Guardians Magazine: Fall 2019

Guardians Fall 2019

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

Ziyra:

An Ambassador for Hope see page 12

Doing what’s right for kids

6

Easing the transition home

14

Back to school with Healthy Kids, Healthy Minds

16

Featured guardians of childhood: the Piper family

From Malcolm E. Berry

Chief Development Officer, St. Louis Children’s Hospital The stories of impact you make possible at St. Louis Children’s Hospital

6

the best care for our kids

Easing the transition home

9

buzzworthy

News from St. Louis Children’s Hospital

12

big advances for our small patients

cover story: Ziyra: an ambassador for hope

14

out of the hospital, into our neighborhoods

Back to school with Healthy Kids, Healthy Minds

16

featured guardians of childhood: the Piper family

Tragedy leads to a family’s legacy of gratitude

Dear Friends, I know firsthand how critical it is to have a worldclass hematology/oncology team surrounding your family with unlimited love and support.

In my case, it was life with my daughter, Paige, before we lost her 14 years ago. That’s why I’m so grateful to donors who support St. Louis Children’s Hospital through a myriad of ways.

I’m also grateful to the thousands of donors, riders, and volunteers who participate in Pedal the Cause, the annual cycling challenge. Pedal the Cause is a tremendous partner of St. Louis Children’s Hospital, providing more than $5 million in critical pediatric cancer research support since it began 10 years ago. It supports the best and brightest ideas, so researchers can discover new treatments and preventions.

One of our patients who brought awareness to the need for more research was Victoria Drier.

Diagnosed with cancer at age 16, Victoria fought for 12 years and lived a vibrant, selfless life until she passed away in 2018. As the hospital’s first patient ambassador, Victoria was the inspiration for Pedal the Cause’s first Ride for a Child program in 2010. Her family and friends launched Team Victoria, which has raised more than $800,000 for cancer research to date.

Victoria’s father, David Drier, continues the fight to find cures through his commitment to Pedal the Cause as a board member and by establishing a lectureship at St. Louis Children’s Hospital.

The Victoria Rose Drier Lectureship Fund in Pediatric Cancer was established by Susan and David Sherman, Susan and Rob Goldstein, and David and Julie Drier, who worked jointly to ask their friends to help them endow this annual lectureship by raising $185,000. The lectureship promotes academic excellence in research and clinical providers at Siteman Kids at St. Louis Children’s Hospital who treat children battling childhood cancers.

Cancer remains the leading cause of disease-related death in children under 15 in the United States. Unfortunately, less than six percent of federal research support is directed to pediatric research.

That means children are counting on us to fill the research gap.

Thankfully, we have world-class researchers at Siteman Kids at St. Louis Children’s Hospital and Washington University School of Medicine who are dedicated to solving cancer’s mysteries and finding more cures for kids. With your help and the partnership of organizations like Pedal the Cause, we will make the progress our children need to reach their full potential in life.

St. Louis Children’s Hospital Foundation 1001 Highlands Plaza Drive West, Suite 160 St. Louis, MO 63110 314.286.0988 888.559.9699 Copyright ©2019 StLouisChildrens.org

Sincerely,

Malcolm E. Berry

highlights & happenings

Play ball! The World Record Baseball Game event took place over Memorial Day weekend. This devoted group played a continuous game of baseball for 82 hours, 38 minutes and 48 seconds to beat the Guinness World Record. Their efforts raised nearly $90,000 to benefit the lead-lined MIBG Therapy Suite at St. Louis Children’s Hospital — the only one of its kind in Missouri — to provide the highest-quality cancer care to children. Pictured from left: J.C. Rudden, Adam Coats, Jimi Morisaki.

St. Louis Children’s staff at the grand opening of the hospital’s new, state-of-the-art Behavioral Health Unit. This Foundation-funded 14-bed unit provides much-needed inpatient mental health care to children and teens, such as crisis stabilization and group therapy.

Let’s go Blues! Let’s go kids! St. Louis Children’s Hospital recognized the St. Louis Blues organization for the exceptional impact their ongoing support has had on patients and families. Blues for Kids presented a check for $150,000 — raised at this year’s Blues Casino Night.

Each year the Spoehrer Memorial Scholarship, established by the Friends of St. Louis Children’s Hospital, is awarded to two college and graduate school-bound volunteers of St. Louis Children’s Hospital who exemplify the hands-on, dedicated style of volunteerism of longtime volunteer Jane Spoehrer. Pictured: Susan Elliot presenting to this year’s recipients, Abigail Rothweiler (L) and Amanda Demas (R).

We all scream for ice cream! Troy Bader, president & CEO, International Dairy Queen, Inc., delivered a special treat to Jordan and other families at St. Louis Children’s Hospital for Miracle Treat Day. On this day, a dollar from every Blizzard sold benefitted Children’s Miracle Network.

