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Neurofibromatosis patient moves ahead Emily Parker has neurofibromatosis type 1 (NF 1), a genetic disorder that ranges in severity from almost imperceptible to major. As such disorders go, NF 1 is common, occurring in about 1 in 3,500 births. The two other forms of NF — neurofibromatosis 2 and shwannomatosis — are much rarer. Emily was diagnosed at the age of 9 months after she broke her left leg and it didn’t heal. On advice from her doctor, her family took her to the orthopedic department at the Texas Scottish Rite Hospital for Children in Dallas, where she is still seen from time to time. Emily Parker with her dad Charles

For Emily, this early diagnosis began a lifetime of medical appointments and treatments for NF, which is chronic and can be debilitating. Now a resident of Sugar Land, Texas, Emily’s care is managed by John Slopis, M.D., associate professor in the Department of Neuro-Oncology and medical director of the Neurofibromatosis Program at MD Anderson. After a leg break, Emily often wore a Llizarov, a circular brace-like framework, on her leg to keep it stable during the healing process. At age 10, another broken leg was mended and her Llizarov was removed. However, the leg broke again and her doctors began to discuss possible amputation.

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Learning to live with NF Her mother was at first reluctant, her dad was neutral, but Emily was ready to consider it. She received counseling at MD Anderson and at Scottish Rite Hospital, and made the decision to amputate her left leg below the knee. “I don’t remember a time when I didn’t have NF,” Emily says. “NF, along with a brace, a cast or a Llizarov, has always been a part of my life. When the doctors talked to me about amputation, I was ready to be done with the pain – I couldn’t keep up with other kids.”

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Neurofibromatosis continued from page 1

Emily takes her disease on the road Throughout her young life, Emily has been an advocate for NF, and has spoken to the Texas Legislature about an NF bill to fund research for the disease. She has also helped with fundraising for the disease. “I’ve met everyone who has anything to do with NF,” she says.

This year for the first time, Emily will expand her pedal partner role from representing and encouraging the RAAM team to being a part of the team. She is riding along on the race as the RV manager, making sure that all the supplies are in stock, and is part of a team of 11 who will travel from the West Coast to Annapolis, Md. Her dad will be with the team as well, serving his third year as crew chief. “It’s nice to know that somebody out there is trying to find a cure for your disease,” Emily says. After all these years, Emily counts Slopis as a good buddy. “He’s awesome and really nice. He knows what he’s talking about, too.” Through the MD Anderson Children’s Cancer Hospital, Emily has attended Camp Star Trails, Camp A.O.K. and has also been a part of the Children’s Cancer Hospital ski trip to Park City, Utah. Emily and Charles Parker join Kirk Gentle, left, in Annapolis, Md. to celebrate his completion of the 2011 Race Across America journey.


Children’s Cancer Hospital • Summer 2011

The Cheniere Energy RAAM team visited the Children’s Cancer Hospital to celebrate Christmas in July. Pictured left to right are Pat Outtrim, Cheniere Energy Vice President Regulatory Affairs; Eugenie Kleinerman, M.D., division head, Children’s Cancer Hospital; Kirk Gentle, insurance agent with Marsh & McLennan Agency and lead cyclist in the Team Making Cancer History for RAAM; Emily Parker, pedal partner for Gentle’s team; and John Slopis, M.D., medical director of the NF Program at MD Anderson.

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Since 2005, Emily has been the pedal partner for the Cheniere Energy Making Cancer History Race Across America (RAAM) cycling team. This 3,000-mile, cross-country bike ride is one of the most challenging endurance races in the world. It’s a symbolic demonstration of how teamwork, research, persistence and ingenuity can triumph over obstacles such as neurofibromatosis, cancer and other life-threatening diseases. Funds raised by the Cheniere team return to MD Anderson and some of these monies are directed toward pediatric NF research.

