Guardians Magazine: Summer 2019

Guardians Summer 2019

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

The real story behind Laila and the Blues see page 6

Doing what’s right for kids

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Helping kids walk better with Hollywood technology

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Pet center brings smiles and comfort to patients

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Transport team superheroes really do fly

From Malcolm E. Berry Chief Development Officer St. Louis Children’s Hospital The stories of impact you make possible at St. Louis Children’s Hospital

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year in review

2018 giving impact

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the best care for our kids

cover story: The real story behind Laila and the Blues

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big advances for our small patients

Helping kids walk better with Hollywood technology

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letting kids be kids

Pet center brings smiles and comfort to patients

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featured guardians of childhood: transport team

Transport team superheroes really do fly

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buzzworthy

News from St. Louis Children’s Hospital

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

Dear Friends, Once again, I’ve been humbled to witness the incredible impact our donors make in the lives of children.

This time, it was the swift, heartfelt decision to answer a call for help and lead change.

An estimated one in five adolescents suffers from some form of mental illness. In St. Louis, that translates to at least 125,000 children.

Over the past few years, health care professionals at St. Louis Children’s Hospital have seen children coming to the hospital with a higher level of needs than we have ever witnessed. These patients in crisis have few options in St. Louis for inpatient mental health — yet the tremendous need continues to increase. That’s why St. Louis Children’s Hospital has decided to take action.

Responding to this urgent need, St. Louis Children’s Hospital Foundation board members voted to provide the hospital $8.5 million to construct a 14-bed inpatient psychiatric unit opening this summer. We’re so proud to be part of such a meaningful project that is possible only through the help of our generous donors.

This psychiatric inpatient unit will allow our medical teams to provide the specialized therapies, care and safety these medically complex patients need. Parents will finally have a trusted place to turn. This dedicated unit will mean that more children can be helped at critical times with expert care and a safe environment designed specifically for their needs.

As we look forward to opening this inpatient unit, we recognize that more must be done to improve brain health services for children. Our vision as leaders in child health is to create a better model of care that improves the quality of life for children with emotional and behavioral health challenges and for their families. That model may include understanding brain biology better to create more personalized treatments, intensive outpatient care and more coordinated support in the community. We have much work to do, but we’re determined to make a difference.

We’re grateful for our donors who are helping us drive this change to make life better for children and their families. Thank you for believing in what we do and for walking alongside us as Guardians of Childhood.

Sincerely,

Malcolm E. Berry

highlights & happenings

St. Louis Blues defenseman Colton Parayko and St. Louis Children’s Hospital Heart Center patient Bennett took a break from games at the Blues Casino Night to benefit the hospital.

Mickey Mouse in the House!

Elliana delighted in some play time with Disney’s biggest celebrity during a recent visit to St. Louis Children’s Hospital.

Ride on! Families flocked to the soldout 36th Annual St. Louis Children’s Hospital Day at Six Flags on May 31 to enjoy food, fun and no lines for rides.

Joe and Michelle Buck smiled with their twin boys during the live auction at the sportscaster’s 19th Annual Golf Classic on June 3 to benefit the Joe Buck Imaging Center.

The event raised more than $600,000.

St. Louis Children’s Hospital ambassadors Tilly and Zoe flipped some hotcakes with KTVI’s Tim Ezell in honor of IHOP Free Pancake Day to benefit hospital fundraising partner Children’s Miracle Network.

Patient ambassador Evy inspired guests of the Friends of St. Louis Children’s Hospital annual Table Tops Spring Event with her story of courage and triumph.

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Philanthropy 2018 year in review Thanks to the 11,881 donors who helped us provide more than $24 million in funding to St. Louis Children’s Hospital programs.

