Guardians Spring 2017

Guardians Spring 2017

Stories of Care, Discovery and Outreach from St. Louis Children’s Hospital

Welcome back, Back,

Maddie see page 4 2

’s ’s Doing What Doing What Right Kids!

Rightforfor Kids!

6

6 Game Changers Game changers in in Brain Tumor brain tumor treatment Treatment

8

8 Maternal Challenge and Fetal cheers Transport Reaches propel patients to Milestone swim, bike, run

1010 7-Year-Old Soccer Breaking the cycle of Playerby Is supporting Back in violence the Game its young victims

Meet Malcolm:

Stories of Care, Discovery and Outreach from St. Louis Children’s Hospital

The new Chief Development Officer at St. Louis Children’s Hospital Foundation and a Guardian of Childhood

4 THE BEST CARE FOR OUR KIDS

Welcome back, Maddie

6 BIG ADVANCES FOR OUR SMALL PATIENTS

Game changers in brain tumor treatment

8 LETTING KIDS BE KIDS

Challenge and cheers propel patients to swim, bike, run

10 OUT OF THE HOSPITAL, INTO OUR NEIGHBORHOODS

Breaking the cycle of violence by supporting its young victims

12 FEATURED GUARDIAN OF CHILDHOOD : LESLIE GARVIN

A life saved.

A life-long friendship.

A meaningful tribute.

14 BUZZ-WORTHY

News from St. Louis Children’s Hospital

St. Louis Children’s Hospital One Children’s Place St. Louis, MO 63110 314.286.0988 888.559.9699 Copyright ©2017 StLouisChildrens.org

Dear Friends, Joining the St. Louis Children’s Hospital family has confirmed my conviction that this is an incredible place with remarkable potential.

I’m confident that the exceptional patient care, top-notch research, and child advocacy and community outreach Children’s delivers is having a transformational and lasting impact on child health.

That’s why our promise to “do what’s right for kids” resonates so deeply with me, my hospital and foundation colleagues, and those who have named us a cause worth supporting. It pushes us to do everything in our power to ensure children have the opportunity to live up to their potential. And it challenges us to stay ever-determined to address increasingly complex medical needs of children here and around the world. To meet that challenge, we must drive the evolution of pediatric care and innovation, advancing new knowledge, better protocols and leading-edge technologies from the bench to the bedside.

We can’t do this alone, which is why we ask every member of our Children’s Hospital community to join us as Guardians of Childhood. With your support, Children’s has grown to become one of the top pediatric hospitals in the United States, delivering the expert patient care few others can match.

Help us continue the fight. Together, we will drive change, seize new ideas, accelerate discovery, deliver advances, empower our people and, most importantly, bring hope and healing to our patients and their families when they need us most.

With gratitude,

Malcolm Berry

PET scans

pet therapy

The mission of St. Louis Children’s Hospital is simple.

We do what’s right for kids.

That means we always put children’s health first by providing high-quality health care in a warm and supportive environment.

Children’s Hospital is a not-for-profit hospital that enlists the charitable support of a growing community of donors to become Guardians of Childhood.

Thanks to generous donor support, St. Louis Children’s Hospital can deliver on its mission to do what’s right for kids by providing compassionate care for the little things and expert pediatric care for the big things.

lication of St. Louis Children’s Hospital

A pub-

A publication of St. Louis Children’s Hospital 3

3

the best care for our kids

Welcome back,

Maddie Madeline Thompson has accomplished quite a bit for being just 9 years old. At age 5, she began wake boarding behind her family’s boat with confidence and enthusiasm. She taught herself how to do a one-handed cartwheel and took gymnastics.

Maddie also loves attending school, arts and crafts, all soft and snuggly animals, singing, reading chapter books, swimming, American Girl dolls, Legos, cooking, and spending time with her family and friends in her hometown of Hannibal, Missouri.

O

n June 17, 2015, Maddie’s bright and happy childhood came under attack by the diagnosis of a type of brain tumor called medulloblastoma. Surgery to remove the tumor was performed two days later, but the cancer cells had already spread to all surfaces of her brain and spine.

Fortunately for Maddie and her family, St. Louis Children’s Hospital was by her side, providing amazing talent and technology available at few other children’s hospitals.

Her incredible team of caregivers was led

by Dr. Karen Gauvain.

