Hearing That You Have a Brain Tumor
Transcription
Hearing That You Have a Brain Tumor
Wheeling for Hope is an Alabama based 501(c) 3 non-profit organization incorporated in 2007. Wheeling for Hope founders, board members and all their volunteers are passionate about making a difference in brain tumor research and providing education and support services for patients and their families who are affected by this devastating disease. Wheeling for Hope’s mission is to promote the advancement of brain tumor research and provide education and support services to patients and their families. Our vision, A Cure. Wheeling for Hope relies on support through donations from individuals, businesses, and fundraisers. Donations are tax deductible. Hearing That You Have a Brain Tumor “You have a brain tumor.” After hearing these words, from that moment on, life will be different. These words will impact your life whether you are the patient, a family member, a caregiver, or a friend. Founders and board members of Wheeling for Hope, Inc know on a personal basis the difficult journey that a brain tumor diagnosis places on a patient, family member, caregiver or friend, for all were affected by this devastating disease. My husband, Jay, lost his 10 month battle to an inoperable brainstem astrocytoma at the age of 38. He was a great father of two children, a wonderful husband and friend. He was encompassed with so much love for life that ended too early. Knowing that there is no cure, that there are limited treatment options and resources available for brain tumor patients, and watching someone you love suffer is a helpless feeling. Wheeling for Hope promotes the advancement of brain tumor research and provides education and support services to patients and their families during this difficult time. With the continual commitment in the fight against brain tumors through donations and research, brain tumor patients will have a better quality of life, improved treatment options and more available resources. My deepest thanks to the founding members of Wheeling for Hope, Kim Benos and Karen Braune, Wheeling for Hope’s board members, family, friends, and donors for your support in the fight against brain tumors. We are making a difference! Cathie Robinson Founding member and President Wheeling for Hope Did You Know? • Difficult to treat, brain tumors are a complex and devastating disease due to their location at the control center for thought, emotion and physical function. Brain tumors severely compromise the quality of life. • The incidence rate is increasing with no known cause and no cure. • Brain tumors are the leading cause of solid tumor cancer deaths in children through high school age. • Brain tumors are the second leading cause of cancer deaths in young adults ages 20 to 39. • Brain tumors are the second fastest growing cause of cancer death among those over age 65. • There are over 120 different types of brain tumors. • Brain tumor research is under-funded. ~ Brain Tumor Society Doctors Corner James Markert, M.D. Director, UAB Division of Neurosurgery University of Alabama at Birmingham Dr. Markert’s research interests focus on novel treatments for malignant gliomas and other brain tumors, particularly with the use of biologic agents. He particularly concentrates his efforts on the use of gene therapy and oncolytic viral vectors. These are agents which enter the tumor cells and either produce proteins responsible for killing tumor cells or produce new viruses that kill tumor cells. A combination of approaches has also been utilized. Dr. Markert has conducted research in both the basic science and clinical arenas. Currently, he has two different oncolytic viral therapy protocols open, one of which is actively enrolling. His specialty is clinical trials involving surgical approaches to brain tumor therapy. Many of the trials described are unique in that they are only open to patient enrollment at UAB. L. Burt Nabors, M.D. Division Director of Neuro-Oncology University of Alabama at Birmingham Dr. Nabors’ research interests are focused in three major areas. First, is a basic laboratory effort to understand how the abnormal regulation of genes that are important for the nervous system influence glioma initiation and progression. The second area of interest is the development of methods to better use imaging information such as MRI in brain tumor patients to evaluate tumor processes such as angiogenesis, proliferation and invasion. And logically, the third emphasis is the clinical evaluation of novel therapies for newly diagnosed and recurrent brain tumor patients. Alyssa Reddy, M.D. Director of Pediatric Neuro-oncology University of Alabama at Birmingham The Children’s Hospital of Alabama Dr. Reddy’s research interests involve improving outcome and quality of life for children with brain and spinal cord tumors. Involved in numerous research studies, her particular focus is on Atypical