Every handprint tells a story.

Representatives from Hyundai Hope on Wheels awarded the Hyundai Young Investigator and Scholar Hope Grant totaling $500,000 to Siteman Kids at St. Louis Children’s Hospital. The handprints on the car represent the many handprints in the fight to find a cure for cancer.

A publication of St. Louis Children’s Hospital

3

How you can help kids

this holiday season!

Every day at St. Louis Children’s Hospital, we fight to do what’s right for kids. But we couldn’t do this without you. Donors are crucial to funding the groundbreaking research and lifesaving medical care our kids deserve.

By supporting our brilliant doctors, nurses, and researchers, you can help ensure our patients and families get the best care possible.

This season of giving, we would be grateful to have you join us in our mission by supporting St. Louis Children’s Hospital with a tax-deductible gift at StLouisChildrens.org/Gift, or through one of the following efforts: Garden Tributes Since opening in 2000, the Olson Family Garden at St. Louis Children’s Hospital has provided a space where patients and families can surround themselves with beauty and serenity. We recently installed a tree sculpture that allows Hospital friends the opportunity to recognize someone important and support Children’s Garden by making a tribute gift of $1,000 or more. Three different leaf-plaque sizes are available and can feature either a brief message or a name of your choosing.

For questions, or to purchase a leaf, please contact Elizabeth Kozeny at 314.286.0088 or Elizabeth.Kozeny2@bjc.org.

4

Guardians Magazine Fall 2019

Holiday Cards Treat your friends, family, clients, and colleagues to a message of joy this year by sending a St. Louis Children’s Hospital holiday card. Personalized cards feature the verse and signature of your choice and best of all, 20 percent of all sales will benefit St. Louis Children’s Hospital. Visit goodcausegreetings.com/slch.asp to share in the true spirit of the holidays!

Tax Credits Missouri state tax credits are available for qualifying gifts to our Teen Outreach Program and Healthy Kids Express Dental Van. Make a gift to one of these vital programs, receive tax credits that reduce your overall tax obligation — and you actually end up paying less out-of-pocket overall!

Give more, spend less!

Facebook Fundraisers Ready to take your holiday giving to the next level? Create a Facebook Fundraiser! Engage your family and friends to help make this holiday season magical for children in the hospital. Visit facebook.com/fund/stlchildrens to set up your holiday fundraiser.

What gifts can qualify for tax credits?

Youth Opportunities Program (YOP): Gifts of $1,000 or more in support of our Teen Outreach Program from qualifying individuals and businesses.

Neighborhood Assistance Program (NAP): Gifts of $1,000 or more in support of our Healthy Kids Express Dental Van from qualifying businesses.

For questions or to reserve your YOP or NAP tax credits today, please contact Meg Geiger at Meg.Geiger@bjc.org or 314.273.3652.

IRA Charitable Gift Rollovers Wish List St. Louis Children’s Hospital is grateful for all the generous gift donations we receive throughout the year, but during the holidays, these items are vital to stock our Snowflake Village. This program provides the opportunity for families to “shop” for their children while in the hospital, as parents are given free tickets to exchange for toys.

The goal is to bring joy to kids spending their holidays in the hospital. Please visit StLouisChildrens.org/ WishList to learn more about our greatest needs and any restrictions to keep in mind when gifting items.

For questions, please contact us at 314.215.7192 or SLCHdonations@bjc.org.

If you are 70½ years old or older, you can give up to $100,000 per year from your IRA directly to St. Louis Children’s Hospital Foundation without having to pay income taxes on the gift. For more information, please contact Jan Rogers at Jan.Rogers@bjc.org or 314.286.0981.

AmazonSmile Shopping for your gifts online this year?

Go to smile.amazon.com, select St. Louis Children’s Hospital Foundation, and Amazon will donate 0.5 percent of eligible purchases to Children’s. These small donations really add up and have no additional cost for you!

A publication of St. Louis Children’s Hospital

5

the best care for our kids

Easing the transition w home

Dr. Mary Hartman and St. Louis Children’s Hospital patient, Hank

It started with a cough.

On February 21, 2011, then 12-year-old Madi Allen’s life took a dramatic turn. Initially, her mom, Shelle, suspected she had the flu.

But by the next day, Madi’s breathing became rapid and shallow, and she was rushed to the hospital in her hometown of Jacksonville, Ill., where she was diagnosed with pneumonia.

6

Guardians Magazine Fall 2019

hen Madi’s breathing continued to worsen, she was quickly transferred to a larger hospital 45 minutes away. By the time she arrived there, she was in respiratory distress and needed to be intubated to breathe.