Cover photo courtesy of Heibel Photographics

4

Guardians Magazine Spring 2017

Maddie in treatment with Dr. Karen Gauvain

In 2016, Dr. Gauvain and two of her Children’s Hospital colleagues in the pediatric neuro-oncology program, Dr. Josh Rubin and Dr. David Limbrick, joined a consortium of 15 other medical centers that provides physicians with the latest technologies as well as clinical trials, expanding overall treatment options and, ideally, patient success rates.

Also available to Children’s Hospital patients who need it is interoperative MRI (IMRI), considered a major advance in treating brain tumors that few other pediatric medical centers have. For patients like Maddie with central nervous system tumors, IMRI provides neurosurgeons real-time visualization during surgery for the removal of tumors. With an IMRI, neurosurgeons remove the tumor, then stop the operation to acquire MRI images while the patient is still asleep. Using computer guidance along with IMRI, neurosurgeons then remove any remaining tumor that is safely accessible.

The hospital’s pediatric neuro-oncology program also is the first ever to evaluate laser ablation surgery for pediatric brain tumors.

This minimally invasive procedure clears a path through the blood-brain barrier for chemotherapy drugs to infiltrate the tumor.

Clinical trials will test whether this procedure helps alleviate cognitive damage common in children receiving treatment for brain tumors. In addition, our pediatric brain tumor patients also benefit from state-of-the-art radiation therapy,

including intensity-modulated radiation therapy (IMRT), proton beam radiation and radiosurgery.

When kids like Maddie are treated at Children’s Hospital, they can actually help advance science by contributing to a pediatric brain tumor bank.

The bank’s growing number of tumor, blood and cerebrospinal fluid specimens is carefully annotated and available to scientists worldwide whose research is aimed at life-saving treatments.

With the help of all these resources and more, Maddie has been cancer-free since January 2016 and is back to doing many of the things she loves, including attending the third grade.

Physical and occupational therapy are helping her gain strength. And her school is helping her overcome her learning challenges and get back to where she was before treatment. As a reward for her hard work, Maddie gets to come home to her dog Jesse, an end-ofchemo surprise gift and rescue beagle/ corgi mix.

A publication of St. Louis Children’s Hospital

5

big advances for our small patients

Gabe Scalise shows the positive attitude that sustained him and his family throughout his treatment for a brain tumor.

Game changers in brain tumor treatment

In September of 2015, a young promising baseball player and his mom and dad sat under the giant Louisville Slugger hanging on the wall of the St. Louis Children’s Hospital Joe Buck Imaging Center trying to absorb devastating news. A brain tumor—not a small fracture in his back, a virus or an inner ear infection as once thought—was causing Gabe, who was 15 at the time, to suddenly have trouble keeping his balance.

6

Guardians Magazine Spring 2017

g

abe was the fastest runner on his team. “When he started having trouble hopping and running, we really became concerned,” says his dad Jeff.

A confirmed diagnosis, seen clearly in an image of Gabe’s brain, launched the Scalise family’s long, hard-fought battle—filled with brain surgery, MRIs, radiation, setbacks and challenges.

But, despite struggling through weeks of dizziness and nausea, a year of weakness and double vision that was finally repaired with corrective surgery last September, Gabe and his family stayed positive and celebrated reaching every therapeutic milestone. Even when they heard that the small amount of tumor left in Gabe’s brain had grown slightly and needed to be treated with proton beam radiation, they met the news with optimism.

“St. Louis is one of only 12 places in the United States that has this technology, and it is right here in our backyard. Gabe is going to be just fine,” Jeff posted on Gabe’s CaringBridge page.

In fact, as is the case with Gabe, improvements in childhood brain tumor survival rates have led to an increasing emphasis on quality of life after treatment. And cognitive deficits are the single greatest detractor from that quality of life.

For years now, doctors have monitored and measured the cognitive damage that occurs in the brains of children after tumor treatment. Sometimes that damage is minimal.

Sometimes it’s devastating.

For Gabe, it’s somewhere in between.

According to Jeff, while Gabe is making good grades, he struggles with short-term memory and retention issues he’d never before experienced. Plus, lingering double vision keeps him sidelined from baseball.

Earlier this year, the Children’s Discovery Institute (CDI), a research partnership between St. Louis Children’s Hospital and Washington University School of Medicine, funded research to identify the biomarkers of cognitive deficits in brain tumor survivors. This study aims to develop the necessary tools to enhance cognitive recovery.

