October 15, 2018

Diagnosed with a rare cancer called Langerhans cell histiocytosis, Shauntelle Tynan traveled 5,000 miles from her home in Ireland for a cure.

Earlier this month, Shauntelle rang the end-of-treatment bell at Texas Children’s Cancer and Hematology Centers!

During her bell ringing ceremony, she surprised Dr. Kenneth McClain, director of the Histiocytosis Program, with a donation toward histiocytosis research. A very special and emotional moment surrounded by family and friends. Join us in congratulating, Shauntelle!

To learn more about her journey, read Shauntelle’s blog at Texas Children’s Blog.

October 8, 2018

A world-class, multidisciplinary team at Texas Children’s is making huge strides in the care of children with extremely complex tumors.

The Head and Neck Tumor Program, begun in February 2016 as collaboration with partner institutions within the Texas Medical Center, has performed more than 20 major ablation free-flap multidisciplinary cases – a staggering number, considering the rarity and complexity of the tumors, which can be malignant or benign and can affect any combination of the sinuses, skull, jaw, mouth, neck and face. The ability to handle that volume of complex cases, combined with tremendous outcomes in the first two years, puts Texas Children’s Head and Neck Tumor Program among the best such programs in the country.

“Our institutional expertise is in taking care of these kinds of critically ill children, and Texas Children’s does it better than anyone,” said Dr. Daniel Chelius, attending surgeon in the Division of Otolaryngology and co-head of the program. “We’ve built a collaborative, coordinated program on that foundation of expertise in many different areas to provide the best care possible for the sickest children, while also reviewing and analyzing the care from every angle to see what went well and what processes could improve.”

Treatment of children with head and neck tumors around the country has historically been ad hoc, due to the varying functional issues or oncologic needs present from patient to patient and the extreme rarity of the tumors in any given city. Compound these complex physiological issues with the fact that most children these tumors have been treated in adult hospitals and the result has been a largely disjointed approach to care.

Texas Children’s Head and Neck Tumor Program, spearheaded by Chelius and Dr. Edward Buchanan, chief of Plastic Surgery, has developed a coordinated process around a multidisciplinary team approach that builds crucial experience in the treatment of these rare tumors and provides consistent, personalized care for patients – like 15-year-old Kami Wooten.

Last year, Kami began to notice swelling in her gums. Just months later, a benign tumor had covered half her face and threatened her vision. The team at Texas Children’s developed a specialized care plan that included removing the mass and reconstructing a portion of her face including the roof of her mouth and her orbit (eye socket). Additional procedures will be necessary in the future, but Kami and her family are grateful for the care Texas Children’s gave them.

Learn the rest of Kami’s story here.

The collaborative program comprises more than 10 Texas Children’s specialties and subspecialties, including Otolaryngology, Plastic Surgery, Neurosurgery, Oncology, Interventional Radiology and Anesthesiology, as well as a dedicated operating room team – led by Audra Rushing and Kelly Exezidis – that has been instrumental in building robust perioperative protocols. The additions of pediatric head and neck surgeon Dr. Amy Dimachkieh and microvascular reconstructive surgeons Dr. W. Chris Pederson and Dr. Marco Maricevich have increased the program’s abilities and improved the quality of its recommendations.

“It takes a lot of thought and planning to remove these complex tumors completely, while sparing as many nerves and other important structures as possible, and then to reconstruct those structures to provide both a good functional and cosmetic outcome,” Chelius said. “We tell our patients that the process might not be fast because they need the right surgery the first time. That requires recommendations from a team of experts, not just one surgeon. And that means carefully coordinating to make sure everything is as perfect as possible.”

The care required to treat these tumors, particularly if the patient is also undergoing cancer treatment, can also take a massive emotional and psychological toll. The Head and Neck Tumor Program provides additional care support through the department of Clinical Psychology and Child Life Services.

