<![CDATA[Newsroom | Children’s Mercy Kansas City]]> (2024)

Summit Homes has broken ground on a home in Spring Hill, Kansas, that will benefit Children’s Mercy Kansas City. Together with their partners, listed below, Summit Homes will donate all proceeds from the sale of the house to advance pediatric mental health at Children’s Mercy.

Through donations and partnerships, Summit Homes plans to build the home as close to zero cost as possible, allowing all proceeds to be donated to Children's Mercy.

“We are so grateful to Summit Homes, and all vendors making this possible, for their commitment to our community and pediatric mental health,” said Rob Steele, Executive Vice President.

The home will be listed for sale in summer 2024 and completed in Fall 2024. This is the second home Summit Homes has built to support Children’s Mercy.

Community champions like Summit Homes and their vendors fuel the Children’s Mercy nonprofit mission to provide excellent care for all children in Kansas City and across the region. Their support powers much-needed life-saving new initiatives, like Illuminate, that will expand mental care access and treatment for youth in Kansas City and beyond.

Many thanks to these Summit Homes for Little Heroes partner vendors:

Shaw Floors, Ferguson Showrooms, Roofs by Aspen, The Rob Ellerman Team, Northcraft Flooring & Design, Stone Creek Midwest, Silverton Mortgage, Shamrock Cabinet, Royal Construction Clean, Premier Building Supply, Timber Ridge Trim Company, Jake Heiser

More information on the Summit Home for Little Heroes

Braden’s Hope for Childhood Cancer held its Hope Connect Annual Research Update on March 21 to celebrate the achievements in childhood cancer research made possible by its donors. Hosted at the Children’s Mercy Research Institute, the event featured Braden’s Hope awards totaling $5.5 million, which includes advancing six collaborative research projects led by teams of investigators from Children’s Mercy Kansas City and the University of Kansas Cancer Center.

Dr. J. Steven Leeder, PharmD, PhD, Interim Executive Director of the Children’s Mercy Research Institute, opened the update by emphasizing the importance of collaborative research funded by Braden’s Hope.

“Thanks to Braden’s Hope our research projects not only include investigators at Children’s Mercy and KU Cancer Center, but those across the US and Mexico. Today, a total of 13 institutions and 42 researchers are involved in Braden’s Hope research projects,” Dr. Leeder said. “This is important because together we are stronger – thanks to Braden’s Hope, we are able to share our knowledge across multiple institutions – with the goal to bring more hope to kids right here in the Midwest.”

Children’s Mercy is the consortium partner with KU Cancer Center—the region’s only NCI comprehensive cancer center. Comprehensive status is the highest level of recognition awarded by the National Cancer Institute and represents the gold standard for cancer centers.

Braden’s Hope funded projects include:

· Advancing new treatment options for children and young adults diagnosed with Ewing Sarcoma—led by investigators Terrie Flatt, DO, MA, and Andrew Godwin, PhD

· Developing targeted therapies for children with a uniquely devastating type of leukemia—led by investigators Erin Guest, MD, John Perry, PhD, and Jay Vivian, PhD

· Identifying drugs that specifically kill sarcoma cells with one Ewing sarcoma Region 1 gene while sparing normal, healthy cells—led by investigators Tomoo Iwakuma, MD, PhD, and Mizuki Azuma, PhD

· Understanding how a tumor’s genetic makeup affects its response to T cell therapy—led by Midhat Farooqi, MD, PhD

· Stimulating the immune system to find and kill cancer stem cells by using a classic chemotherapy drug in a targeted way —led by John Perry, PhD

· Developing a new compound that kills cancer cells lacking p53, an important tumor suppressor found in the body—led by Tomoo Iwakuma, MD, PhD

As part of the update, Deliece Hofen, President of Braden’s Hope, helda panel discussion with the funded researchers who answered questions about their work. Deliece knows first-hand the importance of advancing research for kids. Her youngest son, Braden, battled childhood cancer three times, starting when he was just three years old. During Braden’s second battle with cancer, he faced the words "no known cure" and his odds for survival were less than 10 percent.

“Thankfully, my son Braden has defied all odds and is now living cancer-free; however, he lives with many long-term health complications based on the harsh treatment he received at such a young age,” Hofen said. “Our goal at Braden's Hope, is for all families to receive the best, cutting-edge treatment available, without having to leave Kansas City. We want to give children and families diagnosed with cancer, hope for a future because no family should ever have to hear the words: no known cure.”

Children's Mercy Research Institute

The nation’s youth are facing an unprecedented mental health crisis. More than 15 million children need mental health services, but only 30 percent receive care. In the Kansas City region, those numbers are higher, with 40-50 percent going untreated. This year all donations on Giving Tuesday will light the path forward to help fund, Illuminate, our comprehensive initiative to address the mental health needs of children in our community – four strategies, 14 projects, impacting more than 80,000 kids – the largest of its kind in the region.

Every day, dozens of children come to the Emergency Department at Children’s Mercy due to a behavioral health crisis. Children like Elizabeth. Elizabeth was diagnosed with ADHD and anxiety as an elementary school student, but her conditions were exasperated by the pandemic and a spiraling crisis led to a trip to the Children’s Mercy emergency room, except there was a problem – there were no hospital beds available for intensive inpatient treatment in a 150-mile radius of Kansas City. Elizabeth finally got the care she needed, and today she is a vibrant high school freshman. But her story reminds us why each aspect ofour comprehensive mental health plan is critical for our community’s children.Watch Elizabeth’s full story.

Your donations can go twice as far to help kids like Elizabeth. All gifts received on Giving Tuesday will be matched $1 for $1 until we reach $100,000.

Join us today to double your impact!

Children’s Mercy formally invested five endowed faculty positions in the fields of healthy lifestyles, clinical pharmacology, neurology, surgery and developmental and behavioral health at the Fall 2023 Investiture Ceremony on Tuesday, October 24, 2023.

The Children’s Mercy Research Institute was the perfect setting to celebrate the elevation of this esteemed group of clinicians, researchers and leaders to academic medicine’s highest achievement and the generous donors who made these endowed positions possible.

Philanthropy has powered the hospital, treatment and cures for children for more than 125 years. Thanks to our philanthropic community, Children’s Mercy has more than doubled its total number of endowed chairs - bringing more answers to children and families when they need them most!

“Through extraordinary donor investment, endowed positions provide ongoing financial support to advance excellence in pediatric medicine, research and teaching, while elevating the academic profile of Children’s Mercy and its stature as a national leader,” said Paul Kempinski, Children’s Mercy President and CEO, Alice Berry, DDS, and Katharine Berry, MD, Endowed Chair in Executive Leadership. “The impact: best-in-class experts and care for children and families who call Kansas City and our region home.”

Honorees

Sarah E. Hampl, MD

Kemper Endowed Professorship for Healthy Lifestyles

Bridgette L. Jones, MD, MSCR

Marion Merrell Dow/Missouri Endowed Chair in Pediatric Clinical Pharmacology

Jean-Baptiste Le Pichon, MD, PhD, FAAP

Madison Lauren Sargent Endowed Professorship in Neurology/Angelman Syndrome

Tolulope A. Oyetunji, MD, MPH, FACS, FAAP

Thomas Holder/Keith Ashcraft Chair in Pediatric Surgical Research

Shayla A. Sullivant, MD

Joy and Stewart Koesten Endowed Professorship in Developmental and Behavioral Health

Learn more about the honorees and donors

Thank you to the Kemper Family Foundations, UMB Bank, n.a. Trustee, the Marion Merrell Dow Foundation, Fred Lyons, Ed Connolly, Patrick and Laura Sargent, Maddie’s Mission Foundation, The Shaw Family Foundation, Thomas Holder and Keith Ashcraft, and Joy and Stewart Koesten for their visionary leadership and generosity in establishing these vital positions for the continued work of building a world of well-being forallchildren.

Children’s Mercy Kansas City formally invested five endowed faculty positions in the fields of cardiology, neonatology, orthopedic surgery and molecular medicine at the 2023 Investiture Ceremony on Wednesday, April 19, 2023.

The Children’s Mercy Research Institute was the perfect setting to celebrate the elevation of this esteemed group of clinicians, researchers and leaders to academic medicine’s highest achievement and the generous donors who made these endowed positions possible.

Philanthropy has powered the hospital, treatment and cures for children for more than 125 years. Thanks to our philanthropic community, Children’s Mercy has more than doubled its total number of endowed chairs - bringing more answers to children and families when they need them most!

“Through extraordinary donor investment, endowed positions provide ongoing financial support to advance excellence in pediatric medicine, research and teaching, while elevating the academic profile of Children’s Mercy and its stature as a national leader,” said Paul Kempinski, Children’s Mercy President and CEO, Alice Berry, DDS, and Katharine Berry, MD, Endowed Chair in Executive Leadership. “The impact: best-in-class experts and care for children and families who call Kansas City and our region home.”

Honorees

Aliessa P. Barnes, MD

The Melva and Randall L. O’Donnell Chair in Pediatric Cardiology

Steven Olsen, MD

Swatek Family Endowed Chair in Neonatology

Jon Wagner, DO

Matson Family Endowed Professorship in Cardiology Research

Norman Y. Otsuka, MD, MSc, FRCSC, FAAP, FACS, FAOA

Dr. Brad and Dawn Olney Chair in Pediatric Orthopaedic Surgery

Rangaraj Selvarangan, PhD, BVSc, D(ABMM), FIDSA, F(AAM)

William R. Brown/Missouri Endowed Chair in Medical Genetics and Molecular Medicine

To learn more about the honorees and donors, please visit 2023 Investiture Ceremony (office.com).

Thank you to Dr. Randall and Melva O’Donnell, Ken and Mary Matson, Steve and Kathy Swatek, Dr. Brad and Dawn Olney, and William R. Brown for their visionary leadership and generosity in establishing these vital positions for the continued work of building a world of well-being forallchildren.

“Pediatricians like to say children are not little adults, and accordingly, pediatric cancer is not just the miniature form of adult cancer,” says Midhat Farooqi, MD, PhD, Director of Molecular Oncology, Genomic Medicine Center atChildren’s Mercy Kansas Cityin Missouri. Historically, less attention and expertise have been devoted to researching cancer in children than adults, but Children’s Mercy is helping lead the effort to change that.

From its humble beginnings in 1897 with just one bed, the hospital has grown to 390 inpatient beds and 16 locations. It had 14,345 pediatric admissions in 2022—60% of them for patients less than 10 years old—who traveled to the hospital with their families from all 50 US states.

Children’s Mercy also pursues leading-edge research. In 2015, it established the Children’s Mercy Research Institute, founded and led by Tom Curran, PhD, FRS, Senior Vice President, Executive Director, Chief Scientific Officer, and Donald J. Hall Eminent Scholar in Pediatric Research. The Institute supports the launch of ambitious initiatives like Genomic Answers for Kids (GA4K), headed by Tomi Pastinen, MD, PhD, Dee Lyons/Missouri Endowed Chair in Pediatric Genomic Medicine.

The program’s goal is to sequence 30,000 children and their parents, and it just passed the milestone of providing more than 1,000 rare disease diagnoses to families; it largely addresses cases of rare genetic disease, but, as Farooqi points out, “Pediatric cancer is also a rare disease,” and the program is enrolling cancer patients as well.

Currently, the hospital is conducting 137studies and trials—49 of which are in oncology—and developing databases that are crucial for research. In 2017, Erin Guest, MD, Director of the Children’s Mercy Cancer Genomics Program, and Alexander Kats, MD, Director of Nephropathology and Transplantation Pathology Services, set up a pediatric oncology biobank for storing both solid tumor and leukemic samples. This biobank is now part of the Research Institute’s CAP-accredited Biorepository, which is overseen by John David Nolen, MD, PhD, Chair of the Department of Pathology and Laboratory Medicine.

To date, over 500 patients have enrolled and Farooqi and his team have performed whole-genome and whole-exome sequencing on 200 of them. Children’s Mercy, which is the pediatric consortium partner of The University of Kansas Cancer Center, was awarded a grant from the National Cancer Institute to share this genomic data as part of theChildhood Cancer Data Initiative. Farooqi explains, “Collecting and sharing data nationally and beyond is really important for pediatric cancer because the numbers are low—it can take a few years for the university to register a dozen children with a single tumor type, whereas for adults, let’s say, the same number of cases could be accrued within a month. If we all work together, we can amass higher numbers of rare tumor types within pediatrics as well.”

Read the full article via Illumina

Children's Mercy Kansas City Research Institute

Research Areas

Change is complex and requires analysis, strategy, and consistency. When lofty goals are active and in play, such as being the best pediatric hospital in the country, it is necessary to lead with intentionality, dedication, and accountability. For Michelle P. Wimes, JD, SVP, Chief Equity and Inclusion Officer atChildren’s Mercy Kansas City, improved health equity practice is the chance to level up patients’ and employees’ experience.

DEI and health equity are far from new concepts in corporate America, and intentionally, more progressive organizations like Children’s Mercy committed to DEI more than a decade ago. Although Wimes entered a mature DEI ecosystem when she started at Children’s Mercy, there is a different method she aims to bring. “I was thrilled to see people engaged throughout that ecosystem. I want to amplify their efforts with more evidence-based improvements and metric-driven accountability,” Wimes said. To quantify the organization’s effort, she is developing objectives around four key areas: workplace, workforce, marketplace, and community.

Read the full article and watch the video via BioNexus KC

Diversity, Equity and Inclusion at Children's Mercy

Four-year-old Maddie loves cheese and fruit snack gummies, being right in the middle of the action, and playing with her twin sister, Kellie, and older brother, Colin. When she was diagnosed with Angelman syndrome, it changed the course of her family’s life forever, setting them on the path to help launch the area’s first Angelman Syndrome Clinic at Children’s Mercy.

“She is the happiest kid you’ll probably ever meet,” said her dad, Patrick Sargent. “The smiles she exudes is what gives everybody their energy to get through a lot of the hard stuff.”

What is Angelman Syndrome?

Named after the physician who discovered the disorder, Angelman syndrome is a rare genetic disorder caused by a mutation in the UBE3A gene on the 15^th chromosome. Children with Angelman syndrome are known for their generally positive demeanors. They also have developmental delays, trouble with movement and balance, and speech impairments. Many experience seizures and a wide range of other symptoms and complications.

“Maddie is nonverbal, but she’s incredibly communicative,” said her mom, Laura Sargent. “Her physical development has been really impacted by where her deletion is. We were told she likely wouldn’t walk. She walked! She’s starting to climb stairs.”

After her diagnosis at Children’s Mercy in January 2020, Maddie’s family went to Chicago and Boston to seek out Angelman syndrome specialists. Over the years, they’ve developed “an army of caretakers.” Laura, a pediatric nurse practitioner who formerly worked at Children’s Mercy, has been instrumental in seeking out the best treatment for Maddie and navigating the insurance labyrinth.

“Having a background in health care has been immensely helpful,” said Laura. Maddie currently attends a therapeutic pre-school five days a week; has physical, speech and occupational therapy three days a week; aquatic therapy twice a week; and one-on-one Applied Behavior Analysis (ABA) therapy in-home. Despite being happy with the specialist care they were receiving out-of-state, they were longing for expert help closer to home.

“Maddie was hospitalized at Children’s Mercy in July of 2021,” Laura said. “While we had these wonderful specialists in Denver and Boston that could be a phone call away, they weren’t in the hospital. When Maddie needs emergent care, I can’t pick her up and take her to Boston. I can’t take her to Denver. I needed somebody at Children’s Mercy.”

Patrick agreed, adding that even getting to regular annual appointments was challenging enough.

“It’s not easy to travel with special needs kids, especially when you’re taking a 3+ hour flight or 8+ hour drive,” Patrick said. “Logistically, it’s tough.”

The Sargents began meeting other Angelman families in the area and found many didn’t have the resources to travel to specialists or were struggling with the insurance process. “In some cases, their kids just weren’t getting care, and that’s heartbreaking,” said Patrick.

The Sargents wanted more for Maddie, and they wanted more for her peers in the area. So they decided to do something about it: explore starting an Angelman Syndrome Clinic at Children’s Mercy.

Collaborating for Better Care

The Sargents started a nonprofit, Maddie’s Mission, and held a block-party fundraiser. They met with Diane and Terry Gallagher, whose daughter, Elizabeth, also had Angelman syndrome, to discuss their shared passion for supporting care and research. They talked to their contacts at the Angelman Syndrome Foundation.

