader of the Year, Community Service Nurse of the Year, Exceptional Nurse of the Year and Mentor/Educator of the Year.

Nellie Dwyer, RN, BSN, a nurse in the Dan Dierdorf Emergency and Trauma Center at SSM Health Cardinal Glennon, has been honored as Mentor/Educator of the Year.

Her leadership among fellow nurses benefits from the Ross Endowment.

She trains new staff members who come to the emergency department. Some are recent nursing school graduates and others are new to emergency medicine. Her mentorship continues beyond the orientation period.

Each hospital department has such nursing mentors.

Nellie Dwyer, RN, BSN, a nurse in emergency medicine who has been honored as Mentor/Educator of the Year

“I’m an advocate of leading by example," Dwyer says. "I want to live our values of compassion, respect, excellence, stewardship, community.

"I’m assigned to a person for a couple weeks or a couple months, and I always keep in the back of my mind to interact with patients, families, co-workers and the interdisciplinary team reflecting these values and mission. If I’m living the values, I tend to see it in the nurses I train.”

Nurses are the backbone of health care, Dwyer says. “They’re the hand to hold, always making sure to answer your questions.”

The advancement of the nursing profession is a backbone of care at SSM Health Cardinal Glennon, which has achieved Magnet® recognition by the American Nurses Credentialing Center. The Magnet designation is granted to hospitals that demonstrate excellence in nursing and patient care, as well as innovation in professional nursing practice. SSM Health Cardinal

Glennon is one of only 8.28 percent of US hospitals have Magnet status.

The Rosses created the endowment to assist in further advancing nursing excellence at the hospital. "For me, it was a way to recognize Nancy and her commitment to pediatric nursing and her early years at Glennon and how important it is to her,” Ross says.

Nurses “provide the care at the bedside, enact the physician’s orders and help educate the patients on medications they are taking, and caring for themselves.

They are essential in the promotion of health and well-being for patients,” says Michelle Romano, vice president of patient care services and chief nursing officer of SSM Health Cardinal Glennon.

The Ross Endowment “is a true honor,” she says. “The generous donation helps us with our professional development and education as nurses. That’s key to us so we can provide the best care for patients and families.”

glennon.org Fall/Winter 2021 • 63

Why I Give »

This past April our son needed open heart surgery, and We give back because we are the luckiest people in the world to receive the care we did at SSM Health Cardinal Glennon Children’s Hospital — our daughter’s life was saved.

And today she is a vibrant, healthy, 1 1/2-year-old who is ready to conquer the world.

Nicole Doeschot

Laura Baylis

SSM Health Cardinal Glennon Children’s Hospital first captured my heart as a 14-yearold candy striper. Its

every single person we encountered, from his surgeon to the employees in the cafeteria, was a blessing to us during a difficult time. I give because it’s a small way to say thank you and to pay it forward.

Jennifer and Aaron Crummley

Mission to both reveal God’s healing presence and to serve the greater St. Louis community regardless of a patient’s ability to pay have inspired my commitment to giving through the Glennon Guild.

Laura Baylis

Nicole's daughter Jennifer and Aaron's son

64 • SSM Health Cardinal Glennon Children’s Foundation

SPOTLIGHT

/ GLENNON FRIENDS

SPOTLIGHT

Broken Arm Leads to Kindergartener’s First Lesson in Giving

I

n August 2021, the Moss family from Wright City, Mo., was looking forward to their Florida vacation. Parents, Brittany and Jonathan, were making packing lists and itineraries.

Their daughters, Anna (5 years) and Dallis (2 years), were busy being kids, playing and enjoying their summer. On August 1, the

hopeful that could happen and grateful for the possibility.”

Two days before their scheduled vacation and one day before Anna’s follow-up visit, Moss encouraged Anna to use some of her

"She was very proud of her jar and knew that what she had done was going to help other kids like her..." girls were playing on their slide when Anna fell off and began crying. “She fell on her arm, and it immediately started to swell.

We took her to an urgent care the next day and they confirmed it was broken in two places,” says Brittany Moss. “They referred us to SSM Health Cardinal Glennon Pediatrics Specialty Services located in Lake St. Louis to get her casted.”

“Our visit to the office was great,” continues Moss. “Everyone was super friendly, and Anna got her arm casted. I couldn’t help being a little sad about the cast because we had planned to go swimming on vacation. When I mentioned this to the doctor, he said we could possibly switch to a brace right before we left. We were

pre-vacation energy to have a lemonade stand to raise funds Glennon kid Anna promoting her lemonade stand for Cardinal Glennon.