The team also uses technology to enhance the patient experience, from diagnosis to recovery. The program uses 3-D modeling to reconstruct children’s anatomy to help predict the extent of resection and to develop the surgical plan. The team also developed a data-driven protocol for pediatric tracheostomy removal, in close collaboration with Speech and Language Pathology, which uses a pressure monitoring device to signal when the trach is loose enough in the airway to be removed without adverse effects.

As a result of this innovative approach to care, 100 percent of patients treated have left the hospital breathing, eating and swallowing on their own. And the average stay in the hospital: just 14 days.

The program has been steadily building a referral base, drawing patients from across the region and from as far away as Mexico and the Middle East. In the near term, the team will continue to solidify the program, publish data and findings, and work to increase Texas Children’s reputation as the leading referral center for these complex cases. Long-term goals include building a basic science research infrastructure around understanding the underlying causes of these tumors, as well as collaborating with Texas Children’s Cancer Center and other research partners.

“We know that families are coming to us shocked and scared,” Chelius said. “We want them to know that we’re building our experience, we’ve walked families through this before, and we’re going to get them through this with the absolute best care available.”

Learn more about Texas Children’s Head and Neck Tumor Program.

Come join over 300 walkers for the Torch Relay on Friday, October 19 at The Woodlands Waterway Marriott Hotel in The Woodlands. The relay consists of a 3-mile walk around The Woodlands Waterway, followed by an after party with food, a band, DJ, carnival games, face painting, and a balloon and caricature artist.

All proceeds benefit the Children’s Miracle Network program at Texas Children’s Hospital and help children like Grace Anto, who was diagnosed with coronal suture craniosynostosis.

Resilience in children means being able to adapt well to adversity, trauma or even significant sources of stress. Grace Anto, a patient at Texas Children’s, is just that – resilient.

“When Grace was born in August 2007, it was obvious that she had some facial deformities,” said her mom, Lynn Anto.

After months of testing, Grace was given a list of diagnoses, which included coronal suture craniosynostosis, a premature fusing of bones in the skull, resulting in restricted skull growth.

Because of her condition, Grace has had – and will continue to have – multiple stays at Texas Children’s. She has had surgery to correct the misalignment of her eyes, and multiple visits to a craniofacial orthodontist who placed an expander in her mouth. There are also future plans for jaw surgery and braces.

Grace admits the surgeries are tough, “but you just have to get through it,” she said. Both she and her mom understand that surgeries are a fact of life for her and that they must remain strong for each other.

Despite her medical challenges, Grace lives life to the fullest. She is quick to answer questions about her condition and doesn’t let much stop her. She is involved in competitive dance, choir, piano and theatre. Her favorite subjects in school are math and science. Wise beyond her years, Grace makes an effort to live each day by the motto she coined, “Don’t let fear take over happiness!”

As a Torch Relay participant, you can choose to join the Texas Children’s team, create your team or be an individual walker. Participants who raise $40 or more will receive a 2018 Torch Relay T-shirt, medal and drawstring bag as a thank you for participating. Participants who raise $5,000 or more will be invited to join the Torchbearer Club and attend the Torchbearer Weekend, which annually honors our top fundraisers.

For additional information, visit Torch-Relay.org or email Camille Landry lclandry@texaschildrens.org.

Physicians and scientists at Texas Children’s Hospital are known for treating patients with some of the most complex pediatric medical conditions. They’re also known for helping patients with some of the rarest.

From July 18 to 22, 20 individuals with Robinow syndrome and their families came to Houston from across North America for the 25th Robinow Syndrome Foundation Convention and Medical Conference, which was hosted by Texas Children’s Hospital. This group of patients represented a large cohort – about 10 percent – of all currently documented cases of Robinow syndrome, an ultra-rare disorder that affects the development of many parts of the body, usually resulting in distinctive craniofacial features, skeletal and genitourinary abnormalities, and in some cases heart defects.

Because there are several genes associated with Robinow, the physical characteristics and their severity can vary between individuals, affecting their health and quality of life in different ways. To gain a better understanding of specific health needs, and to gain new insight into the genetic reasons behind the variance in symptoms, Texas Children’s physicians held a special research day as part of the conference.