The co-principal investigators of this research are Children’s Hospital neuro-oncologist Joshua Rubin, MD, PhD, pediatrics, and Brad Schlaggar, MD, PhD, neurologist-in-chief at St. Louis Children’s Hospital. Together, they are calling on the expertise from the Washington University School of Medicine’s departments of neurosurgery, neuroradiology, radiation oncology and biomedical engineering.

“That is what it takes to do the computational work necessary to make predictions about individual patients,” says Dr. Schlaggar. “It’s a highly aspirational study, but that’s the beauty of the CDI and its willingness to take risks on new and possibly game-changing ideas. With the imaging and computational capabilities available here, we are uniquely positioned to assess how the treatment of tumors and the tumors themselves contribute to cognitive deficits.”

Gabe with his family

St. Louis is one of only 12 places in the United States that has this technology, and it is right here in our backyard.

The researchers will gather neuro-images of the approximately 52 brain tumor patients diagnosed or referred to Children’s Hospital for confirmation of their diagnosis per year.

By delving deeply into the data generated from the images, they hope to be able to make more accurate predictions regarding who will be at risk for developing learning or communication problems.

“It’s all about personalized medicine and being able to say to a patient ‘this is exactly where you stand in the continuum of risk for a poor outcome, and this is how we are going to change that trajectory,’ ” Dr. Schlaggar says.

Gabe and his family hope these CDI investigators hit it out of the park.

A publication of St. Louis Children’s Hospital

7

letting kids be kids

We work hard to get these kids out of the hospital setting and into their community participating in life.

It’s really been a dream come true for the children and families involved.

Challenge and cheers

propel patients to swim, bike and run

From brain injuries to leg braces, all 65 participants in the 2nd Annual St. Louis Children’s Hospital Tri My Best Adaptive Triathlon shared some kind of physical limitation. But despite their challenges, patients were encouraged to complete three events—swim, bike and run— all in a row.

h

eld last September at Washington University’s Athletic Complex, more than 350 volunteers helped during this community event sponsored by St. Louis Children’s Hospital, and joined about 100 family members in cheering them on.

“It is a magical day,” says Jennifer Miros, supervisor, Carol and Paul Hatfield Cerebral Palsy Sports and Rehabilitation Center. “Growing up playing sports, many of us enjoyed the thrill of cheering crowds. Now these kids get to experience that exhilaration. And they see the benefit that physical activity has on their bodies.”

Volunteers, many of them St. Louis Children’s Hospital physical and occupational therapists, spend around 10 months planning the triathlon.

Most competitors attend the hospital’s annual Camp Independence, a sports day camp for children with cerebral palsy. Many hospital staff volunteer their time at five specialized St. Louis Children’s Hospital summer camps for patients. Each camp is made possible by generous donations to the hospital.

“We work hard to get these kids out of the hospital setting,” Miros says, “and into their community participating in life. It’s really been a dream come true for the children and families involved.”

Tri-athlete Brooklyn Francis races to the finish line.

8

Guardians Magazine Spring 2017

A publication of St. Louis Children’s Hospital

9

out of the hospital, into our neighborhoods

I’m not an easy person to know.

I don’t trust a lot of people.

But Ms. Houser never gave up on me.

10

Guardians Magazine Spring 2017

Breaking the cycle of violence

Erica and her mentor, Genai Houser

by supporting its young victims

After being assaulted by several classmates in the girls’ restroom of her high school, Erica, age 17, was treated in the emergency department at St. Louis Children’s Hospital. She suffered a concussion, sustained injuries to her back, and her eye took quite a beating. But those surface wounds told only part of Erica’s story, one that is all too familiar to the people in Erica’s life.

i

n fact, Erica’s harrowing experiences of living through or frequently witnessing acts of violence made her eligible for the hospital’s donor-funded Victims of Violence program. With more than $500,000 in funding from the Hauck Family Foundation, the hospital’s Victims of Violence program grew out of a pilot study showing that mentoring young victims of violence in ways to avert another attack reduced the likelihood of a repeat visit to the emergency department.

Genai Houser, one of the program’s four social workers, became Erica’s mentor. Houser worked diligently with Erica to gain her trust, meeting with her regularly at a mutually agreed upon safe spot near Erica’s home or school in a neighborhood much like Houser’s own as a child.

“I always felt fortunate that no one in my family was directly impacted by violence,” Houser says, “but we definitely were surrounded by it.” One time, a man was shot and died on Houser’s front porch. “You can almost become numb to the violent acts you see every day,” Houser says. “Most of the kids we work with think of it as a normal part of life. Our challenge is to help them understand that it isn’t and that there are actions they can personally take to avoid the escalation of violence and keep themselves safe.”