“I have always felt The SSM Health it’s important to Cardinal Glennon Pediatrics teach your kids to give back. This Specialty Services located in Lake was really the first opportunity in St. Louis was able to change Anna Anna’s life to be able to connect from a cast to a brace the day the dots and help her learn that,” before their vacation. “We had a says Moss. wonderful vacation. Anna was able Anna hosted the stand serving to enjoy everything we planned lemonade and homemade cookies and start kindergarten as soon as for just three short hours on we came back,” says Moss. She Tuesday, August 10, and raised adds, “This may seem like such a $300 from a combination of sales simple thing, but it was the first and donations from neighborhood thing that has happened to either residents, family and friends. “She one of our kids. We are so grateful was very proud of her jar and knew for the compassionate care we that what she had done was going received and are happy we could to help other kids like her,” says do something to help others.”

Moss.

glennon.org Fall/Winter 2021 • 65

GLENNON FRIENDS /

SPOTLIGHT

SPOTLIGHT KENDRA SCOTT

The Glennon Set: Jewelry That Gives Back

Glennon kid Riley

O

2021 Glennon Set

ur friends and partners at Kendra Scott invited SSM Health Cardinal Glennon Children’s Hospital patient, Riley, to design a very special set of jewelry called the “Glennon Set.” This year’s set included a gorgeous necklace with an iridescent center stone, dusty blue bracelet and matching earrings. Best of all, a portion of

the proceeds from each item sold goes back to SSM Health Cardinal Glennon Children’s Foundation to support patients just like Riley!

Riley was born with a congenital heart defect. SSM Health Cardinal Glennon Children’s Hospital has been her home for multiple surgeries and recoveries. Riley’s condition required her to have her first open heart surgery when she was 8 months old. On July 4, 2020, Riley was involved in a bicycle accident and bacteria got to her heart through her bloodstream. She returned to Cardinal Glennon Children’s Hospital for an emergency aortic valve replacement and spent three months in the hospital. Today, Riley is doing great and doesn’t let her heart condition stop her from doing the things she loves.

SPOTLIGHT ST. LOUIS BOURBON SOCIETY

St. Louis Bourbon Festival

T

he St. Louis Bourbon Society (SLBS) is a collective space for people to experience bourbon together. Founded in 2016, the SLBS continues to grow as the area’s largest and best source for reviews, industry news, educational articles and recommendations. The SLBS hosts monthly events, meet-ups and tastings in and around the St. Louis area. Their goal is simple: to create “Fellowship in the Spirit.”

It’s not uncommon for SLBS events to have a charitable component to them, and it was a nobrainer that their biggest event yet would include just that. In October 2021, the SLBS hosted the 1st Annual St. Louis Bourbon Festival. It featured over 180 bourbons and whiskeys for guests to taste from 60 different vendors, commemorative tasting glasses, an exclusive silent auction and raffle, live music, a photo booth and much more. The event took place at the Historic Lemp Grand Hall and Lofts. A limited number of VIP tickets were available in addition to general admission. VIPs were granted access to topshelf and hard-to-find bourbon and whiskey samples, 66 • SSM Health Cardinal Glennon Children’s Foundation

Dusty Speakeasy Experience

including a Dusty Speakeasy experience featuring six impossible-to-find samples.

Proceeds from the silent auction and raffle benefited SSM Health Cardinal Glennon Children’s Hospital. After a complete sell out and rave reviews, the SLBS encourages the public to save the date for the 2nd Annual St. Louis Bourbon Festival on October 21, 2022.

SPOTLIGHT

/ GLENNON FRIENDS

SPOTLIGHT RICHARD SALINARDI JR. MEMORIAL GOLF TOURNAMENT

20th Anniversary of Annual Golf Tournament

R

ichard L. (Richie) Salinardi Jr. lived in New Jersey as a baby and moved to St. Louis as a young child. In 1973, at the age of 4, Salinardi was brought to SSM Health Cardinal Glennon Children’s Hospital for emergency brain surgery after an accidental fall cracked his skull and caused brain bleeding. The doctors and staff at Cardinal Glennon Children’s Hospital saved his life.

Fast forward to 2001, Salinardi was working as the general manager of food services at Aramark Corporation in the south tower of the World Trade Center when the 9/11 attacks occurred. Salinardi was able to get most of his workers onto an elevator. When he was asked to get on the crowded elevator, he told them he would take the next one. Unfortunately, that elevator never came. He was a hero that day for getting most of his workers to safety.