Teratoid/Rhabdoid tumors. She serves as the principal investigator for the first international treatment trial for this tumor type. In addition, she is an active member of the Children’s Oncology Group Brain Tumor Committee, the world leader in running clinical treatment trials for all types of brain tumors. Dr. Reddy also conducts treatment trials for patients with neurofibromas. A new clinical trial soon to open will be available to survivors of brain tumors and other cancers who have attention problems. John Fiveash, M.D. Department of Radiation Oncology University of Alabama at Birmingham Dr. Fiveash has research interests in clinical trials for central nervous system (CNS) tumors and radiation treatment planning. Recently, his research involves clinical trials evaluating 1311- chlorotoxin in gliomas and other tumor types. He collaborates with other investigators at UAB to study death receptor therapy in pre-clinical models of glioma. Plans include a clinical trial based on death receptor therapy. Dr. Fiveash serves as the Co-leader of the Radiation Oncology Committee of New Approaches to Brain Tumor Therapy (NABTT), the medical director of Radiation Oncology for the Gamma Knife, and residency director for the Department of Radiation Oncology. 2 Wheeling For Hope Welcome Dr. Fathallah-Shaykh, M.D., Ph.D. We are excited to announce the addition of a second neuro-oncologist to our Neuro-oncology Program at UAB. Hassan Fathallah-Shaykh, M.D., Ph.D., joined the Department of Neurology as an Associate Professor in the Division of Neurooncology on September 1, 2008. A native of Beirut, Lebanon, Dr. Fathallah earned his M .D. with distinction from the American University of Beirut in 1985. He was a resident in Neurology at the University of Chicago Hospitals and Clinics, and he was also a resident in Internal Medicine at Duke University Medical Center. Afterwards, he completed a fellowship in Neurooncology at the Memorial Sloan-Kettering Cancer Center in New York, NY. Before joining UAB, Dr. Fathallah was as Associate Professor of Neuro-Oncology at Rush University Medical Center in Chicago, IL. In 2006, he was named one of America’s Top Physicians. Dr. Fathallah will be expanding his active research into brain cancer which will allow our Neuro-oncology Program at UAB to increase our clinical trial offerings for patients with brain cancer. Raising Funds For A Cure! Brain Tumor Survivor, Marty Dunn Runs For Wheeling For Hope! In 2005, shortly after the birth of her second child, Marty, of Homewood, AL was diagnosed with an oligodendroglioma. The doctors at UAB removed 40% of her tumor. Searching for a way to raise awareness and funds for brain tumor research, Marty approached Wheeling for Hope to be a recipient of her efforts since Wheeling for Hope benefits local adult and pediatric brain tumor research and patient support services. Marty felt the call to run. She set her goal on running in the Chicago Marathon. After many months of training, she reached her goal and completed the Chicago Marathon. Go, Marty Go! Thank you for your hard work and thank you for being such an inspiration! Get Your Lemonade! Eleven year old, Sarah Elizabeth Hyde of Vestavia Hills, AL lost her grandfather, Dr. James Walters, after his five month battle with a glioblastomamultiforme (GBM). She wanted to make a difference. Sarah Elizabeth held a lemonade stand in memory of her grandfather and raised funds for Wheeling for Hope. Thank you Sarah Elizabeth! BUNKO For Brain Tumor Research! Missi Nastiuk of Hoover, Al, hosted a Bunko night with her friends in memory of her mother, Darlene Nastiuk, who lost her three month battle to a GBM. After an evening of fun, the group donated their winnings to Wheeling for Hope. For The Love Of A Child Zach Fields was diagnosed with a medulloblastoma brain tumor at the age of two and lost his battle with the tumor at the age of three. Zach’s grandfather, Glen Roberts and his mother, Kristy Hendrix of Haleyville, AL wanted to promote awareness about brain tumors and decided to raise funds for Wheeling for Hope’s Annual Family Fun Bike Rides. What a great tribute to Zach! Thank you for your continual support for Wheeling for Hope! Congratulations Claire O’Rear! Claire O’Rear, a junior at the University of Alabama was crowned the 2008 Miss Walker County of Jasper, AL. Claire’s platform for the pageant was raising awareness and funds for brain related disorders in honor of her 19 year - old brother, Winston O’Rear, who has been affected by a dysembryoplastic neuroepithelial tumor (DNET) since 1996 and was treated at Children’s Hospital . Along with her brother Winston, their fundraising efforts raised awareness and funds for brain tumor research. Thank you both for supporting Wheeling for Hope! 3 Sharing Talent A group of local artists in Vestavia Hills, AL, held a Holiday Art Show which featured work in clay, baked goods, jewelry, stationery, floral design, and painting. A