Meanwhile, the Children’s Mercy Enterprise Program Management Office (EPMO) was doing its own research, confirming the need for an Angelman syndrome clinic in the area. There was indeed a big gap in coverage: families with the means were traveling all day to get to specialty clinics; families without were making do. Children’s Mercy was already on a path to creating a solution and philanthropic support could accelerate making it happen….a win-win situation!

Gifts from the Sargents, Maddie’s Mission, the Gallaghers, and the Angelman Syndrome Foundation created funds, including one that is endowed, to support a new Angelman Syndrome Clinic and Angelman syndrome research efforts. (If Angelman syndrome is cured in the future, the funds will shift to support other neurology and rare disease needs.)

“The passion of the Sargent Family has been extremely moving. The impact their caring philanthropy will have on patients and families visiting the Angelman Syndrome Clinic and seeking research-based answers is astounding,” said Kate Migneron, Director, Philanthropic Giving. “In addition to the funds for the clinic, having an endowed fund means it will live at Children’s Mercy forever and says we’re going to have this care here for the long run. That means a lot to patients and their families.”

“A True Partnership”

J.B. Le Pichon, MD, PhD, FAAP, Professor of Neurology, has made collaboration a priority in his career, working with Nigerian physicians on research and partnering with community physicians and families to bring epilepsy care to rural areas of Kansas through Project REACT.

“I’m really interested in these types of partnerships where it’s not purely physician driven,” said Dr. Le Pichon. “There is a true commitment, and everybody’s involved.”

Based on families’ needs, The Angelman Syndrome Clinic at Children’s Mercy is designed to be a medical home for area patients and a hub for innovative new research on the disease.

“A medical home is where all of the child’s needs are addressed,” said Dr. Le Pichon. “You see the child as a whole. That’s really important for children with Angelman syndrome because their needs are so broad.”

The monthly, half-day clinic is based in Neurology and hosts 17 patients already. Every patient is seen by Dr. Le Pichon, and the clinic coordinates visits to participating subspecialties (Genetics, Nutrition, Gastroenterology, Orthopedics, Speech and Language Pathology, Developmental and Behavioral Health, and Physical and Occupational Therapy) according to each child’s needs.

“Every child who enters the clinic will be offered the option of participating in a research study,” said Dr. Le Pichon. In addition to Children’s Mercy Research Institute’s Genomic Answers for Kids study and an effort to study Angelman syndrome’s phenotype expression based on genotype, Dr. Le Pichon has identified several therapeutic studies that he and the clinic’s Patient Family Advisory Council will review for potential integration.

“Parents are going to have a real say in terms of what [research we pursue],” said Dr. Le Pichon. “I'll be presenting to them, and then we’ll be making the decision together.”

Hope for the Future

Other institutions are conducting promising research on Angelman syndrome, and the Children’s Mercy Research Institute is eager to join the effort.

“I think we have the potential to become a center of excellence for Angelman syndrome,” said Dr. Le Pichon, agreeing. “In order for that to happen, we are planning to develop some solid research through the CMRI.”

Patrick echoed them, saying that there is hope for a cure one day. “Access to research is a game-changer not just for us, but for families in Omaha, Des Moines, Arkansas, all of Kansas, all of Missouri.”

Being able to participate in innovative studies is just one aspect of the well-rounded care the clinic provides. Young people with Angelman syndrome now have a home at Children’s Mercy, where they can get expert, holistic, consistent care. “And be home for dinner right after your appointment!” Patrick said.

“I hope that all the kids that have Angelman syndrome in the region have access to the same level of care that Maddie has,” said Laura. “We would love everyone to have equal access.”

Angelman Syndrome Clinic at Children's Mercy

By Abby Moog & Ingrid Larson

The national crisis in children’s mental and behavioral health has caused a rise in admissions atChildren’s Mercy Kansas Cityin those patient populations, leading to increased escalations and more frequent and severe staff injuries. In response, the hospital created an improvement team and launched a 90-day sprint to address the growing problems. The initiative achieved substantial reductions in staff injuries, patient self-harm, and the use of restraints with behavioral health patients.

The initiative was based on the Rapid Results framework, a method for getting results in under 100 days. Children’s Mercy set three goals:

• Reduce the total use of pharmacological and physical restraints by 25%.
• Reduce the risk for self-harm in patients with suicidal or homicidal ideation by 20%.
• Reduce reported physical staff injuries related to behavioral health patients by 30%.

The goals were executed by three workgroups within the behavioral health rapid improvement team (BHRIT) focused on specific areas: patient cohorting and unit staffing, staff education and training, and staff support. The workgroups were led by a doctor/nurse dyad leadership structure and supported by an administrative sponsor. BHRIT overall was also supported by an executive sponsor, a coach and a communications and marketing specialist. The team represented a variety of disciplines and levels of staff, including nursing, social work, regulatory, child life, psychology, psychiatry, local leaders and frontline staff.

Read the full article via the Children's Hospital Association

Developmental and Behavioral Health at Children's Mercy

Mental Health Resources

Children's Mercy Facility Dog Program Coordinators Melanie Weinrich and Bailey Wetzel recently participated in a local podcast, Dog Words. Dog Words is hosted by Phillip Hatterman, and is made possible by the Rosie Fund, a rescue organization here in Kansas City.

On the podcast, Melanie and Bailey explain the roles they play as facility dog program coordinators at Children’s Mercy. They also speak in detail about the program, and how the facility dogs are implemented into patient care.

Hear the podcast via Rosie Fund

Children's Mercy Facility Dog Program

Michelle Wimes, JD, SVP/Chief Equity and Inclusion Officer, has been named the recipient of the inaugural Tulane University Law School Deans Kramer & Clayton Award for Leadership in Equity, Diversity and Inclusion.

The award was created to recognize exemplary impact in advancing the cause of access and inclusion in the legal profession. The Tulane Law announcement describes Michelle as, “A nationally recognized expert on professional development, diversity and inclusion in the workplace.”

Michelle became the first Chief Equity and Inclusion Officer at Children’s Mercy Kansas City in 2020. She leads the DEI efforts of the hospital's 9,000-employee base over 18 locations. In less than two years, she has conducted the hospital system's first Diversity Workforce Assessment, developed CM’s inaugural DEI Strategic Plan, and developed innovative health equity initiatives to address homelessness, food insecurity, and anti-racism in Kansas City.Michelle continues to be an active leader at Tulane and other institutions as a mentor to law and medical students and as a leader in innovative pipeline and pathway programs to open both the fields of law and medicine to underrepresented students.

Prior to joining Children's Mercy, Michelle worked for 14 years in three AmLaw 100 firms, practicing all aspects of employment litigation, and serving as an equity partner at a Kansas City-based firm. She focused on matters involving employment discrimination, harassment, and civil rights issues while representing clients before administrative agencies and courts.

Michelle will receive the award on Feb. 5 at the Tulane Black Law Alumni Reunion at Tulane University’s Yulman Stadium in New Orleans.

The award is named in honor of John Kramer and Robert Clayton, whose passionate leadership in the cause of racial equity and justice helped to transform Tulane Law School.Dean Kramer was Tulane Law School’s 19th Dean and served from 1986 to 1996; Kramer recruited Robert Clayton to serve as Assistant Dean of the Law School and the founding director of Tulane Law’s pioneering Minority Access Program.

Called a “pandemic within a pandemic,” the prevalence of anorexia nervosa (AN) among young people has spiked during COVID-19. According to research, in-patient interventions are effective for up to 75% of adolescents with AN. However, about 30% of these teens relapse following recovery in the “post-acute treatment window” as they return to their day-to-day lives.

“We know anorexia nervosa is one of the deadliest mental health conditions a person can have, and we also know that interventions tend to work best in youth,” said Kelsie Forbush, professor of clinical child psychology and director of theCenter for the Advancement of Research on Eating Disorders(CARE) and theCenter for Overcoming Problem Eating(COPE) at KU.

To improve outcomes and improve access to care for adolescents in this window of vulnerability to relapse, Forbush is leading a three-year clinical trial by researchers at the University of Kansas and Children’s Mercy Kansas City to assess a suite of new digital mHealth tools, dubbed Smart Treatment for Anorexia Recovery, or STAR.

The STAR intervention, developed by Forbush and her collaborators, will assist outpatient community therapists by providing them with support tools to assess and treat clients ages 13-21 during this post-acute treatment window. The randomized controlled trial will enroll 129 participants with AN and AN-related conditions (such as atypical anorexia nervosa, where AN traits are present but a body-mass index measure might be too high for a classic AN diagnosis). A pilot trial of usability and acceptability, already underway, is showing positive results.

Their work is supported by a new $700,000 award from the National Institutes of Health. Centers involved in this network include McCallum Place – Kansas City and St. Louis, InSight, Children’s Mercy Eating Disorders Center and the Eating Recovery Center in Denver.

“The majority of teens coming home from residential care are returning to communities without eating disorder specialists,” said co-primary investigator Sara Gould, director of theEating Disorders Center at Children’s Mercy Kansas City. “This project has the potential to hugely increase access to proven interventions and to track teens’ response to the intervention."

Read the full release via The University of Kansas

Like many other pediatric hospitals around the country, we are seeing an increase in children's respiratory illnesses which has resulted in a higher number of patients and longer-than-normal wait times in our Urgent Care and Emergency Department locations. To provide extra support to patient families and staff, there are many ways to join our Children’s Mercy Community of Champions, making a difference not only at the holidays, but throughout the year.

Match Your Giving $1 for $1

Today is Giving Tuesday! For anyone considering making a financial donation to Children’s Mercy, this is a great time to give because your gift will go twice as far. For a limited time, The Jackson Family, The Roark Family Foundation and a group of our community champions are matching all gifts up to $188,000 until Dec. 31.

Give today: childrensmercy.org/helpkids

Gifts of Clothing, Snacks and Toys

“To relieve some of the stress families and staff are experiencing, your generosity ensures every child spending the holiday season in the hospital will receive a gift and comfort items, making their stay a little easier and allowing all to focus on what matters most – bringing hope and healing to the thousands of children we serve each and every day.” said Jenea Oliver, Chief Development Officer.

In lieu of hosting an in-person gift drive, rally your friends, neighbors and families by creating an online virtual toy drive fundraising page. You can set up a page, select a fundraising goal and invite your friends, family and colleagues to join you. All proceeds are used to purchase our most needed items―toys, games, snacks, clothing, crafts and more.

Give Backs Around Our Community

Purchase an Item

Charlie Hustle will be selling a Giving Tuesday Communi-Tee and DEMDACO is selling Giving Bears with a percent of proceeds benefiting Children’s Mercy. Both are great gift options for others or a way to treat yourself while giving back!

Experiences

Visit holiday drive-through experiencesWinter Magicin Historic Cliff Drive andHoliday Light and Magicin Wyandotte Parkto enjoy winter wonderland with your family and friends - plus, support patients and families by adding a donation to Children's Mercy at checkout.

Heading to Crown Center this holiday season? Stop by the Giving Machine near the ice terrace and select an item to donate to Children’s Mercy through the red giving vending machine.

We invite you to join our Community of Champions in a variety of ways! Whether your gift helps provide a diagnosis that wasn’t available yesterday through cutting-edge research, trains a new nurse, or provides a cozy blanket to a sick child, giving to Children’s Mercy helps families when they need it most.

Learn more: www.childrensmercy.org/give

Thank you for Dreaming Big with us! Last Saturday, more than 2,000 friends joined together at Crown Center Square for the first time in-person to celebrate hope and healing with Children’s Mercy at Dream Big Day.

Participants celebrated with a 1-mile walk to the Field of Dreams in Hospital Hill Park in front of the Children’s Mercy Research Institute, where attendees shared their dreams for kids in a unique art display. After the walk, kids, families and friends enjoyed free family-fun activities, such as face painting, balloon artists, a silent disco, a drum safari, and much more at the Dream Big Family Fest. A highlight were 10 reunions where more than 800 patient families had the opportunity to interact with their former physicians, nurses, care teams and each other!

“The Children’s Mercy Heart Center team had the most amazing time reconnecting with our patients and their family members! It’s such a joy to be able to see our patients outside of the hospital setting, enjoying time with their family and having fun engaging in new experiences like Dream Big Day! We are really looking forward to next year’s event,” said Erin Perez, LCSW, Heart Center Thrive Program Manager.

Check out the Dream Big Day video and photo album for a peek at the event if you weren’t able to join.

Together, 165 teams raised $255,000 for Children’s Mercy to ensure kids are healthy to chase their big dreams!

Special thanks to our sponsors for dreaming big for kids: Crown Center, Ameristar Casino Kansas City, Anthony Plumbing, Heating, Cooling & Electric, Compass Minerals International, Constance M. Cooper Charitable Foundation, Hallmark Cards, Inc., The Perry Family, The Jackson Family, Kiewit, American Century Investments, The Anderson's Inc., Dean Coughenour Trust, Evans Evco and Kansas City Parks & Rec.

Thank you to all who joined us to help provide hope, cures, and answers for kids in Kansas City and beyond!

Children’s Mercy Kansas City has raised $1.4M to support 14 research projects through an innovative “Shark Tank” approach with a group called Mercy Research Partners. Each year, through an application and scientific committee review, researchers are selected to pitch their projects to the Mercy Research Partners members at a Pitch Party. The members then vote to select projects to fund each year.

“We are excited to see research and the potential for innovation come to fruition locally, as well as the ability to have a hand in it. We look forward to providing researchers an alternative outlet for funding for future endeavors together!” – Tim and Elizabeth Chilcote, Mercy Research Partners donors

During the event on June 9, six researchers pitched their projects with the hopes of receiving funding. At the end of the evening, the Members voted to select four research projects to receive funding from their 2022 investment pool of nearly $630,000.

“It was such a privilege to take part in this funding process. The four winning projects will change lives, we have no doubt.” – Marc Radasky and Cary Randolph Fuller, Mercy Research Partners donors

This innovative model allows donors to connect with and fund research in a new way and brings Children’s Mercy researchers face-to-face with potential funders for coaching and investment.

Congratulations to this year’s winning pitches:

Todd Bradley, PhD – Immunogenomics

Respiratory syncytial virus (RSV) infections in children under 5 years old leads to 2.1 million doctor visits, and 58,000 kids are hospitalized as a result of severe disease each year in the United States. Unfortunately, RSV causes 100-500 deaths in children under the age of 5-years-old each year. There is no current vaccine to prevent RSV infection approved for use, and there are no targeted antivirals for use during RSV infection. Dr. Bradley is harnessing the antiviral power of breast milk and mRNA technology to develop RSV therapeutics for children and adults which will not only save lives, but lower costs associated with long hospital stays.

Susana Chavez-Bueno, MD - Infectious Diseases and Rachel, Gastroenterology

Countless newborn babies across the globe suffer from blood stream infections that place their lives at risk. The pathogens that cause these infections typically reach the baby through the genital tract of the mothers.There are currently few options to prevent these infections; however, Dr. Chavez-Bueno and Dr. Chevalier believe they have discovered a new therapeutic strategy to help prevent infections with a common bacterium responsible for these infections, Escherichia coli.

Emily Farrow, PhD, CGC – Genomic Medicine Center

One of the most common conditions in infancy, congenital hypotonia, occurs in 0.8/1,000 births and yet presents substantial testing challenges in newborns. Hypotonia itself is a non-specific finding and may be due to numerous underlying conditions, including metabolic, endocrine, genetic, acute illness, or hypoxic ischemic encephalopathy, complicating a timely diagnosis. Dr. Farrow and her team have established diagnostic signatures for some of the most challenging DNA variants causing hypotonia to improve diagnoses for families.

Jay Vivian, PhD – Clinical Genetics

Vici Syndrome is a devastating genetic disorder that often robs children from making it to their 5^th birthday. At present, there are no treatment options for these children. A team led by Dr. Vivian is studying the effectiveness of drugs identified in his lab, in the hopes of accelerating the identification of treatment options for children with Vici syndrome and other deadly rare diseases.

Learn more about how philanthropic support is impacting groundbreaking research at our new Children’s Mercy Research Institute

On Wednesday, June 8, Sporting Kansas City Academy’s Patterson Cup was in full swing at Swope Soccer Village.

Two Children’s Mercy Sports Medicine Center athletic trainers assigned to Sporting Kansas City Academy, Karan Padmakumar, MS, LAT, ATC, and Payton Jensen, ATC, LAT, CSCS, were both working on Victory Field.

Karan was in the medical tent while Payton was with the Academy’s U14 team as they battled Nashville’s club. The second half of the match was just beginning. Referee Mark Kinch, a staple at Academy matches for the past several years, prepared to blow the whistle to signal the start of play. He took a couple steps and then fell face forward.