Within hours, Madi’s kidneys and lungs began failing. Madi was immediately airlifted to St. Louis Children’s Hospital. There she would be placed on Extracorporeal Membrane Oxygenation (ECMO), which is a form of life support that does the work of the heart and lungs while the body recovers from illness.

St. Louis Children’s was the closest hospital with ECMO technology.

Diagnosed with influenza B and a dangerous resistant bacterial pneumonia, Madi was in a medically induced coma for five weeks. She spent two months in the Pediatric Intensive Care Unit (PICU) at St. Louis Children’s and another month on the rehabilitation floor, where she had to relearn to walk and even brush her teeth.

Too much, too fast When she finally went home, Madi was fragile — 20 pounds lighter on an already petite frame. She couldn’t eat and needed a catheter to receive nutrients. Shelle was responsible for hooking up the catheter and keeping it sterile to prevent infection. She also took Madi to occupational, physical, and speech therapies five days a week.

“I was terrified caring for her at home,” Shelle says. “I stayed up all night and watched her to make sure she was breathing. I was afraid I would miss something and felt everything was on my shoulders.”

As the primary caregiver, Shelle struggled with exhaustion, stress, anxiety, and skyrocketing blood pressure.

“Fear was taking over my life,” she says.

She eventually sought therapy and was diagnosed with a form of posttraumatic stress disorder (PTSD). “My job is to protect my child,” she says. “In the hospital, I had to relinquish all control to doctors and the team. Then when we went home, all the care was thrown back on me.

It felt too much, too fast.”

Shelle expressed her concerns to her daughter’s former PICU nurses at St. Louis Children’s, and a seed was planted.

The beginning of better follow-up care Initially, Dr. Mary Hartman and her partners, Dr. Kristin Guilliams and Dr. Rejean Guerriero in Pediatric Neurology, and Dr. John Dodd in Pediatric Neuropsychology, ran the program on their own time and on a shoestring budget.

The Neurodevelopmental Bridge Program launched in 2017 for children who have been admitted to the PICU. The program is one of the few in the country and the only one in the region.

Dr. Hartman and her colleagues felt strongly that the PICU’s responsibility didn’t end at discharge. “Our program felt responsible to ease the transition for

families — the program was born from a sense of duty.”

The program began with the group at highest risk of neurocognitive or neuropsychological issues, such as those children who have had brain injuries from stroke, seizures, or trauma.

“We found as families were transitioning home, they had a huge adjustment,” Dr. Hartman says. “They go from a supportive, intensive environment surrounded by health care professionals to being on their own at home as they deal with continuing issues. Parents were often frightened and were struggling with their own psychological trauma from their children’s illnesses.”

To help fully understand the needs of patients and their families, Dr. Hartman asked Shelle to join an advisory committee for the program. Her firsthand experiences have helped shape the program as it continues to expand.

“My partners and I crafted instruments to test for psychological symptoms such as depression, anxiety, or PTSD,” Dr. Hartman says. “We also performed other screenings and worked to identify needs and resources for families. We demonstrated that families valued the care we offered as an important part of their child’s recovery.”

That progress and feedback opened the door to seek additional funding to expand the program.

Top: Madi Allen during treatment Bottom: Madi, now 21 years old, plays goalie in college.

continued on next page

A publication of St. Louis Children’s Hospital

7

the best care for our kids Success for parents and patients In 2018, Dr. Hartman pitched the idea for a formalized Neurodevelopmental Bridge Program to her division chief and ultimately to St. Louis Children’s Hospital Foundation.

Her recommendations included adding a social worker and an education specialist to the team. The Foundation was able to fund this vital resource for families through an anonymous donor, who had expressed an interest in supporting innovative ideas that better ensured long-term success for our patients and their families.

This support allows us to tell our young patients that they’re our personal responsibility until they become adults.

Mary Hartman, MD, MPH, pediatric critical care specialist Today, the program continues to see tremendous success with an eye on further growth. Since the program began, more than 100 children and families have been through the program, and it has begun to form collaborative partnerships with other neurodevelopmental programs in the Neonatal Intensive Care Unit and Heart Center.

After traumatic brain injuries or other trauma that leads to a stay in an ICU, children often have lingering issues with sleep, anxiety, or school. “This can be difficult for parents to manage,” Dr. Hartman says. “When we tell them that we will shepherd them through their child’s return to school, you can see the look of relief on their faces. It’s such a joy to be able to tell parents they aren’t in this by themselves.

The program is designed purely to benefit families. I feel privileged to be part of it and proud to be paving the way for others.”