The program requires a minimum of six sessions with a Victims of Violence mentor. Along the way the mentors communicate with school personnel, deputy juvenile officers, court personnel, police officers and community agency staff who may be involved with the child.

Already traumatized by the shooting death of her father, Erica began opening up. Houser helped her process her loss and move beyond conflicts of the past. Because Erica was resistant to returning to school, Houser encouraged her to get her G.E.D. and pursue training to be a medical assistant.

“I’m not an easy person to know,” Erica says. “I don’t trust a lot of people,” But Ms. Houser never gave up on me.”

A publication of St. Louis Children’s Hospital

11

featured guardian of childhood: Leslie Garvin

Dear Dr. Feigin:

How are you? I’m fine. One day I saw you on T.V. I could not believe it.

I miss you very much. I’m playing basketball. We won our 1 and 2 games.

I made one basket in the first game.

Leslie Grigg (1980)

A life saved.

A life-long friendship. A meaningful tribute.

t Leslie with Dr. Ralph Feigin

his note was tucked into a Valentine’s Day card that a little girl wrote to the doctor credited for pulling her through bacterial spinal meningitis at St. Louis Children’s Hospital when she was just three years old. It was followed by years of Valentine’s Day correspondence between Leslie (Grigg) Garvin and Dr. Ralph Feigin, even after the pediatric infectious disease specialist had moved on to become the physician-in-chief at Texas Children’s Hospital in Houston.

Pictured above: Dr. Feigin with a Texas Children’s Hospital patient (photo courtesy of Texas Children’s Hospital)

12

Guardians Magazine Spring 2017

Dear Leslie: “I was really delighted to receive your beautiful card, your extensive note and the many pictures you sent. Every year, you seem to grow a great deal, but I know that if I saw you, I would recognize you because you have kept me up to date with all the pictures that you have sent me over the years. It sounds as if your activities at school keep you extremely busy, but that you are having a wonderful time. I am pleased that, in addition to your fine academic activities, you are also participating in music... I will always think of you as a model patient.”

Ralph D. Feigin (1986)

Leslie holds a special keepsake—a scrapbook of get-well cards and well wishes Leslie’s doctors and nurses put together.

The relationship between Dr. Feigin and the Grigg family began in the emergency room at Children’s Hospital. Shortly after arriving, little Leslie went into shock, had a cardiac arrest and lapsed into a coma. She was immediately placed on a respirator and Dr. Feigin or one of the house physicians remained by her bedside 24-7.

Dear Dr. Feigin: “How have you been doing lately? I am still playing the piano. I will be playing in front of a judge in a few months, and I am already preparing for it. I am doing very well in the 7th grade. Just recently I dissected an earthworm and a starfish in science class.

It was very interesting to see all the parts.”

Over the next few weeks, it looked grim, the illness creating one dire consequence after another. Cards and letters poured in from family and friends around the country. Dr. Feigin and Leslie’s parents refused to give up hope, but with each passing day it became more and more difficult.

Then, one day, shortly after Valentine’s Day of 1976, Leslie woke up.

Even though the effects of her illness were evident—she woke up completely deaf and blind and paralyzed on her right side, everyone pulling for her rejoiced.

Little by little, her eyesight and some of her hearing came back, and after a year of physical therapy, her paralysis completely disappeared.

Leslie went on to become an excellent student, an accomplished musician and an outstanding athlete.

And because a sample of her blood was used to help create a vaccine for bacterial spinal meningitis, she could add ‘life saver’ to her list of accomplishments.

And this year, Leslie topped it all off by becoming a philanthropist, putting St. Louis Children’s Hospital in her charitable estate plans.

“I decided to remember all the people who helped see me through my illness and its aftermath. Children’s Hospital was at the top of the list, and a gift made to support infectious disease research is a way of keeping Dr. Feigin’s legacy alive.”

In 2009, Leslie received word that Dr. Feigin had passed away. A couple of years later, she received a package in the mail containing all the Valentine’s Day letters she had ever sent him and the doctor’s responses. That poignant gesture by Dr. Feigin’s assistant showed Leslie how much she meant to the doctor who never gave up on her.

How you can help: Considering a planned gift to St. Louis Children’s Hospital?

Please contact Jan Rogers at jan.rogers@bjc.org.

