UPDATE. Physician s. Volume 1 Issue

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1 Physician s UPDATE Volume 1 Issue In This Issue Innovations in Pediatric Oncology Making a Difference, Saving Lives Bone and Soft Tissue Sarcoma Program Expands Care Coordination Children s Mercy Launches Comprehensive Brain Tumor Program Researchers Advance the Fight Against Childhood Cancer Early Phase Drug Trials Bring Promise to Pediatric Cancer Patients Expediting Care for Children with Complex Liver Tumors Taking Bone Marrow Transplants Beyond Oncology Seth s Story

2 2 Children s Mercy HospitalS and Clinics Making a Difference, Saving Lives Childhood cancer is relatively rare, affecting approximately two out of every 10,000 children each year. But for those families who are touched by this disease, the impact is devastating. Fortunately, survival rates have improved by more than 20 percent since the late 1970s.Today, overall survival rates are greater than 80 percent for children with cancer. Nobody in the region has done more to improve those outcomes than Children s Mercy Hospitals and Clinics. Children s Mercy cares for nearly 90 percent of new pediatric cancer diagnoses in the area. The hospital s team of 21 pediatric hematologists/oncologists, as well as pediatric subspecialists and surgeons, nurses, support staff and researchers are committed to providing the highest level of care for these families, while also working toward improving treatments and finding cures for childhood cancers. In addition to clinical care, the hospital s team of specialists is involved in advancing pediatric cancer research in partnership with several national consortia. While we can now cure most of the kids we see, what drives us is the desire to someday cure them all, says Alan Gamis, MD, Associate Division Director, Section of Oncology at Children s Mercy and at the University of Missouri-Kansas City School of Medicine. With a continued, persistent focus to be a key center of children s cancer research, as well as our multidisciplinary clinical approach, Children s Mercy is making a difference. Bone and Soft Tissue Sarcoma Program Expands Care Coordination Dr. Joy Fulbright and Dr. Suhel Kotwal Sarcoma accounts for approximately 15 percent of all childhood cancers. Each year, Children s Mercy treats approximately 30 children with bone or soft tissue tumors. Most of these children will require surgery to remove their tumors. The Bone and Soft Tissue Sarcoma Program at Children s Mercy has expanded its multidisciplinary approach for these patients with the addition of Suhel Kotwal, MD, orthpaedic surgeon. Dr. Kotwal completed a fellowship in musculoskeletal oncology at MD Anderson, and specializes in the treatment of bone and soft tissue tumors. He will see patients in the Hematology/Oncology clinic one day a week and perform surgeries one day a week at Children s Mercy. The addition of Dr. Kotwal enables us to provide seamless care coordination from radiation oncology to pathology and to now, orthopaedic surgery, with a multidisciplinary tumor board and enhanced collaborative research across disciplines, says Joy Fulbright, MD, Director of the Bone and Soft Tissue Program and, UMKC School of Medicine. The multidisciplinary Bone and Soft Tissue clinic allows patients to receive all services on one campus. Commonly treated diagnosis include osteosarcoma, Ewing s Sarcoma, rhabdomyosarcoma and Non-Rhabdomyosarcoma Soft Tissue Sarcoma (NRSTS). Dr. Fulbright estimates Children s Mercy will perform surgeries for bone and soft tissue sarcomas per year. She also notes that as a member of the Children s Oncology Group, the program will continue to enroll patients in protocols unavailable at other hospitals in the region. To learn more about this program or make a referral, please call (816)

