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Children’s Cancer Hospital NEWSLETTER FROM THE DIVISION OF PEDIATRICS AT THE UNIVERSITY OF TEXAS M. D. ANDERSON CANCER CENTER • • • • • SEPTEMBER • 2007 Children’s Cancer Hospital at The University of Texas M. D. Anderson Cancer Center: The George Foreman Pediatric and Adolescent Inpatient Unit Robin Bush Child and Adolescent Clinic B E H A V I O R A L P E D I A T R I C S ...Treating the Whole Child Kim’s Place R. E. (Bob) Smith Research Facility Our Mission is to treat the whole child, not just the cancer. Each patient has a team of treatment specialists to address any cancerrelated issues, whether they are medical, psychological or developmental. Treatments are designed for minimal interference to your child’s normal routine. Because a familiar face means so much to a child, they will see the same physician throughout their treatment. Patients and families always know who “their” doctor is. We also make sure that life after cancer is the best it can be. Follow-up programs monitor and manage any side effects of cancer or its treatments. Counseling and support groups help the parents and the child overcome any fears and concerns. At the Children’s Cancer Hospital, kids rule–not cancer. We wouldn’t have it any other way. 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 We’re on the Web! www.mdanderson.org/children T reating children with cancer is not limited to treating the disease. Instead, we recognize that children, adolescents and young adults with cancer have special psychosocial needs and challenges that can best be met by a multidisciplinary team of professionals acting together. • • • • • • • • • • • • • • • • • • • • • • In the Children’s Cancer Hospital, Behavioral Pediatrics works to minimize the impact of cancer on the child and family and to prepare them for a return to normal life. Most children diagnosed with cancer today can look forward to a very long future. Our job is to help them through the cancer experience, give them hope and prepare them to live that life. Our team is comprised of more than 30 specialists in clinical psychology and psychiatry, neuropsychology, child life, education, social work, chaplaincy and language assistance. Patients in the Children’s Cancer Hospital also benefit from music and art therapy and enrichment opportunities. These disciplines interact in a synergistic manner, planning programs and patient care at weekly meetings and rounds. continued Bernadette Aylor, a coordinator in the clinical research program, interacts with a young patient during a neuropsychological assessment. Behavioral Pediatrics continued from page 1 T he main “job” of children is to grow physically, academically, socially and emotionally. Ordinary illnesses are a normal part of childhood; cancer is not. We strive to normalize our young patients’ lives as much as possible with school, field trips and fun activities in the PediDome and Kim’s Place and during the annual summer camps organized by Linda Blankenship, program manager. Before a child participates in many of these activities, we meet with each disease-specific clinical team to assess psychosocial needs and issues that may affect their treatment plan. Bart Moore, Ph.D., head of the Behavioral Pediatrics group, meets with his team to discuss issues that might affect patient treatment plans. Janet Ruffin, art teacher for both elementary and secondary levels, uses art to encourage children’s imaginations. PSYCHOLOGY SERVICES Clinical psychologists Martha Askins, Ph.D., and Rhonda Robert, Ph.D., and psychiatrist Estela Beale, M.D., specialize in addressing the psychological and emotional needs of children and their families during and after treatment for cancer. Children with cancer experience physical changes or losses in appearance and function that commonly provoke anxiety. Parents must often learn how to best help their child succeed with medical procedures or hospitalization, while at the same time managing their own fears and concerns. Our solution to this is a Maternal Problem Solving Program, which assists parents in the challenges they face. Siblings may also need help adjusting to changes in family life when parents are intermittently absent or daily routines change. The psychologists and psychiatrist are available from the time of diagnosis to help minimize distress and foster adjustment as quickly as possible. Brain development can be affected by certain types of chemotherapy and radiation treatments, resulting in learning and cognitive difficulties. Our neuropsychology team assesses patients for difficulties in language, memory, intellectual, visual perceptual and attention skills. All children with brain tumors are evaluated, as well as children undergoing bone marrow transplantation. This team works closely with the education team to evaluate a child’s strengths and weaknesses to ensure that they can attain their maximum academic potential, in spite of their cancer treatment. Askins, who heads the Cognitive Training Research Program, provides a 20-week course for patients who are at-risk for cognitive difficulties associated with their treatment. By incorporating some techniques used to remediate the problems in victims of traumatic brain injury, our at-risk patients Sandra Medina, pediatric research investigator, engages her patient in the