Children's Medical Center Foundation - February 2020 Newsletter

FEBRUARY 2020

NEWSLETTER

OH BABY!

Why adoptive parents turned to us for their baby's open heart surgery

STILL CARING

Dawn Drouillard’s legacy lives on

WE

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NOTES

Send a valentine to our patients

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RESEARCHING BRAIN CANCER Meet Dr. Sam McBrayer

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RUN, RIDE & RAISE FUNDS

How a ‘computer guy’ makes a difference

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Family and friends celebrate Elli at her first birthday party in November 2019.

Instant Family, Instant L ve E

LLI WAS THEIRS. OFFICIALLY THEIRS. Almost a year of waiting weighed on these minutes beneath fluorescent lights in a Dallas County

courtroom. With their right hands raised, Jennifer and Angie promised to protect this baby and care for this baby. They promised to love her. “Congratulations,� the judge said, as Jennifer, holding a wiggly Elli in a gold headband and lacy dress, discreetly wiped tears from her eyes. Not one to typically show her emotions publicly, she said this day was equivalent to the Christmas of her childhood. The three turned to face the courtroom for their

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first family photo. The camera shutter snapped. Click, click. “You got it?” the bailiff asked.

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lli was two days old when Jennifer and Angie met her on Nov. 17, 2018. She weighed 4 pounds, 5 ounces and had a head of wispy dark hair.

The call announcing she had arrived came one day earlier as the couple sat in a movie theater watching previews before the showing of “Instant Family,” a comedy-drama about foster care adoption.

“Our adoption counselor said, ‘The birth mom wants to meet you tomorrow. This doesn’t normally happen,’” Jennifer said, recalling the conversation almost a year later.

Jennifer and Angie had waited five months for this call, but they had waited years for a baby.

Together for about a decade after meeting when they played on opposing softball teams, Jennifer and Angie first tried to have a child four years ago via intrauterine insemination. But the procedure wasn’t successful.

Jennifer is adopted and Angie’s brother also is adopted, so the couple was open to bringing a child who wasn’t biologically related to them into their family. And they were open to almost any child, checking all the boxes for race and nearly all of them for medical conditions.

They wanted a kid to love.

But they were nervous as they

Our surgical team repaired Elli’s cleft lip before she turned one.

walked into the neonatal intensive care unit with the birth mother to meet Elli for the first time.

“What if I don’t connect with her?”

Jennifer remembers thinking. “Or what if I’m not sure?”

As they peered over the isolette in the NICU, they saw past the crooked smile of Elli’s cleft lip and “ the congenital heart defect that doctors initially thought wasn’t severe.

“She was beautiful to us despite her medical issues. Once we met her, we were done,” Angie said.

“It was instant love.”

heart catheterization — a minimally invasive diagnostic treatment that involves passing a catheter through the vessels supplying blood to the heart to test her heart function.

“Based on that experience, we moved all of her medical care to Children’s Health,” said Angie, who serves on the board of the Texas chapter of the Pediatric Congenital Heart Association. That included care for gastrointestinal issues, and cleft lip and palate.

“The doctors were amazing. They sat ” down and talked to us and were very empathetic to the kind of news they had to share.”

Elli had a small ventricular septal defect — a hole in the wall separating the ventricles of her heart that doctors expect to eventually close.

But she also had an atrial septal defect — a hole in the wall between the two upper chambers of her heart.

And for Elli, it meant practically her whole wall was missing.

The only option was open heart surgery before she was six months old. And it had to happen quickly because Elli wasn’t gaining weight.

During the surgery, a complication with her pulmonary artery kept Elli on oxygen at Children’s Medical Center Dallas for three weeks.

During that time, a Children’s Health music therapist came to visit Elli in her room, playing a ukulele and soothing the tiny patient with a lullaby. Elli kicked her feet and wiggled her arms as the therapist leaned over her crib, strumming and smiling.