Jorge Santana, athletic trainer for the Nashville side, was first to reach Mark. Payton joined him seconds later.

“When we arrived, he was actively seizing,” said Payton.

He and Jorge rolled him onto his side, stabilized his head and signaled to Karan and other staff to contact Emergency Medical Services. Mark continued to seize for five or six minutes. Payton and Jorge monitored his pulse and began CPR when he lost pulse and became cyanotic.

“We opened the airway and started compressions,” said Payton. “Luckily we had an AED onsite.”

Karan had seen Mark fall from a distance and ran over with the automated external defibrillator (AED), which is standard medical equipment for Sporting Academy but not often on-hand at other youth soccer clubs around the country.

As Payton and Jorge began setting up the AED, Karan began calling 911 and started implementing their emergency action plan (EAP), including removing players from visibility and opening gates so EMS could arrive quickly. Another Children’s Mercy employee, Lisa Wedel (MS, APRN, CPNP-PC), was on site because she’s an Academy host parent. She ran to help and was instrumental in getting Mark the care he needed.

“That emergency action plan is standard for [Sporting Kansas City Academy] but not for everyone,” said Karan. “That’s the message we want to get across: These things we had set in place really made a difference.”

Payton agreed. “It’s not only having the plan, but everyone knowing what to do,” he said. “Having a team that is cohesive and who knows their roles is super important in an emergency situation.”

Payton and Jorge went through three cycles of CPR and administered one shock before EMS arrived. Karan met the truck as it arrived and debriefed them on Mark’s condition.

“Once they came, EMS took over the situation. We were able to inform them of everything that we’d already done,” Payton said. “When I explain it, it sounds like it happened in the blink of an eye, but it felt much longer when in the situation.”

“Time just disappears when you’re in a situation like that,” Karan agreed.

“This was so well controlled,” said Lisa. “No one panicked. Karan and Payton acted like they had run this scenario a thousand times. I was so incredibly impressed with Karan, Payton, and all of the SKC Academy staff involved with how they worked together to get Mark the help he so clearly needed.”

Karan and Payton worked with the Academy’s referee assigner to track down Mark’s emergency contacts, so his loved ones could meet him at the hospital. Mark's family kept Karan and Payton updated on his condition in the days that followed.

“The first thing I remember is waking up in a hospital room around 4 p.m. the next day,” said Mark. “It still feels pretty surreal.”

Mark’s family has some history of heart disease, but he had no warning signs before his heart attack. He had worked from home earlier that day, then arrived early for the 5 p.m. match feeling normal and ready to ref. He is especially grateful that the cardiac event happened on the field with professionals with medical training nearby.

“With me working remotely, if it had happened at home, I wouldn’t be talking to you,” Mark said.

Mark said he’s going to pay much more attention to what on-site medical care is available at games in the future. He’s seen his share of broken bones and concussions on the pitch, but never a health event like what he experienced.

“Part of my annual [referee] recertification is safe sport training,” Mark shared. “Some of that is recognizing the signs of cardiac arrest. I never imagined I’d be witnessing it—or be the one it happened to.”

Many people don’t realize the breadth of knowledge athletic trainers possess, including being able to provide emergency care. From injury evaluation to rehabilitation to being the liaison between players and other medical providers, athletic trainers are on the front lines of sports medicine. While traveling, athletic trainers are doing everything from monitoring players’ colds to making sure kids with allergies are getting the medicine they need.

“Every aspect of healthcare you can think of for these kids, we’re touching in some way,” Karan explained.

Athletic trainers must go through accredited programs and most hold master’s degrees; all are board certified and state licensed.

“We serve as a primary healthcare professional for these athletes, 24/7,” said Karan. “We are there for every practice, every game...we’re trained in emergency care to ensure that in an emergency like this, there’s a trained professional around.”

Mark’s doctors told him that fast thinking and immediate action by Karan, Payton, Jorge and others not only saved his life but protected him from brain damage. Mark is now out of the hospital, resting and beginning cardiac rehab. He would like to return to refereeing after his recovery is complete.

“I’m very, very grateful for their quick response,” said Mark. “The fact that I’m still here is because of them.”

“Our athletic trainers are incredibly skilled health care professionals who perform an invaluable service in the community,” said Dr. Kevin Latz, Chief, Section of Sports Medicine. “Their skill set is often under appreciated. We are blessed to have Payton and Karan representing Children’s Mercy Hospital.”

Children's Mercy Sports Medicine Center

Kansas City Chief Orlando Brown Jr. knows personally the devastation Type 1 Diabetes (T1D) can have on individuals and families, and on Monday, June 20 he came to Children’s Mercy Kansas City to have blood drawn to enroll in a study designed to slow and prevent progression of the disease.

“My brother was diagnosed with Type 1 Diabetes in fifth grade, my father passed from ketoacidosis, and both of my dad’s parents passed from diabetes as well, so this is a cause that hits home for me,” Brown said. “I think it’s very important to raise awareness.”

Relatives of people with T1D are 15 times more likely to develop the disease. Orlando’s father, who also played in the National Football League, died at age 40 from diabetic ketoacidosis, never knowing he had the disease. Orlando, now himself the father of a young son, said, “I worry about him and his safety, and I want to be here a long time to continue to watch him grow.”

Children’s Mercy is one of 26 T1D clinical centers for TrialNet, an international study that screens high-risk individuals learn more about how T1D develops and explore ways to prevent. Orlando’s blood will be analyzed and become part of the study’s research data base.

TrialNet study testing criteria is based on familial relationship. To qualify for screening, candidates must:

· Have a first-degree relative (mom, dad, sibling) living with T1D and be 2.5 to 45 years old, or

· Have a second-degree relative (uncle, aunt, cousin) living with T1D and be 2.5 to 20 years old.

Screening for risk of developing T1D is accomplished through a simple venous blood sample when collected in-person. If a participant conducts the blood test at home, they receive a finger-poke to be collected and sent through the mail. CM will test anyone who meets the criteria above.

“Our goal is a future without T1D,” Dr. Mark Clements, Children’s Mercy Pediatric Endocrinologist said. “This is a global disease, affecting children and adults alike. It’s a disease that requires an incredible burden of self-care, with glucose monitoring and insulin doses multiple times a day. Our goal in TrialNet is to see if we can develop new medication that can help reduce the burden for individuals living with it, for their family members who are at risk and for the entire community.”

Brown said his hope is to inspire others, “For those that are eligible, I hope you’ll enroll in the study by getting your blood drawn - it really was easy - or join me by donating to Children’s Mercy to further this important research.”

To learn more about the study visit: Children’s Mercy Type 1 Diabetes TrialNet.

To donate visit: support.childrensmercy.org/KC57.

Six years ago, Sydney Parker was a healthy 15-year-old sophom*ore who loved softball when a severe case of pneumonia sent her to the hospital.

She had been sick at home for a week, and despite taking antibiotics, she was getting worse. Finally, her father took her to Children’s Mercy Hospital Kansas. Soon after, she was admitted to Adele Hall, where she was transferred to the Pediatric Intensive Care Unit (PICU) with respiratory failure. “I remember going in the ambulance,” said Sydney. “I remember that night, I felt like I couldn’t breathe, I felt like I ran really fast and couldn’t catch my breath.”

Her condition worsened, with fluid filling her lungs. She was intubated and put on a ventilator. She remembers marveling at how carefully the nurses watched over her.

“You have these people who show up, they don’t know you, but they are trying to save your life, putting your physical needs before their own.” She recalled the night several days after she was admitted when a nurse noticed she was becoming anxious and breathing heavily. “The nurse was very observant – she made a call and within a minute all these people came in,” she said of the doctors, respiratory therapists, and pharmacists that came to help her. She remembers them needing to sedate her so that she would stop fighting the ventilator.

Sydney was experiencing a severe inflammatory response that was preventing her from getting better. After that, the decision was made to put Sydney on Extracorporeal Membrane Oxygenation, or ECMO.

CM’s ECMO program provides long-term breathing and heart support for children with life-threatening heart or lung problems. It’s considered the highest form of life support and can be used for days or weeks while the underlying illness is treated. She was on ECMO for about five days while her body worked to heal.

While her time on ECMO was a blur, she does remember the time afterward in the hospital as she recovered. “There was always a nurse with me, just talking about life outside the hospital to take my mind off things,” she said. “They were taking such good care of me.”

19 days after she was admitted, Sydney went home. It took another week before she returned to school and a lot of homework to catch up on. She was in physical therapy often to help her recover and had to slowly work back to softball.

“The nurses and physical therapists were really nice and encouraging,” she said, adding that the whole experience made her realize how much she took her physical mobility for granted. “I didn’t realize how sick I was,” she said.

When she returned to school, classmates asked if the experience made her want to be a nurse. It was sophom*ore year, and many students were exploring career options. Her first thought was that nursing was too hard. Not necessarily the work itself, but the emotional aspect that comes with taking care of other people. She thought of the little boy that had been in the room next to her in the PICU. He was only three years old and had been in a house fire and lost some of his family. “I was so concerned for him and his family,” she said, remembering that at the time, she thought she could never do what nurses do.

But something changed.

When it was finally time to decide on a career, Sydney did consider nursing as well as journalism or education, but wasn’t sure what to do. One evening, she prayed about it to help her decide. Shortly after, her mom brought up Sydney’s ECMO experience, seemingly out of the blue. Sydney took it at a sign. “That’s when I decided that I’m definitely going to be a nurse,” she said.

While attending college at the University of Kansas, she received her Certified Nursing Assistant (CNA) and worked in a nursing home. After moving back to Kansas City for nursing school, she continued her CNA work at Providence Medical Center and then St. Luke’s Hospital. “I loved all of those experiences,” she said, adding that they helped solidify her decision to pursue nursing.

She wanted to keep her options open, but the more she moved into her career, the more she realized her interest was in children and critical care.

For her clinical experience, Sydney had to choose a certification or specialty and write about it. She ended up at Children’s Mercy doing her project on ECMO. While walking through the halls and speaking with her instructor, she was approached by Kari Davidson, Director of the ECMO Program. She asked Sydney for her name and when she told her, Kari stepped back and took a softball swing. To Sydney’s surprise, Kari not only remembered her being a patient on ECMO but had used her case in training and had a photo of Sydney playing softball in the training presentation. The rest of the day, Kari would introduce Sydney and ask staff if they remembered her.

“It’s been six years, I didn’t expect them to remember me,” said Sydney, adding that seeing the staff so happy to see her made it a “full circle” moment for her, and showed her how rewarding it is for nurses to see a patient fully recovered and healthy. “It made me want to work at Children’s Mercy because that’s the environment that meant so much to me and my family,” she said. “There’s something really special going on here.”

Sydney will start working at Children’s Mercy next month in the Neonatal Intensive Care Unit (NICU). She’s excited to start there, and already has some experience working in the NICU for her capstone program at KU. “I think I have a passion for caring for those that are most vulnerable,” she said, adding that she hopes that her experience on ECMO will help to provide encouragement and hope to not only patients, but families as well.

Read other employee stories in celebration of Children's Mercy 125th anniversary.

By Dr. John Cowden, Jessi Van Roekel

The social justice movements and disparities revealed by the pandemic in 2020 put a spotlight on systemic inequities. This led to a renewed interest among many hospitals in diversity, equity and inclusion (DEI) efforts.

The challenge for hospital leaders is not that inequities have suddenly appeared where few were before, but that inequities have long been—and continue to be—pervasive, even in pediatric health care organizations with long-standing missions to provide excellent care to all children.

The problem of unfairness in care and outcomes is not new, but realizing the full depth and breadth of this issue can feel overwhelming. Where do you start? Is having DEI experts at the hospital enough to handle issues that exist fundamentally in all hospital areas every day? If not, what else can you do?

AtChildren’s Mercy Kansas City, leaders have supported the growth of a DEI ecosystem for 13 years. The first step, in 2008, was the formation of the Office of Equity and Diversity and the Equity and Diversity Council, which provided a coordinating base for DEI work.

Over time, a broad network of DEI-focused groups was created, including committees, champions and projects in patient care, human resources, faculty affairs, research, community engagement, and more, as well as employee resource groups and an array of patient family advisory councils.

Read the full article via the Children's Hospital Association

Diversity, Equity and Inclusion at Children's Mercy Kansas City

Children’s Mercy invested seven endowed positions to honor outstanding clinicians, researchers and leaders who are committed to transforming the health, well-being and potential of children across the region and world. This is the largest group of honorees ever invested at one time at Children’s Mercy.

Hospital leaders and special guests gathered to recognize the distinguished accomplishments of the following Children’s Mercy faculty and the donors who made these endowed positions possible at the 2022 Investiture ceremony on Wednesday, April 13.

Denise Bratcher, DO

Dr. Sidney F. Pakula Endowed Chair in Graduate Medical Education

Mark A. Clements, MD, PhD, CPI, FAAP

Rick and Cathy Baier Family Endowed Chair in Endocrinology

Jeanne M. James, MD, MBA, FAAP

Joyce C. Hall Eminent Scholar in Pediatrics

Eric T. Rush, MD, FAAP, FACMG

Underdown/Yeomans Family Endowed Professorship in Connective Tissue Disorders Care

Venkatesh Sampath, MBBS, MRCPCH

Sosland Chair in Neonatology Research

Sarah E. Soden, MD

Nick Timmons Endowed Chair in Developmental & Behavioral Health

Tangula Taylor, MBA, BSN, RN, NE-BC

Bernell Hevner O’Donnell, RN Endowed Chair – Chief Nursing Officer

“Established through the generosity of committed donors, endowed positions are the highest academic award one can achieve – it is an incredible honor to be the named holder of the appointment and an enduring tribute to the donor who creates it,” Paul Kempinski, Children’s Mercy President and CEO, Alice Berry, DDS, and Katharine Berry, MD, Endowed Chair in Executive Leadership, said. “Now, more than ever, endowed positions are crucial for recruiting and retaining world-class talent – they provide the recipient time and funding to focus on their work – it truly is an investment in the future of children’s health.”

The ongoing financial support endowed positions create for research and education, and numerous other areas, elevates the hospital’s academic profile and stature as a national leader in clinical care. Thank you to Dr. Lawrence Pakula of The Louis H. Gross Foundation, Inc.; Rick and Cathy Baier Family Foundation; The Hall Family Foundation; Kim and Rod Underdown and the Underdown and Yeomans Family; The Sosland Foundation; Fore the Kids Foundation and Dr. Randall and Melva O’Donnell for their visionary leadership and generosity in establishing these vital positions for the continued work of building a world of well-being for all children.

Learn more about the honorees and donors

When Shauna Beckett, RN, a Floor Nurse on 4 Henson, the Children’s Mercy Hematology/Oncology unit, walks into a room, she knows what her patients are going through. After all, Shauna is a 15-year survivor of Hodgkin lymphoma. She was diagnosed and treated at the hospital in 2006.

Shauna’s journey with cancer started when she was just 14 years old. “I was a classic case of someone whose cancer went undetected for several months before I came to Children’s Mercy,” she said.

For Shauna, one of her first symptoms was weight loss. “My mom noticed that my clothes were getting baggy, and I was very tired,” she said. “I was an active kid. I would go to a basketball or volleyball practice that summer, then come home and nap for three or four hours. That wasn’t like me at all.”

When a large bump suddenly appeared on the right side of her neck, Shauna’s parents took her to several doctors who diagnosed her with mononucleosis, a contagious disease commonly caused by the Epstein-Barr virus.

More than mono

Though she was prescribed antibiotics, the bump on her neck had grown to the size of a golf ball, and Shauna was getting sicker by the day.

“I remember waking up in the middle of the night and I would be soaking wet with sweat,” Shauna said. “That was one of the final triggers for my parents that this was more than mono.”

Her concerned parents decided to take Shauna to the Children’s Mercy Hospital Kansas Emergency Services Department where the physician who treated her ordered a chest X-ray.

“As soon as they got the X-ray results, they could see I had a large mass in my chest,” Shauna said. “They sent me to the Hematology/Oncology Clinic at the Adele Hall Campus immediately.”

There, Shauna and her family met with Alan Gamis, MD, pediatric oncologist. Dr. Gamis ordered a biopsy, blood work and other testing. To expedite her care, Shauna had a port-a-catheter placed at the same time the biopsy was performed so she could begin chemotherapy treatments immediately.