3 Childrensmercy.org 3 Children s Mercy Launches Comprehensive Brain Tumor Program With the addition of a fellowship trained neurooncologist, Children s Mercy now offers a comprehensive pediatric brain tumor program. Pediatric neuro-oncologist Kevin Ginn, MD, the director of the program and an at the UMKC School of Medicine, works with a team that includes oncologists, neurosurgeons, neuropsychologists, neurologists, rehabilitative professionals and other clinical staff to provide comprehensive, focused care for brain tumor patients. The program focuses heavily on coordination of therapy, increasing the number of cutting-edge clinical trials, and increased recognition in the area as a pediatric neuro-oncology referral center. Additionally, we are launching research collaborations with local and national groups to increase the survival of children with brain tumors. Dr. Ginn joined Children s Mercy in 2012 to launch the program after his training in neuro-oncology at St. Jude Children s Research Hospital. Brain tumor patients continue to have higher than acceptable mortality rates and frequently have significant complications after surgery and therapy, Dr. Ginn says. It is better to have coordinated care specifically for those patients. Kevin F. Ginn, MD Pediatric Neuro-Oncologist, UMKC School of Medicine A graduate of the Medical University of South Carolina, Dr. Ginn had trained at Louisiana State University in New Orleans before moving to Children s Mercy for training in pediatric hematology and oncology. Children s Mercy sees nearly 200 newly diagnosed cancer patients each year. About 39 new brain tumor patients were diagnosed last year. Hospitals with that kind of volume often need to divide into specialty areas for more focused patient care. Brain tumor patients continue to have higher than acceptable mortality rates and frequently have significant complications after surgery and therapy, Dr. Ginn says. It is better to have coordinated care specifically for those patients. Dr. Ginn oversees treatment of all brain tumor patients, who are cared for by a team of oncologists. Twicemonthly, multidisciplinary patient care conferences allow providers to discuss patients treatment and needs. Another major aspect of the program are its clinical trials. One of the goals is to have a clinical trial for every major type of pediatric brain tumor for new diagnoses as well as for relapse, Dr. Ginn says. He hopes to focus on tumors whose patients have the worst prognoses, like high-grade gliomas, diffuse intrinsic pontine gliomas and atypical teratoid rhabdoid tumors. Survival is so poor, we want to be able to enroll these patients in earlystage trials from diagnosis, he says. Dr. Ginn expects to work with local organizations like the Stowers Institute for Medical Research and The University of Kansas Cancer Center to stimulate research and bring it forward to clinical care. Patients coming into our center from other areas for a multispecialty evaluation may be able to have a single clinic visit where they can be seen by all specialties and can get everything they need in one day, he says. GET TO KNOW: Kevin F. Ginn, MD Pediatric Neuro-Oncologist, UMKC School of Medicine

4 4 Children s Mercy Hospitals and Clinics Researchers Advance the Fight Against Childhood Cancer In collaboration with local partners as well as several national consortia, Children s Mercy is on the front lines of advancing pediatric research and making that research available to patients locally. I m happy to say that Children s Mercy is leading the way in pediatric cancer research, says Alan Gamis, MD, Associate Division Director and Section Chief of Oncology at Children s Mercy, and at the University of Missouri- Kansas City School of Medicine. We passionately search to find a cure and to lessen the suffering of our patients. Children s Mercy is a member of the National Cancer Institute s Children s Oncology Group, the largest international research consortium, and Dr. Gamis chairs the COG committee designing and overseeing trials in Acute Myeloid Leukemia. Through the hospital s participation in COG, local patients have access to cutting edge clinical trials at any given time, right here in Kansas City. As a member of the Midwest Cancer Alliance, Children s Mercy also played a key partnership role as the pediatric oncology provider with the Kansas University Medical Center in achieving National Cancer Institute designation. Several collaborative studies are underway with KU researchers on studies related to leukemia, immunotherapy for neuroblastoma and melanoma, bone marrow transplant, survivor transition, and medication formulation. We have a tremendous responsibility and obligation to provide the children we treat and their families with the highest level of care possible, says Gerald Woods, MD, Hematology/Oncology Division Director, and Professor of Pediatrics, UMKC School of Medicine. We are able to do that by providing care that is backed by evidence of its effectiveness, and pursuing research that advances treatment and brings us closer to a cure. Here are a few examples of research currently underway at Children s Mercy. Experimental Therapeutics The hospital is also at the forefront of research to improve the safety and effectiveness of cancer medications for children. The hospital s Experimental Therapeutics in Pediatric Cancer Program brings phase I and II clinical trials and therapies to patients who have had a recurrence of cancer. In addition to its own investigator initiated trials, the program is playing a leadership role and providing core research facilities in several national groups including the Pediatric Oncology Experimental Therapeutics Investigators Consortium, the Neuroblastoma & Medulloblastoma Translational Research Consortium, Therapeutic Advances in Childhood Leukemia & Lymphoma and the Children s Oncology Group. Neuroblastoma Working with the Center for Cell and Gene Therapy at Baylor College of Medicine and Kansas University Medical Center, Doug Myers, MD, is genetically modifying infection fighting cells and using proteins called chimeric antigen receptors (CARs) to carry the cells to the child s tumor, specifically, neuroblastoma, following bone marrow transplantation. Dr. Myers also is investigating ways to make the cells more active toward this tumor, as well as other pediatric and adult tumors, and engineering them to be more resistant to the suppressive effects of the tumor microenvironment. Dr. Doug Myers