NF treatment at the Children’s Cancer Hospital The Children’s Cancer Hospital is one of the few hospitals in the country specializing in the care of children with neurofibromatosis, who may also suffer from pediatric brain tumors as well as peripheral nerve and spinal tumors. Treatments include chemotherapy, surgery and radiation, or any combination of these. And because many pediatric NF patients experience learning disabilities, the Children’s Cancer Hospital has developed a special intervention program to assist these patients with educational support needs. Although some forms of the disease are genetic, about half the cases of NF occur spontaneously, Slopis says. As Emily reaches adulthood, she will receive treatment at the Neurofibromatosis Clinic, one of the few clinics in the nation dedicated to the long-term care of NF patients, who are subject to headaches, epilepsy, spinal deformities and cardiovascular problems in addition to tumors.

Neurofibromatosis Many people have heard of the • genetic condition neurofibromatosis, but few can explain what this is.


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It is common, yet baffling: occurring in about one in 2,500 live births, but with symptoms that vary from minimal to profound and debilitating. And it’s worthy of study, say cancer and genetic experts, because the DNA mutations that cause its three types may yield crucial information about how cancer develops — and new approaches to cancer treatment.

What is neurofibromatosis? Neurofibromatosis is a name given to three different genetic conditions: neurofibromatosis 1 (NF 1) neurofibromatosis 2 (NF 2) and multiple schwannomatosis. These conditions are all called neurofibromatosis or NF because they all cause tumors to grow on nerves. NF 1 causes a variety of problems: tumors of the nerves from the spine to any extremity, including the skin; tumors of nerves in some organs and tumors of the optic nerves (from the eyes to the brain). NF 1 is also associated with other complications, including bone tumors, spinal scoliosis, high blood pressure, short stature (limited growth in children), brain tumors and learning disabilities. The genetic mutation is found on chromosome 17 and is inherited from either mom or dad. In half of the cases, the person with NF 1 will be the first person in the family, but can then pass on the gene for NF 1 to his or her children. People with NF 1 have a great variety of different patterns of symptoms.

What about NF 2? NF 2 is also genetic, passed down in the same pattern as NF 1, but the genetic mutation is on a different chromosome — chromosome 22. The disorder is quite different from NF 1. In NF 2, tumors grow on any nerve from the spine or brainstem. The disorder is diagnosed clinically by loss of hearing or dizziness in the patient due to growth of tumors on the acoustic nerves (these are called eighth nerve schwannomas). Tumors can grow on other structures in the spinal cord (these are called ependymomas) or on the bone of the skull (these are called meningiomas). Tumors of the spine can be very serious. Most people with NF 2 have very similar patterns of problems. NF 2 does not cause the other complications seen in NF 1.

And the third type of neurofibromatosis? It’s called multiple schwannomatosis. It looks a lot like NF 2, but tumors of the nerves never occur in the brain or brain stem or anywhere above the neck. We know there is one gene mutation that causes it in about a third of cases —

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John Slopis, M.D., associate professor in the Department of Neuro-Oncology and medical director of the Neurofibromatosis Program at MD Anderson, explains the basics of the disease. this gene mutation is called INI-1, and it was only recently discovered. The other two-thirds of cases must be caused by gene mutations, but these have not yet been identified. This condition is best known because it causes patients to experience a great deal of nerve-related pain.

What is the connection with cancer or cancer treatment? Most of the tumors of NF are benign tumors that grow slowly and do not become malignant. This means that these tumors are a lot like normal tissue, but when they grow in the wrong place, the mass of the tumor causes problems, like pressure on the nerves to the ear or eye, spinal cord, brain stem or brain. Sometimes the tumors cause pain. Only NF 1 tumors are known to transform into malignant cancers called malignant peripheral nerve sheath tumors. These are very serious cancers. The connection with cancer is that many (if not most) cancers result from mutations of normal DNA. If we can work out the way a mutation changes the growth of a normal tissue into a tumor or cancer, we can find clues to help cure it.