Funds raised

Funds granted toward

in gifts toward

to support needs in

$24,614,286

$24,783,000

30.8%

38.7%

Patient & Family Care

Patient & Family Care

37%

36%

Research

24%

Guardians Fund (areas of greatest need)

7.2%

Community Health Advocacy 1% & Outreach Promoting Medical Excellence

Research

6.7%

Promoting Medical Excellence

18.6%

Community Health Advocacy & Outreach

Your gifts at work PATIENT & FAMILY CARE

6,778

Provided patient assistance connections offering vital support services like transportation, lodging and food vouchers for patient families 4

Guardians Magazine Summer 2019

COMMUNITY HEALTH ADVOCACY & OUTREACH

Served

16,980 children and families

beyond our hospital walls through free community health outreach programs, keeping kids healthy in their schools and communities

48,678

childhood traumas treated through our Emergency Department

110,202

kids treated through

1,740

kids received free dental exams with X-rays

5,923

music and art therapy sessions provided

1,410

necessary immunizations given to kids

1,032

10,237

patients visited the inpatient playroom and teen lounge

kids received critical asthma care and treatment

2,820

trips made by the Transport Team

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therapy dogs provided snuggles with patients

RESEARCH

Funded

42 research studies

tackling the most prevalent areas of serious childhood illnesses — cancer, congenital heart issues, lung conditions

and immune-based disease

PROMOTING MEDICAL EXCELLENCE Supported the best and brightest through

14 endowed department chairs, 4 medical fellowships and 4 nursing scholarships A publication of St. Louis Children’s Hospital

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the best care for our kids

The real story behind Laila and the Blues:

Laila celebrates with the Blues and the Stanley Cup.

In January, the idea of the St. Louis Blues playing for the Stanley Cup seemed farfetched, considering the team was in last place. At the same time, the possibility of 11-year-old Laila Anderson being healthy enough to attend a game seemed highly unlikely. Yet as the Blues gained steam this spring, so did Laila.

Team spirit fuels the l fight of her life

aila’s journey began two years ago when she started having episodes of headaches and vomiting. One day, she collapsed after getting out of the car to go to school.

After a trip to a St. Louis-area emergency room with no resolution, Laila came to St. Louis Children’s Hospital, where she had numerous tests. MRIs over the span of a few months showed that her brain condition was deteriorating.

Medications weren’t working, and a brain biopsy still did not give a definitive answer to her symptoms. Doctors struggled to diagnose Laila’s condition.

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Guardians Magazine Summer 2019

Yet Soe Mar, MD, a Washington University neurologist at St. Louis Children’s, and Julia Warren, MD, a Washington University hematologist/oncologist at St. Louis Children’s, wouldn’t give up. “Dr. Warren said she couldn’t get Laila out of her head, so she kept digging,” says Laila’s mom, Heather. “She went above and beyond — without her, we wouldn’t have figured it out.”

In September 2018, they finally found an answer through genetic testing: Laila had HLH (hemophagocytic lymphohistiosis), a rare, life-threatening autoimmune disease in which the immune cells grow out of control and attack the body, causing organ damage. In Laila’s case, the immune system was attacking her brain.

HLH can be difficult to diagnose because it often looks like other conditions. According to Jeff Bednarski, MD, PhD, a Washington University hematologist/oncologist at St. Louis Children’s Hospital, Laila is just one of 15 children in the world who have had a solely neurologic manifestation of the disease, which made it even more challenging to pinpoint a diagnosis.

Dr. Bednarski is a member of the Primary Immune Deficiency Treatment Consortium, which is a network of 33 centers in North

Laila and Blues defenseman Colton Parayko

America that study the treatment of rare and severe primary immunodeficiency diseases — including HLH. St. Louis Children’s Hospital also is recognized as a Jeffrey Modell Diagnostic and Research Center for Primary Immunodeficiencies. This network of centers includes access to experts around the world.

Through all the challenges Laila has faced — including missing most of fourth and fifth grades, losing her hair, weight gain and feeling nauseous most of the time — Heather is grateful for the St. Louis Children’s Hospital team. “No matter what, they are always there

Laila and Dr. Bednarski

No matter what, they are always there for us. They put kids first, but also care for the parents. No kid wants to go to the hospital, but they have been so good to her.

Heather Anderson, Laila’s mother for us,” she says. “They put kids first, but also care for the parents. No kid wants to go to the hospital, but they have been so good to her. And they don’t dismiss my questions and concerns.”