5 Childrensmercy.org 5 Early phase drug trials bring promise to pediatric cancer patients Hopefully, in the near future we will be able to provide better cure rates for these notoriously difficult to treat cancers while employing less of the toxic chemotherapy agents currently in use, says Dr. Myers. Cancer Survivors A group of researchers from Children s Mercy and Kansas University led by Kristin Stegenga, PhD, RN, collaborated on a study to explore the educational needs and late effects of adult survivors of childhood cancer across our area. The first manuscript from this work is available in the May issue of Oncology Nursing Forum, focusing on the physical effects and educational needs of survivors. The initial work has spawned two new projects: one to streamline transitions for survivors who are becoming adults and need to seek adult care Dr. Kristin Stegenga providers, and one to meet the educational needs of those adult care providers. Learn more about our research at childrensmercy.org/oncology. Dr. Keith August and Dr. Kathleen Neville Launched in 2010, the Experimental Therapeutics in Pediatric Cancer Program is a collaborative initiative aimed at giving children with recurrent or refractory cancer a local option to pursue experimental treatment with early phase anti-cancer drugs. The program has its own investigator-initiated trials and is working with several national consortia, including The Pediatric Oncology Experimental Therapeutics Investigators Consortium and the Neuroblastoma & Medulloblastoma Translational Research Consortium, and Therapeutic Advances in Childhood Leukemia & Lymphoma. The program is also partnering with the Institute for Advancing Medical Innovation at the University of Kansas to conduct basic science research on refractory or recurrent pediatric tumors and to reformulate older anticancer drugs into formulations that are appropriate for children. My hope would be that we will be able to quickly move these compounds into studies. The goal is that, in 5 or 10 years, treatment will be different, less toxic, better tailored and we ll have a better cure rate for these kids, says program director Kathleen A. Neville, MD, MS.

6 6 Children s Mercy Hospitals and Clinics Expediting care for children with complex liver tumors Children with liver tumors have complex needs requiring highly integrated care. Through a unique program, Children s Mercy Hospital brings together the medical and surgical expertise within the Division of Hematology and Oncology with that of the Liver Care Center to offer patients the combined services of a pediatric-centered, subspecialty team that includes their oncologist, hepatologist and a transplant surgeon, as well as the ancillary services offered by social work and nutrition. Our collaborative effort from the beginning allows us to plan a multidisciplinary treatment approach that will maximize the cure and minimize the side effects, said Michelle Manalang, MD, Pediatric Hematologist/ Oncologist, Clinical Director, in describing the hospital s Liver Tumor Program as a way to improve care for children with hepatoblastoma. Our collaborative effort from the beginning allows us to plan a multidisciplinary treatment approach that will maximize the cure and minimize the side effects. Michelle Manalang, MD Pediatric Hematologist/Oncologist, Clinical Director Hepatoblastoma is the most common malignant liver tumor in children in the United States. Nearly 70 percent are considered late stage (III or IV) when diagnosed. Although there are a number of methods for approaching treatment, complete surgical resection of the tumor is the most important component to a successful outcome. Among the benefits of this uniquely organized model of care is that patients are followed Dr. Walter Andrews and Dr. Michelle Manalang closely by each area from the moment they enter the Children s Mercy system. I think this has sped up the care for families, because the team has dynamically discussed a plan, based on a thorough case review, prior to meeting with the family, Dr. Manalang says. The result is that the family is able to move forward more quickly with treatment. And, with a coordinated plan, the doctors can jointly order follow-up diagnostic tests that will fulfill each of their needs and result in less cost, less radiation, and less back-and-forth travel time for the family, Dr. Manalang says. Once patients complete treatment, the team continues to follow their progress through a quarterly liver tumor clinic. In this single appointment setting, the families can discuss all facets of their child s care with each of the sub-specialists involved. The approach continues the effort to provide a more positive experience for the families, and a quicker means by which to act, if necessary, based on the collective decision of their care team. Through its affiliation with the Children s Oncology Group, Children s Mercy is involved in current research investigating different chemotherapy regimens to determine which may be more effective in young patients with liver cancer; whether early referral to a liver transplant surgeon increases survival rates; and whether more intense chemotherapy will improve the treatment of advanced hepatoblastoma. Results will help clinicians better understand hepatoblastoma so they may improve cure rates while reducing the potential life-long side effects of treatment.

