Patient Information
Caring For Your Children
Some of the scariest words a parent can hear are, "Your child has cancer." Some of the most reassuring are, "You're going to Johns Hopkins."
Our physicians are worldwide leaders in the fight against childhood cancer. At Johns Hopkins, your child will receive state-of-the-art treatment based on cutting-edge research. You can be sure you have made the right medical choice.
How do we do it?
We are motivated by each and every child we meet. The cure rate for childhood cancer is growing, but even one child is one too many. We are strengthened by our many donors who have made Pediatric Oncology their mission and their passion, knowing that at Johns Hopkins their dollars will have the greatest impact on a cure. And we are inspired by the courage of our patients and the families who have chosen to entrust their children to our care.
Services and Programs
At the Johns Hopkins Kimmel Cancer Center, Pediatric Oncology division we feel it is important that the more patients know about their child's cancer and its treatment, the more equipped they are to actively participate in their care. So, we have created many services and programs to help you during this time. Read more about:
Specialized Clinical Programs
The pediatric oncology division at the Johns Hopkins Sidney Kimmel Comprehensive Cancer Center specializes in many different clinical programs. Explore what each program offers and provides in each of these sections:
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The Pediatric BMT program at Hopkins is recognized as a Children’s Oncology Group (COG) designated transplant center. A unique aspect of the program is its seamless integration into the larger, nationally recognized adult bone marrow transplant program at the Johns Hopkins Kimmel Cancer Center headed by Dr. Richard Jones. The combined program has Foundation for the Accreditation of Cellular Therapy re-accreditation and shares the following: a common stem cell processing facility, meetings to discuss relevant patient issues, clinical protocols, and resources for data collection and monitoring.
Learn more about the Pediatric Blood and Marrow Transplant Program.
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The Johns Hopkins Kimmel Cancer Center in Baltimore is one of only three centers in the country to evaluate and manage large numbers of patients with rare histiocytic disorders, a group of diseases that occur when the body produces too many white blood cells called histiocytes that can cause organ damage and tumor formation. These disorders include Langerhans Cell Histiocytosis (LCH), Rosai-Dorfman Disease (RDD), Erdheim-Chester Disease (EDC), Juvenile Xanthogranulomatous Disease (JXD), Hemophagocytic Lymphohistiocytosis (HLH) and Histiocytic Sarcomas.
The Histiocytic Disorders Program brings together a multidisciplinary team of experts, including oncologists, dermatologists, neurosurgeons and general surgeons skilled in treating children with these disorders. Physicians with the program work closely with specialists at our Bone Marrow Transplant Program to co-manage patients who would benefit from bone marrow transplantation. They also work with specialists who treat the disorders in adult patients.
In addition, experts with the program conduct research in histiocytosis, including developing new drugs to treat patients with these conditions. Ongoing clinical trials include a bone marrow transplantation protocol that is specific to patients with histiocytic disorders, and a study of an experimental medication that inhibits the BRAF gene for patients with histiocytic disorders who do not respond to chemotherapy. BRAF is involved in directing cell growth; it has been shown to be altered in some human cancers. For more information, contact Elias Zambidis, MD, PhD, at [email protected].
For research inquiries, call 410-502-4997.
Read more about histiocytic disorders.
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CAR-T Cell Therapy Program (See Leukemia)
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Leukemia is the most common form of cancer in children. At the Johns Hopkins Kimmel Cancer Center in Baltimore, our multidisciplinary team of experts is highly skilled in treating children with these cancers. Our leukemia experts work closely with specialists at our Bone Marrow Transplant Program to co-manage patients who would benefit from bone marrow transplantation. They also work with specialists who treat leukemia in adult patients, ensuring a seamless transition and state-of-the-art care for teens and young adults with leukemia.
At Johns Hopkins, our leukemia doctors are also laboratory scientists working to develop new therapies for leukemia and bring them to clinical trials. Our experts are leaders in both the Children’s Oncology Group (COG) and the Therapeutic Advances in Childhood Leukemia & Lymphoma (TACL) consortia, ensuring that the most promising new therapies are available for our patients.
Read more about leukemia.
CAR-T Cell Therapy Program
What is Cancer Immunotherapy?Cancer immunotherapy is a treatment which uses a patient’s own immune system to fight cancer. CAR-T cell therapy is a type of cancer immunotherapy that has been developed to treat B-cell leukemia. It involves genetically modifying certain immune cells to be able to recognize and destroy leukemia cells.
What are CAR-T cells and how do they work?