In October, Laila started 10 weeks of chemotherapy to suppress her overactive immune system and to prepare for a bone marrow transplant (BMT) in the quest for a cure. While she lost her long blonde hair, she found a bright spot. An avid Blues fan, Laila met player Colton Parayko at a Halloween event at St. Louis Children’s Hospital. The two became fast friends and have stayed in close contact throughout Laila’s journey.

Laila had a BMT on Jan. 24 — “her new birthday.” “We’re

extraordinarily lucky to have St. Louis Children’s Hospital so close to us,” says Heather. “It’s a sense of relief to know it’s always there when we need it.”

After her bone marrow transplant, Laila spent one month in the hospital in isolation to prevent infection while her immune system rebounded. Heather was allowed to put Blues stickers on Laila’s hospital room windows. She cleaned them every day to keep the room sterile.

The joy they brought her daughter made it worth it.

“When Laila is excited, I’m excited,” Heather says. “Laila has been a Blues fan since she was a little girl. It has been an unreal parallel between the team and Laila.

As she started to get better, the CONTINUED ON PAGE 14 A publication of St. Louis Children’s Hospital

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big advances for our small patients

Helping kids walk better

Chase (left) and Dr. Pooya Hosseinzadeh (right) work together in the Motion Analysis Center.

with Hollywood technology

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hile many parents question the value of video games, kids can now point to at least one major benefit: the technology behind video game design and movie special effects is now helping kids with mobility issues walk better.

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Guardians Magazine Summer 2019

St. Louis Children’s Hospital has opened a new Motion Analysis Center to provide comprehensive gait evaluations for children with mobility problems.

The Motion Analysis Center, which provides a computerized evaluation of how a child walks, was made possible through the generosity of donors to St. Louis Children’s Hospital. The Center is a first in St. Louis and for the surrounding area, and means patients don’t have to travel to Chicago or farther for evaluation.

“In the past, surgeons used their training and experience to evaluate a patient’s gait, but there are hard-to-detect variables even with a thorough physical exam and close observation,” explains Pooya Hosseinzadeh, MD, a Washington University pediatric orthopedic surgeon at St. Louis Children’s Hospital. “Patients with complex musculoskeletal problems have complex gait problems that we’re not able to assess just by looking at them. The technology available in our Motion Analysis Center eliminates any guesswork involved in our assessment process.”

Motion analysis is an assessment tool for patients diagnosed with cerebral palsy, spina bifida, clubfoot, brain or spinal cord injury or sports-related injuries — or those needing prosthetic device modifications. In the new Motion Analysis Center, specialized equipmen captures motion through digital video cameras using highly sensitive sensors — the same technology used in video game design and Hollywood moviemaking. It then creates a 3-D rendering of how a child walks and the underlying skeletal system, and creates measurements of how the patient moves within the space.

A licensed physical therapist with expertise in motion analysis conducts the testing.

“The Motion Analysis Center is frequently used to help patients with cerebral palsy, but it can be used for any movement disorder that influences walking,” explains Connor Chastain, DPT, CSCS, who oversees the Center’s operation.

Eight high-speed infrared cameras track a patient’s motion at 2,000 frames per second, with the help of reflective markers placed around the child’s joints. Plates in the floor measure the amount of force and the direction of that force.

Muscle activity is measured through wireless electrodes while a patient is walking. Previous equipment required placing wires into the skin.

“Using this advanced equipment in conjunction with two high-definition cameras, we can recreate how a patient walks digitally and quantify it,” Chastain says.

“We can determine how much force is at the joint, if it moves through an arc of motion optimally, and if the muscle is working appropriately.”

A dedicated assessment team that includes orthopedic surgeons, neurosurgeons, neurologists and physical therapists evaluates the results to help develop the best treatment plan for the individual child.

“It is vital to have input from all of these disciplines because of the varied expertise they bring to the assessment

Physical therapist Connor Chastain evaluates a patient’s muscle movements through wireless electrodes.

process,” Dr. Hosseinzadeh says. “Our recommendations can range from nonsurgical to surgical interventions, or providing an assessment of how effective current therapies have been for the patients. Using the initial gait analysis as a baseline, we can do a reassessment after treatment to gauge improvement or make further recommendations.”