“They were pretty sure I had lymphoma, but the biopsy confirmed the type and stage,” Shauna said. A PET scan showed Shauna’s medical team exactly where the cancer was located in her body, and because of the chest mass, she also had a pulmonary function test.

It’s go-time!

With all those tests completed in July 2006, Shauna said it was “go-time.” Dr. Gamis presented a study to Shauna and her family from the Children’s Oncology Group (COG), and she decided to participate.

“The study was looking at whether therapy could be personalized better, giving less to those who didn’t need so much and more to those who did,” Dr. Gamis explained. “One of the primary aspects of the study was to reduce the risk of later breast cancer, which was high in those who received chest radiation. Shauna responded very well to chemotherapy and was randomized to no radiation.

“Her participation, along with hundreds of others, showed we could eliminate radiation in children who had a good, rapid early response to chemotherapy.”

As Shauna began her treatment, Dr. Gamis recalled her as a headstrong individual who wanted to know every detail of the disease she was fighting and the proposed treatment plan. She also had tremendous family support, a key factor when facing a cancer diagnosis.

“Shauna and her family understood that participating in a clinical trial not only could help her but could help other children facing the same diagnosis in the future,” Dr. Gamis said. “By taking part in the trial, Shauna received the best therapy available at the time for newly diagnosed patients with Hodgkin lymphoma.”

Shauna’s treatments were delivered in the Hematology/Oncology Outpatient Clinic, as long as she had no complications. “My protocol was a week of chemotherapy, then three weeks off to recover for the next cycle. I came into the clinic for my first cycle of chemotherapy and ended up being admitted for the rest of that round,” Shauna said.

“I would be pretty sick that first week, then I would feel good by the third week, then the cycle would start all over again,” Shauna described. Over the next six months, Shauna battled fevers, a skin infection, nausea and vomiting, mouth sores, fatigue, severe bone pain and hair loss. But by the end of November, there was good news.

“When treatment ended, I felt pretty good, but my body so weak. I had no strength at all,” she said. Still, Shauna’s scan results showed the treatment not only worked, but that she was in remission.

“At Thanksgiving, my parents announced to our family that the cancer was gone,” Shauna recalled. “There were a lot of happy tears from the adults. I think my parents felt like it was over. They were focused on survival.”

But Shauna was focused on recovery, and the long-term effects of what she’d been through.

“I had to give myself a lot of grace and time to slowly return to normal,” Shauna said. “I had to build my strength back up, and even though I tried to go back to school in January 2007, I could only go part time.

“Plus, in the midst of treatment, my family moved and I changed schools. It was tough being the bald new girl, but eventually I realized I had been through much worse. At some point, I just stopped caring what anyone else thought.”

It’s just a phone call …

Over the next year, Shauna continued her recovery, returning to the hospital every three months for check-ups, blood work and scans.

“I remember waiting for that phone call with the news of my results,” Shauna said. “ It’s crazy because it’s just a phone call, but you can’t eat or sleep without that information. It determines what your life is going to look like. I would be so anxious to get the news.

“For me, hearing that I was in remission was a huge relief, but it was nerve-wracking to know that the cancer could come back at any minute,” Shauna added.

As the months went by, scan after scan confirmed that Shauna was in remission, and she continued to regain her strength. By the summer of 2007, about a year after her diagnosis was made, she began to feel like her old self.

“I started playing basketball again, running track and hanging out with my friends,” Shauna said. “Life felt normal.”

A new direction

Like many teens who experience a life-threatening diagnosis, Shauna began to re-examine her future. Guided by her strong faith, Shauna said she knew through her cancer diagnosis that God was asking her to do something different with her life.

“From the time I was just a little kid, I loved the weather, and I always thought I would become a meteorologist,” Shauna said. “I was a weather nerd. But after being diagnosed with cancer, I decided I wanted to study nursing, and more specifically, become a pediatric oncology nurse.”

After graduating from high school, Shauna was accepted into the Bachelor of Science in nursing program at Rockhurst University in Kansas City.

Four years later, she graduated with a BSN and a minor in political science. “During my capstone project, I requested to be placed at Children’s Mercy. I did my final practicum in the emergency room, and then was hired right out of school to work on 4 Henson.”

Dreams do come true!

But working with oncology patients at Children’s Mercy wasn’t Shauna’s only dream. She married her college sweetheart, Luke Beckett, shortly after graduating from Rockhurst. And knowing she had always wanted to be a mom, the couple decided to start a family.

“I knew fertility issues could be a long-term concern after the chemotherapy treatments I received, and that I might have a shorter window for my child-bearing years than normal,” Shauna said. “That’s why I decided to become a mom sooner rather than later.”

Though Shauna did experience some challenges with her fertility, she’s overcome those as well, giving birth to two healthy children, 2-year-old Hadley and 4-year-old Corbin.

“These ages are so crazy but so fun,” Shauna said. “I wish they could stay this age forever. We love doing anything outdoors, like hiking and exploring. Even through the pandemic, we would go find an empty trail in Kansas City to hike.”

My Children’s Mercy family

Throughout Shauna’s cancer journey, her Children’s Mercy care team has been at her side. “Dr. Gamis and Joy Bartholomew, his nurse practitioner, are amazing! I cannot imagine a better oncology team in America!

“As a nurse on the floor who has experienced care at Children’s Mercy firsthand and has now seen Dr. Gamis interact with countless patients, he’s the same for everyone. There’s no favorite. He wants to save everyone’s life.”

In fact, Shauna and her family believe that God used Dr. Gamis to save her life. “He was at the right place at the right time. We are so thankful for all he did and we admire him so much.

“The other nurses on the unit don’t have the same personal experience as a patient that I do, so when I hear them say how kind and caring Dr. Gamis is, I just smile. I know that he treats every patient with the same care and respect that he gave me,” Shauna said.

Dr. Gamis said the thirst for knowledge and detail that helped Shauna beat cancer are what make her such an outstanding pediatric oncology nurse today.

“During rounds, Shauna really speaks up and advocates for her patients, providing great insight into how they are doing physically and emotionally,” Dr. Gamis said.

Now that she’s been cancer-free for 15 years, Shauna no longer worries that her next scan might show the cancer is back or that she needs more treatment. “I’ve finally been able to let that go,” she said.

But her involvement in that clinical trial 15 years ago has helped other cancer patients like her. “The treatment Shauna received in the COG trial became the standard of care for newly diagnosed Hodgkin lymphoma patients over the next decade,” Dr. Gamis added.

As a nurse who has helped family after family, she also realizes how much Children’s Mercy does for patients behind the scenes. “When I look back, I can see the bigger picture. The financial department was such a big help to my family. They never could have afforded my medical bills without help. I’ve personally benefited from fundraising efforts like Big Slick,” Shauna said.

“If you work in finance or philanthropy, it would be easy to sometimes think that you’re sitting at a computer, wondering if what you do really makes a difference. I want you to know that it does,” Shauna said.

“I’m so thankful for everything my Children’s Mercy care team did for me, but as an oncology nurse, I know that I have looked after so many kids whose stories don’t turn out like mine. It happens every moment of every day. Some family’s world is crumbling somewhere. That’s hard for me to accept.”

Which is why Shauna is sharing her story now. “I never want to take away from what a family is going through. But I will share my story if I think it will encourage and inspire the patient to fight, to try harder, to lift their head up and to see that there is a light at the end of the tunnel.”

“As a patient, Shauna was positive and a great advocate for herself,” Dr. Gamis added. “Her experience provides her with a great compassion and empathy for what our patients and families are going through. I am proud of her every day when I see her taking care of patients. She’s proof that there’s not only life after cancer, but a happy, successful life.”

Seven months later, we were at Children’s Mercy and Hudson was undergoing open-heart surgery. The surgery was a success, but it wasn’t easy. We had a couple of setbacks, and recovery was a roller-coaster, with good days and hard days. Throughout everything, the staff at Children’s Mercy treated our son as if he were theirs. I believe this is the type of love that Alice Berry Graham and Katharine Berry Richardson had for children when they first started Children’s Mercy, and it continues to this day.

The hospital staff not only make you feel welcome, but a part of the family. Every decision was made with care and love for Hudson so he could get better and thrive. Every single employee has that same goal. They go about it in different ways, as they have different jobs, but they have the same universal goal. I believe it takes a very special type of person to be employed at Children’s Mercy. I have found one common denominator in every employee I meet: LOVE. A person must have love in their heart to be here. It reflects in everything they do, and that is why they’re here – I am certain.

In our two-week stay, I had lots of time to think. Think and watch. While Hudson recovered from surgery, I watched the dynamic, the culture at the hospital. I thought to myself, ‘I HAVE to work here!” But with a degree in merchandising, I thought, “Why would they ever hire me?” I thought I had no chance. I kept thinking about it – I felt like I was supposed to be at Children’s Mercy. I didn’t know how, or why, but I needed to try.

I am so glad I did. It’s the best thing I’ve ever done! Seven years later, I’m the office coordinator of the Respiratory Care department. I love it.

Hudson is a regular, thriving 9-year-old boy who loves to rile up his twin sister. We are so lucky. You know, it’s funny – I grew up here and was aware of Children’s Mercy, but never thought twice of it. I realize now how much of an exceptional gem Children’s Mercy is for Kansas City, and how there is no other place like it in the Heartland. Patients come from near and far to this special place – for healing, for care, and for love. Patients know when they come to Children’s Mercy they’ll get love, and I believe that fact is what will drive us to become the best Children’s Mercy we can be in the future.

Learn more about Children's Mercy Kansas City.

Team Children’s Mercy brings together those who love to run, bike, explore and more, to help fuel the ground-breaking research, world-class care and advanced healthcare delivered to children across the region each and every year.

Athletes from across the Kansas City region and beyond are invited to set up personal fundraising pages and raise funds for kids while they train and race. Join families like Kevin’s who channel their Children’s Mercy experience and give back through race support.

“Children’s Mercy gave our family so much that I want to give back… Team Children’s Mercy represents an opportunity to put our arms around an organization that has their arms around so many families and so many children in our region. And that’s why I support Team Children’s Mercy," said Kevin Wade, a Children’s Mercy parent.

Watch Kevin’s story here

You can also join Team CM by participating in two local races that benefit Children’s Mercy – Burns & McDonnell Rock the Parkway Half Marathon & 5K, and Hospital Hill Run Half Marathon, 10K & 5K.

Your support brings hope, healing, comfort and compassion to kids and families at Children’s Mercy. From art therapy to innovative research and everything in between, your contribution helps us to provide world-class care for all kids in our community.

Burns & McDonnell Rock the Parkway Half Marathon & 5K

April 9, 2022

Show your Children's Mercy pride at the 13th Annual Rock the Parkway and support kids in our community by joining Team Children's Mercy! All donations and fundraising through your participation in Rock the Parkway directly benefit patients and families at Children's Mercy.

Hospital Hill Run Half Marathon, 10K & 5K

June 4, 2022

By taking part in the Hospital Hill Run, a portion of your entry, along with 100% of your fundraising efforts, go to the I Love Children’s Mercy Fund. Make your miles count in 2022 by becoming an individual or team fundraiser. Companies can also activate their employees and compete in the Charity Challenge.

Join Team CMto race for kids who are racing against the clock!

When we throw abirthday party, we are celebrating another year of life — in addition to the years already gone by. The older, the more impressive,right?Enter:Children’s Mercy Hospital. This integral Kansas City institutionturns 125 this year.

There’s a reasonChildren’s Mercyhas been rated among thebest child hospitalsin the nation (more on that later), but did you know how it all got started? Here’s a shot of history + quotes and dates that will give you a healthy admiration for this KC institution.

A collaboration led by the St. Louis County Department of Public Health has been awarded a $1.8 million federal grant to implement the Show-Me Missouri Healthy Homes Program in St. Louis County and Kansas City.

The program’s primary goal is to improve the health and safety of families through home assessments and remediation in targeted communities in both regions. DPH and its partners will focus on HUD’s eight Healthy Home Principles: keeping homes clean, dry, pest-free, contaminant-free, safe, ventilated, comfortable and maintained.

Radon testing will also be offered for each home. A tiered assessment model will be used with multiple home visits, ensuring that each enrolled family gets the healthy homes interventions best suited to its needs. DPH is the lead agency administering the Healthy Homes Production grant from the U.S. Department of Housing and Urban Development’s Office of Lead Hazard Control and Healthy Homes. DPH is collaborating with Children’s Mercy Kansas City’s Environmental Health Program, and each entity will work with local partners. In the St. Louis region, the local partners are the Community Action Agency of St. Louis County and the Missouri Botanical Garden’s EarthWays Center.

In the Kansas City area, the local partners are Westside Housing Organization, Metropolitan Energy Center and Rebuilding Together KC. Additional support has been made available in Kansas City through the Spire Foundation. The partnership will implement the Show-Me Missouri Healthy Homes Program in Kansas City and Saint Louis County.

The St Louis Promise Zone will be the highest priority area in the St. Louis County effort. Approximately $1 million will be spent in Kansas City and about $800,000 will be spent in St. Louis County. The program also seeks to increase the number of professionals in the St Louis County and Kansas City areas with knowledge of healthy home issues through several healthy homes training courses and workshops intended for audiences including contractors, health educators and housing and environmental professionals.

Other efforts will be made to improve the knowledge of healthy home issues to residents of the St. Louis County and Kansas City communities through structured education and outreach programs.

To become eligible for the program, families must meet federal income level criteria. For more information in St. Louis County, visit DPH’s Healthy Homes Programhereor call 314-615-5323.

In the Kansas City area, please visit theChildren's Mercy Kansas City web siteor call the Children’s Mercy Healthy Homes Program at 816-302-8565.

Thanks to advances in medical and surgical care, children born with congenital heart defects are now surviving long into adulthood. Patients with congenital heart disease (CHD) continue to need care throughout their lives and are best served by clinicians who understand their complex and unique needs.

Children’s Mercy works with area adult health systems, including the Mid America Heart Institute at Saint Luke’s, to provide CHD patients with seamless, continuous, advanced care as they transition to adulthood. The Adult Congenital Heart Program will treat all types of congenital heart conditions in adults, including those complicated by heart rhythm problems, heart failure and pacemakers.

Watch a short video about the Adult Congenital Heart Program

Check out the Ward Family Heart Center at Children's Mercy Kansas City

During his most recent visit for a dressing change on his right foot, Johnathan Diercks chose to have the Burn Clinic filled with animated images of hummingbirds, a green background and ukulele music.

On a previous visit, the 10-year-old chose owls, piano music and a blue background; he’s also chosen eagles, guitar music and an orange background for dressing changes.

The calming, relaxing atmosphere is made possible by an audio/visual projection system installed in the new Burn Clinic on 1 West near the Surgery Clinic, Adele Hall Campus at Children's Mercy Kansas City. Patients pick the lighting (rainbow or combinations of green, teal, pink, orange and purple); music (piano, guitar, chimes, ukulele or violin); and animations (owls, eagles, hummingbirds, macaws or Lorikeet parrots) to set the environment during their burn treatments.

“Blank, white walls come to life,” said Daniel Marx, MHSA, MSN, RN, CPN, Nurse Manager of the Burn Specialty Team and Burn Clinic. “The whole idea is to provide distraction and decrease the fear, anxiety stress and pain patients may experience during burn treatments. It can help to decrease or eliminate the amount of narcotic/controlled medications we have to give.

“Pain is unavoidable with burns, but with distraction technology, instead of patients focusing on a caregiver coming at them with a pair of scissors and thinking ‘this is going to hurt!’ we now have all of these other options to draw their attention away from the treatment procedure,” Daniel added.

For example, especially with younger patients, the caregiver can ask the patient to count the number of birds they see or what color they like best.

“It’s an immersive environment that follows the patient from room to room and even in the hallways,” Daniel said.

Katie Schmuke, RN, CPN, Burn Specialty Team Nurse, said, “It is no surprise that burn care is painful … typically with burns, nobody is excited to see us nurses! But it has been amazing to have this technology to help distract patients from that.Returning to our clinic for follow-up care can cause a lot of anxiety for our patients. We now have kids who are eager to return so they can pick their bird and music!”

Some patients pick their favorite sights and sounds at every visit; Johnathan, like others, said, “I like picking different ones every time.” He said his favorites have been piano music (he plays the piano), owls and a teal green and orange background.

Johnathan got second degree burns on his foot (“I burned my foot with boiling water while I was making mac and cheese,” he explained), and he said dressing changes hurt “a little bit,” but the worst part was when he heard the initial treatment plan. “When they said they were going to cut it open…WHOA!,” he remembered.