KYMRIAH (tisagenlecleucel) is the first FDA approved CAR-T cell therapy in the U.S. KYMRIAH can be used to treat patients up to 25 years old who have B-cell precursor acute lymphoblastic leukemia (ALL) that is refractory or in second or later relapse. This therapy involves taking your child’s blood in order to obtain T-cells, which are a certain type of immune cell. T-cells are naturally designed to attack foreign cells in the body. After your child’s blood is collected, it will be frozen and sent to the lab. The lab separates the T-cells and then genetically modifies them. This process involves giving the T-cells the ability to recognize a protein called CD19, which is present on your child’s cancerous B-cells. After genetic modification is complete, the T-cells have the power to recognize the cancerous B-cells, attach to them, and destroy them. These enhanced T-cells, now CAR-T cells and named KYMRIAH, are then given back to your child in order to carry out their new function against the leukemia cells.
What to Expect
Johns Hopkins Kimmel Cancer Center's Division of Pediatric Oncology is one of the few Cancer Centers throughout the United States administering KYMRIAH to patients. Johns Hopkins pediatric oncologists see patients in Johns Hopkins Children’s Center. Once your child is eligible to receive treatment, they will need to be admitted to the hospital when KYMRIAH is administered for safety reasons. There are potential side effects that could occur, so we want to make sure your child is closely monitored during that time. After discharge, we will continue to follow your child during regularly scheduled clinic visits.
Referral Information
To learn more about CAR-T Cell Therapy at Johns Hopkins for your child, please call 1-855-434-1928 and/or send an email to [email protected].
Learn More About Car-T Cell Therapy
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The Life Clinic’s faculty and staff have years of experience monitoring and treating any long-term complications associated with chemotherapy, radiation, surgery and other treatments used for childhood cancer and non-malignant diseases. Their goal is to identify and treat any emerging medical issues well before patients experience any symptoms, as well as to promote good health through discussions about exercise, diet, stress management and other topics. Patients may remain in the program throughout their lifespan.
Learn more about the Long-Term Survivors Program.
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Lymphomas, including Hodgkin and non-Hodgkin disease, are among the most common cancer types in children. About 90 percent of patients can be cured by available therapies. At the Johns Hopkins Kimmel Cancer Center in Baltimore, our multidisciplinary team of experts, including pediatric medical oncologists and radiation oncologists, are highly skilled in treating children with these cancers. Our pediatric medical oncologists specialize in identifying patients who potentially can be cured with chemotherapy alone, sparing some the need for radiation treatments.
Physicians with the program work closely with specialists at our Bone Marrow Transplant Program to co-manage patients who have relapsed and would benefit from bone marrow transplantation. They also work with specialists who treat lymphomas in adult patients, offering easy access to clinical trials not offered in many pediatric medical centers.
In addition, experts with the program conduct research incorporating novel drugs in the treatment of lymphomas. Our physicians are leaders in both the Children’s Oncology Group (COG) and the Therapeutic Advances in Childhood Leukemia & Lymphoma (TACL) consortia, ensuring that the most promising new therapies are available for our patients.
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The management of children with brain and spinal cord tumors is extremely complex. Pediatric brain cancers can be stubborn, and typically do not respond to traditional chemotherapy and radiation. in part because the brain is somewhat protected from medications (the blood-brain barrier), in part because surgery in the brain has to be quite refined to minimize injury to brain tissue, and in part because radiation treatment to the brain can cause injury to normal brain tissue. To successfully manage and treat children with these tumors it takes a team of practitioners specifically focused on this area. The multidisciplinary Pediatric Neuro-Oncology program at the Johns Hopkins Kimmel Cancer Center in Baltimore is noted for the comprehensive care that is provided to all children diagnosed with a brain or spinal cord tumor and their families. Each year our practitioners treat between 80-100 children affected by these cancers tumors. A similar number of children's cases are reviewed as second opinions sent from around the world.
Subspecialists from a variety of disciplines at Johns Hopkins participate in a weekly tumor pediatric neuro-oncology conference, where each child’s case is presented and discussed in-depth, and an individually tailored treatment plan is worked out. These conferences include experts from the following areas:
- Pediatric neuro-oncology
- Pediatric neurosurgery
- Pediatric radiation oncology
- Pediatric neurology
- Neuropathology
- Neuroradiology
- Neuro-ophthalmology
- Neuropsychology
- Social work
Neuro-Oncology Program Features
Experts with the program have access to rich resources, such as:
- State-of-the-art neurosurgical technologies including 3D navigation systems and intraoperative MRI technology
- Radiation therapy technologies that allow for the most precise delivery of radiation in an effort to spare normal brain tissue from the impact of radiation treatment. These include intensity-modulated radiation therapy (IMRT), which allows physicians to manipulate radiation beams to the shape of a tumor, and gamma knife, which focuses precise beams of radiation directly to a tumor.