The Motion Analysis Center is frequently used to help patients with cerebral palsy, but it can be used for any movement disorder that influences walking.

Connor Chastain, DPT, CSCS

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letting kids be kids

Pet center brings

smiles and comfort to patients

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hile March 23 may be the official National Puppy Day in the United States, every day is puppy day at St. Louis Children’s Hospital.

Jarvis, age 4

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Guardians Magazine Summer 2019

Thanks to a generous gift from Nestlé Purina to St. Louis Children’s Hospital, the Purina Family Pet Center officially opened in 2016 on the hospital’s second floor. It’s a pet-friendly, safe place where patients find comfort by reuniting with their pets from home.

In addition, animal rescue organizations such as the APA Adoption Center occasionally bring puppies to the Purina Family Pet Center for patients and families to enjoy, as they did on National Puppy Day this year. It was a “pup-up” play date.

Dozens of children and families swooned and giggled over four playful puppies in the Center. Snuggly wrapped in a Spiderman robe, 4-year-old Levi Stratman was hesitant when he first entered the Purina Family Pet Center. Moments later, hesitation gave way to big smiles as a warm puppy wiggled in his arms.

Just feet away, 4-year-old Jarvis Jackson couldn’t get enough furry fun with two puppies vying for his attention.

Many studies have shown that pets can promote and improve patient wellness.

“Pets bring such joy,” says Nina Leigh Krueger, President of Nestlé Purina. “We believe pets and people are better together and have healing effects. That’s why Purina and St. Louis Children’s Hospital are such a natural fit. Our goal for the Purina Family Pet Center is to bring joy and comfort to children and their families by helping them reunite with their pets and other pets, like these puppies.”

Only one of four pet centers in the world at a pediatric hospital, the Purina Family Pet Center at St. Louis Children’s offers a private place where children can meet with their pets while still surrounded by the care and technology of the hospital and caregivers. Purina participated in the planning and design of the center to help make the visit with families as pleasant, safe and fun as possible. Purina also provides toys and treats for the visiting pets.

Shelby Swanner, child life assistant at St. Louis Children’s Hospital, sees the benefits of pet visits firsthand as coordinator of the Purina Family Pet Center. She makes sure visiting pets are current on their vaccinations and schedules and supervises the visits. It’s a role she cherishes as a pet lover and a child advocate.

“Playing with puppies and pets helps relax patients,” Shelby says. “Their whole demeanor changes and their mood is lighter. What I enjoy most is the look of joy on the faces of both the kids and the families when they bring in their pet.”

She says the biggest surprise is how much difference bringing pets to the center can make for the whole family, not just the child: “It makes the family feel like they are helping in the child’s care when they sometimes feel things are out of their control. St. Louis Children’s Hospital is always focused on family-centered care, and this is one more way we can do that.

The Purina Family Pet Center is special and brings kids and families a piece of home.”

The benefits of the pet center are far-reaching, says Flip Becker, foundation relations director. “We’re so grateful to Purina for this gift that is impacting so many families. When I heard about the idea (top) Levi, age 4 of creating the Purina (above) Nestlé Purina President Nina Leigh Krueger Family Pet Center within and St. Louis Children’s Hospital Pediatrician-inthe hospital, I immediately Chief Dr. Gary Silverman enjoy some puppy time. saw the heartfelt goodness this would inspire. It’s real now, thanks to Purina, and is a wonderful asset.”

Flip recalls being in the center when a family brought in their dog from four hours away in Springfield, Missouri, to see their daughter, who was a patient. “Their daughter hadn’t seen her dog in a year because she had been in various hospitals,” he says. “It was the most touching thing I ever witnessed to see them reunited. Both the dog and girl were so excited to see each other. There wasn’t a dry eye in the room. Pets bring the magic.”

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featured guardians of childhood: transport team

Transport team

Superheroes really do fly For more than 30 years, the St. Louis Children’s Hospital critical care transport team has provided patients with a direct route to advanced and highly specialized pediatric and neonatal care, including the hospital’s Level 1 pediatric trauma center and Level 4 Neonatal Intensive Care Unit.

