Guardians Fall 2018
The stories of impact you make possible at St. Louis Children’s Hospital
A sister’s gift saves both her brothers see page 6
what’s right for kids
through care
through discovery
through outreach
The stories of impact you make possible at St. Louis Children’s Hospital
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buzzworthy
News from St. Louis Children’s Hospital
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the best care for our kids
cover story: A sister’s gift saves both her brothers
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out of the hospital, into our neighborhoods
Reimagining the state of child mental health
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big advances for our small patients
Saving Caroline
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letting kids be kids
More fun. Less pain. Camp Crescent delivers
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featured guardian of childhood: Hyundai Hope on Wheels
Driving to end a deadly childhood cancer
St. Louis Children’s Hospital One Children’s Place St. Louis, MO 63110 314.286.0988 888.559.9699 Copyright ©2018 StLouisChildrens.org
Hello, my name is Matteo Grassi, and I’m a 15-year-old student at Eureka High School. I love baseball and play for the St. Louis Bears. When I’m not pitching, I play a lot of first base. When I’m not playing or practicing baseball, which isn’t very often, I like to hang with my friends. Or else I’m in the hospital or visiting a doctor. That’s because I have a genetic disease called cystic fibrosis (CF). CF affects my lungs, digestive system and liver. It produces a thick, sticky layer of mucus that I can’t get rid of. The problem is that it hurts my breathing, lowers my lung function and allows bacteria and even fungus to grow in my lungs, which is really serious. I have to do a lot of daily breathing treatments that take a couple of hours a day, and I take about 40 pills a day just to be able to digest my food and to keep my lungs functioning OK. Since I’ve had CF all my life, I’ve been in the hospital so many times I’ve lost count, usually for one to three weeks at a time. Sometimes I’m not allowed to leave my room at the hospital for the entire stay, because I can easily catch an infection from someone else. You can feel trapped. I also go to the hospital regularly for day visits to be checked out and do pulmonary function tests. That’s a lot of time I have to be away from my family, friends, school and, of course, baseball. Luckily, I am cared for very well at St. Louis Children’s Hospital. The doctors and nurses and the whole staff understand what I’m going through and try to make my stay the best it can be. The hospital puts on programs to help us pass the time and have some fun. One of my favorites is bingo every Tuesday. You play it over the television and can win prizes. My physical therapists try to keep me as active as I can be, since I’m in bed a lot and hooked up to IVs. The hospital also has great nurses and doctors who get to know you and try to make you comfortable. In fact, my nurses know me so well they don’t even have to ask what flavor of Powerade to bring me to take my pills. St. Louis Children’s Hospital is a pretty great place if you have to be in the hospital. No one wants to be there, but unfortunately, we need the hospital. Every donation you are able to make helps kids like me during a difficult time. I hate missing weeks of school, holidays, birthdays and sports. I’m just glad that when I’m at Children’s, my parents and I know we will be well cared for and the staff will make my stay the best it can be. Thank you for your generosity,
Matteo Grassi
highlights & happenings
KIDstruction Week, just like its patient ambassador, Sawyer (pictured here), continues to grow! Throughout the month of August, local construction and design companies and their employees raised $425,000—well over the campaign’s goal—to support programs and services at St. Louis Children’s Hospital.
The fourth annual Tri My Best Triathlon, an adaptive triathlon for kids with physical challenges, was a day of inspiration and triumph for the more than 60 athletes, 300 volunteers and 500 cheerleaders. As one parent stated, “The amount of support and encouragement shown to my son was overwhelming to watch. I have the best memories of today, and we are so grateful to all who helped make it happen!”
It was another “heartwarming” experience for the kids of Camp Rhythm, a weeklong camp for kids with heart conditions. In a community where medication, fatigue and scars are part of life, Camp Rhythm provides the chance for kids to just be kids—and thanks to generous donations to St. Louis Children’s Hospital, campers attend at no cost.
Thousands of cyclists, volunteers, cancer survivors and fighters gathered for Pedal the Cause, the September cycling event to benefit cancer research at Siteman Kids at St. Louis Children’s Hospital and Siteman Cancer Center. Riding in honor of Gabriella—a current patient at Siteman Kids—St. Louis Children’s Hospital team member and Gabriella’s dad, Jeff, gears up for the ride with his wife and Gabriella’s mom, Michelle (center), and a fellow Children’s teammate and friend.