But his mother, Jackie, said the distraction therapy eased the fears and dread of treatment visits and has “absolutely” made a difference in his attitude about visits to the Burn Clinic.

“Johnny really enjoys the ability to pick those things for the environment,” she said. “It puts things more in his control, which is great for kids going through something as difficult as a burn.”

Jackie added, “I was extremely impressed with the facility. My husband is military, so we’ve been to hospitals all over the country. This, by far, has been one of the most accommodating for children. The consideration they’ve put into making this experience as un-traumatizing as possible is tremendous.”

Creativity from necessity

The creativity that has gone into the design of the Burn Clinic resulted from rethinking Children's Mercy’s whole approach to burn care when the Pediatric Intensive Care Unit (PICU) on 2 Henson was expanded to include the Cardiac Intensive Care Unit (CICU). The expansion absorbed space that included seven beds for burn patients.

“It gave us an opportunity to shake things up,” Daniel said. “There really wasn’t room on 4 West (where burn care has four beds) to build treatment room. We had to throw all our cards in the air and adapt while still providing high quality burn care and increasing staff satisfaction.”

Instead of trying to find space for the seven beds and treatment space lost due to the PICU expansion, Daniel and Pablo Aguayo, MD, FACS, FAAP, Director-Burns and Associate Director, Trauma and Critical Care brainstormed a different model.

Previously the Children's Mercy burn unit was connected to the 2 Henson Med/Surg unit. Burn care was transitioned from a unit-based to a team-based approach. The nine-member Burn Specialty Team (BST) was created and the new Burn Clinic on 1 West was built with distraction technology. The BST manages and completes all burn debridements/treatments and ambulatory burn clinic visits.

“With the Burn Team approach, our organization has experienced increased staff collaboration, improved care coordination and increased burn nurse availability leading to decreased time from arrival to initial debridement, all of which improves patient care and experience,” Daniel said. “This is a non-traditional clinic; to my knowledge, this structure doesn’t exist in the pediatric burn world; this is a unique team for a pediatric setting and we’re the only pediatric burn center between St. Louis and Denver.”

The Burn Clinic has attracted attention from other pediatric burn centers; Daniel has met with five who wanted to learn more about Children's Mercy’s burn care model.

Dr. Aguayo said, “This project has been over seven years in the making and has come to fruition through the tireless efforts of so many individuals from within and outside of the walls of Children’s Mercy. These people, from administrators, construction specialists, architects to nurses and doctors, have whole-heartedly embraced the work that is being performed for pediatric burn survivors at Children's Mercy. All of us truly believe that this new outpatient treatment space for burns will improve the care and the lives of so many of our patients and their families. This is a huge win for our city and for our region as we continually strive to improve care of the entire person here at Children’s Mercy.”

Learn more about Burn and Trauma Care at Children's Mercy.

By Paul Kempinski, President and CEO of Children's Mercy Kansas City

There is a “shadow pandemic” evolving among our children — a mental and behavioral health emergency. This month, the U.S. surgeon general, citing the additional cumulative stress from the pandemic, issued a public health advisory about this escalating mental health crisis in our youth. We must respond. The time to engage in positive action to save our children’s lives is now.

Across the country, more children without medical needs are being admitted to pediatric hospitals and are staying longer due to the lack of mental or behavioral health services in our communities. This results in more hospital staff days spent on 1:1 observations to keep these children safe from harm, which increases pressure on bed availability and staffing levels. Due to lack of resources, these children are being deprived of the mental health services they desperately need and, as a result, their mental health needs intensify, and they become more disruptive and more verbally and physically aggressive to our staffs.

At Children’s Mercy Kansas City, a “Code Strong” is called whenever a patient becomes disruptive and cannot be deescalated. It indicates the patient requires intervention in order to prevent them from doing harm to themselves or others. The team who responds includes social work, hospitalists, pharmacy and security, as well as the shift supervisor and charge nurse. Before the pandemic, Children’s Mercy experienced 23 Code Strongs annually. This year, the hospital will have more than 300.

During this pandemic, kids’ social isolation and increased family stress has only intensified these troubling pre-pandemic trends. From April to October 2020, the proportion of mental health emergency department visits increased significantly among kids ages 5 to 11 (24%) and ages 12 to 17 (31%) versus the same period in 2019.

We request support for the following efforts:

▪ The demand for pediatric mental health services, both inpatient and outpatient, far exceeds supply. There simply aren’t enough specialty trained health care providers to care for this population of kids. The Children’s Hospital Association estimates our nation needs 47 child psychiatrists per 100,000 kids and teens. Currently, there are 10 per 100,000. Additionally, hospitals lack adequate inpatient mental and behavioral health beds, and our communities lack adequate placement facilities that can provide appropriate and safe care to patients whose mental health needs are the most acute.

▪ Children’s hospitals are not equipped to care for patients with mental health needs at scale. Due to the shortage of specialty providers for these kids, children’s hospitals are bearing the brunt of the volumes because, in some cases, our emergency departments are a child or family’s only refuge. Holding kids with mental health needs in our emergency rooms — often for 24 hours or more — while waiting for an inpatient bed or community placement is not therapeutic. Stimulation from a busy and sometimes chaotic environment can increase their levels of anxiety and agitation. It frequently results in a worsening of symptoms, higher risk of harm for both patients and staff, and greater likelihood of patients leaving the hospital when doing so may present an imminent threat to their safety.

▪ We must keep our kids — and our staff — safe. Children’s hospitals — and more specifically, the people who work at them — exist to take care of our communities’ most vulnerable kids at their times of greatest need. But even those who thought they knew what they signed up for — the triumph, the heartbreak, the risk — couldn’t have imagined this. Our most highly acute patients can be a threat to themselves, but also to our staff. Patients who are in crisis do not always know how to express themselves. At times they lash out, and several have inflicted extensive harm on our front-line team members.

The severity of the “shadow pandemic” requires us to sound the alarm on behalf of our families. We continue to engage with stakeholders to develop immediate next steps. Undeniably, we will need all levels of government and our communities’ grassroots support to rise to meet this challenge. We have always done so in our past, and we know we can do so again.

Read the letter via The Kansas City Star

Learn more about the Developmental and Behavioral Health Division at Children's Mercy

Tarak Srivastava, MD, FASN, has been named as a new member of the American Pediatric Society (APS), the first and most prestigious academic pediatric organization in North America. Dr. Srivastava and other new APS members will be recognized next April during the APS Presidential Primary PAS 2022 meeting in Denver.

Dr. Srivastava is a Professor of Pediatrics in the Section of Nephrology at Children's Mercy Kansas City. He started his career as a Nephrology fellow at Children's Mercyin July of 1997. His next love after patient care is translational research. He runs a National Institutes of Health (NIH)-funded Nephrology Research Laboratory, which is studying drugs to mitigate progression of chronic kidney disease in children. He is actively involved with various multicenter clinical research studies funded by the NIH to understand the disease process in children with Idiopathic Nephrotic Syndrome.

In 2016 Dr. Srivastava received an Academic Achievement Award as an appreciation for his work, and in February 2020 he was recognized as the “Shining Star” award winner for being the top-rated provider by Children's Mercypatients and families over the previous 12 months.

APS members are recognized child health leaders of extraordinary achievement who work together to shape the future of academic pediatrics. New members are nominated by current members through a process that recognizes individuals who have distinguished themselves as child health leaders, teachers, scholars, policymakers and/or clinicians.

“The APS mission is to shape the future of academic pediatrics through engagement of distinguished child health leaders to represent the full diversity of the field,” said APS President Mary Leonard, MD, MCSE. “Our new members represent the most distinguished and accomplished leaders in pediatrics whose outstanding work has advanced child and adolescent health and well-being in pursuit of this mission. I am honored to welcome this exceptional group of individuals to the APS and look forward to their active engagement with many exciting programs within the organization.

See the full list of new, APS members

Learn more about the Division of Pediatric Nephrology at Children's Mercy

Find information about the Children's Mercy Research Institute

Laurel’s daughter, Katie, had battled a compromised immune system and irregular blood levels for nearly 18 years, but it was the spring of 2017 when Laurel, mother of eight, first noticed something was seriously amiss with her daughter Katie. She had her tested for thyroid antibodies since autoimmune thyroiditis runs in the family. After seeing her high thyroid levels, Katie went on a dairy and gluten-free diet, and the family went about their day-to-day lives.

But later that year, during a camping trip on Labor Day weekend, what Laurel expected to be a relaxing, fun family trip took a turn when she noticed Katie was struggling to walk the short trip to the campground. She was pale and had no energy. That’s when it hit Laurel that there was more going on, and it was something they needed to figure out fast.

They cut their camping trip short and took Katie into their doctor the next day. There, they learned she was incredibly anemic, and her white blood cell count was dangerously low. Doctors wanted to do a blood transfusion to bring up her white blood cell count, but they quickly learned that Katie was at too much risk of going into anaphylactic shock given the high levels of antibodies in her system.

Over the next few months, Laurel took Katie to doctors across Wichita, where she was prodded and poked many times over by many different specialties, until a rheumatologist finally recommended they find a hospital where specialists could work together to help Laurel find answers for her daughter.

Laurel recalled a friend telling her, many times over the years, how wonderful Children’s Mercy had been for their family. So after a year of searching for answers, Laurel and Katie made the drive to Kansas City, where they met with HemOnc specialist, Dr. Hetherington and began their journey with Children’s Mercy.

After their initial appointment, Dr. Hetherington was able to connect them to other specialists in Children’s Mercy. Katie saw specialists from internal medicine, hematology/oncology, pulmonology and immunology, which turned out to be a huge part of Katie’s healthcare picture. Doctors across the specialties worked closely together to provide comprehensive care for Katie while also working diligently to find a diagnosis.

Finally, after multiple trials and tests, Katie’s team of doctors referred her to the genetics clinic. While clinical testing came back negative for any diagnosis, Katie’s sample was entered into the genetics registry, as were samples provided by her parents.

Laurel and Katie had made the journey to Children’s Mercy multiple times now in search of an answer for Katie. And little did they know, they were finally going to have one.

One day, during a typical day at home, the phone rang. Laurel answered, and on the other end was their genetic counselor, Caitlin.

After 18 years of struggling with Katie’s immune system and blood levels, and years of working with doctors across the region to search for answers, they had finally found a diagnosis and an explanation for Katie’s myriad of symptoms. Through a new flagship program of the Children's Mercy Reseach Institute, Genomic Answers for Kids, doctors at Children’s Mercy were able to pinpoint Katie’s rare disease: Roifman syndrome. A disease that impacts so few people that any information on it is hard to come by – it is estimated Katie is one in 50 people in the world affected by Roifman syndrome.

Having a diagnosis – finally – was a relief, but also brought up more questions for Laurel. After Katie’s diagnosis, she had a hunch that Katie may not be the only one in their family with Roifman syndrome, so she worked with Children’s Mercy to run genomic tests on two of her other children as well. Her motherly instincts were correct, and through the Genomic Answers for Kids program, Laurel now has a diagnosis for three of her children.

“It is really heavy sometimes and can feel really overwhelming. But we’re thankful to have a team that has walked with us through it and been very steady and persistent in not giving up in trying to search for what’s going on beneath the layers,”said Laurel.

Learn more about Genomic Answers for Kids at Children's Mercy Kansas City.

Read Celia's story.

Celia’s parents have spent almost her entire life – six years – trying to solve her medical mystery.

Born a twin, Celia’s brother hit normal developmental milestones right on time, but Celia always lagged behind. By one-year-old, her brother was walking and Celia wasn’t even crawling yet. Then, the painful, odd movements started, and so did the unending doctor appointments.

“We live in Wichita and we went to so many doctors here – urology, acid reflux, neurology, etc – but no one in Wichita could tell us anything,” said Teresa, Celia’s mom. “Finally, we were referred to the Children’s Mercy genetics clinic when Celia was almost two years old.”

The Children’s Mercy neurology clinic provided a lot of answers for the family, including a diagnosis of dystonia that explained those painful movements. But genetic testing came back normal, time after time, until one day, the neurologist told the family about Genomic Answers for Kids and encouraged them to enroll in the study.

“I thought, sure – why not. We had tried everything at that point -- five years of testing -- and nothing could find an answer,” said Teresa, Celia’s mom.

Months went by and Teresa forgot about the study. Until she received an unexpected phone call from their Children’s Mercy genetic counselor and heard the words, “I wanted to let you know that the research team found the diagnosis for Celia.”

“My whole body was shaking. I started crying. It’s been so long, and so many things have been going on with her health over the years. I just couldn’t breathe that we now had a reason,” Teresa said.

Celia was diagnosed with a PDE2A disorder. She is one of only 5 people to have been documented with this disease in the United States. The symptoms of PDE2A align with every challenge Celia has experienced – movement disorder, developmental delays, low muscle tone, epilepsy and more.

“It’s so nice having a diagnosis,” Teresa said. “Even though we don’t know much about the disorder and there’s not much more we can do treatment-wise, it’s so nice to know what it is that’s causing her delays and challenges. She still doesn’t walk, she doesn’t speak but she does say mom. It’s nice to know what it is – we have that info for us, and for our other kids.”

Celia continues to receive care from a team of Children’s Mercy doctors who are committed to her well-being, and now they have added clarity when treating the symptoms of her rare disease.

Learn more about Genomic Answers for Kids at Children's Mercy Kansas City.

Read Katie's story.

According to a study published in Current Sports Medicine Reports, when looking at youth baseball pitchers alone, between 26% and 35% will experience elbow or shoulder pain each year.

That was certainly the case for Daniel Harper. Like millions of kids, Daniel started playing baseball when his parents signed him up for T-ball. Through grade school, he continued to play baseball anywhere and everywhere the coach could use him—catcher, pitcher, outfield.

But by his sophom*ore year at Bishop Miege High School, he began having problems throwing with his right arm. “My velocity dropped from 93 mph to 80 to 83 mph and I couldn’t throw a ball past 90 feet without bouncing it,” Daniel said.

At 15 years old, Daniel thought he couldn’t possibly have injured his arm, but he was wrong. An MRI revealed he had a tear in his ulnar collateral ligament (UCL), requiring Tommy John surgery to repair it.

After surgery, Daniel started an extensive rehabilitation program with Jason Yoder, DPT, a sports physical therapist with the Children’s Mercy Kansas City Sports Medicine Center.

Jason worked with Daniel for nearly a year, helping him recover the strength and mobility in his right arm. “We progressed from light forearm strengthening to being able to do a 90-lb. row on a cable machine within five to six months. It was amazing!” Daniel said.

And though he had to sit his junior season out due to the injury, he was back in full force for his senior year of high school, pitching at 93 mph again, and securing a scholarship to play college baseball for the University of Kentucky.

During his freshman year playing for Kentucky, Daniel thought he “tweaked” his right hip. Though it kept bothering him, he continued to play ball through the first three years of his college career.

But when COVID hit, he decided to have his hip checked out. This time he learned he had a torn labrum, a misshaped hip bone, and there was no cartilage left to protect the joint. So, in August 2020, Daniel had surgery to repair his hip, returning to Jason again for rehab.

“Rehabilitating my hip was much harder than my elbow,” Daniel admitted. “I was non-weight bearing for eight weeks on crutches. That really slowed me down, and I lost some muscle mass,” he said.

But Jason used his expertise and the equipment available at the Children’s Mercy Sports Medicine Center at Village West to help this college pitcher get back on the mound.

“We used the pool and blood flow restriction therapy to get my hip moving again. Those were game changers,” Daniel said. Because of COVID, Daniel was able to continue his rehabilitation throughout the fall 2020 semester in Kansas City, returning to in-person classes, practices and games for the spring 2021 semester.

As he prepares for his fifth and final year on the mound for the University of Kentucky, Daniel said he’s ready to leave everything on the field, hoping to secure a contract to play professional ball following graduation.

“After rehabbing from two surgeries over the past six years, I wouldn’t be where I am today without Jason’s help,” Daniel said.

“Without a doubt, he’s the best sports physical therapist in the Kansas City area, but more important than that, I feel like rehab brought me a new friend that I will have forever. That’s the coolest part. We’ve maintained our relationship over the past six years,” Daniel said. “He was the first person I called when I found out I needed hip surgery.”

As Daniel reflects on how far he’s taken his college baseball career, he gives Children’s Mercy Sports Medicine and Jason much of the credit. “They took a scared and timid 15-year-old kid and gave him the opportunity to succeed. That’s the best thing about all of this.

“Through the rehab, I’ve become more confident in everything I do. Facing two physical challenges like this and getting through them makes you realize that nothing can get in your way.”