8

Guardians Magazine Fall 2019

St. Louis Children’s Hospital is becoming recognized as a leader in pediatric follow-up care. Because of the early successes in enrolling patients and families into this follow-up program and the improved outcomes, other pediatric hospitals have inquired about how to create a similar program. “Not many hospitals are able to offer this type of clinic, but we can because we have the generous support of donors to St. Louis Children’s Hospital,” Dr. Hartman says. “This support allows us to tell our young patients that they’re our personal responsibility until they become adults. It’s pretty unique to offer that continuity of care throughout childhood.”

As the program has grown, the team continues to be mindful of family-centered care. “When patients come for follow-up, I make a point to spend some extra time and check in with the family,” Dr. Hartman says. “Almost every time, they will share how scared, exhausted, and sad they are.

We try to help them feel less burdened and let them know they’re not alone. This program is as much for the caregivers as the kids.”

Moving on to a bright future Today, Madi is a 21-year-old college senior who plays goalie for her school’s soccer team and plans to pursue a career in juvenile probation. She has successfully learned to adapt to her lingering health issues, including limited lung function and lapses in her short-term memory.

“Madi is bright and has learned to advocate for herself,” Shelle says. “We’re both in a good place, so I feel more comfortable letting her go — she plans to move to Texas after college graduation.”

Shelle is happy her input has helped create the Neurodevelopmental Bridge Program. “It’s great to be part of something positive after a traumatic experience that makes life easier for other families.”

buzzworthy

Bloomberg gift will educate pediatricians on current issues Terry and Gordon Bloomberg, MD, have dedicated their careers to helping children. Terry pursued a role in early childhood education, while Gordon became a general pediatrician, later focusing on asthma and allergy research.

a

serendipitous meeting at a Wisconsin summer camp changed the course of their lives. Amazingly, Terry and Gordon both chose to attend universities in Chicago and they began dating. They were married while still in college.

The couple moved to St. Louis for Gordon’s residency at St. Louis Children’s Hospital, and Terry began teaching. They soon started a family and had four children within four years.

Terry’s firsthand knowledge in child development, combined with her education and teaching experience, led her to open an innovative day care that she ran for 35 years.

While Terry was educating young minds, Gordon maintained a successful private practice as a general pediatrician for much of his career.

Part of that entailed enrolling asthma patients from his practice into studies at Washington University and St. Louis Children’s Hospital.

Because of his experience, at age 69, Gordon was invited to join the Washington University faculty as a clinical researcher and pediatric allergist at St. Louis Children’s Hospital.

Gordon’s experience on the academic side of medicine opened his eyes to opportunities for expanding education for primary care pediatricians.

“The field is not the same as it was when I started my practice many years ago, and pediatricians need to be better equipped for the many issues families face today,” Gordon says.

“Pediatricians are on the front lines dealing with immigration, gender identity, and racial disparities, among other things.”

With Gordon’s viewpoint in mind, Terry also saw an opportunity to educate pediatricians more about early childhood development.

That’s when the idea of creating the Terry and Gordon Bloomberg, MD, Endowed Lectureship Fund at St. Louis Children’s Hospital began to take shape.

The primary purpose of the fund will be to hold annual lectureships, enhance pediatric training and education for physicians and professionals, and host collegial training opportunities to better equip them to address the behavioral and psychosocial needs of pediatric patients and caregivers.

Gordon says, “My hope is that our lectureship will help general pediatricians better understand current pediatric family issues and show them how to handle them.”

The first lecture through the Terry and Gordon Bloomberg, MD, Endowed Lectureship Fund was held Oct. 25, 2019. Interested in creating your own lectureship? Contact Amy at Amy.Trapp@bjc.org.

A publication of St. Louis Children’s Hospital

9

buzzworthy

New leader brings fighting spirit for kids

When newly named St. Louis Children’s Hospital president Trish Lollo walks the hospital halls and meets patients and families along the way, she feels a special empathy for them. After all, she’s been in their shoes.

w

hen Trish was just two years old, she was diagnosed with acute lymphoblastic leukemia (ALL).

She spent the next three years in active treatment, and even after going into remission, she was closely monitored for several more years.

Being a childhood cancer survivor left a mark on Trish, and upon entering college she found herself drawn to the health sciences field.

“I thought I would get a PhD in neuroscience,” Trish says. “I loved basic science and worked for three years in a neurobiology lab as an undergrad.

But basic science can be a solitary existence, and I felt isolated. Later I shadowed nurses, physicians, and a hospital CEO. I fell in love with what I saw in hospital administration and the collective impact leadership can make.”

10

Guardians Magazine Fall 2019

Today, Trish brings her personal and professional experience to her role at St. Louis Children’s Hospital.

“I have a deep appreciation for the fear and anxiety parents feel when their children are ill,” she says. “That’s why I’m impressed to see how the team at St. Louis Children’s cares for the whole family.”

