July 8, 2019

Texas Children’s patient Eden Green visits Capitol Hill to advocate for graduate medical education funding.

Progress doesn’t just happen. It takes real conversations between people who care.

That’s exactly what happened recently when Texas Children’s Hospital patient Eden Green visited Washington, D.C., during the 15th annual Speak Now for Kids Family Advocacy Day.

The vibrant 14-year-old met with a handful of Texas lawmakers, including former Congressman Gene Green and Representatives Michael McCaul and Dan Crenshaw. She hopes her voice brings change and increased investment in pediatric cancer research.

Family Advocacy Day, hosted by the Children’s Hospital Association (CHA), was focused on ensuring that a federally-funded pediatrician training program receives an increase in financial support, among other issues.

According to CHA, the hospitals that receive Children’s Hospitals Graduate Medical Education (CHGME) train approximately half of the nation’s pediatricians. Texas Children’s is one of those hospitals.

Increased CHGME funding helps recruit and retain the highest quality pediatricians.

A Young Advocate in the Making

Eden’s story is one we can all be proud of. In 2015 at just 10 years old, she was diagnosed with a rare tumor – so rare it still doesn’t have a name. It had spread throughout her body. An individualized treatment plan was drafted by the Rare Tumors and Neuroblastoma Programs at Texas Children’s Cancer Center, which included many rounds of chemotherapy and hip surgery.

Eden was cancer free for nearly two years when she relapsed in June 2018. Thanks to funding by Alex’s Lemonade Stand Foundation (ALSF), Eden had the opportunity to participate in a novel clinical trial at Texas Children’s Cancer Center for pediatric patients with relapsed disease that allowed her to go into remission for the second time.

Dr. Jennifer Foster, who is Eden’s pediatric oncologist at Texas Children’s, couldn’t be prouder of her patient’s trip to D.C. Foster said she often urges patients and medical professionals to get involved in the legislative process.

“As medical professionals, we can all advocate at a patient level, but we won’t experience any real change on a global level until we tap into the policy side of health care,” Foster said. “There is so much we can do as pediatricians and getting involved in the political process is part of that.”

Foster goes on to say that everyone can help the cause in their own way.

“Eden is an incredibly dynamic individual – truly someone who lights up a room when she walks in. Speaking out and interacting with people is one of her gifts and she’s using it to give back to Texas Children’s.”

You can also help.

Texas Children’s is a hospital that receives CHGME funding. You can help the cause! Let your voice be heard, here: https://actnow.io/m8pHocn

June 3, 2019

Texas Children’s Hospital recently hosted Congresswoman Lizzie Fletcher for a tour of Lester and Sue Smith Legacy Tower. It was a first visit for Fletcher, who represents Texas’ Seventh Congressional District, which includes residents of Houston, Bellaire, Bunker Hill Village, Hedwig Village, Hilshire Village, Hunters Creek Village, Jersey Village, Piney Point Village, Southside Place, Spring Valley Village, West University Place, and unincorporated Harris County west to Katy.

After being welcomed by President and CEO Mark Wallace, Fletcher visited Texas Children’s award-winning Mission Control. There she learned from Bert Gumeringer, vice president of Facilities Operations and Support Services; Gail Parazynski, vice president of Nursing; and Deb D’Ambrosio, director of Transport Services and Mission Control how the state-of-the-art operations center uses real-time data and cutting-edge technology to simplify and streamline processes, bringing together security, facilities, code response, critical care admissions, hospital-to-hospital transfers, critical clinical alarm monitoring and room management in one central location.

Next, Fletcher visited our therapy gym on the 23rd floor, where she observed a music therapy session for some of our youngest Texas Children’s Heart Center® patients. Chief of Pediatric Cardiology Dr. Daniel Penny and Chief of Congenital Heart Surgery Dr. Christopher Caldarone then led Fletcher through some of the facilities in our best-in-the-nation Heart Center. These included our outpatient cardiac clinic, the Charles E. Mullins Cardiac Catheterization Labs and our cardiovascular operating rooms.