Three “Brothers in Arms”

Though Jason was Daniel’s therapist, he’s just one of three physical therapists with the Sports Medicine Center who specialize in working with players, from little league all the way through college. Zachary Gove, DPT, and Andrew Melanson, DPT, are his other “brothers in arms.”

The three not only have the training and expertise to help student-athletes rehab from overhead injuries and other surgeries, they’ve “been there, done that.”

All three started playing baseball at a young age, and played at the college level, helping them relate to their young patients’ injuries, goals and baseball dreams.

Jason Yoder, DPT, Operations Manager, Sports Medicine Center at Village West

Growing up in Indiana, Jason started his baseball career with T-ball, playing baseball through grade school, high school and then in college. On the field, Jason’s home was the pitcher’s mound, where he honed his skills and realized he could play at a higher level.

“I didn’t specialize in baseball until later in my career,” Jason said. “I played basketball, football, swam and ran cross country. Baseball didn’t necessarily come easily for me. I had to work hard at it.”

Jason’s hard work paid off. After high school, he decided to attend college at the University of Indianapolis, a Division II school where he was a walk-on. Unfortunately, during a fall game, he was hit in the ankle by a line drive, breaking a bone in his leg.

“I was never able to trust my leg again and struggled with performance after sustaining that injury,” Jason said. “But I went through several months of rehab. That’s what got me interested in pursuing a career in physical therapy.”

Jason focused on his education, completing his Doctor of Physical Therapy at the University of Indianapolis, Krannert School of Physical Therapy. He has more than a decade of experience in orthopedics and sports medicine at Children’s Mercy, building a loyal patient base. Now a significant portion of his cases involve helping athletes rehab from overhead injuries.

“Having played baseball, I understand what my patients are going through, and being able to establish that rapport is huge,” he said. “But as a physical therapist, I take a wholistic approach to the overhead athlete, looking at the entire kinetic chain. Even though a student-athlete may have elbow or shoulder pain, the problem often originates somewhere else, so we look at how that athlete is moving and prescribe a rehab program just for that player.”

Jason and the entire Sports Medicine team often work with the area’s pitching, strength and conditioning coaches, helping players become stronger, more well-rounded athletes. His goal is to help them not only rehab from an injury, but to return to the game in better shape than ever.

“At the Sports Medicine Center, we bridge that gap from rehab to actually pitching in a game and we do a really good job not just of getting these athletes back to baseline, but ready to perform,” Jason added. “That’s what it’s all about.”

With plenty of space at Village West, Jason can get players back into real-life scenarios to be sure they’re ready to return to play. “I play catch with my patients and we put their arms to the test. That’s how we get positive outcomes and tangible results.”

And because the results have been so good, word of mouth has spread about the Children’s Mercy Sports Medicine Center.

“Most of my patients are in high school, but we work with college-level and pro players as well. We have the ability to follow and manage these athletes through their college and early pro careers because of our knowledge and expertise,” Jason added.

Zach Gove, DPT, Sports Physical Therapist, Children’s Mercy Blue Valley

Zach said he’s played baseball longer than he remembers. “T-ball turned into kid-pitch and I just kept on playing,” he said.

As a member of the Olathe East High School baseball team, he also specialized in pitching and playing infield. After high school, he pitched for two years at Johnson County Community College.

He then transferred to Emporia State where he played three more years, finishing out his collegiate career before earning his Doctor of Physical Therapy from Rockhurst University. Today, he still loves the game. “I play slow pitch softball in a local league just to stay in shape and have some fun,” he said.

Though Zach made it through his high school career without injury, all those pitches eventually caught up with him his freshman year at Johnson County Community College, and again his junior year at Emporia State.

“I didn’t have the best throwing mechanics and did not properly take care of my body. I ended up developing terrible elbow pain when I threw. I had some bone chips and spurs in my elbow that needed to be cleaned up,” he explained.

“I went through several months of rehab and training after two surgeries before I was able to get back on the mound. If I had known then what I know now, it might have saved me a couple of surgeries.”

But those experiences also helped Zach have a better understanding of the throwing mechanics necessary to reduce injury, an important lesson he shares with his patients.

“With tournaments and year-round ball, many of these kids end up throwing more than they should, leading to a variety of arm problems, a common one being growth plate injuries referred to as little league elbow or shoulder,” he said. “That’s why it’s important for younger athletes to see a pediatric-trained specialist who’s aware of and knows how to properly treat them with rest and rehab to avoid further growth-plate injuries.

“As a former pitcher and student of the game, I can help patients find flaws in their throwing mechanics that could have led to their injury,” Zach said. “I have experienced what their practices are like and what the yearly grind is like. I can take them to the next level, working on strength and conditioning, and help educate them to avoid injury in the future.”

In fact, Zach is certified in strength and conditioning by the National Strength and Conditioning Association (NSCA). He also is certified in functional dry needling.

Dry needling involves a small, solid microfilament needle which is inserted into a trigger point by a trained physical therapist, such as Zach. A trigger point is a tight spot within the muscle tissue that develops due to injury, overuse or dysfunction.

Dry needling can decrease pain, reduce muscle tension and improve range of motion, allowing the therapist to target issues that cannot be felt manually.

“Dry needling can be effective at treating players experiencing muscular pain throughout the body. A common site I will needle for throwers is the rotator cuff,” Zach added.

In addition to the staff’s expertise, Zach said the Children’s Mercy Sports Medicine Center also has the space and equipment so patients can practice drills and actually throw, helping them move beyond physical therapy to get back in the game.

“We excel at helping our patients become more well-rounded athletes, and that pays off in the long run,” Zach added.

Andrew Melanson, DPT, Sports Physical Therapist, Children’s Mercy Blue Valley

Growing up in Blue Springs, Andrew followed his older brother into baseball, playing on the T-ball, little league, traveling, American Legion and high school teams. When it came time for college, he played ball one year for Barton County Community College in Great Bend, Kan., then transferred to the University of Central Missouri.

Named to Missouri’s high school all-state team three times, he played first and third bases. “I had the good fortune to play with a number of guys who were a lot better than I was,” Andrew said. “Some of them went on to play in college, the minor and major leagues. I still love baseball, and today, my kids are playing.”

Though Andrew never had surgery, he did have some shoulder pain as a middle-schooler and worked with a physical therapist. But his older brother suffered a football injury to his shoulder, making a big impression on Andrew. “Watching my brother struggle to recover from his shoulder injury got me interested in physical therapy.”

Andrew earned his Doctor of Physical Therapy from Rockhurst University. He was fortunate enough to do his last clinical rotation at Children’s Mercy, where he’s worked ever since. Like Zach, he’s certified in strength and conditioning by the NSCA and in dry needling.

He’s also focused on making sure the overhead injury athletes he works with don’t just meet their strength and mobility requirements, but exceed them.

“Knowing how to play the game helps me dig in deeper and understand how the patient’s injury occurred and what they’re trying to get back to,” Andrew said. “We’re able to write a detailed throwing plan for each athlete. Based on the position they play, we can take them through a step-by-step process for throwing, educating them in injury prevention and proper form.”

Plus, Andrew tries to bring perspective to his patients. “Sitting out a couple of weeks and letting that arm heal and rest will go a lot farther in the long run than getting back out there,” Andrew said. “If a patient truly loves the game, let’s not hurt it when they’re 13 or 14. There’s nothing worse than going to a showcase or the next tryout, and playing at 50%, when they could have taken a short break and shown up at 100%.

“We know their arm is going to be moving at a rapid pace in a stressful environment when these patients leave us, so that’s what we try to replicate in the clinic setting,” Andrew said. “We do a lot of drills and take the athletes through hands-on progression to be sure their form is correct and they’re ready to play ball.”

Ultimately, Jason, Zach and Andrew know from personal experience that each level of play gets more difficult as players climb the ranks.

“Whether a student-athlete is playing to get a scholarship to help pay for an education, or they want to play in the majors,” Andrew said, “we’re here to provide everything we can to help them achieve their goals and dreams, no matter what level of ball they play.”

While the country continues to address issues surrounding COVID-19 and the rise of deaths due to the delta variant, injuries and violence remain a major concern of healthcare professionals and community advocates. They are the number one killer and cause of hospitalization for people ages one to 44, and many are preventable with the use of safety practices, products and the implementation of strong legislative policies.That is why, the country’s top injury and violence prevention organizations are joining forces Thursday November 18, 2021, for the second annual National Injury Prevention Day.

The Injury Free Coalition for Kids^®, Safe Kids Worldwide, Safe States Alliance, the American Trauma Society, the American Academy of Pediatrics, BeSmart a division of Everytown for Gun Safety, the Society for Advancement of Violence and Injury Research, the Trauma Centers of America Association and JPMA Cares of the Juvenile Products and Manufacturers Association take part in this effort to educate the public about the burden of injuries and violence to families and communities. Injury Free Coalition for Kids – Kansas City will be among those taking part.

“Whether it be at home, on the road or at play, precautions need to be taken,” said Barbara Barlow, MD, the Founder and Director of the Injury Free Coalition for Kids. “Children are needlessly dying. Every day, 20 children die from preventable injuries, resulting in more deaths than all diseases combined. This has to change.”

On November 18^th, trauma centers and community advocates across the country will work to educate families and community leaders about ways to develop safer environments and provide many with tools to do so. Local and state government representatives will be challenged to acknowledge these concerns and make efforts to address them. At 12:00 p.m. (CST), the public is invited to take part in a live national conversation about the country’s top injury and violence concerns during a one-hour Twitter chat using the hashtag #BeInjuryFree. As the sun goes down that day, hospitals, landmarks, businesses, monuments, neighborhoods and government offices will be asked to shine a green light to raise awareness about the need for change.

Children’s Mercy Kansas City, the lead agency for Injury Free Coalition for Kids – Kansas City, is partnering with local law enforcement, fire departments, public health, child care, educators, families and other healthcare organizations to put the spotlight on the impact of firearm injuries in children and their families. The Hospital’s Council on Violence Prevention is hosting a “Lunch and Learn” on November 10^th to describe the impact of firearm injuries in Kansas City’s children and the risk of firearms in the homes of teens and others who are at risk of suicide attempts. The presenters are Kristyn Jefferies, MD and Shayla Sullivant MD from Children's Mercy. The City of Kansas City is offering a video recording of their interview with Samuel Dillman, MD, a Children’s Mercy Emergency Departmentphysician with the topic of firearm injuries of children treated at CM.

On November 18^th, Injury Free Coalition for Kids – Kansas City, in partnership with Charlie’s House, are invitingHead Start Parents and local injury prevention partners to discuss the impact of firearm injuries in the home and how to reduce the risk on unintentional access to a firearm by children. Kristyn Jefferies, MD will present a poster describing the impact of firearm injury in children residing in the Kansas City community. Letrice Murray, founder of the local Mother’s in Charge along with Tammy Kemp, CMED Social Worker will provide an opportunity to learn how their work helps families through the trauma of a firearm injury to a loved one. BE SMART for Kids and Grandparents Against Gun Violence representatives will partner with the Kansas City Police Department’s Community Interaction Officers (CIOs) toprovide demonstration and distribution offirearm safety devices. Mid-West Trauma Council members will provide a life-saving technique to “Stop the Bleed” and register attendees for the training to be held at a later date. Children's Mercywith Charlie’s House will provide first aid kits and home safety kits to participants.

On National Injury Prevention Day, anumber of cities will focus on a specific preventable injury; San Diego will address bike safety, Kansas City will address firearm and home safety, Nashville will look at sleep safety, and Peoria will address child passenger safety. Boston will cover a variety of injury prevention topics including CPS, concussion and youth violence prevention during a conference.

To learn more about what’s being done in other cities across the country go to www.injuryfree.org.

For more information about National Injury Prevention Day or to arrange an interview in advance please contact, Lisa Augustine, 816-302-0197, email: laugustine@cmh.edu or E. Lenita Johnson 816-651-7777, e-mail: Estelljohnson@sbcglobal.net.

Many children depend on school lunch and are at risk of going hungry when school is not in session. For that reason, Children's Mercy has participated in the USDA Summer Food Service Program since 2016.

Due to the COVID-19 pandemic, the USDA allowed all summer meal programs to begin early and continue through the school year.From March 2020 through August 2021, the Children’s Mercy "Kids Eat Free" program served43,483 mealsat multiple locations throughout the metro area.That’s a record of 73 weeks for a program that usually operates for 10 weeks during summer months only!

To better serve families during these difficult times, community partnerships were leveraged to provide not only nutritious lunches, but also bags of fresh fruit and vegetables, book and reading kits from the Kansas City Public Library, and free gun locks at some locations.

Since this program started over 5 years ago, 66,765 meals have been served.The Kids Eat Free program will return next summer.

Learn more about the Kids Eat Free Program at Children's Mercy.

The story began earlier this year when Keith Riley, Manager-Distribution Operations in Supply Chain, and the Distribution department team worked with the Health Sciences District Project SEARCH to provide internships for two student-interns. Project SEARCH, under the umbrella of Project RISE at Children’s Mercy, is a one-year internship program for North Kansas City School District students who have developmental disabilities and are in their last year of high school. It is targeted for students whose postsecondary goal is competitive employment and who would benefit from additional workplace training and support. Upon completion of the program, the goal is 100% successful employment for the student-interns.

According to the Bureau of Labor Statistics, only 29% of working-aged individuals with disabilities are employed, compared to 70% of working-aged individuals without disabilities:https://www.bls.gov/news.release/pdf/disabl.pdf

Project SEARCH allows students to participate in various internships to explore a variety of career paths. The student-intern learns specific job skills, as well as develops employability skills necessary for success in the workplace. Project SEARCH provides an opportunity for participants to obtain employment through a display of ability by breaking down stereotypes regarding disabilities.

The Distribution department worked with the Project SEARCH job coach and special education teacher to mentor their interns. Through this experience Keith and his team also grew to realize that people with disabilities are capable when given a slower pace to learn new tasks, and when they are trained using their unique learning style. This open-minded approach allowed the student-interns to stretch, grow and reach their full potential. Ava thrived in this accepting environment and kept asking to layer on more skills—so much so, that she was hired by the Distribution department.

The Distribution department could not be more thrilled to have Ava as part of the team.

Distribution Lead Bonnie Rogers said, “Ava always came to work on time with a smile and determination to complete her tasks for the day. Ava took much pride in her daily tasks. When her Project SEARCH time as a student came to an end, Ava was very sad. She said she really liked it in Distribution andsaid she will be back.”

Ava applied for a position at CM and completed the interview process. Everyone was extremely happy that we were able to offer her full-time employment. The Distribution department is grateful to have had this experience and will be looking forward to future opportunities.

Keith said, “After 25 years in management and now experiencing this with Project SEARCH, I feel I learned just as much from this experience as the students.”

The Distribution department’s and Keith’s openness to embrace diversity and inclusion culminated with Keith being asked to be the guest speaker at this year’s Project SEARCH graduation ceremony, and they were presented with the Department of the Year Award.

“This is a great tribute of the awesome work Distribution has been doing to support these students and a great way to highlight the value of hiring individuals with different abilities,” said Angie Bright, Project RISE manager.

Learn more about Project Rise at Children's Mercy

The ability to harness genomic technologies to provide a more accurate diagnosis for diseases in children needs to be accompanied by treatments that are also tailored to the individual patient. Many medications available to treat newborns, infants, children and adolescents have been developed primarily for similar diseases in adults, and relatively limited information is available to guide the use of these agents in children of different ages. Even less information is available to inform adjustment of doses to best treat individual children.

No Parent Thinks Their Child is Just “Average”

Existing dosing guidelines generally represent the dose that, on average, provides the desired therapeutic response for a population of patients. On the other hand, each parent recognizes that their child is special – not just “average” — and so the selection of medication and the dose of that medication should take into consideration those factors that make each child unique.Two of these factors are the child’s genetic makeup, or genome, as well as their stage of development, referred to as “ontogeny”. Multiple additional factors, such as sex, diet, lifestyle factors, other disease conditions, concurrent medications and environmental factors may also contribute to variability in the way that a child’s body breaks down medications or responds to them in terms of improvement in symptoms or the potential for side effects. The challenge is to identify as many of these factors as possible and include them in tools designed to individualize treatment for each patient.