Trish’s personal journey with cancer gave the hospital leader grit that has served her well throughout her life. “I developed a fighting spirit that has stayed with me — I never give up.”

Coming full circle Growing up in New York, Trish earned a bachelor’s degree in biology from Stony Brook University and a master’s degree in public health from Yale University. She stayed close to home early in her career, holding several positions at New York University Medical Center, including administrative director of the Hassenfeld Children’s Center for Cancer and Blood Disorders.

Trish took a leap of faith in 2006 and moved across the country to become an associate administrator of oncology services at the University of California – San Diego Health System.

buzzworthy

In 2011, Trish found her home in St. Louis as vice president of oncology services at Siteman Cancer Center. There she played a vital role in increasing Siteman’s local and national presence. Five years later, Trish became president of Barnes-Jewish West County Hospital and led the campus transformation that included a new replacement hospital that opened this fall.

Ironically, until recently, few people knew Trish was a cancer survivor, despite her in-depth involvement at several cancer care organizations.

She is a member of the American Cancer Society’s CEOs Against Cancer St. Louis chapter and is an eight-year participant in Pedal the Cause.

“My experiences at both Siteman and Barnes-Jewish West County Hospital were wonderful building blocks for this new challenge at St. Louis Children’s,” Trish says. “Leading Siteman’s geographic expansion helped me understand the importance of delivering care closer to home, which is the same philosophy we embrace at Children’s. I’ve come full circle.”

Building strong partnerships for better care Trish brings openness, authenticity, and passion to her new role. Former colleagues describe her as a “firm but fair” leader.

“I ask a lot of questions to understand,” Trish says. “And I’ve been so impressed by the passionate and proud care teams who are committed to innovating and improving. It’s clear they are always focused on doing what’s right for kids.”

Challenges abound in health care, but Trish is ready for them. “We’re going to continue to expand the reach of St. Louis Children’s throughout the community and region,” she says. “It’s exciting to partner with talented team members to foster advances in care.”

Trish is also inspired by the level of commitment from hospital and Foundation board members and donors. “I’m looking forward to partnering with donors who are committed to supporting our mission,” Trish

says. “Many of these things are not reimbursed by traditional payors, such as Medicaid or commercial insurers. We’re extremely dependent on a culture of philanthropy to achieve our vision.”

Part of that vision includes bringing accessible care into the community to provide the greatest impact.

“Thanks to donor support, we can do this in so many important ways,” Trish says. “For example, the Healthy Kids Express van reaches more than 10,000 underserved children and teens in our community each year. This van provides immunizations, dental care, health care screenings, and asthma screenings and education — all free of charge.”

She adds that donors also fund programs and services such as mobile intensive care units, various camps for chronically ill children, a bereavement program, and cancer support.

“We’re grateful for the time, talent, and resources our donors offer to benefit kids at our hospital.”

With a thankful spirit and an active family now rooted in St. Louis, Trish feels right at home in the Gateway City. In a role that perfectly marries her personal and professional experiences, Trish brings her passion and fight to do what’s right for kids.

A publication of St. Louis Children’s Hospital

11

big advances for our small patients

Ziyra: an ambassador for hope “Appreciate the day you have because everything can change in the blink of an eye,” advises Allysia Hills. It’s sage wisdom this mom gained after her 8-year-old daughter, Ziyra, was diagnosed with a cancerous brain tumor in October 2018.

12

Guardians Magazine Fall 2019

z

Ziyra rang the bell signifying the end of her cancer treatment.

iyra’s journey at St. Louis Children’s Hospital started with a seizure that left her unconscious for more than 45 minutes.

“I decided in a split second that the ambulance should take Ziyra to Children’s, and I’m so glad I did,” Allysia says.

Once at Children’s, Ziyra quickly had a battery of tests that revealed she had a brain tumor. However, it wasn’t until surgeons removed and biopsied the tumor that they knew for sure it was an ependymoma, a cancerous tumor that forms in the brain or spinal cord and tends to recur.

From December to February, five days a week, Ziyra had proton beam therapy radiation at the S. Lee Kling Proton Therapy Center, which is part of Siteman Kids at St. Louis Children’s Hospital. It is the only proton beam therapy center located in Missouri and the surrounding region.

Proton beam therapy is ideal for patients with solid tumors that are located near sensitive structures or tissues, such as the eyes, brain, or spinal cord. It is particularly beneficial for children, where precise targeting of radiation is critical to avoid impacting growing bones or tissues.

“To have the proton therapy center at Children’s was very helpful and convenient,” Allysia says.

Once proton therapy was completed, Ziyra began intensive chemotherapy. “It has been rough on her and definitely slowed her down, but she is determined to keep pushing,” Allysia says. “I’m proud of her and how strong she is.”