And, for the first time since surgery, Elli smiled back.

“There is a level of true care at Children’s Health,” Angie said. “The doctors, nurses and all the staff truly care about the patients, which is really comforting and makes it feel more like a family.”

There was a level of

true care at Children’s Health.

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— Angie

lli was nearly two months old when Jennifer and Angie took her home for the first time.

About a month later, they noticed signs of heart failure.

Elli was gaining weight slowly, had a heart rate of 160 and a high respiratory rate.

But the biggest clue was the sweating when she ate.

“I said, ‘Oh gosh, do you think she has diabetes, too?’” Angie said. But Jennifer, a nurse and former high school teacher, feared it was her heart and called the cardiologist.

After receiving numerous recommendations, the couple first came to Children’s Health℠ for Elli’s

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ennifer and Angie took deep breaths and leaned in to blow out the candle.

One candle for one special little baby’s first birthday.

Jennifer dabbed a bit of yellow frosting on Elli’s lips for her first taste of sugar.

That Sunday in early November was a birthday party for Elli. But it was also a celebration for Jennifer, Angie and everyone in their circle.

The table of little sandwiches, chips and sherbet punch celebrated an adoption ceremony that legally made Elli their daughter. The party also marked a year of lawyers, legal proceedings, doctor visits and surgeries, which aren’t over for Elli.

A month earlier, the couple had waited at the Specialty Center at Children’s Medical Center Dallas for a checkup following a surgery to repair Elli’s cleft lip.

There, Angie bounced a cooing Elli on her knee as Jennifer leaned in to give her a kiss on the cheek.

“Hi, goose!” Jennifer said. “Can you say mama?”

This spring, Elli will have another surgery to repair her cleft palate.

She’ll continue to have surgeries throughout the course of her life

Jennifer (right) and Angie trusted Children's Health for their daughter's care — including open heart surgery.

to repair her palate and treat her congenital heart defect.

At the top of the stairs in Angie and Jennifer’s home hangs a giant portrait of Elli before her lip repair surgery — shirtless, with a crown of flowers on her head, proudly displaying their daughter’s cleft lip and wide smile.

Angie’s dad, Ed, points to the photo as he hugs friends entering the birthday party in November.

“The people at Children’s Health have been amazing,” he said. “I really thought I was going to miss that crooked smile, but she looks incredible.”

What else you need to know: In 2018, clinical team members in the Heart Center performed more than 800 cardiac surgical procedures.

Our Heart Transplant Center is one of the largest in the country. We are also the busiest pediatric cardiac transplant center in Texas and the second busiest of all 50 U.S. centers, with 26 transplants performed in 2018.

The Heart Center ranks among the top cardiology and cardiothoracic surgery programs in the country, providing excellent care and outcomes to patients with congenital heart conditions.

The Heart Center has the only pediatric ventricular device (VAD) program in North Texas. And our state-of-the-art facility is one of the few centers worldwide that performs radiation-free cardiac catheterizations using MRI technology.

In the last five years, donors have given more than $4 million to the Heart Center at Children’s Health to assist in the treatment of heart conditions. But with more than 13,000 outpatient clinic encounters and about 1,200 inpatient admissions in 2018 alone, your support is critical in helping us fulfill our mission to make life better for children.

give.childrens.com

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‘She didn’t do it for the money.’

58-year-old donor who worked nights, weekends in ER leaves planned gift to Children’s Health

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ichard Drouillard leaned back in the plastic chair and pointed behind him in the direction of the emergency department at Children’s Medical Center Plano.

One day, his wife’s name will hang at the check-in there.

Months had passed since Dawn Drouillard’s death from an aggressive bone cancer, and Richard can’t understand why this happened.

Dawn was a wife, a mother, a sister, a daughter. She was an IT director at Securus Technologies. She was also an ER technician at Children’s Health.

She was 58 years old.