Leslie Grigg (1986)

A publication of St. Louis Children’s Hospital

13

buzz-worthy

Building Excitement Campus Renewal Project Impact on Children’s Hospital Patients and Families

a

ny recent visitor to St. Louis Children’s Hospital has likely noticed some major construction happening on the medical center campus. The campus renewal project, which includes a new Children’s Hospital bed tower— scheduled to open for patients in August 2017— that will provide more private patient rooms and an expanded newborn intensive care unit (NICU) connected to Barnes-Jewish Hospital labor and delivery, has come a long way over the last year.

“I like to look out my window at night and pretend the workers are playing hide and seek.”

“I want to know why some of them have a lot of stickers on their hard hats and some don’t have any.”

“I try to find the girl construction workers.”

As part of the expansion, the women and infants program, in partnership with Barnes-Jewish Hospital, will provide families with a higher level of care—a high-risk baby delivered at Barnes-Jewish Hospital can be safely transported to the Children’s Hospital NICU in minutes and moms will remain close.

Children’s Hospital patients and families also have noticed the impact of the construction. In fact, throughout 2015 and 2016, construction workers, cranes and other trucks and machines have been a welcome distraction for patients receiving treatment on the 9th floor hematology/oncology unit.

At a thank you luncheon for 800+ construction workers, guests were treated to hearing some of the young observers’ comments.

While construction is far from complete on this 10-year campus-wide project, the feedback from those watching both inside and outside hospital walls is peppered with excitement and anticipation for what’s to come. One patient’s mother stated, “When I see the construction and how big it’s becoming, I think ‘they are making it so much better and they are going to help so many more kids and parents.’ Because Children’s Hospital is the best of the best and we are so lucky to have it here in St. Louis.”

“I remember when they first dug the big hole and they used to stand in a circle and exercise. That was funny.”

“My mom and I stare out the window and play ‘I spy.’

I usually win.”

“Why do the construction workers bring their lunch in coolers even in the winter?”

14

Guardians Magazine Spring 2017

highlights & happenings St. Louis Children’s Hospital Expansion Part of 10-year campus-wide renewal project Expands the newborn intensive care unit (NICU), which connects to Barnes-Jewish Hospital labor and delivery

Supermodel and St. Louis native, Devon Windsor, along with her sister Lisa and friend, Leisel Von Gontard, pay a visit to Children’s Hospital to bring gifts to patients over the 2016 holiday.

The Children’s Hospital Transport Team stands with BG Products to accept a check for funds raised through Car Care for Kids, a partnership with local auto dealerships and BG Products.

St. Louis Blues player Robert Bortuzzo and patient, Spencer, play games in the new Teen Lounge at Children’s Hospital.

The renovated space on the 8th floor, now named the Lion’s Den, was made possible in partnership with the St. Louis Blues and the non-profit, Companions in Courage, as part of the 2017 Bridgestone NHL Winter Classic Legacy Project.

Recently named the 5th Annual Ace Cares for Kids All-Star, Children’s Hospital patient Roxie Schopp accepts a check on behalf of Children’s Miracle Network of Greater St. Louis, a fundraising partner to St. Louis Children’s Hospital. Roxie’s new role as the national ambassador for the Ace Foundation will help raise awareness for the work done at Children’s Miracle Network Hospitals across the country.

Staff and physician representatives from St. Louis Children’s Hospital gather with patient ambassadors to celebrate funds raised from 2016’s Pedal the Cause, St. Louis’ community-wide cycling challenge to raise funds for cancer research at St. Louis Children’s Hospital and Siteman Cancer Center.

In August 2016, 152 construction, engineering and architecture companies and more than 2,400 individuals raised $405,000 during KIDstruction Week, a workplace giving campaign that encourages employees to give at least $1 an hour for one week to support St. Louis Children’s Hospital.

Increases private inpatient beds Includes diagnostics and outpatient clinic space

By the Numbers

214,000 square feet

12

stories

97

new/renovated NICU beds

96

new private rooms

1

new additional rooftop garden

A publication of St. Louis Children’s Hospital

15

One Children’s Place St. Louis, MO 63110 314.286.0988 or 888.559.9699 StLouisChildrens.org

your gift

her future

St. Louis Children’s Hospital is a not-for-profit hospital.

Your contribution supports groundbreaking research, exceptional pediatric care and health outreach programs for kids throughout our community. Donate today and become a Guardian of Childhood at StLouisChildrens.org/Donate.