Making tracks for cancer research Ziyra’s sweet and positive nature caught the attention of one her caregivers, who recommended she be the patient ambassador for Pedal the Cause Ride for a Child. This special program pairs Pedal the Cause teams with a cancer patient who is actively going through treatment at Siteman Kids at St. Louis Children’s. It is an inspiring way for cyclists to connect with a child who is receiving state-of-the-art care and more advanced treatment for cancer as a result of the funds raised by Pedal the Cause. Ziyra has always wanted to help others, and as a Pedal the Cause Ambassador she is bringing attention to the importance of research in the quest for cures.

Since Pedal the Cause began 10 years ago, more than 25,000 Pedal the Cause riders have raised nearly $30 million for cancer research in St. Louis. Research dollars have spurred tremendous progress through the Children’s Discovery Institute (CDI), which is a partnership with Washington University School of Medicine and St. Louis Children’s Hospital. CDI researchers, who are part of Siteman Cancer Center, are aggressively pursuing cures to deadly childhood diseases with genetic origins, including cancer.

Federal research funding is typically funneled to proven research concepts, which means promising new ideas are left on the shelf. Funds raised by Pedal the Cause allows CDI cancer researchers to collect essential data to take their research to the next level and discover new treatments and preventions that can change pediatric patients’ lives.

While researchers have made significant progress in cancer treatments resulting in more lives saved, the need for more research is critical — especially in pediatric cancer research.

“Adult cancer research doesn’t always inform pediatric care,” says Malcolm Berry, chief development officer at St. Louis Children’s Hospital Foundation.

“We need to delve deeper into new approaches, new angles, and new ideas to help more children.”

“Partners like Pedal the Cause and other donors are making a difference every day to ensure we can grow our research programs to develop new therapies and clinical trials for pediatric patients just like Ziyra,” Malcolm says.

“On behalf of all our patients and families, we offer our heartfelt thanks.”

Examples of progress in research thanks to Pedal the Cause-funded projects include: Jeff Bednarski, MD, PhD, and his research team are using natural killer (NK) cells as a personalized cellular immunotherapy strategy for relapsed acute myeloid leukemia (AML) in pediatric and young adult patients. A previous adult clinical trial provides evidence that the immune system’s NK cells can be altered in the laboratory and trained to destroy cancer cells in some patients.

Jeffrey Magee, MD, PhD, and his research team are conducting a study to better understand the biology of pediatric leukemia cells that survive after cancer therapy and to try to identify the genes that enable these leukemia cells to resist such cancer treatment.

Josh Rubin, MD, PhD, and his research team are performing a first-in-kind clinical trial to determine whether starving cancer cells of sugar with a ketogenic diet can improve outcomes when combined with chemotherapy for children with recurrent brain tumors. This trial could establish St. Louis Children’s Hospital and Washington University as pioneers in the development of dietary approaches to cancer treatment.

To learn more about how you can support the Children’s Discovery Institute, please call 314.286.0988.

A publication of St. Louis Children’s Hospital

13

out of the hospital, into our neighborhoods

Back to school with Healthy Kids, Healthy Minds

While playing at recess, Devonté Banks, then a second-grader at Lexington Elementary School, began having severe breathing problems due to asthma. Thankfully, the school nurse, Kirsten Wilford, RN, was immediately available to care for Devonté as part of St. Louis Children’s Hospital’s Healthy Kids, Healthy Minds program.

14

Guardians Magazine Fall 2019

h

Dana Johnson, Devonté Banks, and Kirsten Wilford

ealthy Kids, Healthy Minds is a donor-funded program that places full-time school nurses and behavioral health therapists in four St. Louis public schools to address the physical and psychological needs of students. For Devonté and his mom, Dana Johnson, the Healthy Kids, Healthy Minds program was in the right place at the right time.

“I was definitely relieved that the nurse was there,” says Dana, who is the school secretary. Kirsten treated Devonté’s asthma, but the symptoms continued. Devonté’s symptoms were further assessed on the St. Louis Children’s Hospital’s Healthy Kids Express, a donor-funded pediatric mobile health van that, fortunately, was visiting the school the day Devonté had his asthma attack.

The Healthy Kids, Healthy Minds program works in tandem with the Healthy Kids Express van as an extension of the asthma program.

Asthma is the most common chronic disease facing kids today.

Because of Devonté’s persistent asthma symptoms, he was transported from his school to St. Louis Children’s Hospital, where he stayed in the Pediatric Intensive Care Unit (PICU) for three days.

Educating the mind and body The Child Health Advocacy and Outreach department at St. Louis Children’s launched the Healthy Kids, Healthy Minds program during the 2017–18 school year, with support from donations to the Foundation.