As a planned gift, Dawn left a $150,000 insurance policy to Children’s Medical Center Foundation to be used to further the hospital system’s mission to provide world-class care and help make life better for children.

“She was glad we planned to spend our money to help future generations,” Richard said. “We didn’t think it would happen this soon, though. That was the sad part.”

A private person, many of her friends and colleagues didn’t know until the last couple of months of her life that she was dying.

Some didn’t know Dawn held a side job for more than a decade working in the emergency department at

Children’s Health, coming in at night after she left her full-time corporate day job and on the weekends.

“She loved the children. She loved helping the children,” Richard said of Dawn’s work at Children’s Health.

“She didn’t do it for the money.”

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ne of the first things Richard noticed about Dawn was her athleticism.

It was the summer of 1984, and they both had moved into the same apartment complex in Plano.

“She knew how to throw a baseball,” Richard said.

In fact, Dawn had been a track star at her Iowa high school. The couple met playing racquetball in a tournament at the apartment complex where they lived.

She and Richard both moved thousands of miles from home that year — he from Canada and she from Iowa — and were looking for a fresh start in Texas.

Their first date was dinner and a showing of “St. Elmo’s Fire.”

A year later, just before Christmas, Richard asked Dawn over a delivery pizza dinner to marry him.

“I didn’t get down on one knee. It was a simple, ‘Would you like to get married?’” Richard said.

A small church ceremony on July 12, 1986, surrounded by their immediate family — followed by a reception at the apartment complex where it all began — united them officially as husband and wife.

“And from that point on, we grew closer every year,” Richard said. “We did everything together. We were best friends.”

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awn built a career in information technology, starting at The Staubach Company and rising to the rank of IT director at Securus Technologies — a prison communications firm.

But in college, she had dreamed of becoming a doctor or nurse.

When their daughter, Carly, went to college, Richard took up golf and Dawn went back to school, studying to be an emergency medical technician.

“She always wanted to do that and felt like she missed out,” Richard said. For about a decade, she worked as an ER technician at Children’s Health, balancing night and weekend shifts at the hospital while carrying a full-time corporate job.

But for Dawn, there was always more to do. In addition to working two jobs, she cared for her family and friends and volunteered at her local church, The Catholic Community of St. Elizabeth Ann Seton in Plano.

She had meals delivered to her elderly parents. She also made laminated cards for them and Richard with their daily medications and dosages.

Richard still carries his in his wallet.

She wanted to make sure they were taken care of, even if she was no longer there to do it.

“You don’t know my wife,” Richard said, chuckling, when asked how she did it all. “She was an amazing woman.

She had energy to spare.

She said sleeping was a waste of time.”

In an email on July 10, 2019, to the staff at Securus Technologies telling them of Dawn’s death, CEO Robert Pickens wrote the last time he saw Dawn she was in the hospital and knew the end was near. She was retrospective and focused on her actions in life.

“And she asked me if I thought she had done enough in her life to get into heaven,” he wrote. “I assured her that she had done far more than enough.”

“You got it done, Dawn.”

She loved the children.

She loved helping the children. ­­— Richard Drouillard

We make life better for children. Will you?

Join us in our mission and leave a legacy for future generations More than half of Americans die without a will. When this happens, assets are distributed according to the state laws where the person lived at the time of death. But this scenario might not reflect your family’s best interests and will not create your philanthropic legacy.

To help you take care of your loved ones and leave the legacy you value, Children’s Health has partnered with FreeWill.com to help you create your will online at no cost. To get started, visit give.childrens.com/mywill.

This information is general and may not apply to all individuals. It is not offered as legal or financial advice but is purely educational in nature.

give.childrens.com/mywill

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Tackling Childhood Brain Cancer Q&A with Dr. Sam McBrayer

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hildren’s Medical Center Research Institute (CRI) at UT Southwestern recently recruited Dr. Sam McBrayer to become the institute’s eighth faculty member and principal investigator. His lab will focus on understanding pediatric and adult brain cancers with the ultimate goal of discovering new treatment options.