What types of research are you conducting in the MD Anderson Neurofibromatosis Clinic? We’re evaluating the use of positive emission tomography/ computed tomography imaging, both of which provide three-dimensional images of functional processes in the body, to identify tumors in the early stages of malignant transformation. There’s also clinical research, like our ongoing collaboration with oncologists at Johns Hopkins Hospital to determine how radical surgery must be to achieve optimal tumor control for malignant peripheral sheath tumors. We’re working on whole-gene sequencing of the NF 1 gene to identify specific mutations that predict the development of malignancy in a given patient with NF. And we’re attempting to characterize the tumor genetics and signaling mechanisms of NF 1 and NF 2 in hopes of discovering more targeted systemic therapies, which home in on the condition’s distinct biological pathways.

The University of Texas MD Anderson Cancer Center • Division of Pediatrics


Clinic plays important role in maintaining health of childhood cancer survivors Megan Evans, an 18-year-old senior at St. Pius X High School in Houston, lives her life at full speed. When talking about her daughter’s hobbies, her mother, Maureen, says with a quip, “Are you kidding me? I can’t keep up with this kid!” She’s a member of the varsity cheerleading team, swim team, student cabinet, National Honor Society and science club, as well as co-editor of her school’s yearbook — all while preparing for graduation. As a survivor of Ewing’s sarcoma, a rare bone cancer, Evans takes steps to make sure that she can continue to lead an active life for many years to come. She maintains a healthy lifestyle and visits the Childhood Cancer Survivor Clinic at MD Anderson’s Children’s Cancer Hospital for long-term follow-up care.

Benchmark guidelines for care

Improved treatment and therapies, like those available at the MD Anderson Children’s Cancer Hospital, have increased the survival rate of children with cancer. However, these treatments and therapies can put childhood cancer survivors at risk of developing late effects — health problems that appear months or years after treatment. The most common late effects in childhood cancer survivors involve growth, the heart, fertility, the thyroid, second cancers and cognitive development. To address late effects, the Children’s Oncology Group (COG) developed national guidelines – Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers, which are used at the Childhood Cancer Survivor Clinic. Organized by cancer treatments, the COG guidelines use the therapeutic agents, which determine the potential late effects and risk factors survivors face. Each section also includes screenings and health counseling topics that address the late effects and risks of each treatment. During her regular visit to the Childhood Cancer Survivor Clinic when Evans was 12, an abnormal chest X-ray led to additional scans and tests to rule out a recurrence of her cancer. Clear tests and a positive follow-up visit put Evans’ and her mother’s fears to rest. Evans monitors for late effects by visiting the clinic annually for lab work and chest X-rays to check for metastases. This screening is important because the lungs are one of the most common sites for secondary tumors in Ewing’s sarcoma survivors. Prior to the COG guidelines being published in 2003, late effects monitoring was largely based on the experience of each physician and his or her knowledge of published literature. For the more than 250,000 childhood cancer survivors in the United States, these guidelines help to standardize and enhance follow-up care, as well as increase awareness of potential late effects.


Children’s Cancer Hospital • Summer 2011

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By Lindsey Garner

Ahead of the curve

Most childhood cancer survivors eventually return to their primary care physicians for routine care after completing treatment. Developing an individualized, long-term, follow-up plan to monitor for late effects is extremely beneficial to primary care physicians who might not be as familiar with possible problems as oncologists. Additionally, MD Anderson recommends yearly long-term, follow-up in the Childhood Cancer Survivor Clinic or other clinic familiar with the late effects of cancer. “I would say that we’re ahead of the curve when it comes to survivorship,” says Joann Ater, M.D., below, professor in the Department of Pediatrics. “The Children’s Cancer Hospital has a long history of providing a clinic for survivors — more than 30 years.” In addition to monitoring for late effects, the Childhood Cancer Survivor Clinic is also a “good coordinating clinic to help survivors gain access to all the services they need within the institution,” Ater says. Evans benefited from the clinic’s coordinated efforts when she wanted to lifeguard at a local pool over summer breaks from school. Due to her skin’s sensitivity to the sun, the clinic referred her to an MD Anderson dermatologist. With regular clear skin checks, she has been a lifeguard for the past three summers.