The multidisciplinary effort was two years in the making and driven by the research of Texas Children’s clinical geneticist Dr. V. Reid Sutton and co-investigator, Dr. Claudia Fonseca, adjunct assistant professor of molecular and human genetics at Baylor College of Medicine, whose work together on Robinow recently garnered a grant from the Eunice Kennedy Shriver National Institute of Child Health and Human Development, part of the National Institutes of Health.

“Our work with the Robinow Syndrome Foundation two years ago led to us being able to observe differences in individuals depending on which gene was causing the disorder,” said Sutton. “We were excited to host the event this year at Texas Children’s so we could follow up on initial studies, get new samples for research, and gather more detailed information on the differences in physical symptoms in the hope that we can improve care for these patients.”

Clinical and lab space was set aside specifically for the research day. Texas Children’s Child Life Department was on hand to direct families, assist with procedures, and alleviate any stress or anxiety with activities and fun ways to pass the time. For six hours, the patients and their families met individually with teams of physicians across six different disciplines, including urology, plastic surgery, psychology, endocrinology and genetics.

In addition to collecting new samples, Sutton also measured bone density in about half the patients using DEXA (dual-energy X-ray absorptiometry) scanning and high-resolution peripheral quantitative computed tomography at the Children’s Nutrition Research Center’s Body Composition Lab. Dr. Renata Maricevich from the Department of Plastic Surgery examined patients’ craniofacial symptoms, noting the health implications of structural deformities, particularly breathing and speech problems, and how surgical options could help. Additionally, a team of pediatric urology fellows and residents, led by Dr. Paul Austin, director of Texas Children’s Complex Urologic Reconstruction program and professor of Surgery for the Department of Urology at Baylor, observed patients’ genitourinary abnormalities, which can affect both appearance and function, particularly among males with Robinow.

“I anticipate the collaborative research conducted during the conference will culminate in a landmark reference document for the treatment of Robinow,” Austin said. “The specialty-specific data will help better characterize and delineate the phenotypic features based on the mutation present. So in the case of urology, we will have a better understanding of urologic issues associated with the various genetic forms of Robinow and will be able to develop more specialized treatments.”

In addition to possible surgical interventions, findings from the research day demonstrated that there could be potential non-surgical treatment options for Robinow patients as well. Dr. Shilpi Relan from pediatric endocrinology spoke to families about growth hormone therapies, as well as the possibility of testosterone therapy for males to help mitigate, or perhaps even avoid, some of the genitourinary symptoms. Experts at Texas Children’s also addressed the potential psychological repercussions of living with Robinow. Drs. Marni Axelrad and David Schwartz from Texas Children’s Clinical and Pediatric Health Psychology assessed cognitive and fine motor strengths and weaknesses, and created behavioral and emotional profiles for individual patients.

“Texas Children’s provides fabulous support for individuals living with syndromes like Robinow and their families,” Axelrad said. “Whether they need help for emotional, behavioral or cognitive challenges, our providers work together to better understand each patient and their needs. The information gathered at this conference has the potential to help patients understand how Robinow specifically affects them, as well as providing information about potentially helpful clinical assessment and intervention.”

The event was incredibly well received by the families who attended.

“The response from our families was very positive,” said Kimberly Kremeier, executive director of the Robinow Syndrome Foundation. “The physicians at Texas Children’s took time to explain in detail their findings and potential treatment plans. Our families were pleased to get answers, and some needing treatment now have a plan of care that hadn’t been available in their local communities. We welcome future collaboration with Texas Children’s in the future.”

The multidisciplinary research team will reconvene in the coming months to compile their findings from the research day, as well as presenting subsequent ideas for treatment and therapies, into manuscripts for joint publication.

“Ultimately we want to understand all the physical manifestations of Robinow in detail, as well as correlating the genetic basis in individual patients,” Sutton said. “Knowing why we’re seeing the physical differences is going to help us improve the care we can provide.”

October 4, 2018

According to a recent Physicians’ Choice survey conducted by Medscape, Texas Children’s Hospital was recognized as one of the nation’s top three hospitals for the treatment of pediatric conditions.