Following her Heart Center tour, Fletcher concluded her time at Texas Children’s with a visit to the pediatric intensive care unit (PICU) and our neurointensive care unit on the ninth floor of Lester and Sue Smith Legacy Tower. In the PICU, she had an opportunity to meet the parents of 10-month-old Emmy, who recently underwent a liver transplant. She was then guided through the neurointensive care unit by Medical Director of Neurocritical Care Dr. Jennifer Erklauer. This special unit – one of the first of its kind in the country – combines the latest neuro-monitoring techniques with collaborative team-based care for patients with neurologic issues. Fletcher saw firsthand the cutting-edge monitoring technology in our continuous EEG monitoring room, where patient brain wave activity is measured and reviewed in real time, 24/7, and can be used to detect seizure activity or acute changes in the brain that may require additional evaluation or intervention. While in the unit, she met the mother of 11-month-old Kayla, who has a rare seizure disorder.

The parents of both children told Fletcher about the helplessness they’d felt watching their infant children endure such dire health issues. But because of the expertise and care they’d experienced at Texas Children’s, they were filled with confidence that they were in the best possible place to help their children.

December 3, 2018

A muralist’s vision to transform the concourse of Wallace Tower into a vibrant piece of art has finally come true.

With the help of the Texan-French Alliance for the Arts, the Periwinkle Arts In Medicine Program and an anonymous donor, the concourse is now covered in large colorful paintings of dinosaurs, hearts, unicorns, spaceships, rainbows and more.

“As cars pull up, they’re greeted with this vibrant story that’s almost like a seek-and-find,” said Carol Herron, coordinator of the Periwinkle Arts in Medicine Program. “Can you find the dinosaur? Can you find the ship? It’s just something that’s inviting and really full of life, just like the hospital is.”

Patients with Texas Children’s Cancer and Hematology Centers as well as children who have spent time on Texas Children’s Hospital’s Renal Dialysis Unit created the bulk of the artwork represented in the mural. Pediatric patients from Foundation Lenval Children’s Hospital in Nice, France pitched in too, coming up with the portion of the mural that portrays a globe with a bridge going from Texas to France.

Texan-French Alliance for the Arts Executive and Program Director Karine Parker-Lemoyne and her colleague, Marjon Aucoin, art director for the W.I.D.E. School, organized the collaboration with the patients in Nice and facilitated workshops with patients at Texas Children’s to create the artwork for the mural.

Sebastien Boileau, a French-American muralist with Houston-based Eyeful Art Murals and Designs, then took the art, and with a handful of his fellow muralists, replicated it onto the walls of the Wallace Tower concourse.

“We didn’t put our artistic ego into it,” Boileau said. “We really tried to respect their vision, copying it stroke for stroke, discrepancies and all.”

View the professional and patient artists at work below.

Boileau, who has created some of Houston’s most-famed mural art, said the vision for the project, called “The Door to Hope,” came to him five years ago when he was visiting his friend whose child just had heart surgery. During his visit, he passed through the Wallace Tower concourse, which at the time was a blank canvas.

Being a muralist who likes to decorate large spaces, Boileau said he saw a lot of opportunity and took his idea to the Texan-French Alliance for the Arts. They in turn reached out to Texas Children’s. Once funding was secure, the project was green lighted and completed in just a few months.

During the painting process, Isaac Bogani, the patient Boileau went to visit in the hospital years earlier, joined the artist and helped him replicate a heart he created for the project. The experience was special for both Isaac and Boileau.

“This project is very dear to me,” Boileau said. “I’m really excited about it.”

Both Boileau and the Texan-French Alliance for the Arts have long-standing relationships with Texas Children’s. Boileau painted the mural featured at the playground adjacent to the Abercrombie Building. The Texan-French Alliance for the Arts has worked on various projects with the Periwinkle Arts In Medicine Program at the hospital over the past decade.

“We love working with Texas Children’s,” Parker-Lemoyne said. “This project has been amazing. It really honors the work of the children we worked with and exudes love, wonder and hope.”

September 4, 2018

Each year in September, Texas Children’s Cancer Center goes gold to honor the courageous journeys of our patients and families who have been touched by pediatric cancer and to create awareness about the challenges these children and their loved ones face. It is also a special time to honor the Cancer Center’s staff and everyone involved in the care and support of those who come to Texas Children’s seeking our aid.

Today, you will hear from patients, family members, doctors and other medical staff as they explain why they Go Gold in September and what makes raising awareness about pediatric cancer so important. Additional comments from staff and Cancer Center supporters will be highlighted on Instagram @oneamazingteam.

Throughout the month, there are several events scheduled across the organization geared toward raising awareness about childhood cancer. Some of those event are listed below. Please check the Connect calendar and the Cancer Center’s Facebook page for additional details. Also, visit the Texas Children’s Blog for Cancer Center related posts throughout the month.