7 Childrensmercy.org 7 Taking Bone Marrow Transplants Beyond Oncology With the advances in research today, bone marrow transplants (BMT) are not limited to just oncology patients any more. Physicians and researchers at Children s Mercy are using knowledge gained from bone marrow transplantation to treat other types of cancer, as well as other diseases. One example is a trial currently being conducted by Doug Myers, MD, with neuroblastoma patients. Dr. Myer s trial involves finding ways to use allogeneic transplants of tumor-specific T cells to fight neuroblastoma, says Jignesh Dalal, MD, Associate Division Director for the Section of BMT. Specifically, it involves expanding virus fighting t-cells from the donor, genetically modifying those cells to give them the ability to kill neuroblastoma and infusing them to the child with the tumor. Now the child s system will now have the ability to kill neuroblastoma cells. Beyond oncology, the BMT program at Children s Mercy is finding applications in hematology, auto-immune disorders, immune deficiency disorders and metabolic disorders. Consider the case of children with severe combined immunodeficiency. We can now use BMT to cure these children who have no immune protection, says Dr. Dalal. Using BMT in this way allows for the child to no longer have to spend his or her life in totally antiseptic, isolated environments. Dr. Dalal s team is also using BMT stem cell transplants to replace the defective white blood cells causing chronic granulomatous disease (CGD), an inherited condition that doesn t allow a body to fight bacterial and fungal infections. Similar to several specialties at Children s Mercy, the BMT section is involved in numerous clinical trials. One of the most recent is looking into using data to create ways to better individualize doses and minimize side effects of cytoxan treatments. The scope of bone marrow transplants has widened and high resolution HLA typing, better anti-infective medications and improved supportive care have improved health outcomes after bone marrow transplantation, says Dr. Dalal. Our dedicated transplant team works diligently to ensure that outcomes after bone marrow transplantation at Children s Mercy Hospital are on par with any transplant center nationwide. Hematology/Oncology/Bone Marrow Transplantation Faculty Gerald Woods, MD Division Director, Division of Hematology/Oncology/BMT; Director, Sickle Cell Program; Shannon L. Carpenter, MD, MS Associate Division Director, Section of Hematology; Director, Hemophilia Treatment Center; Associate Jignesh D. Dalal, MD Associate Division Director, Section of Bone Marrow Transplantation; Associate Alan S. Gamis, MD Associate Division Director, Section of Oncology; Keith J. August, MD, MS Pediatric Hematology/Oncology; Director, Leukemia and Lymphoma Program; Associate Director, Experimental Therapeutics in Pediatric Cancer; Assistant Kate Chastain, MD Anne M. Elliott, MD Terrie G. Flatt, DO Director, Spanish Speaking Cancer Program; Assistant Professor of Pediatrics Joy M. Fulbright, MD Director, Adolescent & Young Adult Cancer Program, Survive & Thrive Program, Bone Tumor & Soft Tissue Sarcoma Program; Assistant Kevin F. Ginn, MD Neuro-Oncologist; Director, Brain Tumor Program; Assistant Professor of Pediatrics Erin M. Guest, MD J. Allyson Hays, MD Director, Histiocytic Disorders Program; Assistant Professor of Pediatrics Maxine L. Hetherington, MD Principal Investigator, Children s Oncology Group; Associate Ram V. Kalpatthi, MD Associate Karen B. Lewing, MD Fellowship Program Director; Associate Michelle Manalang, MD Director, Liver Tumor Program; Doug Myers, MD Director, Cellular Therapy Program; Associate Kathleen A. Neville, MD, MS Director, Experimental Therapeutics in Pediatric Cancer; Associate Mohamed A. Radhi, MD Pediatric Hematologist/Oncologist; Director, Medical Student Education; Pediatrics Clerkship Director; Associate Melissa S. Rayburg Jefferson, MD Michael Silvey, DO Mukta Sharma, MD, FAAP, MPH Melanie Villanueva, DO Brian Wicklund, MDCM, MPH Director, Coagulation Medicine Program; Associate Professor of Pediatrics In academic affiliation with the University of Missouri-Kansas City

8 Non-Profit Org. U.S. Postage PAID Kansas City MO Permit #4301 Return Service Requested seth s story seth, 10 years old Seth Smiles Your heart is never prepared to hear the words, Your child has cancer, says Lise Dujakovich of Merriam, Kan. Those words greeted Lise after her son Seth s blood work revealed he had Pre-B Cell Lymphoblastic Leukemia. Lymphoblastic Leukemia is one of the more common cancers we see in Down syndrome patients, says Michael Silvey, MD, Pediatric Oncologist at Children s Mercy. Not only was Seth at an increased risk of leukemia, but he would also be extra sensitive to chemotherapy, which can cause complications. Treatment, which included bone marrow aspiration, a lumbar puncture and port placement, began the day after Seth was diagnosed. The next two and a half years were a whirlwind of admissions, treatments and medical ups and downs, but Seth continued to rally. On November 23, 2012 Seth completed his treatment. Now in fifth grade, Seth is active in Special Olympics sports, including basketball, swimming, track and field and coach-pitch softball. There are simply not enough words to express how grateful we are, Lise says. We love Children s Mercy. How To Refer For transport, inpatient admission or for consult GO MERCY ( ) Call this number 24 hours a day to mobilize the in-house neonatal or pediatric transport teams, consult with a specialist, or admit a patient directly to Children s Mercy Hospital or Children s Mercy South. For Specialty Clinic Appointments (816) or toll free 1 (800) Nurses with our Physician Appointment line can assist you with scheduling clinic appointments for Children s Mercy Hospital, Children s Mercy South, Children s Mercy East and Children s Mercy Northland. PHYSICIAN S UPDATE is produced by Communications and Marketing EDITOR: Shawn Arni ASST. EDITOR: Jennifer Cisar For more information, call Communications and Marketing (816) For more physician news and information, visit our Provider Portal at To read more about Seth s story or view other patient stories visit