cognitive training research program. may be spared some of the cognitive problems commonly associated with cancer and its treatments. CHILD LIFE PROGRAM Renee Hunte, M.A., CCLS, leads the Child Life Program in the Children’s Cancer Hospital. Under her direction, six trained specialists help children and their families understand and manage stressful life events and health care experiences during the course of their treatment. All of our specialists are nationally certified and have college or advanced degrees in child development, Counseling, Education, Family Studies or Therapeutic recreation. Their goal is to provide opportunities for optimal growth and development in the child despite the rigors of cancer treatments. Their friendly and caring faces are usually the first a child encounters when coming to the Children’s Cancer Hospital. Child life specialists help prepare children for diagnostic tests, surgery and other medical procedures that are frightening or painful. They also engage in medical play and education about procedures using special dolls and medical equipment and teach the child stress reduction techniques. All of these help the child have a feeling of personal control. Our child life specialists provide support services for all pediatric patients regardless of age. Some young children regress emotionally and need help to remain on track developmentally. Older children and teens have different needs and are engaged in fun activities in Kim’s Place or in support groups with other teens with similar emotional and social needs. Siblings are not neglected — they often are included in field trips, summer camps and other activities with their sister or brother. Children of adult patients with cancer often go under the radar screen, despite obvious needs. Martha Aschenbrenner, program Claudine Simpson, Ph.D., a teacher in the Children’s Cancer Hospital education program, works with a patient to keep him on level with his peers. manager directs our Kids Need Information, Too (KNIT) Program that helps these children understand their parent’s illness and treatment. And, when the outcome is poor, she provides help in preparation and in grieving. SCHOOL PROGRAM Under the direction of Carla Hart, MSEd., our education program consists of state certified elementary, secondary and special education teachers as well as educational liaisons. Academic instruction is held in classrooms and offered bedside when needed. In addition, we provide academic enrichment such as field trips, a fitness program, music and creative arts. For older patients, we also offer career planning and vocational guidance. Our school program provides hope, preparation for life, normalization and comfort for our patients. Hope - Going to school gives the child the idea that we expect them to get better; we’re not giving up on them. Preparation for Life - We DO expect our patients to survive and so it is important that they emerge from their cancer ready to rejoin their peers in school and get on with their lives. Normalization - Going to school gives our patients a feeling of normalcy in the chaos of cancer treatment. Comfort - Participation in school activities also provides a diversion from pain and discomfort, as well as providing a means of social support. Our educational liaisons have advanced degrees and are trained in education law and regulations. They consult with schools either by conference call or through school visits. Community teachers are given information about the child’s diagnosis and treatment plan, anticipated absenteeism, medications and the side effects of treatment, especially those that may impact learning. Classmates Young campers enjoy the water at Camp A.O.K., a summertime adventure that offers a relief from hospital treatment. are educated on their peer’s specific cancer, myths about cancer and what to expect once their friend returns to the classroom. Dick Maddox, from Chaplaincy & Pastoral Education, has been instrumental in forming a networking group for Muslim parents. Our school has current technology that allows for live, video conferencing. For schools that also have this technology, our patients can go to their community classroom virtually — they can see their classmates, be seen by them and interact verbally just as if they were present physically. This technology is also used for children in isolation so that they may maintain their academic curriculum until their isolation is lifted. ADDITIONAL SUPPORT PROGRAMS Social workers Lisa DeLeef, Sarah Stone and Heather DeRousse play an integral role in our Behavioral Pediatrics team. They are an invaluable resource for families and provide counseling to parents from diagnosis through end of treatment, as well as practical information to make the logistics of cancer treatment go more smoothly. Social workers assist with financial, transportation and housing issues and provide community resources. They are always on hand to provide emotional support during times of high stress. Chaplain Dick Maddox and his associates are available to support our patients and their families, regardless of their faith. And, because our patients are often from other countries, language assistants Maria Elana Leighton and Magda Sadek are often called upon to help translate during psychosocial activities. Their language fluency and clinical insight ensures that nothing is “lost in translation.” Music and art therapy have been shown to have therapeutic benefits to patients with chronic illness. In the Creative Arts Program, Janet Ruffin, artist-in-residence, is a professional artist, arts educator and poet who helps patients express themselves artistically at bedside, in clinic treatment rooms, the outpatient clinic playroom, the hospital playroom, the teen room and Kim’s Place. She uses different mediums to inspire creativity, such as drawing, acrylic, tempera, watercolor, printmaking, digital photography and sculpture. Michael Richardson, M.T.