After his death, a group of Salinardi's high school friends from McCluer North got together to figure out how to honor his memory. The Richard Salinardi Jr. Memorial Golf Tournament began in 2002, just one year

after Salinardi was killed.

They chose SSM Health Cardinal Glennon Children’s Hospital as the beneficiary so they could support other kids and families like Salinardi.

A friend, Steve Wynd, Richard Salinardi Jr. said he is very proud of this group of friends who, along with Salinardi's two brothers, Jayme and Jason, work so hard to put on this event every year. It’s one of the few 9/11 memorial events still going strong after so many years, and Wynd says that speaks volumes to the person Salinardi was. Each year the tournament hosts up to 140 golfers, including two to three generations of players. This year’s tournament marked the 20-year anniversary since Salinardi's death. Salinardi's legacy is being remembered through the tournament and through the thousands of dollars it has raised for SSM Health Cardinal Glennon Children’s Hospital.

SPOTLIGHT GLENNON GUILD AND HARI MARI

Celebrating 40 Years With a Heartfelt Donation

F

orty years ago, Katie Crnkovich Murray received life-saving open-heart surgery at SSM Health Cardinal Glennon Children’s Hospital.

Now a happy and healthy adult living in Dallas, Tx., Crnkovich Murray knew she wanted to do something special to celebrate the anniversary of her Katie Crnkovich Murray surgery and fortieth birthday.

Crnkovich Murray joined the Glennon Guild — a women’s auxiliary group that raises vital funds for the hospital’s programs and services — and developed

an idea for a fundraiser. “I decided to partner with my employer, Hari Mari, a Texas-based footwear company, to donate youth flip flops to Glennon kids,” says Crnkovich Murray.

Crnkovich Murray rallied her friends, family, co-workers and the Glennon Guild, and was blown away by the support she received. She raised enough money to donate 100 flip flops to the patients receiving care at Cardinal Glennon Children’s Hospital.

To celebrate her successful fundraising efforts and the anniversary of her surgery, Crnkovich Murray's employer, Hari Mari, doubled the donation. This fall, Crnkovich Murray and her husband will be donating 200 pairs of flip flops to the hospital that changed her life forever!

“The doctors at Cardinal Glennon Children’s Hospital gave my heart another chance at life.

My hope is that I will have the ability to return this blessing of hope to other families in similar situations.”

glennon.org Fall/Winter 2021 • 67

GLENNON FRIENDS /

SPOTLIGHT

SPOTLIGHT SPREAD ARI'S LIGHT

Hannah's 18th Birthday

H

ospital staffs’ dedication to facilitating the happiest of birthdays for patients is one example of “the Glennon factor” in action. Normally, Hannah looks forward to her birthday celebration all year, so when she was hospitalized on her 18th birthday, the staff was devastated. Our medical team approached Aleeza Granote, the hematology/oncology social worker, about working to create a special celebration once Hannah was discharged. As a lifelong movie aficionado, Hannah always spent prior hospitalizations working her way through the floor’s film catalogue.

Granote knew the celebration would have to pay homage to this passion.

Granote worked relentlessly on short notice to coordinate with The Chase Park Plaza to create a night filled with movies, good food and laughter. With the generous support of Spread Ari’s Light, Granote was able to reserve one of The Chase’s luxurious movie theaters to provide Hannah and her family with a private screening experience. The family was blown away by everyone’s hard work to personalize every detail of their weekend so it would truly honor Hannah.

Spread Ari’s Light arranged a photographer,

covered all the hotel and entertainment expenses, and personalized Hannah’s hotel suite to make it an unforgettable experience. The outing provided the entire Aleeza Granote and Hannah family with a well-deserved opportunity to relax and celebrate Hannah, a patient who continues to remain positive despite obstacles.

Hannah’s father shared that the experience was “medicine for all of us.” He feels incredibly grateful for the SSM Health Cardinal Glennon staff, which has worked tirelessly to make sure they can look back fondly upon Hannah’s huge milestone of becoming an adult. When asked about planning the event, Granote says, “one of the most meaningful parts of my job is being able to work on special projects like these that really make a difference for someone who is having a difficult time. I carry the joy these families receive with me forever. I know I am not alone in this; it is so inspiring to see organizations and community members rally around our patients. When given the opportunity, people truly rise to the occasion to help.”