portion of their sales were donated to Wheeling for Hope. Thank you for sharing your talents! Dr. Burt Nabors, Karen Braune, Cathie Robinson, Kim Benos, Dr. Alyssa Reddy pictures courtesy of Christy For Wheeling For Hope Donates $100,000 To UAB And Children’s Hospital! After two years of fundraising, Wheeling for Hope presented a $100,000 check to UAB and Children’s Hospital to benefit local adult and pediatric brain tumor research, education, and patient support services. The money was raised by the organization’s Family Fun Bike Rides, including a kids fun zone, arts and crafts, food and an educational tent. Wheeling for Hope thanks all volunteers, donors and supporters for making the event so successful! Upcoming Events Caregiver Training Workshop for caregivers of adults affected by a brain tumor, April 2009 Wheeling for Hope, Dinner for a Cure – Delivering Hope Door to Door, benefiting adult and pediatric brain tumor research and patient support services, May 2009 “Knocking Cancer Out of the Ballpark” Softball Game, benefiting Neuro-Oncology Research Program at Children’s Hospital, Fall 2009 Research Symposiums, Adult and Pediatric Conference Support groups: Brain Buddies- Support group for adults with brain tumors and their caregivers, 3rd Monday of every month, Kirklin Clinic, 5th floor, 10:30 AM -12:00 PM., 205.934.2921. Children’s Hospital Parent Support Group, Thursdays at 5 PM, 4th floor, Children’s Hospital, 205.939.9285 Ways You Can Help Volunteer your time Tell your story Host a fundraising event Donate! Your gifts make progress! Donating is Easy! Visit our website at www.wheelingforhope.org and click on donate or mail a check payable to Wheeling for Hope to Wheeling for Hope, Inc, P. O. Box 660254, Birmingham, AL 35266. 4 Wheeling For Hope Why We Need Your Help Private Brain Tumor Funders Leverage Scarce Research Dollars In the fight against brain tumors, are the unsung heroes of the private organizations. Volunteers raise money to support patient and caregiver education about brain tumors and to help underwrite cancer research to find a cure. Due to efforts by more established groups such as American Brain Tumor Foundation, Brain Tumor Society, National Brain Tumor Foundation, and Pediatric Brain Tumor Foundation, the national awareness about the devastating nature of a malignant brain tumor has improved. These organizations provide funds to support fellowships of newly minted scientists and clinicians to conduct research that, while novel, would be perceived as “high risk” and likely not funded by the National Institutes of Health (NIH) agencies. Over the last twenty years, this focused effort produced a spectacular influx of scientists into the brain tumor research field, far in excess of what would have been expected based on the prevalence of brain tumors compared to the “Big 4”, that is, lung, prostate, breast and colo-rectal cancers. The majority of biomedical research is funded by the various National Institutes of Health and for brain tumor research, the bulk of the grants are awarded by the National Cancer Institute and the National Institute of Neurological Diseases and Stroke. In 1998, Congress agreed to double the NIH budget by 2003 and for the most part that goal was realized. Total NIH funding approached $29 billion, divided among the 16 institutes. Specifically, the NCI budget rose from $2.5 to $4.8 billion a year to support all cancer research activities (Figure 1). Unfortunately, for the last five years, the budgets for the NIH and the NCI have not appreciably changed from the 2003 levels. Congress failed to increase the funding for biomedical research due to many stresses on the federal budget. Consequently, for the past five years, the total annual NCI budget remained relatively constant at $4.8 billion. By comparison, the cost of conducting the war in Iraq has risen to $5.5 billion every 10 days. Biomedical research is a relatively expensive undertaking with 60% of the costs generally used to pay portions of the salaries of the Research Scientists, called Principal Investigators, and their staff, including research technicians, postdoctoral fellows, graduate students and other Research Scientists who serve as Co-Investigators. Biomedical research is such a complex undertaking that the most effective approach in recent years has been to use “teams” of scientists, each with different areas of expertise, to tackle each of the component parts of the problem. However, “Team Science” is a labor-intensive enterprise involving highly trained specialists. Together with the incremental labor costs, the costs of highly specialized research supplies and equipment has risen at a 3.8% pace annually over the last 4 years but the NIH budgets have been relatively constant. The Office of Budget and Management has determined that this “Biomedical Research and Development Price Index” has resulted in a 15% overall loss in current purchasing power since 2004, which