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Guardians Magazine Summer 2019

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David Hurd, transport team flight operations supervisor

he transport team is made up of superhero guardians who really do fly — making an average of 40 flights per month in helicopters and an airplane — responding to emergency or critical situations outside the hospital. They also drive high-tech mobile intensive care units (MICUs) with lifesaving equipment and supplies that create a hospital unit on wheels.

“We are given the opportunity to care for an entire family by giving the highest level of care to the child in need,” says David Hurd, EMT-P, FP-C, flight operations supervisor for the St. Louis Children’s Hospital transport team. “I feel that it is a true privilege to work in such a unique specialty in pediatric ground and aeromedical emergency medicine.”

These lifesaving guardians earn their capes through extensive training and experience. All St. Louis Children’s transport team

nurses are registered nurses who are required to have three to five years’ experience in an emergency unit, neonatal intensive care unit (NICU) or pediatric intense care unit. Transport team Critical Care Paramedics also have at least three to five years’ emergency medicine field experience. Moreover, the team employs two part-time educators who are dedicated to the ongoing education of transport team members.

“Pediatrics is such a specialized form of nursing and emergency medicine,” says Dawne Sokora, RN, BSN, assistant nurse manager of the transport team. “But we don’t think of ourselves as superheroes or the flight suits as capes. Seeing the difference we make in a patient and family’s life makes it all worthwhile.”

The transport team provides services throughout the United States and Canada and is ready to respond around the clock.

To reach patients faster throughout the region, the teams have two bases: one team at Parkland Health Center in Farmington and two teams at St. Louis Children’s Hospital. They expect to expand that to four teams by summer 2019, and will continue to expand as the needs of our region increase.

Donations to St. Louis Children’s Hospital funded the transport team’s six MICUs, with the newest MICU added this summer.

The MICUs, which transport an average of eight to 10 patients a day, allow space for equipment and the appropriate team to provide all the care of an ICU for critically ill patients.

Parents also can ride with their child in the MICU. “We can take whatever resources we need from the hospital anywhere,” Sokora says. “These MICUs play an important role in pediatric and adolescent medicine, with a growing need for child and adolescent behavioral health issues.”

Sokora also notes that donor support through St. Louis Children’s Hospital has been vital to helping more children.

“Without donors’ help, we wouldn’t have the equipment we need to transport more than 2,800 children a year and meet important community needs,” she says. “Donors provide us the tools we need to do what’s right for kids.”

Transport team members Candace-Rae Haislip, RN and Michael Dodson, EMT-P assess a patient after arriving at St. Louis Children’s Hospital.

Car Care for Kids: maintenance that makes a difference

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nspired by the St. Louis Children’s Hospital mission to do what’s right for kids, the St. Louis Auto Dealers Association and BG Products Inc., a supplier of highquality fluids and professional equipment, are proud to partner to provide maintenance that makes a difference for kids at St. Louis Children’s Hospital.

This June, July and August, participating dealerships and BG Products are donating a portion of the proceeds from every service involving BG products to the St. Louis Children’s Hospital Transport Team.

Visit StLouisChildrens.org/CarCare for a list of participating dealers and to learn more about Car Care for Kids.

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buzzworthy

St. Louis Children’s performs 500th heart transplant

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n January 2019, the St. Louis year. Anary told her parents she Children’s and Washington wanted to fight, so the Heart Center University Heart Center announced team listed her for transplant. After that it is the first pediatric heart about six months on the waiting list transplant program in the Midwest, and a 10-hour surgery, performed by and one of just a handful of across the Pirooz Eghtesady, MD, a pediatric nation, to reach the milestone of 500 cardiothoracic surgeon with heart transplants. This Heart Center Washington University School of performed one of the Midwest’s first Medicine at St. Louis Children’s pediatric heart transplants in 1986 and Hospital, Anary is thriving.