-BC, is a music therapist who transforms his love of music into a therapeutic tool to help pediatric patients of all ages express themselves through a variety of musical outlets. His enthusiasm and engaging personality lift the spirits of patients and helps them get through challenging times. A lthough the Behavioral Pediatrics team at the Children’s Cancer Hospital consists of professionals from all of these distinct disciplines, we do not act in isolation. Each discipline is in close communication with the others, and we learn from each other’s different perspectives and approaches. We share insight, information and suggestions on how to best care for our patients so that their psychosocial needs are fully met. Fighting cancer is hard work for everyone — our goal is to make the going easier and to prepare our children for the rest of their lives. Uttesha Lumpkin, child life specialist, works as she “plays” with patients, building a trusting relationship to help them understand their medical treatments. Patients get the rhythm as they sing along with Michael Richardson, music therapist. Doctor, lawyer, teacher — these were all early goals of Carla Hart, MSEd., new director of the Education Program in the Children’s Cancer Hospital. An Apple for the Teacher As it’s turned out, she has successfully melded elements of all these fields as she takes the reins of the education program in the Children’s Cancer Hospital at M. D. Anderson Cancer Center. With a B.S. in audiology and speech from Florida State University and an MSEd. in special education from George Mason University, Hart is armed with the tools she needs to make certain that the potential of her staff and her program is not wasted. Hart explains that her decision to join the Children’s Cancer Hospital was based on her belief that “this is a place that breeds people who think outside the box. I have always been interested in the program here. The opportunities I could see and the reputation of the institution attracted me.” “There are all kinds of ways to grow the education program,” she says. “The quality of the staff, the coordination between the departments and my feeling that everyone is interested in the same goal — all of this makes me feel very supported. We can blend our educational system and our medical system and use the past to look into the future to determine what is most needed for our patients.” Prior to joining the Children’s Cancer Hospital, Hart spent time at Phoenix Children’s Hospital and at St. Luke’s Children’s Hospital in Boise, ID where she developed the first school program for the hospital. She is the president elect of the Association for the Education of Children with Medical Needs, which had brought her to visit M. D. Anderson’s Children’s Cancer Hospital several times. Hart anticipates a lot of observing at the start but has plans for one-on-ones with her staff and meeting with parents to learn about their ideas and concerns. Speaking after only one week on the job, Hart was already issuing gold stars. “I am impressed by the respect I see from everyone to everyone,” she says. “In the future, it’s all about changing the mindset of what has been done in the past and changing the mindset of what can be done in the future. But, I have a lot of experience in getting changes made — it’s a strength of mine.” Drug Therapy Corner – Susannah E. Koontz, Pharm.D., BCOP Risperdal® Gains Approval for Treatment of Two Psychiatric Conditions in Children and Adolescents O n August 22, 2007, the FDA announced the approval of Risperdal® (risperidone) for the treatment of two psychiatric conditions in young patients. Janssen’s product is now labeled for use in the treatment of schizophrenia in patients ages 13-17 years and for the short-term management of manic or mixed episodes of bipolar I disorder in children and adolescents ages 10-17 years. This action by the FDA marks the first time an atypical antipsychotic drug has been approved for either condition in young patients. Prior to this time, only lithium has been approved to manage bipolar disorder in adolescents ages 12 years and older, and no therapy has been approved for treatment of schizophrenia in pediatric patients. The efficacy of Risperdal® in children for the indications mentioned above was demonstrated in multiple short-term, double blind, controlled trials. In the two trials evaluating therapy in patients with schizophrenia, patients treated with Risperdal® generally had fewer symptoms including a decrease in hallucinations and delusional thinking. Similar findings were observed in the multicenter trial investigating Risperdal® for the treatment of manic or mixed episodes in children with bipolar I disorder — patients generally experienced fewer disease-associated