Between May 17 and August 13, Medscape surveyed more than 11,000 U.S. physicians to get their opinions on which hospitals they would send family members to for specialty care. Texas Children’s ranked in the top three for pediatric care along with Boston Children’s Hospital and Children’s Hospital of Philadelphia.

Medscape identified 10 clinical conditions or procedures and asked, “Suppose you or someone in your family were diagnosed with a complex or difficult case of (condition). Assuming no barriers to treatment at the hospital you prefer, what hospital would you choose for treatment?”

Based on this survey, doctors felt the most important part of choosing a hospital was expertise followed by a hospital’s reputation among other physicians. Additional factors in choosing a hospital included: having leading technology available, low error and infection rates, and treatment and studies published in respected medical journals.

“We are honored that our hospital was recognized by physicians as one of the best pediatric hospitals in the nation,” said Texas Children’s President and CEO Mark Wallace. “This is a testament to the exceptional quality of work we do across our system every day, and indicative of our hospital’s reputation in pediatric care.”

October 2, 2018

The Legacy of Motown Gala on September 29 at Revention Music Center topped the philanthropy charts, raising more than $83 million and making it the highest-grossing fundraising gala in Texas. The event was underwritten by The Lester & Sue Smith Foundation, whose commitment to match funds raised inspired others to generously give.

But the biggest hit of the night was the announcement of the naming of Texas Children’s latest expansion project – the Lester and Sue Smith Legacy Tower. The Smiths, who have dedicated their private wealth for public good, generously pledged $50 million to Texas Children’s to support Legacy Tower, the hospital’s new home for heart, intensive care and surgery, as well as to support patient care and research at Texas Children’s Cancer Center.

“I am incredibly grateful to Lester and Sue for this transformational gift,” said Mark Wallace, president and CEO of Texas Children’s. “Their unwavering commitment to our patients and families over the years is unmatched, and this is another shining example of their extraordinary generosity and compassionate care for others.”

Drawing from a place of gratitude for the life-saving care Lester received during his battles with cancer, the dynamic couple has dedicated more than $150 million to support research at numerous institutions including Texas Children’s, Baylor College of Medicine and Harris Health System. Following the Disco Legends event in 2012, which benefitted Texas Children’s Cancer Center, the clinic was named in their honor as the Lester and Sue Smith Clinic.

“Giving to others is our guiding philosophy,” said Lester and Sue Smith. “There is nothing more precious than a child, and we hope this gift will help support the incomparable patient care for which the hospital is known. It is truly our honor to leave a legacy of support for generations to come at Texas Children’s.”

Legacy Tower adds 640,000 square feet to Texas Children’s sprawling Texas Medical Center campus. In May, the first phase of the tower opened with six technologically advanced operating rooms for neurosurgery, orthopedics, plastic surgery, transplant and pediatric surgery – one with intraoperative MRI – and 84 ICU beds, including dedicated surgical, neurological and transitional ICU rooms. The second phase of Legacy Tower opened last week and serves as the new home for Texas Children’s Heart Center®, ranked No. 1 nationally in pediatric cardiology and heart surgery by U.S. News & World Report. This milestone will help Texas Children’s continue to provide the highest-quality care possible to patients and families, particularly those children who are critically ill.

To learn more visit legacytower.org.

Texas Children’s Cancer Center is consistently ranked as one of the best cancer programs in the nation by U.S. News & World Report. It is the largest pediatric cancer center in the nation and the destination for children from more than 35 states and 26 countries to receive individualized, state-of-the-art cancer care. Additionally, more than 91,000 outpatient visits occur in the Lester and Sue Smith Clinic each year.

To learn more visit texaschildrens.org/cancer.

On September 21, Texas Children’s Hospital hosted His Excellency Mokgweetsi E.K. Masisi, president of Botswana, along with his family and members of his delegation. President Masisi met with clinical and executive leaders at Texas Children’s for a luncheon and tour to discuss pressing health care issues facing Botswana. The gathering also served as an opportunity to assess the progress we have made together to help combat pediatric illnesses in his country, including HIV/AIDS, cancer and hematologic diseases.