Anary Suazo is thriving after has since consistently performed the “The 500th heart transplant being the Heart Center’s highest volume of pediatric heart performed at St. Louis Children’s 500th heart transplant patient. transplants in the Midwest. Today, the Hospital is a milestone reflecting the program is known for giving hope to the families program’s stature as one of the largest and most of high-risk cases turned away by other hospitals. influential in the United States, if not the world,” said Twelve-year-old Anary Suazo from Tulsa, Charles Canter, MD, a world-renowned expert in Oklahoma, is recovering well after becoming the pediatric heart failure and transplant and the founding Heart Center’s 500th heart transplant patient on medical director of the heart transplant program at January 23. Anary was born with only half of her St. Louis Children’s Hospital. “It is a testament to the heart fully developed and working properly. She had decades-long dedication of our Heart Center team, three open heart surgeries in her first two years of inspired by the courage and commitment of the life and did well until experiencing a setback last children and families we have served.”

The real story behind Laila and the Blues

As she started to get better, the team started to get better.

Heather Anderson, Laila’s mother

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Guardians Magazine Summer 2019

CONTINUED FROM PAGE 7

team started to get better. The team is what gets her up every day, and now those boys are sharing the moment with her. They genuinely care about her.”

After her month of isolation in the hospital, Laila spent another three months at home with continued restrictions. In May, as the Blues were chasing the Stanley Cup, Heather’s neighbor asked if Laila could go to a Blues game. Heather received special permission from Laila’s doctor to go with certain precautions. It would be Laila’s first excursion since her BMT. When Heather surprised Laila with the news, Laila burst into tears as she realized she would get to see her beloved Blues again.

And it didn’t stop there. A dream trip to Game 7 in Boston meant that Laila got to see “her boys” win the Stanley Cup in person — and she was on the ice celebrating with the team that had brought her so much strength and joy during the most difficult time of her life.

As the St. Louis Blues celebrate the culmination of a 52-year journey to become Stanley Cup champions, Laila has more goals ahead, despite an unknown future. “We live one day at a time,” Heather says. “She has always been an old soul and so strong. There’s no way I could get through all she has. Laila is my hero.”

buzzworthy

Special room allows patients to receive promising radioactive therapy

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t. Louis Children’s Hospital and Washington University School of Medicine have joined a Children’s Oncology Group (COG) clinical trial to help determine the effectiveness of a new therapy for children with newly diagnosed high-risk neuroblastoma. Promising outcomes led to the expanded study.

Neuroblastoma is a rare type of cancerous tumor that develops from early nerve cells. These tumors generally develop in the adrenal glands, which sit on top of the kidneys. Neuroblastoma also can begin in or spread to other areas, including the chest, spine and abdomen. Most children with neuroblastoma are diagnosed before age 5.

While the hope of the trial is for more effective treatment to eliminate the tumor, this new therapy brings a unique challenge. Known as iodine-131 metaiodobenzylguanidine (I-131 MIBG) therapy, the drug combination includes a radioactive iodine that delivers targeted radiation to the tumor. Using this radioactive medicine means special precautions need to be taken for the safety of patients, their caregivers and the hospital staff.

To address this, St. Louis Children’s Hospital Foundation funded a new MIBG therapy room at the hospital to facilitate providing this radioactive treatment.

During infusion of the therapy and for about five days afterward, children stay in a specially designed, lead-lined patient room on the hospital’s ninth floor.

A hotel-like private room and bathroom adjoin it so parents or other caregivers can comfortably spend their days and nights nearby. Two-way audio and visual communication is always available for caregivers and the patients, and distractions such as television, movies and video games are provided in the room. Other favorite toys that can be easily wiped down and decontaminated may be brought from home.

“Once patients are released from the room, we take a scan to confirm the drug is targeting the tumor,” says Daniel Willis, MD, Washington University pediatric hematology/oncology fellow.

“Follow-up scans will help us determine whether or not the tumor is shrinking. In some cases, I-131 MIBG therapy may be given again, depending on how the patient tolerated the first treatment and what type of dose they received initially.”

Offering I-131 MIBG therapy is a boon for patients in the St. Louis region and throughout the Midwest, says Frederick Huang, MD, Washington University pediatric hematologist/oncologist: “Our participation in this new trial truly expands our ability to offer the most advanced therapies for children with high-risk neuroblastoma.”

St. Louis Children’s Hospital is the only medical facility in Missouri to offer I-131 MIBG therapy to children.

Parents and caregivers can stay near their child receiving MIBG therapy in this adjoining private room.

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