Philanthropists and longtime Guardians of Childhood Dale and Kate Cammon were honored earlier this year as the St. Louis Children’s Hospital Heart of Gold Award recipients for 2017. Established in 1997, the prestigious honor is given to individuals who demonstrate the highest level of philanthropy through gifts of both their time and resources to benefit hospital patients and families.
Each year, two hospital volunteers are selected to receive the Spoehrer Scholarship to honor the legacy of Jane and Charles Spoehrer and their spirit of service to St. Louis Children’s Hospital. Students Jessica Parker and Eve Robinson received the 2018 academic awards after demonstrating their service commitment, together accumulating nearly 300 volunteer hours. A publication of St. Louis Children’s Hospital
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buzzworthy
Shen named new St. Louis Children’s Hospital president Earlier this year, BJC announced that St. Louis Children’s Hospital president and BJC group president Joan Magruder would move out of her role as Children’s Hospital president to take on many of BJC group president Lee Fetter’s responsibilities when Fetter retires at the end of 2018. After an extensive search, Mark Shen, MD, MBA, has been named the new president of SLCH, effective Nov. 12. Dr. Shen has been with Ascension Health Inc. since 2007 and has served in multiple leadership roles, including president of Dell Children’s Medical Center/Dell Children’s Health from 2013 to 2017. In 2017, he was asked to serve as chief executive officer for the Ascension Texas Accountable Care Network and as senior vice president of network development at Ascension Texas. In his most recent role, Dr. Shen initiated and developed statewide partnership and acquisition opportunities across the pediatric and adult delivery systems, and built a pediatric clinically integrated network of more than 2,600 providers covering 170,000 lives in risk-based contracts across Medicare and commercial payers in central Texas. He also served as the interim chair of pediatrics at Dell Medical School at The University of Texas. “Mark is looking forward to returning full time to his passion of pediatrics as he joins our St. Louis Children’s Hospital team,” says Magruder. “I’m very excited for Mark to join us, and I’m confident he will be a great addition to our outstanding team. Please join me in welcoming Mark, his wife, Bridget, and their two children to our BJC/Washington University School of Medicine family and the St. Louis community.”
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Guardians Magazine Fall 2018
How to help kidsson this Holiday Sea AmazonSmile
Amazon Alexa
Shopping for your gifts online this year? Go to smile.amazon.com, select St. Louis Children’s Hospital Foundation, and Amazon will donate .5% of eligible purchases to Children’s. These small donations really add up and have no additional cost for you!
Alexa and Amazon Pay make it easy to donate through voice. Giving is now as easy as saying, “Alexa, make a donation to St. Louis Children’s Hospital.” Your donation is processed with Amazon Pay using the information already stored in your Amazon account.
It’s the 2018 season of giving! You can do what’s right for kids during the holidays by supporting St. Louis Children’s Hospital with a tax-deductible gift at StLouisChildrens.org/Donate, or through one of the following efforts: Healthy Kids Express Dental program
Tax Credits Are you an individual filing taxes in Missouri?
Fundraise Your Way
Wish List
In lieu of holiday gifts, visit FundraiseForKids.org to create a personalized fundraising page for St. Louis Children’s Hospital, and ask family and friends to support your effort. You can now connect your page to a Facebook Fundraiser, making it even easier to fundraise on social media.
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 e-mail SLCHdonations@bjc.org.
St. Louis Children’s Hospital is pleased to announce that our Teen Outreach Program (TOP) is once again eligible for Youth Opportunity Program (YOP) tax credits for the 2018-19 school year. When you donate $5,000 or more by cash, check, credit card or stock and indicating TOP in the notes or memo, your donation costs less than $0.29 for every dollar donated. Last year, thanks to the generosity of donors like you, nearly 600 kids at four local middle schools completed more than 10,000 hours of community service, helping to build their character and enhance our community.
