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.


Dr. Jenny Despotovic, director of the Immune Hematology program at the Texas Children’s Hematology Center, served as editor of the recently published textbook Immune Hematology: Diagnosis and Management of Autoimmune Cytopenias. The textbook provides a concise yet comprehensive overview of the most common autoimmune cytopenias affecting adults and children.

This is the first textbook dedicated exclusively to immune cytopenias. Despotovic worked with several of her colleagues to develop, write and edit the content in the textbook, which had over 2,000 downloads in the first two months since publication.

The book is divided into four sections, each of which focuses on a major autoimmune cytopenia. The first section features background, pathophysiology, presentation, evaluation, and treatment strategies for immune thrombocytopenia (ITP), the most common cause of antibody-mediated platelet destruction. The second section reviews common forms and treatment strategies for autoimmune hemolytic anemia (AIHA), including a chapter dedicated specifically to Evans Syndrome. The third section comprehensively reviews the pathophysiology, diagnosis and current management approaches to thrombotic thrombocytopenic purpura (TTP), a potentially life-threatening autoimmune syndrome. The book concludes with a final section on autoimmune neutropenia. Each section includes a review of common underlying systemic autoimmune conditions and immune deficiency syndromes that can accompany or cause autoimmune cytopenias.

“It was a privilege to be part of the creation of this very important textbook,” Despotovic said. “It is an important addition to the body of literature available to guide providers in the diagnosis and management of these challenging disorders, and will hopefully positively impact the care of patients with these complex conditions.”

Those in the Hematology Center who contributed to the effort include:
Dr. Alicia Chang
Dr. Clay Cohen
Dr. Jenny Despotovic
Dr. Amanda Grimes
Dr. Taylor Olmsted Kim
Dr. Jacquelyn Powers
Dr. Shawki Qasim
Dr. Sarah Sartain

October 2, 2018

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.

September 26, 2018

Sickle cell disease affects more than 100,000 Americans and millions more worldwide. This red blood cell disorder can be treated, but a widely available cure has yet to be found. Texas Children’s hematologist and Assistant Professor of Pediatrics Dr. Vivien Sheehan has recently developed a new sickle cell treatment based on her laboratory research. Sheehan has found that metformin, a commonly used medication for diabetes, has the ability to induce fetal hemoglobin in developing red blood cells.

Since higher levels of fetal hemoglobin reduce sickling in red blood cells of patients with sickle cell disease, the medication could potentially be useful in reducing the severity of sickle cell complications in patients. It also can be taken with another drug that increases fetal hemoglobin, hydroxyurea, to get even more clinical benefit.

Sheehan has been a part of Texas Children’s Cancer Center faculty since 2012, working tirelessly toward advancing sickle cell treatments. During a cancer related conference she attended, it was mentioned that the drug metformin could help with cancer by increasing amounts of proteins that her research showed increased fetal hemoglobin. This led Sheehan to wonder if the drug would increase fetal hemoglobin in cells from patients with sickle cell disease, and sure enough, it did.

“Because metformin is so well studied, so safe, there are millions of people literally taking it,” Sheehan said. “I then went to my Institutional Review Board (IRB) and asked if I could start a clinical trial of metformin in sickle cell patients since it was known to be safe, and wouldn’t cause hypoglycemia even in non-diabetics.”

With funding from Pfizer, in 2016 Sheehan and other researchers were able to launch a clinical trial that is currently assessing the effectiveness of metformin to make fetal hemoglobin in patients with sickle cell cared for here at Texas Children’s Hospital Hematology Center. Pfizer is a world leader in global medical advancement that provides medical research grants and scholarships for new drug development and the latest in cutting edge technology and applications. This not only led to developing the clinical trial, but also led to other acknowledgements and funding such as Sheehan’s Best of ASH recognition, given by the American Society of Hematology at the 2016 annual meeting.

“Her passion truly exudes from her and so a lot of times when you get into conversation with her, you always leave so much more educated because she’s letting you know the newest things that she has learned,” said nurse practitioner Precious Uwaezuoke. “She’s letting you know how her research studies are going. Thus, hearing her speak is always so rewarding and fun. I truly have this huge respect for her just because of how passionate she is about Sickle Cell Disease and our kids.”

Uwaezuoke works closely with Sheehan and the research team, as well as patients, and is responsible for helping to determine who may be good candidates for clinical trials. Fighting sickle cell herself, she knows that at times handling the disease can be very difficult; so she verses how important research is to getting closer to finding a cure for the disease.

“This is a big deal because having sickle cell is not easy. It affects way too many people for us to only have developed one therapy 20 years ago,” Uwaezuoke said. “To be able to see something come to fruition like this because somebody had a dream, and chased it and didn’t let it fall to the wayside is exciting. Anytime somebody wins after trying a therapy and it actually helps them, I feel like I won as well.”

Following the clinical trial, the next step will be commercialization. Sheehan says that the progress is very exhilarating and that it is amazing for a process of this magnitude to have been executed in just four years.

“Usually it takes around 15 years,” Sheehan said. “That’s the average time it takes to develop a drug from the bench to the bedside, and that’s a pharmaceutical company with all of their staff. So now we’re in 2018, we’re almost done with the first arm of our clinical trial, patients taking both hydroxyurea and metformin, and can now analyze and publish our results.”

Overall, preliminary research results show fetal hemoglobin induction, the repair of blood vessels, which is so important to help prevent complications of stroke, retinopathy, renal failure, and the other issues that cause a lot of damage or even death to some patients with sickle cell disease.