“GOLDILOKs and Precision Therapeutics Research for Children”

To address this challenge across multiple clinical areas, theGOLDILOKs(Genomic- andOntogeny-LinkedDoseIndividualization and cLinicalOptimization forKids) research program has been designed to address the concept of “Not too big, not too small … the medication and dose that is “just right” for each child”. Current programs focus on validation and refinement of an artificial intelligence-based predictor of response to selective serotonin reuptake inhibitor (SSRI) antidepressants in adolescents with depression, development of dosing tools for a medications, such as metformin used in the management of pediatric patients with insulin resistance and type 2 diabetes mellitus and pimozide used to treat Tourette syndrome, among others. A major goal of the Precision Therapeutics team is to develop partnerships with pediatric providers as well as patients and their families to integrate research activities into clinical care in a manner that is minimally disruptive to patients and families and clinic flow.The ultimate goal of thePrecision Therapeuticsprogram is to generate new knowledge that is directly relevant to clinical care of the patient populations seen at Children’s Mercy Kansas City and beyond.

View the article via BioNexus KC

Learn more about the Children's Mercy Research Institute andGenomic Answers for Kids

Children’s Mercy’s Level 1 Pediatric Trauma Center has received verification from the American College of Surgeons (ACS), becoming the only ACS-verified Pediatric Level 1 Trauma Center between St. Louis and Denver and one of about 50 freestanding such centers in the country.

“ACS verification represents the highest level of pediatric trauma care available, reducing the risk of complications and leading to better outcomes for patients,” said Senior Director of Emergency Services, Transport and Patient Logistics Shanon Fucik, BSN, RN, MBA, CPN, NEA-BC.

“It requires the expertise and commitment of so many, including our talented Trauma Services team and all the Children's Mercyproviders, nurses and emergency department (ED)leaders who partner with us to provide exceptional care to our patients and families,” she added.

Trauma centers across the United States are identified in two ways – by a designation process at the state or local level through legislative or regulatory authority, and by the ACS’s prestigious verification process. Children's Mercy is already the region’s only Level 1-designated pediatric trauma center; ACS verification takes that one step further, meeting essential criteria that ensure capability and institutional performance for every aspect of trauma care. It’s the gold standard.”

Rigorous review

David Seastrom, RN, BSN, Trauma Program Manager, led the challenging process of assembling a 120-page pre-review application documenting everything from 24/7 on-site availability of surgeons, critical care physicians and anesthesiologists, defined on-call subspecialist response times and trauma care credentialed nursing staff, to multimodality transport services, trauma care simulations and injury prevention and rehabilitation programs.

The application was followed by a virtual site visit involving interviews with individual specialists and administrators and chart review to confirm that policies and best medical practices are followed.

“Our department worked more than 7,700 hours cumulatively since January to get ready for this survey and also keep up our normal work load,” David said, citing appreciation for team members Erica Livingston, RN, BSN and Maria Ginger-Wiley, RN, BSN, CCRN, both Performance Improvement Coordinators; Jordan Palmer, BSN, RN, Outreach and Education Coordinator; Tabatha Peterson, BSHIM, RHIA, Lead Trauma Registrar; and Trauma Registrars Stacy Normann, AAS, Victoria Stallings, CRCR, and Emily Gribble.

The results are worth it, said David.

“This is the culmination of hard work, dedication, teamwork, leadership commitment and hours of preparation, and a milestone for the entire team,” he said. “The Trauma Service department leads the way, but it is a team effort that requires representation from nearly every unit that cares for trauma patients – medicine, nursing, radiology, laboratory, pharmacy, ED, ICU, transport and more.”

Added David Juang, MD, Trauma Services Medical Director: “Trauma Services and the staff and physicians of Children's Mercydeserve recognition for their hard work and dedication, expertise, and tireless hours they provide to the children and families which has made this verification possible.”

Better outcomes

The goal, of course, is exceptional care for patients, something the ACS verification program aims to inspire. Studies have shown that ACS-verified institutions, adult and pediatric, result in fewer patient complications, reduce length of stay, hospital mortality rates and cost.

“In an era when hospital differentiation is important, being an ACS-verified trauma center reinforces our reputation as a provider of exceptional, specialized care for children and families within the community and the region,” Shanon said.

“I could not be prouder of our team for how they approached survey readiness which led to this wonderful outcome,” added Senior Vice President and Chief Nursing Officer Tangula Taylor, MBA, BSN, RN, NE-BC. “The meticulous attention to detail and accountability to ensuring compliance with the many standards made a difference, not just for the survey, but ultimately for our patients, families, and community. This is a phenomenal achievement for Children’s Mercy.”

Learn more about trauma care at Children's Mercy.

Jay Portnoy, MD, FACAAI, Pediatric Allergy & Immunology, Telemedicine, has been selected to receive the 2021 “Gold Headed Cane” award by the American College of Allergy, Asthma and Immunology (ACAAI). The award is the highest honor presented by the ACAAI for lifetime achievement.

“It is obvious that our members value your ongoing dedication to the College and the medical community,” said Luz S. Fineman, MD, FACAAI, president of ACAAIU, in a letter informing Dr. Portnoy of the award.

Dr. Portnoy has been with Children’s Mercy Hospital since 1985. He is a professor of Pediatrics at the University of Missouri-Kansas City School of Medicine, and he was Division Director of Allergy/Immunology until 2016 when he became the Medical Director of Telemedicine. Dr. Portnoy founded the Allergy Training Program in 1997 and has been active in mentoring allergy fellows throughout his career. He lives in Overland Park, Kansas, with his wife, Ellen, and their two cats. Jay and Ellen's children are Lara and her husband, Zak; and Michael and his fiancée, Glenda. Among them they have five grandcats and two granddogs. Fortunately, nobody in the family has pet allergy.

The Gold Headed Cane award is a concept used today by many medical schools and specialty societies to recognize a physician who symbolizes the pursuit of the highest standards of scientific excellence and integrity. The award serves as an inspiration to younger doctors and encourages them in family, social, civic, religious, and professional life to cultivate character that earns the respect and goodwill of colleagues and the profession at large.

Canes were commonly carried by English physicians in the 1600s. They contained a cavity for aromatic substances such as rosemary, camphor or Marseilles vinegar to counteract offensive odors and prevent contagion.

The tradition of the Gold Headed Cane originated in 1689 with John Radcliffe, who had a particular interest in asthma as the personal physician to King William III, an asthmatic. Dr. Radcliffe began the tradition of passing the cane to a successor whom he considered to be the greatest English physician of his time.

Dr. Portnoy will officially receive the award on Nov. 6 during the ACAAI annual meeting in New Orleans.

Congratulations, Dr. Portnoy!

Learn about at Children's Mercy.

By JuYeon Kim

As a Make-A-Wish recipient, 18-year-old Trenton Elliot could have chosen any surprise for himself. But instead, he chose to give back, donating five Xbox Series X and five PlayStation 5 gaming systems to Children's Mercy.

“I was nervous, but I was overall just excited for what this day would entail,” said Elliot, who has cystic fibrosis. “The hospital has just helped me out for the last five years that I’ve known I had cystic fibrosis, so I wanted to give back to them."

Elliot said he hopes the new gadgets will help ease the experiences of patients like himself and 16-year-old Reese Davis.

“Hospital time is very slow – almost feels like time freezes," Davis said. " And anything to distract you to pass the time helps you so much."

Trista Tate, Children’s Mercy’s volunteer program director, said the magnitude of Elliot’s donation will become twofold in years to come.

“If he would’ve gotten a wish, it would have impacted him in that moment," she said. "This wish is impacting thousands of patients for years to come.”

See the full storyvia KSHB

Learn more about Ways to Give and help our families at Children's Mercy

ByTrish Lollo, President ofSt. Louis Children’s Hospital,Paul Kempinski, President & CEO of Children’s Mercy Kansas City,Steven Burghart, President of SSM Health Cardinal Glennon Children’s Hospital,Joseph Kahn, MD and President of Mercy Children’s Hospital St. Louis

Since the onset of the COVID-19 pandemic, it has been generally accepted that the virus is not as dangerous to children. Of our nation’s more than 600,000 deaths attributed to COVID-19, nearly 400 have occurred in children ages 0 to 17. For anyone tempted to view this impact dispassionately as “minimal,” we can assure you it is not.

These pediatric COVID statistics obscure the enormity of a shadow pandemic that is pulverizing our country’s kids: the deterioration of mental, emotional, and behavioral health.

* * * * *

Recently, theweekly senior leadership meeting at St. Louis Children’s Hospital was halted when one of its participants received an alert. “I need to inform this group that we have a 16-year-old on campus who our public safety officers believe is at risk of throwing themselves from the top of our parking garage in an apparent suicide attempt.”

Fortunately, the child in this case did not take their own life.

A 14-year-old with no prior history of mental health issues arrived in the emergency room with acute suicidal ideation, having a plan and the means to carry it out. The plan had been discovered after the teen shared a text message with a friend, saying goodbye. Inpatient psychiatric care was needed, but beds at the hospital and throughout the St. Louis region were full. While caregivers searched for available inpatient beds in Columbia, Mo., Springfield, Ill., and beyond, the patient stayed in a small exam room in the emergency department, distraught parents alongside. The patient’s stress and parents’ despair increased by the hour. After 80 hours, an inpatient bed became available in a regional adolescent psychiatric unit. The teen was transferred, but appropriate acute care was initially delayed — time lost toward improving health and well-being.

These are but two examples. Anecdotes like this have become unnervingly commonplace at children’s hospitals in Missouri and across the nation.

* * * * *

Make no mistake: our current crisis in pediatric mental health was gaining steam well before COVID-19 took hold. Nationwide, the rate of suicide among kids ages 10 to 24 increased by 60% from 2007 to 2018. Admissions and emergency room visits for suicide attempts doubled at children’s hospitals from 2008 to 2015. Similarly, visits to children’s hospitals by kids ages 6 to 12 seeking mental health care needs also doubled from 2016 to 2019.

For the last 15 months, kids’ well-documented social isolation and increased family stress has only intensified the troubling pre-pandemic trends in severe mental health conditions such as suicide ideation, self-injury and substance abuse disorders. TheChildren’s Hospital Association(CHA) notes that from April to October 2020, the proportion of mental health emergency department visits increased significantly among kids ages 5 to 11 (+24%) and ages 12 to 17 (+31%) vs. the same period in 2019.

This spring, it’s as if the floodgates broke wide open. Children’s hospital emergency rooms nationwide have become overwhelmed with families in need of immediate help. On average, some of Missouri’s most reputable pediatric health care providers — a group includingSt. Louis Children’s Hospital,Children’s Mercy Kansas City,SSM Health Cardinal Glennon Children’s HospitalandMercy Children’s Hospital St. Louis— saw significant increases of patients presenting to our emergency departments with behavioral health needs vs. the same period in 2019.

The implications for the timely, appropriate, and safe care of kids with mental health needs are multifaceted.

1.At present, the demand for pediatric mental health services far exceeds the available supply.This applies to both human and physical resources. On the former, there simply aren’t enough specially trained healthcare providers to care for this population of kids. The CHA estimates our nation has a demonstrated need for 47 child psychiatrists per 100,000 kids and teens. Currently, there are 10 child psychiatrists per 100,000. On the latter, hospitals lack the number of inpatient beds and opportunities for placement externally to provide appropriate and safe care to patients whose needs are the most acute.

2.Children’s hospitals are not equipped to care for patients with mental health needs at scale.Because there is a dearth of specialty providers for these kids, children’s hospitals are bearing the brunt of the volumes because, in some cases, our emergency departments are a child or family’s only refuge. Holding kids with mental health needs in our emergency rooms — often for 24 hours or more — while waiting for an inpatient bed to become available is not therapeutic. Stimulation from a busy and sometimes chaotic environment can increase their levels of anxiety and agitation. It frequently results in a worsening of symptoms, higher risk of harm for both patients and staff, and greater likelihood of elopement — defined as patients leaving the hospital when doing so may present an imminent threat to their safety.

3.“Safe care” is a two-sided coin.Children’s hospitals — and more specifically, the people who work at them — exist to take care of our communities’ most vulnerable kids at their times of greatest need. But even those who thought they knew what they signed up for — the triumph, the heartbreak, the risk — couldn’t have imagined this. Our most highly acute patients can be a threat to themselves, but also to our staff. Patients who are in crisis do not always know how to express themselves. At times they lash out, and several have inflicted extensive harm on many of our frontline team members. With the growing shortage of healthcare workers across the country, especially in the state of Missouri, we need to do everything we can to protect our staff from harm, while also ensuring that our patients are receiving the highest-level care.

* * * * *

As a group, Missouri’s children’s hospitals continue to highlight the need for immediate federal, state, and local support to help providers meet the demand of our kids, our families, and our communities. We believe that long-term solutions are needed to address decades of chronic underinvestment in pediatric mental health services and infrastructure. We have begun to convene various stakeholders in behavioral health to explore potential solutions and look forward to bringing providers, patient advocates and the state together to craft a best-in-class approach to addressing the behavioral health needs of our communities.

Our kids, families and communities deserve better.

View the letter via Medium

Learn more about the

By The University of Kansas Cancer Center

Acute lymphoblastic leukemia (ALL) is generally a highly treatable and curable form of cancer. The five-year survival rate for children with the most common form of ALL has increased over time and reached about 90 percent. However, some children do not respond as well to the standard course of therapy for ALL or their leukemia returns, making their cancer significantly more difficult to effectively treat.

A new treatment approach was approved by the Food and Drug Administration in August 2017 targeting this group of children who have what is called refractory or relapsed ALL – meaning their cancer either did not respond well to initial therapy or they experienced a relapse of their leukemia. The groundbreaking treatment uses chimeric antigen receptor technology (also called CAR-T) to re-engineer a patient’s own T cells to target CD19 proteins on the surface of cancer cells.

Children’s Mercy has a long and proud history in the development of CAR-T therapies for children and young adults, having supported the early development of the technology used in the innovative treatment. The hospital’s experience dates back to 2010 when it was one of only a few institutions with open clinical trials of CAR technology.

Those Children’s Mercy trials were led byDoug Myers, MD, a pediatric hematologist-oncologist who serves as the hospital’s section chief of Bone Marrow Transplantation. Dr. Myers is an associate professor of pediatrics at theUniversity of Missouri-Kansas City School of Medicineand serves as a clinical associate professor of Internal Medicine at theUniversity of Kansas School of Medicine. Dr. Myers was also one of the few physicians on the steering committee of the trial that led to the approval of KYMRIAH.

The experience of Dr. Myers and Children’s Mercy in the early development of CAR technology made the hospital among the ideal sites for a multi-site trial of what became a dramatic and revolutionary treatment for cancer. Children’s Mercy entered into an agreement with Novartis to participate in the company’s KYMRIAH trial, and the commercial Novartis treatment available at the hospital was the first FDA-approved CAR treatment for cancer anywhere.

Though he is hesitant to call it a “cure” per se, Dr. Myers says the CAR-T therapy “has provided prolonged remission in clinical trials for a large number of patients who had no other option. There are few other options that would provide this potential for long-term remission.”

Read the full article via Cancer History Project

By Aryana Azari

All it took for one boy in the hospital to make some new friends was a pack of Post-it notes.

Meyer Mixdorf, 5, from Arkansas, was at Children's Mercy Kansas City hospital for brain cancer-related treatment when his mother decided he needed some cheering up. Confined to his room for a few days after a stem cell transplant in May, Meyer's mother, Liz Mixdorf, decided to entertain him by making Post-it art of a smiley face on the window.

The next morning, they found that a building across the street had responded with a smiley face of their own.

"We called them our mystery friends," Liz Mixdorf said. "It was so fun."

Although the Mixdorfs didn't know it, across from them was Truman Medical Centers/University Health.

"I was just kind of looking out the window and there was a little Post-it note smiley face up there," Johnna Schindlbeck, a Truman Medical Centers employee, told "GMA." "I thought it was cute and grabbed some notes and put up a little winky face."

The back and forth communication through Post-its continued and evolved into more elaborate designs, including Mario characters, Angry Birds, Ninja Turtles and Minions.

"I thought, 'Oh wow, this escalated fast,'" Schindlbeck laughed, and added that other hospital staff joined in to help create the art.

Initially, neither side knew who was on the other end until Mixdorf decided to put up a note that read, "Thank you <3 mom."

"If this little art makes him happy, gives him something to look forward to, and it makes his mother and his family know that other people care ... it was so rewarding for me to see," Schindlbeck said. "I was just at the right place at the right time to be part of something that was so simply beautiful."

With Meyer's latest MRI showing no sign of disease, according to Mixdorf, the family will soon be heading back home and taking Meyer to the zoo as a treat.