Are you a small-business owner? Neighborhood Assistance Program (NAP) tax credits for our Healthy Kids Express Dental Van are now available to businesses and individuals who qualify. For a list of individuals who qualify, please visit ded.mo.gov/programs/community/NAP. Qualifying donations of $1,000 or more that indicate Healthy Kids Express Dental in the notes or memos can be applied as tax credits to help supplement Missouri state income taxes. Additionally, Delta Dental has agreed to match all new and increased donations in 2018 to Healthy Kids Express Dental dollar for dollar, up to $100,000. Help us make a difference in the lives of children and families all across the St. Louis region by making a donation to Healthy Kids Express Dental!
For any questions about TOP or Healthy Kids Express Dental, YOP or NAP tax credits, or to reserve your tax credits today, please contact Katie Nelson at 314.273.3460 or Kathleen.nelson2@bjc.org.
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the best care for our kids
The Rankin family
A sister’s gift saves both her brothers The Rankins have a bustling household that includes four children: Camry, 15; Camren, 13; Camari, 11; and Camar, 6. With the mix of ages, squabbles and sibling rivalry would be the norm in most families. But not in this family. The Rankins have a deep, loving bond that makes parents Candace and Rodnick proud— even though the journey to build that bond was difficult and paved with sacrifices.
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wo of their four children—Camren and Camar—were born with sickle cell disease, a chronic, unpredictable and life-threatening disease. Sickle cell disease (SCD) is an inherited disorder that causes red blood cells to become hard and sticky and form a crescent, or sickle, shape. Cold temperatures, stress or simple viruses can trigger severe symptoms such as infections and intense pain. Stroke is also a risk. Ultimately, the disease worsens over time and can affect all parts of the body. While it primarily affects African-Americans, any ethnicity or race can have SCD. Following Camren and Camar’s diagnoses, years blurred together with numerous hospital stays for the boys. Candace estimates the two brothers have been in the hospital at the same time at least 10 to 15 times.
With so much time spent at St. Louis Children’s Hospital, the boys welcomed distractions and often visited the hospital’s donor-funded playroom and the Olson Rooftop Garden. Camren also loved attending Camp Crescent, a summer camp designed just for children with SCD (read more about Camp Crescent on page 12). “St. Louis Children’s Hospital has really helped our family,” Candace says. “They taught me about the disease and gave me routines and a pain plan for my sons.” The Sickle Cell Program at St. Louis Children’s Hospital is the largest program of its kind in Missouri. Monica Hulbert, MD, a Washington University pediatric hematologist-oncologist, is the director of the Pediatric Sickle Cell Disease Program at St. Louis Children’s Hospital. “People with SCD can have many complications and need specialized care,” she says. “It matters to be at a center with the most experience. We assign a primary hematologist to each patient and develop strong relationships with families. I believe this helps us provide better care.” Dr. Hulbert has been Camren and Camar’s doctor for the past seven years and has seen the family through many ups and downs. “Camry and Camar had the same diagnosis, but different manifestations of the disease,” Dr. Hulbert explains. “Camren had more frequent pain, including one of the worst pain crises I had ever seen in a child, while Camar rarely had pain, but his testing showed he was at high risk of stroke.” Both boys were getting sicker quickly. Dr. Hulbert determined they could be candidates for a bone marrow transplant to cure their sickle cell disease if one of their sisters was a match. In a family, each sibling without sickle cell disease has only a 25 percent chance of matching. She encouraged the family to be tested to see if anyone was a match to donate bone marrow. Amazingly, their sister Camari was an ideal match for both Camren and Camar. The Rankins became the first family at St. Louis Children’s Hospital who had two children transplanted from the same sibling. Less than 10 percent of children with sickle cell disease will have a sibling match, and the chances of a sibling match for more than one family member is around 3 percent. However, Dr. Hulbert is careful to point out that most children won’t have a transplant
It’s a hard decision, because transplant has more short-term risks, including a risk of dying from complications. Yet without a transplant, most people with sickle cell disease will only live until their 30s or 40s. The only cure for SCD right now is a bone marrow transplant. Monica Hulbert, MD, Washington University pediatric hematologist-oncologist
because they don’t have a match. In addition, she explains, physicians and families have to balance the risk of transplant with the risk of not having a transplant. “It’s a hard decision, because transplant has more short-term risks, including a risk of dying from complications. Yet without a transplant, most people with sickle cell disease will only live until their 30s or 40s. The only Camar (left) and big brother Camren cure for SCD right now is a bone marrow transplant,” she says. Because Camren was the sickest, he was the first Rankin brother to have a transplant, in July 2017. One year and a day later, Camar also had a bone marrow transplant—all thanks to their sister Camari, who never hesitated to help her brothers Today, Camren is doing well and is looking forward to playing in the snow this winter for the first time in his life. He hopes to become an architect when he grows up. Camar is back to being an energetic 6-year-old, but he won’t be ready to jump in the snow quite yet this winter, since he just had his transplant in July 2018. And Camari, the heroine in this story? Between ballet and violin lessons, she was recently honored through her school after being selected out of hundreds of other children for the “Do the Right Thing” award. In September, she also received an award at the Sickle Cell Association’s Annual Gala for being committed to the cause. In addition, Camari inspired her older sister, Camry, to join the bone marrow donor registry so she can one day help someone else.