Healthy Kids, Healthy Minds increases the school system’s nursing staff and provides convenient health care support to students, families, and faculty where they are. The program is customized for each school with hopes to expand to additional schools over the next two years.

The Healthy Kids, Healthy Minds program reduces barriers to learning through a multipronged effort that includes identifying and providing case management of students’ chronic health care needs such as diabetes, asthma, life-threatening food allergies, and sickle cell disease. It provides parents with referrals and health care resources; assists with interventions for students with chronic behavior and emotional needs; and offers individual, group, and family therapy. In its first year, Healthy Kids, Healthy Minds averaged 30 clinic visits each school day.

“We want to see school nurses become a key part of the school team and build relationships,” says Crystal Nelson, RN, the community health manager who leads the Healthy Kids, Healthy Minds program.

Through Healthy Kids, Healthy Minds, nurses address physical needs, and the behavioral health therapists consult with staff and parents on the social, emotional, and behavioral needs of students.

“When nurses recognize issues, they can connect kids to social workers or behavioral health therapists,” she says. “The program approaches behavioral problems from a different angle and gives kids coping strategies, so they can stay in the classroom and learn. Our goal is to improve emotional wellness, so kids can get the most out of instructional time.”

We want to see school nurses become a key part of the school team and build relationships.

Crystal Nelson, RN, community health manager, Healthy Kids, Healthy Minds program In addition, the program offers traumainformed training for school staff members, so they can better understand and develop strategies to use in the classroom.

Knocking down barriers to care Having the program embedded in the schools puts nurses and behavioral therapists on the front line with students and parents.

“Children with unmet mental or physical health needs have a difficult time engaging in the educational process,” Crystal says. “We’re right there where the kids are and alleviate the pressure on parents to make appointments, take off work, or coordinate transportation. Our program knocks down barriers to care.”

She continues: “What’s most satisfying is seeing kids get the help they need. Our visionary leaders are always looking at better ways to serve kids. What we’re doing through Healthy Kids, Healthy Minds is making a real difference.”

As for Devonté, he is currently in third grade at Lexington Elementary School. He and his mom are both comforted knowing that the Healthy Kids, Healthy Minds school nurse is on-site to address any physical or mental health needs so that learning is the most important event of the school day.

To learn more about how you can support the Healthy Kids, Healthy Minds program, please call 314.286.0988.

Top: Dena Bashiti, RN, Woodward Elementary Middle: Monique Fitzgerald, RN, Laclede Elementary Bottom: Jessica McCullough, RN, Hodgen Elementary

A publication of St. Louis Children’s Hospital

15

featured guardians of childhood: the Piper family

Kathy Tharp and Lara Tuepker circa 1990

Childhood tragedy leads to a family’s

legacy of gratitude March 31, 1956, was a life-changing day for Kathy Piper Tharp.

That morning, at the age of six, she tiptoed downstairs in her flannel nightgown while her mother, Kay Piper, was upstairs with Kathy’s two-week-old sister, Lisa. Always curious, Kathy couldn’t resist the lure of the ornate silver lighter in the “off-limits” living room. While her small hands managed to spark the flame, the lighter dropped onto her lap, igniting her nightgown. Kathy ran screaming to the bathroom to douse the flames, but they engulfed her. Her mother came running to help and severely burned her hands and arms as she tried to protect Kathy’s face from the flames and extinguish the fire.

16

Guardians Magazine Fall 2019

n

eighbors quickly contacted the Piper family’s pediatrician, Maurice Lonsway, MD, who personally drove Kathy and Kay to St. Louis Children’s Hospital because he knew it was best equipped to deal with burns.

Kathy suffered second- and third-degree burns on 70 percent of her body and spent the next six months at St. Louis Children’s.

Meanwhile, her mother was recovering from her own burns.

“The nurses were so wonderful and gave me round-the-clock nursing care,” Kathy recalls. “They were always smiling and encouraging me even during the most painful times. They gave my whole family so much personal attention.”

Kathy’s mom and grandmother also stayed by her side and set a strong example.

“One of my arms was so burned that some of the doctors wanted to amputate it from the elbow down, but my mom would not even consider it because she chose to believe they could make me well again,” Kathy says.

Kathy kept her arm, and over the next seven years had 30 skin grafts.

Kathy credits her plastic surgeon, Minot Fryer, MD, for “coming to her rescue.”

“He would never give up on me,” she says.

Because Kathy’s mom protected her face while her nightgown was on fire, Kathy had no facial burns.

Sharing badges of courage When Kathy was finally able to go home in September 1956, she started second grade right on track. “I was constantly encouraged by my mom and grandmother to not let my burns define who I was or who I would become,” Kathy says.