Support to move forward

In addition to the nutritional, clinical and psychological support services provided, the Childhood Cancer Survivor Clinic also offers survivors educational and vocational support. “Each time we visit the clinic, Megan is always asked about what her aspirations are for the future,” Maureen says. Inspired by her oncologist Cynthia Herzog, M.D., professor in the Department of Pediatrics, Evans wants to pursue a career in pediatric oncology. “I really love kids and making a difference in their lives,” Evans says. “With pediatric oncology, I can relate to them and have that connection.” To help Evans achieve her goal, the Childhood Cancer Survivor Clinic provided her with information on scholarships available to childhood cancer survivors through the Children’s Art Project and Children’s Cancer Hospital. She is applying for several scholarships that would help her while studying biomedical sciences at Texas A&M University beginning this fall.

Celebrate and educate In honor of National Cancer Survivors Day, the Children’s Cancer Hospital will host a celebration on Sept. 10 at the John P. McGovern Museum of Health & Medical Science. The festivities will include museum tours, health information and refreshments. An art installation created by Children’s Cancer Hospital patients and designed by artistin-residence Ian Cion will also be unveiled.

DePinho next MD Anderson president A worldwide search for the fourth full-time president of MD Anderson has ended with the appointment of Ronald A. DePinho, M.D., by The University of Texas System Board of Regents. He will be known as presidentdesignate until he officially assumes the position on Sept. 1. In accepting this post, DePinho leaves his positions as director of the Belfer Institute for Applied Cancer Science at the Dana-Farber Cancer Institute and professor of medicine (genetics) at Harvard Medical School, both in Boston. He is a member of the Institute of Medicine and fellow of the American Academy of Arts and Sciences. He also has held numerous faculty positions at the Albert Einstein College of Medicine in New York. DePinho received a bachelor’s degree in biological sciences from Fordham College and his medical degree with distinction in microbiology and immunology from the Albert Einstein College of Medicine. His research interests are in the genetic aspects of cancer and the translation of this knowledge into clinical applications. He has authored more than 250 articles in peer-reviewed scientific journals.

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Eminent researcher coming from Dana-Farber, Harvard Medical School

Looking for answers DePinho’s interest in research grew from the reality that there were too many unanswered questions — too many “why’s” of disease. He says his efforts to find a cure for cancer are in honor of his father, who died of colorectal cancer at the same time DePinho became a professor at Harvard. “The complexity of cancer is astounding and there’s a staggering unmet need for answers,” he told Fordham magazine in fall 2003. “I decided to shift gears from being a clinician treating patients to learning and doing basic science because I got frustrated telling patients and their families, ‘We just don’t know enough right now.’” While shifting his efforts to understanding the genetic basis of cancer, a cardinal feature of his research program has been to convert basic and clinical knowledge into advances for patients. “Ron DePinho is a visionary and energetic leader who is committed to achieving MD Anderson’s mission,” says John Mendelsohn, M.D., who has served as president for the past 15 years. “I’m confident that under his leadership, we will continue to pioneer advances in targeted cancer therapies.”

‘Philanthropy, seed grants and small donations … it’s all about leverage.’ • • • •

By Dennis Hughes, M.D., Ph.D.

The current funding environment is really tough for researchers, especially junior scientists and those who are trying to get new ideas started. With the current political climate in Washington, D.C., and recent budget battles, it seems unlikely that it will get easier to acquire grants for new ideas in the near future. That’s why the generosity of philanthropic donors is so vital.

How grant applications work

Putting a face on a grant For me this was very concrete. Locally, the Jori Zemel Foundation wished to fund projects in bone cancer research and gave me resources to pay for a postdoctoral fellow to work in my laboratory for two years. This donation was more than $100,000. Based on the lab work completed by this fellow, we successfully competed for a large grant, my first R01 award from the National Institutes of Health. This grant provides MD Anderson with more than $1.6 million dollars over five years. That amounts to a return on investment of more than 16-fold in just a few years. • • • • • • • • • • •

When scientists apply for a grant, the reviewers want to understand why the scientist thinks this project is a good idea, what evidence there is that the project will show something important, and how confident they should be that the experiments the scientist proposes will work. All of these needs amount to one huge requirement: for a scientist to get a grant funded with any new idea requires preliminary data showing that the idea is a good one. The seed money, philanthropy and small donations are the essential capitol that allows scientists to generate that preliminary data that will make a larger grant application successful. Think of a scientist as an entrepreneur. One person may have a great idea or product, but must then make a prototype (preliminary data) to show that the idea works, then sell that product (publish some preliminary data) to get the capitol (grants) that will allow the expanded production.