effectively represents a billion dollar reduction in today’s dollars (Figure 2). Although the cost to conduct research increased, the amount of funds awarded to each grant was reduced by the NIH in order to continue funding the same number of research projects. Obviously, private funders can have a significant impact by filling the needs created by reduced funding. A typical scenario of funding from NIH will include deletions from the proposed budget of vital components -- a portion of a student’s stipend, a piece of equipment needed to conduct special aspects of the research, or a unique, costly reagent needed for a special molecular biology analysis. Funding awarded by Private Funding groups, such as Wheeling for Hope, can be selectively used by the Principal Investigator to purchase that special resource that will allow the research to advance. Due to stresses on the federal budget and concerns for the national economy, there is little likelihood of increases in NIH funding. Clearly, the role of private organizations can help advance our understanding of how best to cure patients suffering with brain tumors. Yancey Gillespie, Ph.D. Professor of Surgery, Microbiology, and Cell Biology Director of Brain SPORE University of Alabama at Birmingham 5 Wheeling For Hope Helps Fund New Hypoxia Chamber For Brain Tumor Research Brain tumor cells have learned how to cope with adversity. Every cell needs oxygen to produce energy so each cell can survive but brain tumor cells often out-grow the ability of blood vessels to supply all of the oxygen needed. This produces a condition in the tumor called “hypoxia”, which means that the oxygen levels have dropped below 5%. By comparison, atmospheric oxygen is around 21% while oxygen levels that have been measured in normal brain are about 10%. In hypoxia, brain tumor cells will shift their metabolism to a less efficient means of producing energy called “glycolysis”. Hundreds of genes are activated or suppressed when brain tumor cells are shifted from abundant oxygen to low oxygen levels. This condition results in a multitude of changes in almost all of the biochemical processes that control brain tumor cell proliferation, movement, and survival in the face of radiation and chemotherapy. When scientists study brain tumor cells that are maintained outside the body in tissue culture, the tumor cells are exposed to the relatively high level of oxygen (atmospheric or about 21%). Therefore, the environmental conditions in the brain are not the same as in tissue culture and brain tumor cells in the two different environments will behave differently. Funds raised by Wheeling for Hope enabled the Neuro-Oncology Program at the University of Alabama at Birmingham (UAB) to purchase a pair of highly specialized environmental chambers to simulate the concentration of oxygen in the brain. These two “hypoxia” chambers can generate any concentration of oxygen in their enclosed environments and maintain it indefinitely. With regard to oxygen, the brain tumor cells in this controlled environment in tissue culture should now behave as the cells would behave in the brain. For example, these chambers can be set to mimic the low oxygen levels in the tumor to make it even more severe (1% oxygen) or closer to the oxygen levels that have actually been measured in normal brain (10%). One of the chambers is large enough to accommodate a tissue culture incubator and provides a workspace to manipulate the cultured tumor cells using glove ports. A pass-through chamber allows tumor cells to be transported in an enclosed “shuttle” box to the second hypoxia chamber where more specialized studies can be performed under the same restricted oxygen conditions. As a result, tumor cells never get even a whiff of increased oxygen and will act similarly to the hypoxic areas the cells created in the brain. Importantly, these two new additions to the research capabilities of the Neuro-Oncology Research Program are “multi-user” and will accommodate simultaneous experiments by up to 6 different scientists who want to use oxygen levels that more closely resemble those in normal human brain tissue or in brain tumor tissue. This multi-user is critically important since many potential therapeutic agents may have different effects on glioma cells under hypoxic conditions than on those that have unfettered access to oxygen. Research conducted using these two new hypoxia chambers will bring researchers closer to determining which of the biochemical pathways in tumor cells are responsible for resistance to therapy and will identify new strategies to overcome this barrier to effective therapy. Yancey Gillespie, Ph.D. Professor of Surgery, Microbiology, and Cell Biology Director of Brain SPORE University of Alabama at Birmingham UAB Brain Tumor Researchers Participate in The Cancer Genome Atlas The Cancer Genome Atlas Reports First Results of Comprehensive Study of Brain Tumors: Large-Scale