Dr. Sam McBrayer earned his Ph.D. in cancer biology from Northwestern University’s Feinberg School of Medicine and was an American Cancer Society postdoctoral fellow at the Dana-Farber Cancer Institute and Harvard Medical School.

Q. Why were you interested in joining CRI? A. I was fortunate to interview at a number of institutions with strong biomedical research programs, but three factors set CRI apart from the others: First, the investigators that comprise CRI are truly world class at addressing important research problems. They represent exactly the type of scientists I hoped to have as

The motivation for my work is to address fundamental, big-picture questions in cancer biology to expand our understanding of this disease and devise innovative ways to combat it. I am certain the ethos and support at CRI will allow me to pursue ambitious, impactful avenues of investigation that could meaningfully change the way we think about and treat cancer.

colleagues when I began my search for a faculty position.

Second, the dominant areas of research at CRI align closely with my interests in metabolism, epigenetics, cancer biology and stem cell biology.

Third, during my visits to the institute, Dr. Sean Morrison, director of CRI, conveyed his vision of allowing CRI faculty members to “swing for the fences” in their research, which really resonated with me.

Send a special valentine to our patients!

Valentine’s Day is a chance to tell people in our lives how much we care.

Our patients would love to hear from you! Send a free, digital Valentine’s Day message to be displayed on devices across Children’s Health for our patients to enjoy.

1. Visit childrens.com/valentines.

2. Choose your card and write your message.

3. Sign your name and send.

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childrens.com/valentines

Q. What are you researching and why is it important?

A. We are interested in learning how changes in cellular metabolism promote cancer development and allow tumor cells to adapt to stress. We study a subset of malignant brain tumors — known as gliomas — that are driven by mutations in genes that produce metabolic enzymes. Until recently, it was thought that metabolic differences between normal and tumor cells mostly occurred as a consequence — rather than a cause of — cancer transformation. The discovery that metabolic enzyme mutations can initiate cancer formation significantly changed our thinking about The thrill this relationship and prompted important of discovery questions about how altered metabolism is uniquely promotes the initiation of cancer. gratifying — it never Our goal is to identify the metabolic gets old. mechanisms that push cells to become — Dr. Sam cancerous and find new McBrayer ways to inhibit them in the context of brain cancer.

Studying these mutations will help us discover fundamental connections between metabolism and other brain tumor cells with these aspects of cell biology that are likely mutations to radiation therapy. to control cancer formation in many This strategy is exciting because different tissues. These insights hold it could allow patients to derive great promise for the development of a greater benefit from standard precision medicine-based treatments radiation treatments, or alternatively, for brain tumor patients with limited could allow clinicians to use lower therapeutic options, along with doses of radiation in combination patients with other types of cancer. with this drug to achieve the same result with fewer side effects. The Q. How do you expect your work National Cancer Institute recently will one day help patients? decided to fund a clinical trial to test A. Recently, we uncovered a defect our treatment strategy, and we are in nitrogen metabolism caused by hopeful that this new therapeutic mutations in metabolic enzymes approach will lead to better that can be exploited by combining outcomes for brain tumor patients. a new anticancer drug with radiation therapy. We showed that this Q. What do you love about science? combination treatment strategy can A. The thrill of discovery is uniquely selectively increase the sensitivity of

Since joining CRI in July 2019, Dr. Sam McBrayer has already received grants from the National Cancer Institute and the Cancer Prevention and Research Institute of Texas.

gratifying — it never gets old. I love knowing that the research we pursue can directly improve patients’ lives.

I also relish the ability to instill a passion for science and an objective, reductionist mindset in the trainees in my laboratory.

Q. What do you like to do when you’re not in the lab?

A. I try to maximize time with family and friends, especially with my wife, Molly, and our daughter, Sierra.

I love food, so I cook frequently and enjoy exploring new restaurants and cuisines. I also enjoy spending my time being active and outdoors. I like hiking, running, biking, fishing and skiing, among other activities.