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out of the hospital, into our neighborhoods
Reimagining the state of
child mental health Imagine a world where we can respond to mental, developmental and behavioral health issues in a child as rapidly and comprehensively as we respond to pediatric cancer, heart disease or another life-threatening illness. Where parents have a place to turn, not just in crisis, but for everyday support that nurtures and protects them and their child. Where we understand brain biology so well that we can create personalized treatments for every child struggling emotionally or developmentally. A conversation with St. Louis Children’s Hospital psychologist Mary M. Cradock, PhD, reveals her vision for a model of care that improves the quality of life for children with emotional and behavioral health challenges and their families.
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What is the state of child mental health care in our region today? Mary: St. Louis has strong but spotty brain health services, leading to a delay from the time families realize the need and the child receiving meaningful treatment. Very often, these families end up in our emergency department.
How can it be strong but spotty at the same time? Mary: About 20 years ago, Missouri took itself out of the business of delivering community brain health services and began contracting with agencies around the state. BJC Behavioral Health filled that void for the county and some parts of the city. For families living in other parts of the city, there’s Hopewell Center. Jefferson, St. Charles and Franklin counties contracted with their own agencies. These arrangements naturally lead to siloed and fragmented coverage. It has been a mission of mine and our 454-TEEN colleagues to create stronger connections between the hospital, pediatricians in the community and any agency providing brain health support for our region’s kids.
What has been the hospital’s response? Mary: Responding to an urgent request from hospital leadership, the St. Louis Children’s Hospital Foundation Board voted to provide the hospital with $8.5 million to construct an eight bed inpatient psychiatric unit. While this is an important first step, the urgency to provide inpatient care is a clear and undeniable indication that much more must be done to create a system of care for children who suffer from mental illness, developmental disabilities and behavioral disorders.
What is driving this need? Mary: We know that the brain health needs of children are heavily influenced by their environment. And we know our community has challenges in terms of economic strife and the vulnerability of children to experience trauma and adversity. Kids are coming to us with needs of a higher level than we have ever experienced. There also is a funding issue at play. The availability of insurance coverage runs very thin, impacting individual families who may need brain health resources the most. Many of these families have children who struggle with depression as a consequence of a chronic disease.
It sounds like we need to address the array of brain health issues at their earliest stages. Mary: Without question, pediatric primary care physicians embedded throughout the region could be more intentionally mobilized to address the brain health needs of our children, thus addressing problems before they become acute. We actually have a pilot project, funded by the Missouri Foundation for Health, aimed at providing that support with the express interest of helping kids before they need scarce acute psychiatric services. The Missouri Child Psychiatry Access Project (MO-CPAP) delivers free same-day expert child psychiatry phone consultation to primary care providers in Missouri’s seven-county eastern region. This gives them the support they need to connect their patients to the proper treatment services.
It has been a mission of mine and our 454-TEEN colleagues to create stronger connections between the hospital, pediatricians in the community and any agency providing brain health support for our region’s kids. Mary M. Cradock, PhD How can philanthropy help? Mary: What would really help is to support embedding clinical psychologists in primary care pediatricians’ offices. In fact, we have engaged the pediatricians at the St. Louis Children’s Hospital Specialty Care Center in Town & Country as a model to see if it makes a difference in detecting and treating brain health issues before they get to a stage where prescription drugs are needed. Another brain health services model ripe for philanthropic support is intensive outpatient care, also known as partial hospitalization. These programs can help in a couple of ways. They can give a family an alternative to ending up in our emergency department in acute crisis. And, for families with children discharged from an inpatient setting but not ready to return to school, they offer the interim solution of a structured therapeutic setting.