“We are proud to say that our Cancer Center helps children fight and defeat cancer every day,” said Dr. Susan Blaney, director of Texas Children’s Cancer and Hematology Centers. “We hope you will stand with us in Going Gold for childhood cancer, so that together, we can create a healthier future for children in our care.”

Upcoming cancer awareness activities:

  • September 4 at 2 p.m. – Main Campus Going Gold Parade and Ribbon Tying Event starting on fourth floor of the Pavilion for Women and ending on The Auxiliary Bridge.
  • September 4 at 6 p.m. – Vannie Cook Children’s Clinic in McAllen Going Gold Parade and Ribbon Tying Event
  • September 5 at 10:30 a.m. – West Campus Going Gold Parade and Ribbon Tying Event in front of hospital’s main entrance
  • September 6 at 10:30 a.m. – The Woodlands Going Gold Parade and Ribbon Tying Event in the main lobby of the hospital
  • September 8 at 2 p.m. – The opening of and reception for the Periwinkle Foundation’s Making A Mark exhibit on The Auxiliary Bridge. The exhibit, which highlights the art and creative writing by children touched by cancer and blood disorders at Texas Children’s Cancer and Hematology Centers, will be in the bridge throughout the month.
  • September 13, 20 and 27 at 1 p.m. – KPRC Channel 2 will air segments highlighting the Cancer Center.
  • September 13-14: International Pediatric Thyroid Cancer Conference in Cullen Auditorium at Baylor College of Medicine.
  • September 14 at 10:30 a.m. – Be the Match Patient Walk on the eight floor of the Cancer Center in the Bone Marrow Transplant Unit
  • September 16-19 – Houston City Hall will be lit gold
  • September 21 – The President of Botswana Mokgweetsi Masisi to visit Cancer Center
  • September 25 at 9 a.m. – The annual Hyundai Hope on Wheels Tour will stop at Texas Children’s in support of research and programs that bring us closer to better treatment and possible cures to cancer. The tour is a united effort of Hyundai dealers who travel the country to present Hyundai Scholar grants to children’s hospitals.

To learn more about Texas Children’s Cancer Center, click here.

Thanks to a generous donation on behalf of the Harris County Houston Sports Authority, Texas Children’s was able to host a Peanut Allergy Friendly Day at the July 14 Houston Astros game against the Detroit Tigers. Eight families with children who are allergic to peanuts got to watch the game from an area filled with peanut-free foods.

Many children with allergies are not able to attend sporting events such as baseball games due to fear and anxiety of being exposed to foods such as peanuts. At an event like the Peanut Allergy Friendly Day, children with allergies can sit back, relax and really feel the energy and excitement we all experience when we attend an Astros game.

To learn more about allergies in children, sign up for Texas Children’s 5th annual Food Allergy Symposium. The event is from 8 a.m. to noon on Saturday, September 29, at the United Way Community Resource Center at 55 Waugh Drive, and will focus on educating the community about emerging therapies and new research initiatives. Experts will discuss the new Stock Epinephrine Bill, as well as practical coping strategies for children with established food allergies. We will have youth sessions for children and teens, a photo booth, live cooking demos from our clinical dietician, and interactive breakout sessions for caregivers. Register for this event here: www.texaschildrens.org/allergysymposium.

August 7, 2018

It is that time of the year again; the end of summer means the beginning of a new school year. Texas Children’s Hospital’s Social Work Department organized a back-to-school fair to provide information to patients and their families to help them prepare for the new school year.

“Events like this provides community organization opportunities,” Social Work Manager Jackson Huynh said. “It allows them to reach and serve Texas Children’s patients and families affected by childhood illness that other community organizations will not be able to reach and serve due to a child’s hospitalization and/or rigorous outpatient treatment plan.”

On July 31, the Texas Children’s Hospital Medical Center Auxiliary Bridge quickly filled with tons of patients and their families waiting to take advantage of the opportunity to receive free school items.

Texas Children’s relationships and partnerships with many groups and agencies made way for a great response when it came to soliciting organizations to participate.

Below are the groups that occupied tables with information along with a few goodies for children and their parents to take with them.

  • One Step Closer Foundation – a non-profit, charitable organization whose main goal is to ease, as much as possible, the lives of those who suffer from cerebral palsy.
  • Houston Food Bank – a private non-profit organization and a certified member of Feeding America, the nation’s food bank network.
  • Neuhaus Education Center – a non-profit educational foundation dedicated to promoting reading success.
  • Families Empowered – a non-profit organization founded to support the escalating number of families searching for a great school for their child.
  • Disability Rights – recognizes the varied needs of people with disabilities in Texas.
  • HEP Bookstore – a homeschool resource; a bookstore specializing in instructional materials & books for home schooling in a range of subjects.