Read and see the full story via Good Morning America

Learn more about the Children's Mercy Cancer Center

As summer heats up and temperatures get warmer, it is important to take precautions and protect yourself from heat illness while exercising outdoors. Extremely high temperatures put athletes at an increased risk for heat illness and knowing the steps for prevention can help keep you safe.

When to exercise

• Avoid the midday sun by exercising before 10 a.m. or after 6 p.m., if possible
• If you must exercise in the middle of the day, try to do it in shady areas
• When exercising in high heat and humidity, rest 10 minutes for every hour

What to wear

• Wear lightweight and breathable clothing
• Avoid dark clothing
• Change wet clothing frequently
• Wear sunscreen. A sunburn can make it harder for your body to cool itself

Staying hydrated

• Maintain your hydration level from day-to-day throughout your exercise activities. Do not start off these activities dehydrated.
• The best way to monitor your hydration is to monitor your weight. While wearing minimal clothes without any shoes and socks, weigh yourself daily to ensure that your weight is not fluctuating.
• Weighing yourself daily during consistent exercise or practice allows you to monitor if you are over-hydrating, which is just as big of a problem as under-hydrating.
• Water is an adequate source of hydration for 1-2 hours of activity, but sometimes athletes are more likely to hydrate with a commercial sports drink because it has a taste to it.
• For student-athletes doing a lot of hard exercise, or having a hard practice, it is beneficial to have a recovery drink within 30 minutes of the activity. Chocolate milk is a great source because of its excellent ratio of fats and sugars, and hydration benefits.
• Make sure that your student-athlete is acclimated to the heat prior to having to practice or exercise under warmer conditions.

Heat stroke signs and symptoms

• Nausea
• Headache
• Weakness
• Poor concentration
• Flushed skin
• Lightheadedness
• Fatigue
• Vomiting

If you develop any of these heat stroke symptoms, you must take steps to lower your body temperature and get hydrated immediately. Stop exercising right away and get out of the heat. Cool your body down by removing extra clothing or equipment. Sit in a tub of cold water or place wet towels or ice pack on your neck, forehead and under your arms. Continue to drink fluids. If your condition gets worse or you do not start to feel better, seek medical attention or speak with your healthcare provider.

This article has been clinically reviewed by Greg Canty, MD Sports Medicine Physician

Learn more about the Children's Mercy Sports Medicine Center

By Rae Daniel

The Ally Project is a program involving Olathe East High School students who are a part of the 21st Century Future Educators Academy.

The students tutor children who have serious illnesses and receive treatment at Children's Mercy.

Back in 2018, 41 Action News interviewed Ally Baier, a girl who was battling glioblastoma cancer. The "Ally Project" is named after Ally, who had a passion for teaching.

She passed away fromcancer in May 2020.

Students continue to honor her legacy by adding to the program. The newest addition is themed learning boxes for patients.

"It's really hands-on, and they provide everything that the patients need so it's really amazing and creative," Mazeitis said. "I just think Ally would absolutely love it. I know she would and I would, I wish I could hear more of her ideas because she always had some crazy, zany, great creative ideas and I feel like that's kind of being carried on. "

"It'll give them a chance to be educated no matter how sick they are and it feels good to know people are still being educated even if they're in the hospital, " Ally said in a 2018 interview with 41 Action News.

While it's been a tough journey for Ally's mom and family, her legacy continues.

"Watching my own daughter be hospitalized and miss out on school, it's a really good opportunity to make those kids who are in the hospital not feel alone," Crysta Baier said. "You feel happy. Still have a connection to some normalcy."

Watch the broadcast and read the full article via KSHB 41

For more information on the Ally Project,visit the family's website set up in Ally's honor

By Kelly Eckerman

Children's Mercy just added a special member to its health care team. You can't miss her. She has four legs and fur and she practices a special kind of medicine. Milly is the newest therapy dog now on duty.

She won't be wearing a stethoscope, but Milly, a 2-year-old golden retriever will be making rounds checking in on young patients at Children's Mercy.

She has wasted no time working her medical magic. Milly is a specially-trained therapy dog and knows just what to do.

Milly joins Hunter whose been with the facility dog program for six years. Along with the smiles, the hospital said the dogs can help patients emotionally and physically.

"There are sometimes people in rooms that are really stressful and bringing a dog in is something so unique that humans can't do," said Aimee Hoflander, Children's Mercy facility dog program coordinator. "Their blood pressure may decrease or their respirations may lower that can show signs of pain control or lower stress."

While Milly and Hunter are there for the patients, they seem to have an impact on everyone.

"Seeing the dog walk through the hallway when you're not expecting it, you know, people kind of squeal and get excited and just are immediately happy," Hoflander said.

Watch the broadcastand read the full article via KMBC 9

Donate here if you’d like to support the facility dogs and other amazing programs offered by Patient and Family Services.

Norah West is an 8-year-old girl with a special gift for singing, reading and acting. Each month, she comes to the hospital for chemotherapy and immunotherapy to manage her neuroblastoma. And each time, Children's Mercy staff are treated to a special performance.

“When I first met Norah, I learned about her love for reading from our school teacher,” said Jenna McCoy, CCLS, Child Life Specialist. Since Norah was an avid reader and natural storyteller, Jenna had the idea to let her do a reading for the staff in the 4 Henson Hall playroom.

The story was Rapunzel, but it turned out that Norah wanted Jenna to read while she acted out the story. “Little did I know what this would turn into,” said Jenna. Norah wore a crocheted Rapunzel wig and performed scenes, at times pulling in people from her crowd of nurses and students to be characters in the story or act things out with her. At the end, she sang songs from the Disney movie “Tangled.” “I don’t think there was a dry eye in the playroom when she sang ‘I see the light’ from the movie,” Jenna said.

That performance was the start of a routine that now happens with every single one of her inpatient admissions. Norah chooses a princess story and brings a dress or outfit to perform in. “Ever since the very first one we come prepared now with the dresses and the wigs,” said Norah’s mom, Holly West.

While the performances at Children's Mercy began early this year, singing isn’t new to Norah, who often starts the day with a song. “When she’s feeling well, we can tell because she wakes up singing,” said Holly, adding that Norah has been singing as soon as she wakes up since she was just shy of two years old.

While singing and performing bring Norah joy, it also brings about smiles and laughs from the unit staff. “We all look forward to Norah getting admitted now so we can be graced with her acting and singing skills,” said Jenna.

Seeing the staff involved in Norah’s performances is a nice break for Holly, whose conversations with the care team is on a more serious level. “I’m always surprised - but not really surprised - at the nurses that get involved in it,” she said, recalling Norah’s very first performance, where everyone in the room was clapping and dancing around and having a good time. “To see these nurses take a break from life on the oncology floor, which can sometimes be really rough, and stop and dance around and smile…to see them let loose is really nice for me,” she said.

Norah has performed Cinderella, Beauty and the Beast and most recently, Snow White for the second time. The audience has grown, with nurses and students coming in to watch her in the playroom. “It is a whole group affair,” said Jenna, who shares the role of reading scenes with a patient activity coordinator. “I love that this has given Norah something to look forward to and actually be excited about when getting admitted to the hospital,” she said.

Music Therapy often joins in the performances, including intern Joseph Cooper. “I got to know Norah pretty early in my time here at Children's Mercyfor my music therapy internship,” he said. Joseph has played the part of the prince in each performance.

“He is always in every single production,” said Holly. “He is such a good sport,” she said, adding that Norah calls Joseph her best friend.

“These performances have played such a role in normalizing her time here, providing a beautiful and supportive space for musical expression, imaginative play and autonomy,” said Joseph, adding that she usually sings acapella.

“Norah really does love the attention and acting things out,” said Holly. “She’s born to be a star.”

Learn more about the Division of Hematology, Oncology, and Blood and Marrow Transplant at Children's Mercy.

Learn more about Child Life Specialists at Children's Mercy.

The Kansas City Business Journal has named Michelle Wimes, Chief Equity and Inclusion Officer, Children's Mercy, as one of its "Women Who Mean Business" honorees, whichrecognizesprofessional women who are making significant strides in their business or industry and in their community.

A panel of six judges selected the 25 womenfrom hundreds of nominations.

Those chosen must be an entrepreneur leading a business, the highest-ranking woman or highest-ranking woman reporting to a female CEO, a partner leading a practice group or serving on an executive committee, or a nonprofit executive.

Read the full story via the Kansas City Business Journal.

Learn more about Diversity, Equity and Inclusion at Children's Mercy.

Watch Walking the Talk with Michelle Wimes.

Like a sea turtle hatchling struggles to overcome driftwood, footprints, predators and other obstacles to reach the ocean, 18-month-old Emery Gurley has bravely made a difficult journey home.

Emery spent more than 500 days at Children’s Mercy, coming here when she was only six weeks old. Her battle with Infantile Myofibromatosis, a rare disorder characterized by the growth of tumors affecting the skin, bone, muscle, soft tissue and internal organs, has involved chemotherapy, multiple surgeries and near-death experiences. But Emery has prevailed, and on April 26 she went home to El Dorado, Kansas near Wichita, about 2½ hours from Kansas City.

Emery’s mother, Autumn Gurley-Price, was with Emery every step of the way, staying at the Ronald McDonald House and rarely leaving Emery’s bedside. Autumn draws the comparison of Emery’s journey with a sea turtle’s determination to survive.

“Ever since Emery was born, I kept seeing sea turtles everywhere we went,” Autumn said. “We even moved into a hospital room with a sea turtle on the wall…from then on, I knew this was her journey; she WAS the sea turtle.

“Her recovery was slow; we did it at her pace,” added Autumn, who found the similarities between Emery and sea turtles so compelling that she authored a book titled “The Little Leatherback.”

“I just knew her experience was like a little sea turtle’s, so I wrote and illustrated a book about a sea turtle hatchling and all of its struggles getting to the ocean. It was one of the ways that helped me cope with the situation and share Emery’s story in a small way.”

When Emery was born, Autumn noticed just one tiny hard spot on her skin; as more tumors appeared, Autumn became concerned, but repeated examinations produced no diagnosis. Emery lost her appetite and became extremely lethargic. Finally, Autumn brought Emery to Kansas City for a dermatology appointment at CM Broadway, and immediately the seriousness of Emery’s condition was recognized. She was admitted at the Adele Hall Campus, where she began her extended stay.

Tumors eventually affected Emery’s skin, muscles, bones and internal organs, including her stomach and intestines, which lead to intestinal blockages. She required IV nutrition because her ability to absorb nutrients from her digestive tract was so limited. At one point she required an ostomy (a surgically created opening in the abdomen that allows waste to leave the body through the skin of the abdomen) and a mucus fistula (another surgically created opening into the intestines through which she was able to receive additional nutrition).

Headed Home

But with perseverance, and a sea turtle hatchling’s determination, Emery recovered and headed home, pretty much as a regular, healthy toddler.

“It’s been a long, emotional journey,” Autumn said. “The reality of going home has just washed over me, and I’m overjoyed that its really happening.”

Autumn said the experience with the Children’s Mercy medical staff was “a blessing.”

“We communicated together, we brainstormed together, the medical staff and I worked as a team to get Emery where she needed to be.”

Members of Emery’s medical team said Emery lifted their spirits as they worked with Autumn to determine the best course for Emery’s treatment.

“Emery is an awesome little girl,” said Joel Thompson, MD, Hematology/Medical Oncology. “I think Autumn’s choice of a sea turtle as her ‘mascot’ is so apropos.Whatever obstacles this disease (or the treatments she required) threw at her, she just kept plodding along at her own pace and with impressive perseverance and resilience.All the nurses, therapists and physicians on 4 Henson-Hall grew to love this sweet girl in a special way, and not only did we take care of her, but she found ways to lift us up.I remember one nurse practitioner telling me that when she was having a bad day, she would just go visit Emery, see her bright smiling face, and find the positive energy to face the rest of her shift.”

Dr. Thompson added, “Autumn was also amazing.There were so many dips, dives, twists, and turns in Emery’s road to recovery, and Autumn was stalwart through it all.Some of those were expected, and some were very unexpected.But whatever it was, she would take a deep breath and ask what we needed to do to make Emery better.Autumn was a strong but respectful advocate for Emery’s needs and was a great partner as we navigated Emery’s unique medical course.When we had a tough decision to make (such as whether to pursue surgery at a particular time), we could present the options, the risks and benefits, and our recommendation, and then we could trust Autumn to take it all in, consult with her family and support system, and make the best decision for Emery.We are lucky to take care of Emery and to partner with Autumn in her care.”

Megan Lynch, Pediatric Nurse Practitioner, Hematology/Oncology/BMT, said, “Both Emery and Autumn were a joy. I am so happy that I had the opportunity to take care of the sweetest, most charismatic baby! Autumn was so very involved and so intuitive about Emery’s needs. There were daily facetime sessions with Dylan (Emery’s dad) and many family members. What a group effort!

“I would often go see my sweet patient for a pick-me-up,” Megan added. Emery is such a happy little girl. I would go to say, ‘Hi,’ and she would clap her hands when she saw me. I knew that I could make it with her support!”

Autumn’s advice to other parents who face long-term care for their children is, “Keep your faith; communicate with your medical team; work together; be hands-on and fight for your child. Advocate for your child, and you’ll make it.”

Although Emery’s world has consisted of a hospital room for most of her life, Autumn said she expects the transition home to be smooth.

“She’s barely been outside; she probably won’t remember riding in a car; we have two cats she’s about to meet. But she’s very expressive and she loves everybody, so she’ll adjust just fine, I’m sure.”

Learn more about The Division of Pediatric Hematology, Oncology and Blood and Marrow Transplantation at Children's Mercy.

Like most of us during the pandemic, Mallory Brock, RN, BSN,4 Henson Hall,wanted to do something to help.

Unlike most of us, she knew just what to do.

Mallory has been sewing for the last 10 years. It’s a skill she learned from her grandmother as a child and picked up again after having children of her own. She makes quilts and other items for her online Esty store and sometimes sells at a local boutique.

In May of 2020, she began using her skills to sew homemade face masks. At first, it was just for friends and family and her Etsy shop. Then, she decided to sell them to raise funds to support the hematology/oncology patients and families she works with as a nurse on 4 Henson.

“It gave me something to focus on at that point in the pandemic,” said Mallory. “It was a way to focus on doing something good.”

She reached out toherleadership to find the best avenue to help those families with children undergoing treatment for cancer or blood disorders during the pandemic. “They knew I wanted to donate to our patient population,” said Mallory. They recommended the ErinAndraWilson Foundation, which provides support to families of children with cancer and blood-related illnesses being treated at CM.

Mallory was familiar with the foundation, named after Erin Wilson, a patient who was treated at Children's Mercy. She went to nursing school with Erin’s sister. “That made it even more exciting to me because I had a personal connection with their foundation and that’s who leadership recommended. It worked out perfectly,” she said.

She started promoting the masks by word-of-mouth, then Facebook, selling them for $5 each. It was mostly friends, co-workers and family. Then she created a Google form to make it easy for people to order.

Sales grew as mask mandates increased and disposable masks became hard to find. “It ended up being a lot bigger than I thought it would be,” she said.

She created dozens of styles, allowing requests for everything from colors to sports teams to popular children’s characters. “I just liked the idea of making something that people liked to wear,” she said.

To create so many masks in such a short amount of time, she would sew while watching Netflix or listening to audiobooks after her kids went to bed. “It was a lot of hours, a lot of shows and books,” she said. To use the most of her time, she had an assembly line process. “If you walked into my house at that point it looked like a mask factory.”

People were especially interested in supporting Mallory’s fundraising efforts.

“People were just very generous,” she said. Many customers made additional donations or paid extra for the masks when they learned about the fundraiser. A co-worker who ordered several masks always gave $10 instead of $5 because she knew it would help their patients.

One customer, an elderly man living in a rural community, mailed Mallory a thank-you letter after receiving his mask order. “Thank you for making a difference,” the note included, along with another order for a friend. Moments like that made an impact on Mallory. “In a year where we lost a lot of connection and personal interactions, it made it a little easier to get through,” she said.

By June, Mallory had made more than 1,000 masks and raised $6,400 for the foundation. On June 5, 2020, she posted the announcement on Facebook: “Today I donated $6,400 raised from my face mask sale to ErinAndraWilson Foundation,” she began, before thanking everyone who purchased a mask.

She concluded her post by acknowledging the work of the foundation:“They are an amazing example of turning dark days into bright hope,”she said.

Words that are also fitting for people like Mallory and theirbrightefforts during an otherwisedark time.