Effort Identifies New Genetic Mutations, Core Pathways The Cancer Genome Atlas (TCGA) Research Network, a collaborative effort funded by the National Cancer Institute (NCI) and the National Human Genome Research Institute (NHGRI) of the National Institutes of Health (NIH), today reported the first results of its large-scale, comprehensive study of the most common form of brain cancer, glioblastoma (GBM). In a paper published Sept. 4, 2008, in the advance online edition of the journal Nature, the TCGA team describes the discovery of new genetic mutations and other types of DNA alterations with potential implications for the diagnosis and treatment of GBM. Among the TCGA findings are the identification of many gene mutations involved in GBM, including three previously unrecognized mutations that occur with significant frequency; and the delineation of core pathways disrupted in this type of brain cancer. Among the most exciting results is an unexpected observation that points to a potential mechanism of resistance to a common chemotherapy drug used for brain cancer. More than 21,000 new cases of brain cancer are predicted in the United States this year, with more than 13,000 people likely to 6 Wheeling For Hope die from the disease. GBM, which is the type of brain cancer most often found in adults, is a very fast-growing type of tumor. Most patients with GBM die of the disease within approximately 14 months of diagnosis. The TCGA network analyzed the complete sets of DNA, or genomes, of tumor samples donated by 206 patients with GBM. The work complements and expands upon a parallel study by Johns Hopkins researchers of 22 GBM tumors, which was also published today in the journal Science. “These impressive results from TCGA provide the most comprehensive view to date of the complicated genomic landscape of this deadly cancer. The more we learn about the molecular basis of glioblastoma, the more swiftly we can develop better ways of helping patients with this terrible disease,” said NIH Director Elias A. Zerhouni, M.D. “Clearly, it is time to move ahead and apply the power of large-scale, genomic research to many other types of cancer.” Like most cancers, GBM arises from changes that accumulate in cells’ DNA over the course of a person’s life - changes that may eventually lead to the cells’ uncontrolled growth. However, until recently, scientists have understood little about the precise nature of these DNA changes and their impact on key biological pathways that are important to the development of new interventions. The NCI and the NHGRI initiated TCGA in 2006 to accelerate understanding of the molecular basis of cancer through the application of current genome characterization technologies, including large-scale genome sequencing. TCGA was launched as a pilot program to determine the feasibility of a full-scale effort to potentially systematically explore the universe of genomic changes involved in all types of human cancer. In its Nature paper, the TCGA Research Network describes the interim results of its analyses of GBM, the first type of cancer to be studied in the TCGA pilot. The pioneering work pulled together and integrated multiple types of data generated by several genome characterization technologies from investigators at 18 different participating institutions and organizations. The data include small changes in DNA sequence, known as genetic mutations; larger-scale changes in chromosomes, known as copy number variations and chromosomal translocations; the levels of protein-coding RNA being produced by genes, known as gene expression; patterns of how certain molecules, such as methyl groups, interact with DNA, known as epigenomics; and information related to patients’ clinical treatment. “This type of comprehensive, coordinated analysis of unprecedented multi-dimensional data is made possible by advanced technologies utilized by teams of scientists driven to solve complex questions,” said NCI Director John E. Niederhuber, M.D. “It will now fall to a dedicated cadre of laboratory scientists to turn this important information into new life-saving therapies and diagnostics for cancer.” TCGA researchers sequenced 601 genes in GBM samples and matched control tissue, uncovering three significant genetic mutations not previously reported to be common in GBM. The affected genes were: NF1, a gene previously identified as the cause of neurofibromatosis 1, a rare, inherited disorder characterized by uncontrolled tissue growth along nerves; ERBB2, a gene that is well-known for its involvement in breast cancer; and PIK3R1, a gene that influences activity of an enzyme called PI3 kinase that is deregulated in many cancers. PI3 kinase already is a major target for therapeutic development. The discovery of frequent mutations in the PIK3R1 gene means that GBM patients’ responses to PI3 kinase inhibitors may be dictated by whether or not their tumors have mutated versions of the