SPOTLIGHT KNIGHTS OF COLUMBUS

Tee Off For the Kids

Pictured from left to right: Fr. Ben Sawyer, Alex Cammarata, Andrew Fitzgerald and Zach Bauer

O

n Saturday, October 10, St. Alban Roe Council #12022 hosted its 21st Annual “Tee Off For the Kids” at Pevely Farms Golf Club.

68 • SSM Health Cardinal Glennon Children’s Foundation

With sunny skies and a high temperature reaching 90 degrees, 98 golfers enjoyed 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, helping them to reach their highest potential through comprehensive evaluation, care, family guidance, education and innovative research.

Thank you to all those who sponsored this fantastic event! Gary Lewis along with Carl Williams worked diligently to solicit donors and set a record high this year, bringing in over $30,000 in sponsorships alone. Donations are still coming in, however, and donations from this years tournament will contribute to the over $500,000 raised by this longstanding golf tournament over the last 21 years.

Thanks also to John Butler and Don Bieber who have chaired this event for the last five years. Without these two Knights' expertise, the tournament would not have been the huge success that it has been.

SPOTLIGHT

/ GLENNON FRIENDS

SPOTLIGHT KNIGHTS OF COLUMBUS

Rally on the River

O

n Saturday, May 29, 2021, the Knights of Columbus Evansville Council 1952 held the 8th Annual Rally on the River. Nearly 400 people came out to support this fun community event including more than 50 sponsors. After a moving Veterans salute ceremony, Lieutenant Colonel James P. Thomas, Chaplain USAF, led everyone in prayer and provided inspiration as the keynote speaker. Thanks to Mark McConachie and Bob Myerscough, co-chairs, who continue to lead the annual event, raising more than $120,000 since Rally on the River began in 2014. The success of this event wouldn’t be possible without all the many sponsors who continue to support this fabulous event year after year! Thanks to the generosity of the Knights of Columbus Evansville Council 1952, a check in the amount of $19,300 was presented to SSM Health Cardinal Glennon Children’s Foundation to benefit the Knights of Columbus Developmental Center.

Pictured from left to right: Co-Chair Mark McConachie, Grand Knight Larry Mudd, Co-Chair Bob Myerscough, George Obernagel, Colleen Dolnick, Galynn Kruse and Deputy Grandknight Sonny Heck

SPOTLIGHT GLENNON GUILD

Deck the Halls Home Tour

I

t’s hard to believe the holidays are right around the corner! The Glennon Guild is once again teaming up with St. Louis Homes + Lifestyles Magazine to put on the Deck the Halls Home Tour. Last year, the inaugural event raised more than $5,000 for SSM Health Cardinal Glennon Children’s Hospital. On December 4, 2021, interior design lovers can purchase a ticket for $25 to visit four gorgeous homes in Town & Country, Ladue and Clayton that have been transformed into festive showstoppers. Proceeds from the event

benefit the greatest needs of the patients and families at SSM Health Cardinal Glennon.

For more information, please visit stlouishomesmag.com/content/upcoming-events.

glennon.org Fall/Winter 2021 • 69

We’re proud to deliver nationally recognized top pediatric care.

Ranked by U.S. News & World Report.

At SSM Health Cardinal Glennon Children’s Hospital, our SLUCare physicians are proud to deliver compassionate, expert care to all our pediatric patients.

We offer six nationally ranked pediatric specialties: Cardiology & Heart Surgery; Gastroenterology & GI Surgery; Neonatology; Oncology; Pulmonology; and Urology.

Our providers partner with you to ensure the best outcomes for patients entrusted to our care. Working together, we can provide the most advanced health care for every child.

Please visit us at

cardinalglennon.com to learn more about our exceptional pediatric specialty care.

©2021 SSM Health. All rights reserved. CGC-STL-16-213976 8/21

WHERE ARE THEY NOW?

Where Are They Now? Joey Renick / THEN: Three-time acute lymphoblastic leukemia (ALL) survivor

now Nurse, long-distance bicyclist, husband and new father

THEN

I

n seemingly the blink of an eye, Joey Renick has graduated from college, married, started a nursing career, become a longdistance bicyclist and become a father. This has all taken place since 2016, when Renick entered remission from his third bout with leukemia thanks to a bone marrow transplant at SSM Health Cardinal Glennon Children’s Hospital.

“It’s hard to believe it’s been five years since my transplant,” says Renick, now 27. “I’m feeling great now. Really good. I have a lot of energy and feel like a normal human being again.”