“Ultimately, I needed to determine whether patients were having more pain crises or less pain crises on metformin and whether they’re needing more transfusions or fewer transfusions”, Sheehan said. “So I compared the time period before they started the drug to the time period on metformin and they were having fewer pain crises and they were needing fewer transfusions.”

Sheehan says that research is key to improving the use of the tools that we already have. She is now looking for a few more participants to complete the second arm of the clinical trial, patients not on hydroxyurea, and also add adult patients up to the age of 40 years. Sheehan has formed a collaboration with University of Texas Health Sciences Center’s Comprehensive Sickle Cell Center and Dr. Juneja and Dr. Idowu to be able to enroll these patients.

“It’s the only way to advance in a meaningful way. You can make incremental advances just by improving access to care or use of the drug, but you’re not going to make a big, significant change without research. Those with Sickle Cell are doing better through childhood, but they’re still not living longer in adulthood and I think it’s the lack of therapies that will continue to work in our older patients and I feel like this is going to be one of them and I want to see it improve life spans and not just number of years, but health.”

September 18, 2018

As part of National Childhood Cancer Awareness Month, Texas Children’s Bone Marrow Transplant Unit (BMT) was transformed for a few hours last week into a full-fledged parade route – music, costumes and all.

The Lace Up 4 Life event – hosted in part by Be The Match, which manages the largest and most diverse marrow registry in the world – began in the inpatient portion of the unit with patients dressed in super hero capes and costumes parading downs the halls with staff members by their side and cheering them on.

“We enjoy this event every year,” said Dr. Robert Krance, director of the Pediatric Bone Marrow Transplant (BMT)/Stem Cell Transplant Program at Texas Children’s Hospital. “It’s a time for us to celebrate the lives of those who have been saved by a bone marrow transplant, and to remember those who are still racing to find a match.”

After several laps around the inpatient unit, patients retired to their rooms while the parade continued to the outpatient portion of the unit, pausing for a special announcement from Hope Guidry-Groves with Be The Match.

“Today, 16-year-old Jacob Bustamente is going to meet his donor, Heather Wallace, for the very first time,” Guidry-Groves said. “We are so fortunate to be a part of an organization that makes moments like these possible.”

Jacob is a patient at Texas Children’s and so is Wallace’s son. When they first laid eyes on one another they quickly embraced in a long, emotional hug.

“Thank you so much,” Bustamente said. “You are such a blessing.”

Wallace told the audience that everyone should join the marrow registry. “There’s no reason not to,” she said.

Texas Children’s Cancer Center has a premier bone marrow and stem cell transplantation program. Our state-of-the-art, 15-bed inpatient transplant unit is among the largest of its kind in the Southwestern United States and focuses exclusively on transplantation. The Bone Marrow Transplant Clinic performs over 100 transplants per year.

Texas Children’s works closely with Be The Match to find donors for our patients. Learn how marrow donation works, the steps of a patient transplant, steps of donation, and factors that can impact the likelihood of finding a match here. A marrow transplant may be someone’s only hope for a cure.

September 10, 2018

Texas Children’s Cancer Center showed their “Going Gold” spirit last week in honor of National Childhood Cancer Awareness month.

Patients, families and Texas Children’s Cancer Center employees wore everything gold, the official symbolic color for childhood cancer awareness, and participated in Going Gold parades, ribbon tying events and other festivities at Texas Children’s Hospital in the Medical Center, Texas Children’s Hospital West Campus, Texas Children’s Hospital The Woodlands and Vannie Cook Children’s Cancer and Hematology Clinic in McAllen, Texas.

View a photo gallery from the events below.

Dressed in bright gold shirts and donned with gold stars, hats, necklaces, bracelets and other festive gear, participants marched for the worthy cause. Vendors from organizations such as the Periwinkle Foundation were present at all three events offering additional support to patients and families. And, employees with the Cancer Center spoke about how important the celebration is to them, patients, families and anyone and everyone interested in beating this disease.

“We are thrilled to have the opportunity to have everyone here,” Dr. Susan Blaney, director of Texas Children’s Cancer and Hematology Centers, said to a packed room on the fourth floor of the Pavilion for Women before the parade at Texas Children’s Medical Center campus. “As you know, there have been significant advancements in oncology, making what was once a fatal diagnosis survivable here in the United States. However, there is still much more work that needs to be done, which is why we are here today.”

Dr. Ricardo Flores, clinical director of the Cancer and Hematology Centers at Texas Children’s Hospital The Woodlands, agreed and pointed out that every hour a child is diagnosed with cancer.

“We have made great enhancements, but still need a cure,” he said.

Dr. Deborah Shardy, associate clinical director of the Cancer and Hematology Centers at Texas Children’s Hospital West Campus, said those we honor and remember this month are the very people who inspire us to continue to look for a cure.

“Texas Children’s Cancer Center was inspired to “Go Gold” several years ago by a young patient, Faris D. Virani, who was perplexed as to why he didn’t see as much gold in September as he saw other colors in months representing other diseases,” she said. “Motivated by Faris’ concern, each year the Cancer Center has increased their level of “gold-ness.”

Faris’ mother, Asha Virani, said she knows her son, who lost his battle with Ewing’s sarcoma, is smiling because of all of the gold that is being shown around Texas Children’s in September.

By the end of this year, it is estimated that over 15,700 children nationwide will be diagnosed with a form of pediatric cancer. Please help spread the message that Texas Children’s Cancer Center is leading the battle against pediatric cancer. To learn more about Texas Children’s Cancer Center, please visit texaschildrens.org/cancer.