The One Step Closer Foundation provided the DJ and decorations for the bridge. In addition the foundation, along with the Houston Food Bank, backpacks and school supplies were also given away to patients and their siblings. The fair also provided opportunities for Texas Children’s departments such as Nutritionist, School Coordinators, Animal Assisted Therapy Program, Child Life, the hospital Dieticians, and schoolteachers, to showcase their skill set so that parents and students are more confident and prepared for the upcoming school year.

There was even a photo area created for parents to take school photos of their children. This was a very popular portion of the event for families, as it creates normalization for those who are not able to leave the hospital to attend school and pictures.

The social work department’s goal has been to create an immense presence and emphasize their role in maintaining exceptional patient experience year round.

“We work with families and provide them resources for the various agencies present, so we thought it would be great to bring the agencies here to the hospital,” Social Work Clinical Specialist DeAdra Cage said. “Providing resources to help parents work with the various schools is a big part of our job as Social Workers.”

Many parents who have children in the hospital may not have the time or financial ability to purchase all the necessities needed for school. This event was able to help make the start of the school year a little easier and among all things, let parents know that Texas Children’s is there to support them and their needs.

“It’s a great feeling to be able to assist our families who already have so much going on,” Cage said. “We are very proud of the outcome. As we anticipated, we had an awesome turnout! We were focused on helping the patients and siblings who happened to be on site the day of the event.”

With a goal of helping 300 children, the actual end result was 500. The back-to-school fair was an overall success and the Social Work Department hopes to make this an annual event for many years to come.

July 10, 2018

Texas Children’s Hospital was back on Capitol Hill in June in support of the Children’s Hospital Association Speak Now For Kids Family Advocacy Day, which brings patient families from around the United States to Washington, D.C. to share their experiences with lawmakers and staff, as well as to advocate for policies that will ensure the highest levels of medical care for children and their families.

We had a strong team from Texas Children’s participate this year. Anthony DeLuca, Chairman of the Board of Director’s Policy Committee, joined the Texas Children’s Government Relations and Public Relations teams in accompanying Tenley Kennedy, a heart transplant patient, and her family on visits to Capitol Hill.

Tenley is a perfect example of the type of child who needs fierce advocates and the specialized care very few hospitals can provide. Tenley was diagnosed with a severe heart condition prenatally, so her mother, Kelly, had to travel from her home state of Louisiana to Texas Children’s in order to access the care her baby would need. Tenley was a patient of Texas Children’s before she was ever born and touched nearly every aspect of our hospital’s top ranked Heart Center. Kelly shared that without Texas Children’s her daughter would not be alive today and that without Medicaid coverage they don’t know what they would do.

“Thank you Texas Children’s for choosing us to be your family advocates for Family Advocacy Day,” Kelly said. “We are truly blessed and feel so honored to represent such a wonderful hospital.”

Kelly, Tenley and the Texas Children’s team were able to meet with Senator Bill Cassidy (R-LA), who sits on the Senate Health, Education, Labor & Pensions Committee; and Congressman Gene Green, who serves as the Ranking Member on the House Energy and Commerce Committee’s Health Subcommittee, as well as staff from other House and Senate offices.

“In many ways, this visit was a culmination of our efforts this spring to expand Texas Children’s visibility on Capitol Hill,” said Rosie Valadez McStay, assistant vice president of Texas Children’s Government Relations. “In the past two months, members of Congress and their staffs have heard testimony from physician leadership, received insight into important programs from hospital administrators, seen the commitment and hands-on involvement of the Board of Directors, and now been exposed to some of the realities facing patient families. As a testament to this ‘all in’ engagement, Rep. Pete Olson (R-TX) cosponsored the ACE Kids Act within 24 hours of our most recent meeting.”

The ACE Kids Act is a congressional proposal to improve how care is delivered to America’s children who have complex medical conditions and are on Medicaid. Once enacted into law, the act will improve coordination of care, address problems with fragmented care across state lines, gather national data on complex conditions to help researchers improve treatments for rare diseases, and potentially save billions of dollars over the duration of 10 years.

“We will continue to look for opportunities to broaden our relationships and put Texas Children’s leadership and experience at the forefront of future policy discussions, McStay said. “We believe our involvement can make a difference.”