The Zemel Foundation was so pleased with the results that they funded another postdoctoral fellow with a different project for a similar amount. That fellow’s research formed the basis of a second R01 grant currently before the National Cancer Institute, which should yield a similar amount of money. Thus a small, dedicated group that wanted to make a difference in bone cancer research has leveraged their resources, through my lab, to get a substantial grant focused on the disease that they care about most. It’s amazing what a committed group of people can accomplish by leveraging their donations to support new ideas. The University of Texas MD Anderson Cancer Center • Division of Pediatrics


Less is sometimes more Following his surgeries, Kobe received a dose of radioactive iodine (RAI) in February 2009 to destroy any remaining thyroid tissue and to fight the cancerous cells in his body. RAI is prescribed for patients who have microscopic residual disease, distant metastases that concentrate RAI and/or a high risk of recurrence. However, this was not always the case. “The standard response for thyroid cancer treatment in all cases used to be surgery to remove the thyroid and neck disease,

Kobe was diagnosed in October 2008 with papillary thyroid cancer and a brain tumor in Kansas City, Mo., where physicians had never seen a case like his.  The treatment options presented to his parents, Brady and Brooke, were sparse and discouraging. “We spent the day after his diagnosis praying for God’s direction,” Brooke says.  A referral to the Pediatric Endocrine Tumor Program at MD Anderson’s Children’s Cancer Hospital answered their prayers. A few days later, Kobe and his parents made the first of many trips to Houston.

Specialized care Once at the Children’s Cancer Hospital, Kobe came under the care of Steven Waguespack, M.D., associate professor in the Department of Endocrine Neoplasia and Hormonal Disorders and the Division of Pediatrics, and an expert on endocrine tumors. “We have one of the largest, if not the largest, practices for pediatric thyroid cancer in the nation,” Waguespack says. “Because these tumors are so rare, children benefit from receiving treatment at a specialty center like ours — where multiple specialists with extensive experience in managing such cancers can treat the patient. It potentially avoids long-term side effects and consequences from possible overzealous or inadequate treatment.”    Scans and biopsies showed that Kobe’s cancer had metastasized to other locations in his body in addition to his brain, including his right adrenal gland, lungs, kidneys, hips and femurs. All of these are rare metastases, excluding the lungs.  Over three months, Kobe had three surgeries to remove his right adrenal gland, the brain tumor and the diseased thyroid and lymph nodes in his neck.


Children’s Cancer Hospital • Summer 2011

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Pediatric endocrine tumor program provides treatment for rare pediatric cancer

followed by a dose of radioactive iodine,” Waguespack says. “Now, we incorporate the results from a diagnostic thyroid scan and tumor marker data to provide a more individualized approach to care. And, we always enter into careful discussion with the child’s family about whether or not to move forward with using radioactive iodine.” Recently, published data have reaffirmed the excellent prognosis when thyroid cancer is diagnosed during childhood.  “The most recent data and our collective experience reassures me that children are unlikely to die from their thyroid cancer during childhood, even if metastatic at presentation,” Waguespack says. “Given the concern about the late effects of overzealous prescription of RAI for a disease that is not life-threatening, we now administer RAI only after carefully weighing the risks and benefits of treatment, the aggressiveness of the disease and its expected response to therapy.” Anita Ying, M.D., assistant professor in the Department of Endocrine Neoplasia and Hormonal Disorders, and Steven Waguespack, M.D., prepare to visit a patient in the Robin Bush Clinic at the Children’s Cancer Hospital.

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Pediatric thyroid cancer is a rare disease with an incidence rate of one case diagnosed annually per million children. Kobe Black, diagnosed with pediatric thyroid cancer at the age of 4, was that one-in-a-million case.