Not Just a ‘Computer Guy’ Why this IS team member raises money for Red Balloon Run & Ride

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hristian Salcedo is a handshake guy, extending firm ones down hospital hallways to everyone he knows.

And after working at Children’s Health for almost two decades, Christian, Informational Services project lead, knows a lot of people.

10th Annual Run & Ride Saturday, April 25, 2020

There’s the guy in housekeeping who told Christian that Children’s Medical Center Dallas is where he lost his son and works here now because the hospital is where he feels closest to him.

There’s the doctor who treated Christian’s son for a gastrointestinal issue when he was a toddler and still asks how the now-teenager is doing.

Last year, Christian handed out his signature handshakes alongside 300 donated chocolate and vanilla cupcakes topped with thick red icing during a fundraiser at Children’s Medical Center Dallas for his Red Balloon Run & Ride team. He has overseen the Run IT team as captain for the last three years, after recovering from a car accident that kept him away from work for months spurred him to give back.

“I was always a positive person,

but the accident changed my life,” he said. “I’m thankful to be healthy. It made me appreciate my health and want to help other people.”

In May, the Run IT team raised more than $3,000 to send patients to special needs medical summer camps facilitated by Children’s Health. Last year, the team raised more than $18,000 — which included the support of a $15,500 donation — to send kids to these camps.

“I tell people, ‘I know you don’t run. I know you don’t walk. But Red Balloon Run & Ride is about us helping the kids,’” he said.

Christian works on the customer services team at Children’s Health.

He’s not on the frontlines of patient care, but he’s the guy who helps get equipment ready for new employees throughout the hospital system and who coordinates the technology for

talented people with big hearts.” fundraising events to raise money Born and raised in Peru, Christian for patient care. immigrated to the He also helped United States when he arrange for the was 20 years old to join equipment to family living in Texas. launch Children’s The move meant Medical Center leaving behind his Plano a decade studies in business ago, stocking administration. But in it with computers, the U.S., a job at a call telephones center — where he was and printers. trained to work as “In IS, we’re not a traffic controller — just computer — Christian Salcedo piqued his interest guys. We’re part in computers. of Children’s, “When I moved and we want to here, I became more curious about support the kids,” Christian what was out there for work,” said. “We’re a big group of

Working here you see the people and the passion they have to help the children.

Christian said. “Now, I have four kids. I built my life here.”

Christian worked at Children’s Health as a contractor before he was offered a job as a full-time employee in Informational Services.

His job gives him an aerial perspective of the hospital system, sending him regularly to different campuses and facilities, meeting new people.

“Working at Children’s Health, you see the people and the passion they have to help the children. Every single department in the hospital is dedicated to the children,” Christian said. “I feel proud to work here, so I want to give something back.”

Ready to run & ride for Children's Health in 2020?

Red Balloon Run & Ride celebrates its 10th anniversary on April 25. Run, walk or ride alongside our patients at the family-friendly event to help raise awareness and funds for our mission to make life better for children.

NEW THIS YEAR Download our mobile app for on-the-go fundraising!

To get started visit: childrens.com/runandride.

Last year at the run & ride:

$865,214

204

4,655

665

TOTAL FUNDS RAISED

REGISTERED PARTICIPANTS

TEAMS

VOLUNTEERS

1,986 DONORS

13

SPONSORS

childrens.com/runandride

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President Brent E. Christopher Senior Director, Communications and Stewardship Dana Beckman Director, Communications Ashley Kellogg Senior Communications Specialist Nanette Light Manager, Digital Content Chelsea Whelpley

10th Annual Run & Ride Saturday, April 25, 2020 childrens.com/runandride

Contributors Marvis Browder Katie Regan Design Eric Rob & Isaac Photography Juan Pulido Lori Wilson