gene. The TCGA team combined sequencing data with other types of genome characterization information, such as gene expression and DNA methylation patterns, to generate an unprecedented overview that delineated core biological pathways potentially involved in GBM. The three pathways, each of which was found to be disrupted in more than three-quarters of GBM tumors, were: the CDK/cyclin/CDK inhibitor/RB pathway, which is involved in the regulation of cell division; the p53 pathway, which is involved in response to DNA damage and cell death; and the RTK/RAS/PI3K pathway, which is involved in the regulation of growth factor signals. The pathway mapping promises to be particularly informative for researchers working to develop therapeutic strategies that are aimed more precisely at specific cancers or that are better tailored to each patient’s particular subtype of tumor. For example, a patient whose tumor has genetic alterations at one point in the CDK pathway might benefit from a drug that blocks CDK, while patients with mutations at another point in the same pathway might be predicted not to respond to such 7 drugs. Similarly, while some drugs already used for GBM target the RTK pathway, the new findings suggest a need to tailor therapeutic cocktails to particular patterns of mutations in genes involved in that pathway. The three pathways were interconnected and coordinately deregulated in most of the GBM tumors analyzed. Therefore, combination therapies directed against all three pathways may offer an effective strategy, the TCGA researchers state. One particularly exciting finding with the potential for rapid clinical impact centers on the MGMT gene. Physicians already know patients with GBM tumors that have an inactivated, or methylated, MGMT gene respond better to temozolomide, an alkylating chemotherapy drug commonly used to treat GBM. By integrating methylation and sequencing data with clinical information about sample donors, TCGA’s multi-dimensional analysis found that in patients with MGMT methylation, alkylating therapy may lead to mutations in genes that are essential for DNA repair, commonly known as mismatch repair genes. Such mutations then lead to the subsequent emergence of recurrent tumors that contain an unusually high number of DNA mutations, and that may be resistant to chemotherapy treatment. If follow-up studies confirm such a mechanism, researchers say first- or second-line treatments for such GBM patients may involve therapies designed to target the results of combined loss of MGMT and mismatch-repair deficiency. The new findings also may help clinical researchers figure out the best ways to combine alkylating chemotherapy drugs with the next generation of targeted therapeutics. “This represents another major step towards our ultimate goal of using information about the human genome to improve human health,” said NHGRI Acting Director Alan E. Guttmacher, M.D. “It’s thrilling to see what the cancer and genomics research communities can achieve through working together in a collaborative manner. I am confident that this paper is just the first of many exciting results that TCGA will generate.” NCI’s Deputy Director Anna D. Barker, Ph.D., who co-leads the research program, said, “TCGA’s unprecedented multidimensional data on large numbers of high-quality tumor and control samples offer new molecular insights that will most certainly inform the discovery of new cancer interventions.” As in the Human Genome Project, TCGA data are being made rapidly available to the research community through a database, http://cancergenome.nih.gov/dataportal. The database provides access to public datasets, and with required review and approval, allows researchers access to more in-depth data. For more details about The Cancer Genome Atlas, including Q&As, a graphic, a glossary, a brief guide to genomics and a media library of available images, please go to http://cancergenome.nih.gov. ~ Article by The National Cancer Institute Caregiver Corner Caregiver’s Bill of Rights I have the right to take care of myself. This is not an act of selfishness. It will give me the ability to take better care of my loved one. I have the right to seek help from others even though my loved one may object. I know the limits of my own endurance and strength. I have the right to maintain parts of my own life that do not include the person I care for just as if he was healthy. I know that I do everything that I reasonably can do for this person. I have the right to do some things just for myself. I have the right to get angry, be depressed, and express difficult feelings once in a while. I have the right to reject any attempt by my loved one to make me do things out of guilt or anger. (It doesn’t matter if she knows they are doing it or not). I have the right to get considerations, affection, forgiveness, and acceptance for what I do for my loved one, as I offer these in return. I have the right