Careful consideration for administering RAI is especially important since high doses of RAI may be associated with an increased risk for secondary cancers.  Diagnostic studies six months later showed that Kobe responded well to the RAI. His tumor marker lowered and the cancerous lesions in his lungs, kidneys and bone reduced in size.  Due to the extent of his disease, an additional dose of RAI would eventually be needed, but Waguespack recommended a conservative RAI treatment approach.  “I wait at least a year, not six months as some older guidelines say, to reconsider RAI therapy in a child because I want to minimize the amount of radiation exposure as much as I can,” Waguespack says. “Also, it can take more than a year for the full effect of the first dose to be seen.”  Twenty months after his first treatment, Kobe received his second dose of RAI.  

Utopia for treating thyroid cancer

“I’m blessed. I realize that I work at a utopia for taking care of thyroid cancer,” Waguespack says. “We all work so well together — nuclear medicine, oncology, pathology, radiology and surgery, among others. Everyone who contributes to treatment has experience in managing endocrine tumors and helps provide cutting-edge clinical care to these young patients.” Kobe’s case epitomizes the benefits of multidisciplinary care. The combination of his therapy and surgeries infinitely reduced the cancer in his body.  “He essentially had cancer from head to toe, and now it’s controlled in a few areas,” his mother says.  Kobe still has disease in his lungs, left kidney and right hip and femur. But he lives his life symptom-free and unaffected by therapy.  Now almost 7 years old, he is thriving in school, preparing to start his third season of soccer and a proud big brother to 1-year-old sister Khloe.

Congratulations to the many faculty members within the Division of Pediatrics at MD Anderson who earned a spot on this year’s “Best Doctors in

Best Docs

Teddy Bear Clinic helps the teddy bears in the Children’s Cancer Hospital get well quick!

Doctors, nurses, clinic assistants, ER attendants, surgical aides and other medical staff were on duty in the Children’s Cancer Hospital PediDome in April to help treat some very special teddy bears. Children’s Cancer Hospital patients “registered” their teddy bears and then proceeded through the clinic for a complete check-up. Knowing the drill, the patients expected check-ups and information on vital signs, immunizations, X-rays, surgery and more. Stations at the Teddy Bear Clinic allowed patients to explore common procedures and learn through a fun medical play experience. The Teddy Bear Clinic was part of Child Life Week, a yearly celebration that showcases the work of child life specialists and assistants at MD Anderson. Child life specialists work with children and their families to help promote effective coping through play, preparation, education and self-expression activities. They provide emotional support for families and encourage optimum development of children facing a broad range of challenging experiences, particularly those related to health care and hospitalization.

America” list. Founded in 1989 by two Harvard Medical School physicians, the Best Doctors list is determined from a peer review of thousands of doctors. Those who earn the consensus support of their peers, as well as meet additional qualification criteria, are included: • Joann Ater, M.D. • Alan Fields, M.D. • Cynthia Herzog, M.D. • Keith Hoots, M.D. • Dennis Hughes, M.D., Ph.D. • Winston Huh, M.D. • Michael Rytting, M.D. • John Slopis, M.D. • Tribhawan Vats, M.D. • Steven Waguespack, M.D. • Laura Worth, M.D., Ph.D.

Associates in other divisions: • William Dreyer, M.D. • Andrea Hayes-Jordan, M.D. • Adelaide Hebert, M.D. • Anita Mahajan, M.D. • John Rhoades, M.D.

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Welcome to new Children’s Cancer Hospital faculty and staff members: Nancy Gordon, M.D., works with the non-neural tumor team in osteosarcoma. Prior to coming to the Children’s Cancer Hospital, she did a general pediatrics residency at Driscoll Children’s Hospital in Corpus Christi, Texas. From 2001 to 2005, she had a hematology-oncology fellowship at MD Anderson, followed by a postdoctoral fellowship from 2006 to 2009. She was an instructor at MD Anderson from January to August 2010 and is now an assistant professor.