- Access to the most innovative clinical trials for children with newly diagnosed brain tumors as well as for those children requiring further treatment should the brain or spinal cord tumor return or progress
- Access to other services as required including pediatric neurology, neuro-ophthalmology and endocrinology
- Neuropsychological assessment to gauge the impact of the tumor and treatment on the ongoing development of the child
- Ready access to social workers, child life specialists and others who make certain that all aspects of the child’s life are attended to during and after treatment
Research
Cure will not come for many children with brain and spinal cord tumors without studying these tumors in the laboratory and using that gained knowledge to identify and test new treatments. Some of our brain and spinal tumor experts also are laboratory scientists working on new discoveries to better treat children with brain and spinal tumors. Physicians with the program have access to researchers deep within the fields of neuroscience, neuropathology and tumor immunology, and work to bring new discoveries to patients as swiftly as possible.
Dr. Kenneth Cohen and colleagues are progressive in leading and participating in early-phase clinical trials offering patients access to the latest therapeutic advances. These trials include the newest molecularly targeted therapies, often being used for the first time in children with brain and spinal cord tumors.
Ongoing efforts include studying different mechanisms to deliver treatments to the brain, discovering new drug treatments for brain and spinal cord tumors, and learning how certain switches within the brain turn on tumor suppressor genes. These are genes that put the brakes on fast-growing cancer cells.
One unique program run by Dr. Cohen is the Pilomyoxid Astrocytoma (PMA) Registry. Johns Hopkins experts were the first to identify this variant of a low-grade brain tumor in children. They now coordinate the registry to gather information regarding the natural history and response to treatment for children with PMAs.
Dr. Cohen is a member of the brain tumor steering committee and co-chair of the high-grade glioma committee for the Children’s Oncology Group (COG).
Dr. Eric Raabe leads a laboratory team of graduate students, post-doctoral fellows and research assistants focused on finding new therapies for the most difficult to treat brain tumors. He is investigating metabolic changes downstream of key genetic changes in high-risk brain tumors. He has active research projects in poor-prognosis medulloblastoma, atypical teratoid/rhabdoid tumor, and aggressive glioma, including glioblastoma and recurrent pilocytic astrocytoma. He developed one of a handful of diffuse intrinsic pontine glioma (DIPG) cell lines, and is using this cell line in a collaborative effort through the COG to identify new therapies for DIPG, which is one of the most devastating childhood cancers. He hopes the research will lead to an understanding of what causes DIPG to form, and what allows DIPG to continue growing, in an effort to find medications that target the mutations. Read more.
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Sarcoma is a challenging cancer that requires the expertise of many specialists. The Johns Hopkins Kimmel Cancer Center is the only cancer center in the midaltantic region that has experts from every specialty involved in the treatment of sarcoma together in one place to evaluate patients and to recommend a treatment plan.
The biology of sarcomas is complex, with nearly a third of patients diagnosed with advanced cancers that are best treated by an experienced team. Unique clinical plans developed from the latest research findings position the Kimmel Cancer Center as a leader in sarcoma treatment and research.
Pediatric oncologists, medical oncologists, orthopedic surgeons, radiation oncologists, radiologists, and other experts see patients in a single day visit. Collaborations with the Bloomberg~Kimmel Institute for Cancer Immunotherapy and the only bone marrow transplant program that has overcome the rejection barrier means pediatric patients have access to the same therapies that are leading to unprecedented responses in adult cancer patients.
Having all of the experts together in one place allows for coordination of care—timing surgery, drug therapies and other treatments to better care for patients.
Everything a sarcoma patient needs is available at the Kimmel Cancer Center.
Learn more about:
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Sickle cell disease is an inherited blood disorder in which cells containing hemoglobin (a protein in red blood cells that carries oxygen to the tissues of the body) form in the shape of a sickle, or crescent, instead of a disc scape. These sickle cells tend to cluster together, and cannot easily move through the blood vessels. The cluster can cause blockages in small arteries or capillaries, stopping the movement of healthy, normal oxygen-carrying blood. These blockages can cause painful, damaging complications.
Learn more about the Sickle Cell Transplant Program.