Are you optimistic that the support for children struggling with brain health issues will improve? Mary: I am absolutely optimistic. There definitely has been an uptick of interest in and support for improving the mental and behavioral health landscape in our region. That’s very encouraging and good news for children throughout our region. To learn more about how you can support St. Louis Children’s Hospital’s behavioral health initiatives, please visit StLouisChildrens.org/Giving or call 314.286.0988.
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big advances for our small patients
Saving Caroline In one day, the Marnattis’ world was turned upside down. Their youngest daughter Caroline, age 7, was admitted to the St. Louis Children’s Hospital pediatric intensive care unit (PICU) on Mother’s Day 2018. She was in toxic shock from an infection caused by streptococcus, or strep, and it was impacting her heart, kidneys and lungs.
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he very rapidly progressed from being critically ill to arriving at death’s door,” says Juliane Bubeck Wardenburg, MD, PhD, a St. Louis Children’s Hospital critical care specialist. It quickly became clear that Caroline would need extracorporeal membrane oxygenation (ECMO), an advanced life support technique used for patients with life-threatening heart and/or lung problems. “Research has helped us understand the mechanisms of infection progression at a granular level,” Dr. Bubeck Wardenburg says. “We understand many details about how the bacteria and toxins we fight work. We know that this is something that can be reversed, and that the body is capable of recovering from. In Caroline, we coupled this knowledge with longstanding research and technical innovations that give us the ability to fully support heart and lung function by diverting a child’s circulation through a machine outside that child’s body called ECMO, which is really pretty amazing.” But, she adds, more still needs to be learned about how to avoid complications of using ECMO, such as clotting or bleeding. Only through more research will clinicians be able to understand why some children put on ECMO do much better than other children who need the support. Part of the answer to this question may lie in understanding more about infection and the immune system. “Today, when I talk to parents about putting their child on ECMO, if they ask about likelihood of survival, I tell them that they may have a 50 to 70 percent chance of leaving the hospital,” Dr. Bubeck Wardenburg says. “But actually, some children may have a greater than 90 percent chance of survival, while others may have a very low chance. Right now, I can’t say with any certainty what the actual outcome will be, because it is based on the child’s individual response to disease. Caroline’s case afforded us the opportunity to harness molecular, cellular and technological medicine and apply it to a single child. However, we need more research to deepen our ability to understand disease and best apply interventions to improve outcomes.” Fortunately, Caroline was able to go off ECMO and to pull through her illness. She now is in outpatient rehabilitation through St. Louis Children’s Hospital, and also receives specialized
The integration between clinicians and researchers is profoundly different here, which makes more progress possible. Juliane Bubeck Wardenburg, MD, PhD care in the Neurocritical Care Follow-up Program, the first of its kind in the nation to provide a seamless continuum of clinical care for PICU patients and their families. The program, which just received philanthropic support to expand the ability to follow child development and perform outcomes research, has a primary goal of ensuring that families leave the hospital able to resume their lives to the fullest. “I came back to St. Louis Children’s Hospital and joined the Washington University School of Medicine faculty because this place has an almost magical feel for a physician-scientist,” Dr. Bubeck Wardenburg says. “There is so much investment here in understanding disease and in enabling us to study molecular mechanisms of disease and how they inform the clinical arena. The integration between clinicians and researchers is profoundly different here, which makes more progress possible.” To learn more about how you can support Dr. Bubeck Wardenburg’s work or research like it, please visit StLouisChildrens.org/Giving or call 314.286.0988.
A publication of St. Louis Children’s Hospital
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letting kids be kids
More fun. Less pain.
Camp Crescent delivers Sickle cell disease is a condition of the red blood cells that wreaks havoc on the body and causes debilitating periods of pain. Attacking without warning, sickle cell disease often interrupts what should be the fun, smooth and fluid flow of childhood.