Soumen Khatua, M.D., stepped into the shoes of his father, a well-respected pediatrician in India, and received a medical degree from Calcutta Medical College in Calcutta, India. When his son was diagnosed with a Wilm’s tumor, he was inspired to become a pediatric oncologist. He completed a pediatric hematology-oncology fellowship at the Children’s National Medical Center, Washington, D.C., and a neuro-oncology fellowship at the Children’s Hospital in Los Angeles. He is now an assistant professor and pediatric neuro-oncologist at MD Anderson’s Children’s Cancer Hospital. Rhea Li received a bachelor’s degree in nutrition from The University of Texas at Austin and a master’s degree in public health, as well as a registered dietician license from The University of Texas Health Science Center-School of Public Health. She previously worked as the clinic manager for The University of Texas Health Science Center WIC program, a supplemental nutrition program for lower income families and pregnant women. She now works for the Children’s Cancer Hospital collecting nutrition research, developing an e-cookbook, and designing nutrition information handouts. Shulin Li, Ph.D., received his Ph.D. in cell biology from Washington State University in Pullman, Wash. and did his

postdoctorate work in molecular immunology/experimental therapeutics at MD Anderson from 1993 to 1997. Currently, he is a professor in Pediatrics-Research and holds the W.T. and Louise Jarrett Moran Distinguished Chair in Pediatric Oncology at MD Anderson. Li has been asked to serve as an editorial board member for Scientific Reports, a new initiative from Nature Publishing Group, the publishers of Nature.

Division of Pediatrics Academic Office: 713-792-6620

Division Head Eugenie Kleinerman, M.D. Deputy Division Head Robert Wells, M.D. Adolescent/Young Adult Anna Franklin, M.D. Martha Askins, Ph.D. Michael Rytting, M.D. Bone Marrow Transplantation Laurence Cooper, M.D., Ph.D. Susan Kelly, M.D. Dean A. Lee, M.D., Ph.D. Demetrios Petropoulos, M.D. Laura Worth, M.D., Ph.D. Brain/Neural Tumors Joann Ater, M.D. Vidya Gopalakrishnan, Ph.D. Michael Rytting, M.D. Tribhawan Vats, M.D. Endocrinology Steven Waguespack, M.D. Anita Ying, M.D. Hematology Deborah Brown, M.D. Nydra Rodriguez, M.D. Leukemia/Lymphoma Robert Wells, M.D. Joya Chandra, Ph.D. Anna Franklin, M.D. Cesar Nunez, M.D. Michael Rytting, M.D. Patrick Zweidler-McKay, M.D., Ph.D. Nephrology Joshua Samuels, M.D., M.P.H. Neurology/Neurofibromatosis Bartlett Moore, Ph.D. John Slopis, M.D., M.P.H. Non-Neural Solid Tumors Peter M. Anderson, M.D., Ph.D. Najat Daw, M.D. Nancy Gordon, M.D. Cynthia Herzog, M.D. Dennis Hughes, M.D., Ph.D. Winston Huh, M.D. Eugenie Kleinerman, M.D Shulin Li, Ph.D.

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Critical Care Jose Cortes, M. D. Rodrigo Mejia, M.D. Regina Okhuysen-Cawley, M.D. Sanju Samuel, M.D. Pediatric Surgery Richard Andrassy, M.D. Mary Austin, M.D. Charles Cox, M.D. Andrea Hayes-Jordan, M.D. Kevin Lally, M.D. KuoJen Tsao, M.D. Orthopedic Surgery Valerae O. Lewis, M.D. Patrick P. Lin, M.D. Bryan Moon, M.D. Neurosurgery Fred Lang, M.D. Raymond Sawaya, M.D. Jeffrey Weinberg, M.D. Psychology Martha Askins, Ph.D. Bartlett Moore, Ph.D. Rhonda S. Robert, Ph.D. Survivorship Joann Ater, M.D. Winston Huh, M.D.

The University of Texas MD Anderson Cancer Center • Division of Pediatrics


The Children’s Cancer Hospital Newsletter

is an educational resource for physicians and others interested in the treatment, research and prevention of pediatric cancers, produced quarterly from the Division of Pediatrics at The University of Texas MD Anderson Cancer Center.