Renick was first diagnosed with acute lymphoblastic leukemia (ALL) in 1996 when he was three years old. ALL is a cancer that affects the white blood cells. After three years of chemotherapy at SSM Health Cardinal Glennon, “I was in remission for about 12 years,” he says. “Most of my teenage years I was living a normal teenage life. Then I relapsed when I was 18.”

That encounter with leukemia also was treated with chemotherapy. It shifted his career goals. “I was planning on going into the Marines. I even had a recruiter.

NOW

Obviously that fell through, I think for the better.”

That remission was brief.

Leukemia returned when Renick was 22. A subsequent relapse “is an indication that the leukemia will not be cured with chemotherapy alone,” says Deepika Bhatla, MD, a SLUCare physician in The Costas Center. “A bone marrow transplant replaces the diseased marrow and provides a new immune system, which helps fight leukemia cells.”

Fortunately, all three of Renick’s sisters were matches for his histocompatibility type. Noelle, now 21 years old, underwent a procedure in which bone marrow was withdrawn from her pelvic bone. Renick received another course of chemotherapy before Noelle’s bone marrow was infused. After recovering from the transplant, Renick’s life resumed.

Quickly.

He graduated from the Goldfarb School of Nursing at Barnes-Jewish College in 2018. He then joined the nursing staff on the bone marrow transplant floor of Barnes-Jewish Hospital. “I like my job a lot,” he says. “I like being able to relate to the patients and being able to give them actual

information on what the transplant will be like mentally, emotionally and physically. I can have great conversations with patients.”

While attending nursing school classes, Renick married his longtime friend, Caylee Miller, in 2017. Their first child, Theodore Kent Renick, was born on Sept. 1, 2021.

In the meantime, Renick has taken up bicycling. “I try to ride once a week, 30 miles or more,” he says. “It’s nice to get on the bike and be outside.” Earlier this summer, he achieved the bicycling milestone known as a “century.” Renick rode 100 miles to raise funds for the Leukemia & Lymphoma Society’s Team in Training. He planned the ride so it ended at SSM Health Cardinal Glennon, where he still visits Dr. Bhatla for annual check-ups.

“I really enjoy coming in,” he says. “Everyone is excited to see a patient post-treatment and to see how well you are doing. I think it is a morale booster for the staff. It is definitely a morale booster for me. I get to come in and see my second family. That is how I refer to them.” glennon.org Fall/Winter 2021 • 71

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Dear Friends,

A

s hard as it is to believe, my wife Kristin and I have endured every parent’s worst nightmare, twice. At 3 months old, our son Andrew was diagnosed with a rare, immune deficiency called Hemophagocytic Lymphohistiocytosis (HLH) and the only cure was a successful bone marrow transplant. Sadly, after undergoing three transplants, he lost his battle at the age of 27 months. And if that was not enough, eight short months later our firstborn son Matthew also lost his battle after one bone marrow transplant at the age of 5.

Heartbroken and devasted, we decide we must not let their deaths be the end and decided to start The Matthew and Andrew Akin Foundation in their memories.

The mission of the foundation is simple: Provide resources Justin and Kristin Akin, Owners of All-Star Dodge Chrysler Jeep Ram, with their sons William (11) and Christopher(4) and support for families we know will unfortunately have to follow in our footsteps with this dreaded diagnosis, as well as funding research in the hope of a cure. We are grateful to use our family’s business, All-Star Dodge Chrysler Jeep Ram located in Bridgeton, to help in our foundation efforts. We host blood drives and bone marrow drives at the dealership and know many lives have been saved from those efforts. Our employees see us giving back and know how important it is to help support SSM Health Cardinal Glennon Children’s Hospital.

Fundraising is an integral part of our foundation’s work. Our biggest and most exciting event is our “700 Miles to Hope” bike ride. We ride across five states, covering 700 miles in seven days, dedicating each day to a child currently fighting HLH. The ride has raised over 1.3 million dollars for HLH research and family support. We are forever indebted to the wonderful care our son Matthew received from the amazing team at The Costas Center at Cardinal Glennon Children’s Hospital. Two of the Hematologists, Chris Hugge, MD, and Dennis O’Connor, MD, have ridden the 700 miles with us.

Owner Justin Akin (center) presenting check to SSM Health Cardinal Glennon Children’s Foundation

We continue to stay busy with our two sons, William (11) and Christopher (4), who we were blessed with through adoption. We remain grateful for the opportunity to be parents again. We know that despite tragedy, we all have the ability to help others and give back.

Justin Akin, Owner All-Star Dodge Chrysler Jeep Ram

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

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