to take pride in what I’m doing. And I have the right to applaud the courage it has taken to meet the needs of my loved one. I have the right to protect my individuality. I also have the right to a life that will sustain me when my loved one no longer needs my full-time help. (Author unknown) 8 Wheeling For Hope Your Gifts Make A Difference! • Resource Guide ~ Through your gifts, Wheeling for Hope is able to provide a 100 page Resource Guide to adult and pediatric patients and their families who are affected by a brain tumor. Patients and families can find valuable information that they need all in one location. • Research ~ Along with donating funds to promote the advancement of brain tumor research, your gifts have made possible the purchase of state of the art lab equipment, such as the Hypoxia Chamber. • Future Plans ~ With your continued support, Wheeling for Hope future plans include • gas vouchers for our patients and families in need of assistance for visits to clinic and treatment • updating the Emily Dorfman Library at Children’s Hospital with current educational and resource material • sponsoring an educational Adult and Pediatric Conference for patients and their families • reprinting of the Resource Guide A Survivor Story It was the third week of Thomas not eating, playing or laughing. All he wanted to do was sleep in my lap all day. We knew this was definitely strange for a nearly 2 year old, especially for our son who laughed at everything. We had already taken Thomas to the doctor, and they were unable to tell us anything, except to give him some vitamins. Desperate to help our son, we decided to take him to see another pediatrician. The next day came, and by this time, Thomas’ skin was dry and he was very lethargic. So lethargic that when the nurse came into the waiting room to get another patient, she looked at Thomas and rushed him right into a room. The doctor immediately came in and looked at Thomas, asleep in my arms, appearing lifeless. Thomas was admitted directly into the hospital for tests. It was about 11 am and Thomas was asleep, now in a bed in his hospital room. He slept all day as the nurses came in and out drawing blood and taking vital signs. I was so worried because he still wasn’t waking up, but was comforted when the nurses said that his vital signs were ok. Now, it was 10:30 that night and Thomas was still sleeping. The doctor walked in with a confused look on his face and said, “If I consulted with another doctor about this case and all I have are these tests results, I would say that there is nothing wrong, but looking at this child, something is very wrong.” An MRI was ordered “to see what the brain is doing.” Thomas went for the MRI. Shortly after the test, the doctor walked in with a disturbing look on his face. He took a deep breath and said, “The results of the MRI show a brain tumor the size of a baseball on the right side.” Brain tumor, not my child! He has never been sick until now. What was this doctor talking about? The doctor continued to say that he had consulted with doctors at Children’s Hospital of Alabama in Birmingham and they were sending a team to get Thomas. The team from Children’s Hospital arrived and airlifted Thomas to Birmingham. We arrived at the hospital three hours later and Thomas already had surgery. The doctor explained that he removed 90% of the tumor, and that our son would need to receive chemotherapy to remove the remaining 10%, and he would also be in the hospital for a while. This was the first day of many to come for us at Children’s Hospital. Over the next few days, we met many staff members. The team responsible for Thomas’ care was awesome. Dr. Reddy and Dr. Hilliard immediately made themselves available for us to ask questions. They made sure they explained in detail, what would be taking place over the next year or so. This was a difficult time for all of us, but the staff made sure that we were ok. Thomas received chemotherapy for about a year. The good news is that he does not remember what happened to him. Now, 9 at 11 years old, he is in the 6th grade, making good grades, and a star football player. We are eternally grateful to so many people at Children’s Hospital. They saved our son’s life and we will never forget them! Dee Atlanta, GA Wheeling for Hope is delighted to include this success story and the hope that it brings to those who are affected by a brain tumor. This story is one of the many that our organization is hoping can occur more often by supporting research and patient support services. Cathie Robinson, President Wheeling For Hope Gratefully Acknowledges The Generous Support Of Our Donors And Supporters. Our research programs and patient support services depend upon you. THANK YOU!!! Tim and Lynn Aaron David Boyd Coastal Consulting and Products John Edwards Victor and Michelle Adamo Mary Laurie Bracken Melony Colburn W. 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