symptoms. Risperdal® was first approved for use in the United States in 1993 for the treatment of schizophrenia in adults. The drug later won approval for the short-term treatment of acute manic or mixed episodes associated with bipolar I disorder in adults and the treatment of irritability associated with autistic disorder in pediatric patients ages 5-16 years. Commonly reported side effects associated with the use of Risperdal® include: nausea, dry mouth, drowsiness, dizziness, fatigue, increased appetite, anxiety, tremor and rash. Patients from the Children’s Cancer Hospital had a sweet treat in July. The children made cookie trains and jewelry with the help of staff from the Cookie Jar Bakery. Many of the decorated treats were eaten before the icing even had time to dry. It’s summer and that means it’s time for camp! • • • • • • • • • • • • • • • • • • Star Trails, for patients ages 5 to 12 and their siblings, is 3Camp held at the Camp For All facility in Burton, Texas. Fishing, canoeing, swimming, arts and crafts and other traditional camp activities are all part of the fun. Camp closes each year with a poignant “Wish Boat” ceremony that involves all the campers. • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • 5 Every summer, pediatric patients and survivors pack their bags for a fun educational trip to San Antonio. While in San Antonio, patients visit the Alamo, SeaWorld, the Institute of Texan Cultures and many other San Antonio sights. The trip is sponsored by the Children’s Cancer Hospital, the Children’s Art Project, Southwest Airlines and SeaWorld. • • • • • • • • • • • • • • • • • • • • • • • 3For those who weren’t able to attend Camp Star Trails this summer, the Child Life staff and Smart MultiMedia, Inc. joined forces to host the “Rockin’ in the Rainforest” inpatient camp. Thanks to collaborations with the Houston Museum of Natural Science, the Houston Zoo, Landry’s Restaurants and more, patients had daily lessons about the rainforest and created a variety of jungle-themed craft projects such as spider hats, wooden snakes, Model Magic poison dart frogs, masks and rainsticks. The camp’s faux campfire was the center of attention during snack-time. Cesar Nunez, M.D., instructs his patient to “Say Ahhhhhhhhhhh.” Lymphocyte Count Found to be a Predictor of Survival for Young Patients with Leukemia DIVISION OF PEDIATRICS Academic Office: 713-792-6620 Division Head Eugenie Kleinerman, M.D. Deputy Division Head Robert Wells, M.D. Researchers from the Children’s Cancer Hospital at M. D. Anderson Cancer Center have found that one simple blood test could predict relapse or survival for children and young adults with acute leukemias. A review of young leukemia patients over the past decade has shown that the absolute lymphocyte count (ALC), a measure of normal immune cells found on every complete blood count report, is a powerful predictor of survival for young patients with leukemia. According to the American Cancer Society, the average rate of survival for pediatric patients with acute myelogenous leukemia (AML) is close to 50 percent. However, researchers discovered that using the ALC count on day 15 after initial chemotherapy treatment can significantly predict which patients are likely to relapse and those who will not. This prediction may help physicians decide how aggressively to treat a leukemia patient. In addition, it may direct researchers in developing therapies to increase a patient’s ability to battle the leukemia cells. “Possibly by tweaking the immune system through chemotherapy, immune modulators or oral supplements, we could help a patient’s body better fight leukemia,” says Patrick Zweidler-McKay, M.D., Ph.D., assistant professor of pediatrics at the Children’s Cancer Hospital. “This ALC test could also help us identify patients who would benefit from less chemotherapy.” The results from the study of 171 young leukemia patients showed that AML patients who had a low lymphocyte count on day 15 of treatment had a five-year overall survival chance of only 28 percent. However, patients with higher lymphocytes on day 15 had a much better overall survival rate of 85 percent. For patients with acute lymphoblastic leukemia (ALL), the most common form of childhood leukemia, researchers found that those children and young Patrick Zweidler-McKay, M.D., Ph.D., has one of his young patients try out his stethoscope. adults with a high ALC count on day 15 had an 87 percent six-year overall survival rate while those with a low lymphocyte count had a 55 percent overall survival rate. Researchers at the Children’s Cancer Hospital plan to continue their study by following newly diagnosed patients and have begun another study that analyzes the subsets of lymphocytes to see which ones have the most impact on prognosis. They hope their findings will be used to help physicians worldwide make decisions on how aggressively to treat their patients. “Many developing countries lack the latest technologies and treatment options that we have here in the United States,” says Zweidler-McKay. “A complete blood count test is a universal, inexpensive test. There is the potential for physicians worldwide to look at the ALC count to help determine whether the patient needs additional treatment options that aren’t available in every center.” In addition to pediatric acute leukemias, these researchers