“I must begin by giving a very direct word of appreciation and thanks to Texas Children’s and Bristol-Myers Squibb, for you might not fully comprehend what you did for a whole nation state and civilization,” President Masisi said during his opening remarks at the luncheon held in Peterkin Board Room. “The government and people of Botswana will remain forever grateful for your generous response to our urgent appeal during literally our darkest and most perilous hour at the height of the HIV/AIDS pandemic. When we thought all else was lost, your generosity, your humanity, your assistance among others brought smiles to many of our families, and the nation at large.”

With the generous support of Bristol-Myers Squibb, Baylor College of Medicine International Pediatric AIDS Initiative at Texas Children’s Hospital (BIPAI) began working in Botswana in 2001. They started out small, training doctors and nurses, and testing and treating children with HIV. They then went big in 2003, building the Botswana-Baylor Children’s Clinical Centre of Excellence, a Centre of Excellence where state-of-the-art HIV/AIDs care is administered to children.

“It’s been a blessing to be in partnership with the Ministry of Health, and with the government of Botswana in absolutely everything we’ve done,” said Dr. Mark W. Kline, president and founder of BIPAI, physician-in-chief of Texas Children’s Hospital and chair of the Department of Pediatrics at Baylor College of Medicine. “It really has changed the world for hundreds of thousands of children across the African continent and around the world.”

The goal of Bristol-Myers Squibb, Texas Children’s, BIPAI and the Ministries of Health, Kline explained, is to implement the same principles that have been applied to HIV/AIDS to the treatment of cancer among African children, who for decades have not received the life-saving therapy they need and deserve.

In the United States, where there are 15,000 cases of pediatric cancer a year, 80 percent of children survive and most have a very good quality of life, statistics show. In Sub-Saharan Africa, of the more than 100,000 children who develop pediatric cancer each year, 90 percent die.

View photos below from His Excellency Mokgweetsi E.K. Masisi, president of Botswana’s visit.

Dr. David Poplack, director of Global HOPE (Hematology-Oncology Pediatric Excellence) and associate director of Texas Children’s Cancer and Hematology Centers, said the discrepancy and inequity these statistics represent are intolerable, and are why the Global HOPE cancer program – a partnership between Texas Children’s Hospital, BIPAI and Bristol-Myers Squibb Foundation, along with the Ministries of Health in six sub-Saharan African countries, including Botswana – are working to correct it.

“Africa is now poised to make major advances in the diagnosis and treatment of cancer,” Poplack said. “Based on our experience in the United States, we know what is possible, and we know what it takes to achieve success. We believe Botswana now has a similar opportunity to dramatically improve childhood cancer treatment and care; not only in Botswana, but across the continent.”

To help accomplish this, Global HOPE is working with the Ministry of Health to establish a Center of Excellence in pediatric care in Botswana as well as a pediatric hematology/oncology fellowship training program that will make Botswana a hub for training across Southern Africa. Centers of Excellence also are being established in Malawi and Uganda as part of the Global HOPE program.

Global HOPE was created in February 2017 as a $100 million initiative to create an innovative pediatric hematology-oncology treatment network in sub-Saharan Africa. The program already is making great strides, treating more than 1,000 patients, training 369 health care professionals, and graduating the first class of physician fellows enrolled in the first Pediatric Hematology Oncology Fellowship Program in East Africa.

“Our relationship with Botswana has spanned 15 years, a long time, and was the inception point of Texas Children’s global work in Africa,” said President and CEO Mark Wallace. “We look forward to continuing our extraordinary partnership for many, many years to come and know that your focus on innovation and continuing to create a higher standard of excellence for health care for your country will impact the quality of life for the people of Botswana for generations to come.”

Discussions about these efforts continued throughout the evening at an event at the St. Regis Hotel where leaders from Houston, throughout the United States and Botswana gathered to celebrate the incredible work underway.

Click here for more information on Global HOPE.