The University of Texas MD Anderson Cancer Center Division of Pediatrics 1515 Holcombe, Unit 087 Houston, Texas 77030

Non-Profit Org. U.S. Postage PAID Houston, TX Permit No. 7052


• • • • • Division Administrator: David B. Coe Managing Editor: Gail Goodwin We welcome your questions and suggestions.

Change of address or other communication regarding this newsletter may be directed to David Coe at 1515 Holcombe Blvd., Unit 087, Houston, TX 77030; 713-792-6620.

Eat right, stay fit, live longer The Optimizing Nutrition (ON) to Life program at the MD Anderson Children’s Cancer Hospital started the year running and is on pace to promote healthy eating habits for pediatric cancer patients, survivors and their caregivers.

George Foreman Pediatric and Adolescent Inpatient Unit Robin Bush Child and Adolescent Clinic Kim’s Place R.E. (Bob) Smith Research Facility

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Our Mission

To cure cancer in children and young adults within a caring, life-affirming environment.

Our Vision

We will offer children and young adults hope and an opportunity to lead full and productive lives. We will lead the efforts worldwide to cure cancers through the excellence and compassion of our people, research-driven innovative therapies, education programs and active collaboration with patients, families and communities.

• • • • • Contact us at 713-792-5410 8 a.m.–5 p.m. (M–F) and after hours at 713-792-7090. Request the on-call pediatric oncology attending.

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This multidisciplinary program is also recruiting for two new studies for children ages 7-18. Children in this age range are more aware of the foods they eat and are influenced by others around them, causing them to make changes more readily. Pivotal to the ON to Life program are the educational and behavioral therapy components. They focus on informing patients, survivors and their caregivers about proper nutrition habits and physical activity with hopes of preventing health problems. Research indicates that a pattern of unhealthy eating habits and a sedentary lifestyle may persist beyond treatment and lead to obesity among pediatric cancer survivors.

What puts on the pounds? Steroid therapy, chemotherapy component for pediatric cancer patients, causes an increase in appetite that may cause excess weight gain. With this in mind, patients receiving steroid treatment are eligible to receive tailored nutrition counseling provided by Rhea Li, registered dietitian for the ON to Life program. Monthly sessions are offered early on during treatment and are designed to meet the patient’s needs, including tailored diet plans and recipe modification. Patients ages 7-18, who are diagnosed with acute lymphoblastic leukemia (ALL) and receiving steroids within two weeks of initiating treatment, are eligible for this initiative.

Researching the issues Beyond individual counseling, the ON to Life program is using a technological-based approach for research. In collaboration with the Children’s Nutrition Research Center at Baylor College of Medicine in Houston, the program is recruiting children to test an action-adventure video game. This game was originally designed for healthy children and resulted in an increase in fruit/vegetable intake and daily physical activity. The purpose of the study is to determine if the game can be adapted for children with cancer and to introduce new characters with whom pediatric cancer patients may identify. Children are eligible to participate if they are: • ages 9–12, • diagnosed with ALL or lymphoma, • receive treatment on an outpatient status three to six months after diagnosis or are survivors off treatment for at least 12 months after remission, and • live in the Houston area.

The Children’s Cancer Hospital is also developing a resource for patients and the healthy community. A new Healthy Living section will soon be available on its website that will feature tips on healthy eating and an e-cookbook. Look for easy-to-follow recipes using everyday ingredients and nutrition analysis in the e-cookbook. This work-in-progress will eventually provide a customizable database of recipes tailored to a child’s needs. MD Anderson is looking for nutritious recipes to include in the e-cookbook. Please refer to

for submission and release forms.

Other studies in the program include the ongoing Eat and Treat laboratory study designed to determine if well-nourished children have better outcomes to cancer treatment and better long-term growth. Patients with any type of cancer and age are eligible for this study. Another study, Fit4Life, designed for children ages 7-18 diagnosed with ALL, is a cell phone and web-based nutrition intervention that recruited patients in April.

Children's Cancer Hospital Newsletter - Summer 2011  
Children's Cancer Hospital Newsletter - Summer 2011  

Cover story: Long-time neurofibromatosis patient Emily Parker serves as an advocate for the disease and has helped raise funds to fight it.