have found that ALC predicts survival in young patients with non-Hodgkin’s lymphoma and a bone cancer, Ewing’s sarcoma. These findings suggest that this simple test may redefine the way physicians treat a range of different cancers. A paper on this study was presented at the 2007 Annual Meeting of the American Society of Pediatric Hematology/Oncology and will be published in the journal CANCER. Children’s Cancer Hospital Collaborates with Sister Institutions The mission at M. D. Anderson does not stop at eliminating cancer in Texas. Our goal is to eliminate cancer for the entire world, and one way to accomplish this is through collaborations with sister institutions. The third annual Sister Institution Conference at M. D. Anderson took place June 5–8, 2007. The Sister Institution’s primary objective is to strengthen M. D. Anderson's network of institutions and affiliates by facilitating collaborations focusing on patient care, research, prevention and education. This year was the first year that pediatric oncology was represented at the conference, and faculty from the Children’s Cancer Hospital played a large role in the specific interest discussions. Johannes Wolff, M.D., Peter Anderson, M.D., Demetrios Petropoulos, M.D., Cesar Nunez, M.D., and Joya Chandra, Ph.D., represented the Children’s Cancer Hospital through presentations related to their specialties. “We have now started setting the framework for collaboration in pediatric oncology,” says Nunez, assistant professor of pediatrics. “Through these interactions, we can create standard processes and regulations that will allow for international clinical trials.” Nunez believes that the collaborations will be instrumental in getting basic research and clinical research in pediatric oncology moving at a quicker pace. “We have a survival rate of nearly 90 percent in childhood leukemia in the United States, but that’s not the case elsewhere in the world,” says Nunez. “By partnering with other institutions, we can work together to conduct basic research clinical trials and get the marker moving on cure rates outside of the U.S.” The collaborations aren’t just beneficial to international institutions. Nunez noted that there are technologies, processes and anti-cancer agents in other countries that hospitals in the United States could use to improve cancer care. More than 300 international participants from 20 countries attended the conference, representing medical institutions in Argentina, Brazil, Chile, China, Egypt, France, Germany, Hungary, India, Japan, Korea, Lebanon, Mexico, Norway, Peru, Saudi Arabia, Spain, Taiwan and the United Kingdom. The Children’s Cancer Hospital is in the initial stages of working with institutions in France, Brazil and Turkey. Adolescent/Young Adult Michael Rytting, M.D. Martha Askins, Ph.D. Bone Marrow Transplantation Laurence Cooper, M.D., Ph.D. Dean A. Lee, M.D., Ph.D. Laura Worth, M.D., Ph.D. Demetrios Petropoulos, M.D. Brain/Neural Tumors Joann Ater, M.D. Johannes Wolff, M.D. Vidya Gopalakrishnan, Ph.D. Endocrinology Steven Waguespack, M.D. Hematology W. Keith Hoots, M.D. Deborah Brown, M.D. Nydra Rodriguez, M.D. Late Effects Joann Ater, M.D. Alan Fields, M.D. Winston Huh, M.D. Leukemia/Lymphoma Seth Corey, M.D., MPH Joya Chandra, Ph.D. Anna Franklin, M.D. Patrick Zweidler-McKay, M.D., Ph.D. Cesar Nunez, M.D. Michael Rytting, M.D. Robert Wells, M.D. Nephrology Joshua Samuels, M.D., MPH Neurology/Neurofibromatosis Bartlett Moore, Ph.D. John Slopis, M.D., MPH Non-Neural Solid Tumors Peter M. Anderson, M.D., Ph.D. Cynthia Herzog, M.D. Winston Huh, M.D. Eugenie Kleinerman, M.D. Dennis Hughes, M.D., Ph.D. Peter Zage, M.D., Ph.D. Critical Care Alan Fields, M.D. Rodrigo Mejia, M.D. Regina Okhuysen-Cawley, M.D. Jose Cortes, M. D. Pediatric Surgery Richard Andrassy, M.D. Kevin Lally, M.D. Charles Cox, M.D. Andrea Hayes-Jordan, M.D. Neurosurgery Raymond Sawaya, M.D. Fred Lang, M.D. Jeffrey Weinberg, M.D. Psychology Martha Askins, Ph.D. Bartlett Moore, Ph.D. Rhonda S. Robert, Ph.D. New Patient Line: 713-792-5410 After Hours: 713-792-7090 D esigners of the 2007 Holiday Collection for the Children’s Art Project, all patients or former patients, were introduced and honored at the annual CAP Card Announcement this summer. Straight from these talented children’s imaginations to cards, ornaments, ceramics, t-shirts and more, the colorful works of art will be featured on CAP seasonal note cards and gift items this season. The project has contributed more than $23 million dollars to fund programs that benefit cancer patients and their families in both the Children’s Cancer Hospital and M. D. Anderson. For more information, visit www.childrensart.org. • • • • • • • • • • • • • • • • • • • • • • A Few Products... The Children’s Cancer Hospital Newsletter is an educational resource for physicians interested in the treatment, research and prevention of pediatric cancers, produced quarterly from the Division of Pediatrics at The University of Texas M. D. Anderson Cancer Center. The University of Texas M. D. Anderson Cancer Center Division of Pediatrics 1515 Holcombe, Unit 853 Houston, Texas 77030 ADDRESS CORRECTION REQUESTED David B. Coe, Division Administrator Gail Goodwin & Sara Farris, Managing Editors 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. Non-Profit Org. U.S. Postage PAID Permit No. 7052 Houston, TX