As she grew up, she thrived and had many adventures. A few months after she was home from the hospital, Kathy met Elvis when he played at the former Kiel Auditorium in St. Louis. “As a 7-year-old, I remember feeling self-conscious about meeting him because I was missing my two front teeth, not because of my scars,” Kathy recalls. “I was a huge Elvis fan and was jumping out of my seat at that concert!”

Back row: Lara Tuepker, Lisa Holley, Kathy Tharp Front row: Kay Piper

I put the hospital in my will because I owe them my life. They were there for me, and they’ve been there for my family.

Kathy Tharp

The brave, spunky girl later went to college, married, and became a successful real estate agent. Her husband, Mike, calls her scars “badges of courage.”

Kathy shares that courage with others and frequently counsels other burn survivors. “It helps them to know there’s life beyond where they are at that moment,” she says. “I want to give them the hope and encouragement I received.”

Kathy has felt lifelong gratitude toward St. Louis Children’s Hospital. “If the nurses and doctors at St. Louis Children’s Hospital hadn’t taken such good care of me, I wouldn’t have had the life I’ve had,” Kathy says. “I put the hospital in my will because I owe them my life. They were there for me, and they’ve been there for my family.” continued on next page

A publication of St. Louis Children’s Hospital

17

featured guardians of childhood: the Piper family Learning from a history of strength While Kathy’s sister, Lisa, was just a newborn when Kathy was burned, Lisa grew up admiring her big sister. “I remember Kathy went to her high school prom in a white, sleeveless dress with all her scars visible,” Lisa says. “It’s a testimony to her strength.”

That strength and the lessons Lisa learned from her mother became a lifeline when her daughter, Lara, was born 16 weeks premature in 1983 – 27 years after Kathy had been a patient at St. Louis Children’s Hospital.

“When I had Lara, I finally understood all my mother really went through with Kathy,” Lisa says. “My mom was at the hospital every day with Kathy, just as I was with Lara.”

Lara was barely two pounds and just 14 inches long when she was born. She was immediately transported to the Neonatal Intensive Care Unit (NICU) at St. Louis Children’s Hospital. Before the 1980s, many premature babies did not survive.

“Lara, David, and I overcame major hurdles because of the expertise of the doctors and nurses in the NICU at St. Louis Children’s Hospital,” Lisa says. “They were phenomenal and taught us so much. What impressed me the most was every nurse’s ability to deal with the tiniest babies in medical crisis while at the same time enlightening frightened parents of what as happening and calming them. It takes an exceptional person to do that.”

“Lara was cared for by angels on earth,” Lisa says. “That’s what the NICU nurses at St. Louis Children’s Hospital are. We’re so blessed to have this NICU in our community.”

After nearly three months at St. Louis Children’s, Lara went home in August 1983.

“I was so worried about how she could be normal after all she went through,” Lisa says.

“But she went on to have scraped-up knees and lost her teeth just like every child.

“I cried every year on her birthday – it was always a special day. And it still is.”

18

Guardians Magazine Fall 2019

We miss our mom terribly – she always told us, ‘Be stout of heart, for this too shall pass.’ She was right.

Lisa Holley In 2018, Lisa and her mother, Kay, toured St. Louis Children’s Hospital’s NICU together. “I talked to other moms to give them hope,” Lisa says. “Lara understands what the hospital means to all of us, too.

For Mother’s Day, she handwrote 50 notes to give to moms in the NICU.” Because of her gratitude for the hospital, Lisa volunteered for the hospital.

She has served on the Friends board, chaired the annual Table Tops event, and served on various committees. “I feel like I can’t give back enough to St. Louis Children’s Hospital,” she says.

Generous hearts run in the family In addition to Kathy’s legacy giving, Lisa and David established the Lara and Jay Holley Fund, an endowment named after their children, to benefit the NICU at St. Louis Children’s.

Before Lisa and Kathy’s mother, Kay, passed away in early 2019, she created a legacy of giving. Her experiences with her daughters and granddaughter inspired her to volunteer at the hospital and to offer generous stock gifts in honor of her grandchildren.

“We miss our mom terribly,” Lisa says.

“She always told us, ‘Be stout of heart, for this too shall pass.’ She was right. Lara couldn’t have received better care, so our story has a happy ending. My daughter was given a great chance at life and took it.”

So did Kathy. She says, ”If not for St. Louis Children’s, neither one of us would be here. We are so grateful.”

© 2019, St. Louis Children’s Hospital. All Rights Reserved.

A publication of St. Louis Children’s Hospital

19

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

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

Laila Anderson inspired us all in her battle against a rare blood disease. Now her fight continues, and her story is being told like never before in a documentary film. The Blues have started a new season — and so has Laila.

Laila: The Next Season is proudly sponsored by

Visit StLouisChildrens.org/Laila for updates on the film’s release and more.