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A camper participates in a healing arts project.
very summer, donor-funded Camp Crescent comes to the rescue. Camp Crescent offers a place where children who have sickle cell disease can be with kids like them, join in many fun activities and learn how to be confident about living with the disease. “So many of our families have told us that they could never be comfortable sending their children off to any other camp,” says Monica Hulbert, MD, medical director of the St. Louis Children’s Hospital Sickle Cell Disease Program. “And that’s understandable. Sickle cell symptoms can occur suddenly at any time. So parents of children with sickle cell live with an incredible amount of uncertainty in how the condition is going to interrupt their child’s everyday life.”
Campers enjoy the chance to go swimming, a rare occurrence for kids with sickle cell disease.
A favorite activity at Camp Crescent—ziplining!
Camp Crescent is free to its campers and combines swimming, crafts and campfires with counselors and medical staff prepared to meet the special needs of campers who are being treated for sickle cell disease. “Many of the kids who come to Camp Crescent have never been swimming,” says Gianna Sparks, a Camp Crescent counselor and student from the University of Chicago. Cold water can trigger a pain crisis, so Gianna and other camp volunteers take precautions like testing the water temperature and making sure the campers take showers to acclimate their bodies. “Teaching them how to do something other kids get to do all the time is so rewarding.”
Teaching them how to do something other kids get to do all the time is so rewarding. Gianna Sparks, a Camp Crescent counselor
Music is therapy as campers record a song related to their experience with sickle cell disease.
To learn more about how you can support Camp Crescent and other programs serving kids with sickle cell disease, please visit StLouisChildrens.org/Giving or call 314.286.0988.
A publication of St. Louis Children’s Hospital
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featured guardian of childhood: Hyundai Hope on Wheels
Driving to end a deadly childhood cancer
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Guardians Magazine Fall 2018
Dr. Todd Druley accepts his Quantum Award from Hyundai Hope on Wheels to fund his research on leukemia.
Every September during National Childhood Cancer Awareness Month, a delegation from the Hyundai Motor Company visits St. Louis Children’s Hospital. The Hyundai Hope on Wheels group is drawn to the Children’s Hospital due to its membership in the Children’s Oncology Group (COG), its high degree of sophisticated technology and innovation, and its physicianscientists’ work to expand the knowledge base of pediatric cancer and improve the standard of care.
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his year, they presented a $1 million Hyundai Quantum Award to Todd Druley, MD, PhD, a Washington University School of Medicine oncologist at St. Louis Children’s Hospital, for his lifesaving transformational research on recurrent acute myeloid leukemia (AML). The Druley lab has developed, validated and applied error-corrected sequencing that is 100 times more sensitive at finding residual leukemia mutations than standard DNA sequencing approaches. AML only accounts for 25 percent of pediatric leukemia cases but accounts for 50 percent of pediatric leukemia deaths. One reason for poor outcomes is the inability to definitively assess the presence of residual cancer cells. Flow cytometry, the test traditionally used for that purpose, is not always sensitive enough to detect lurking cancer cells and cannot link leukemia mutations to precision therapies. Dr. Druley’s team will apply this innovative sequencing technique to more than 1,800 specimens collected by the COG. The promised result is large-scale sequencing that will detect residual AML, which will improve future therapeutic selection and survival for children with AML. At the September handprint ceremony, Dr. Druley was granted his $1 million award by national and local Hyundai representatives. “We have so much to thank Hyundai and our local dealers for, not least of which is the nearly $3 million in transformational philanthropic support that they have provided our outstanding pediatric cancer researchers,” said Malcolm Berry, chief development officer of St. Louis Children’s Hospital Foundation. Berry continued, “Indeed, Hyundai Hope on Wheels stands shoulder to shoulder with our researchers, doctors and nurses in the fight to bring cutting-edge, life-saving treatments to our patients so that we don’t merely guard and preserve their childhood...but so that we can help them reach their true potential.”
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your gift
her future
St. Louis Children’s Hospital is a not-for-profit hospital. Your contribution supports groundbreaking research, exceptional pediatric care and health outreach programs for kids throughout our community. Become a Guardian of Childhood and donate today at StLouisChildrens.org/Mag.