When your child is diagnosed with leukemia or lymphoma, he or she will require prompt expert evaluation and initiation of therapy that will be unique to his or her condition. Cleveland Clinic Children’s pediatric leukemia & lymphoma team includes several experienced pediatric hematologists, oncologists, and a pediatric oncology nurse practitioner, who work closely with other pediatric departments within Cleveland Clinic Children’s to determine the best course of treatment for your child. The leukemia/lymphoma clinical care coordinator will act as the team’s quarterback, facilitating patient visits and serving as the first point of contact for patients and their families. The leukemia/lymphoma team also includes a dedicated pediatric social worker to help families navigate through diagnosis and treatment.
Pediatric patients receiving treatment for leukemia or lymphoma at Cleveland Clinic Children’s will typically be seen by the primary members of their core team during each clinic visit. This allows patients to establish strong and long-lasting relationships with their caregivers. In addition to the individual medical attention from their primary oncologists, the patients will benefit from the collective expertise of child life, music and art therapy, and behavioral health specialists available to the patients on a daily basis. The leukemia/lymphoma team collaborates closely with the Blood and Marrow Transplantation team, to offer patients extended treatment options beyond chemotherapy.
Your child’s treatment group will remain actively involved in the oversight of all other patient care, discussing patients’ needs and treatment on a regular basis. Each week, the team of physicians, nurse practitioners, clinical care coordinators and social workers will review the list of patients currently on therapy to makes plans for the upcoming week and month to ensure well-coordinated care.
What We Treat
The pediatric leukemia/lymphoma team treats a number of blood cell - derived disorders. Some of the common conditions we treat are:
Acute Lymphoblastic Leukemia (ALL)
Leukemia is a type of cancer that takes origin from immature white blood cells that otherwise would transform into cells called lymphocytes. Acute Lymphoblastic Leukemia is the commonest type of leukemia in children (~80%). Normally, white blood cells participate in immune defense of the body from infections. In children with acute leukemia, immature white blood cells multiply without control, and cannot maintain their main function of protecting from infections. Acute Lymphoblastic Leukemia starts in the bone marrow, and shortly after spreads through the entire body, which results in such symptoms as pallor, enlarged lymph nodes, fever, pain, malaise, loss of energy and appetite. There symptoms may be vague. Diagnosis of leukemia is made by analyzing blood and bone marrow under a microscope. Treatment of ALL starts with chemotherapy. Some children may need additional type of treatment such as immunotherapy or stem cell transplantation. Surgery does not have any role in the treatment of ALL.
Acute Myeloid Leukemia (AML)
Acute Myeloid Leukemia is the second most common type of leukemia in children (~15%). It originates from progenitors of other important normal blood elements, such as platelets and red blood cells. Symptoms of acute myeloid leukemia are very similar to the ones seen in children with acute lymphoblastic leukemia; however, it may present as swollen gums or bluish bumps on skin. It is impossible to distinguish AML from ALL based in common complaints. The diagnosis is also made by looking at blood and bone marrow cells under the microscope that is followed by other, very complex laboratory tests. Intensive chemotherapy is used to treat AML. Stem cell transplantation is used, too. Neither surgery nor radiation therapy plays a role in the treatment of AML.
Chronic Myeloid Leukemia (CML)
Chronic myeloid leukemia (CML), is rather an infrequent type of pediatric leukemia (<5%) that starts in a certain kind of blood cells called granulocytes. It also begins in the bone marrow, from the cells that already passed several stages of development; in other words, these cells are not as immature as in patients with AML or ALL. At the same time, the CML cells cannot complete their full transformation into mature granulocytes, which are used by the body to fight bacterial infections. The transformation of CML is linked to a particular genetic breakdown. Targeting this genetic breakdown with certain medicines (which is not chemotherapy) blocks uncontrolled multiplication of immature granulocytes. Both chemotherapy and stem cell transplantation may also be used to treat CML.
Juvenile myelomonocytic leukemia (JMML)
Juvenile myelomonocytic leukemia is another infrequent type (<5%) of leukemia, which our pediatric leukemia/lymphoma team can treat with confidence. It commonly affects children younger than 4 years of age. This type of leukemia is commonly associated with unique genetic changes that the team will have to look for in order to establish the diagnosis. While chemotherapy can be used to treat this leukemia, the patients frequently require surgery to remove their spleen. In order to be cured, the stem cell transplantation will have to be done as an essential part of the therapy.
Hodgkin lymphoma is a type of cancer that commonly originates in lymph nodes. Hodgkin lymphoma is the commonest type of lymphoma in children older than 9. It frequently manifests as a lump on the neck, above the collar bone (frequently on the left side), or chest. The lumps are frequently painless, and hard to palpation. Many patients may have intermittent fevers, fatigue, drenching night sweats and significant weight loss. Some patients may experience unexplained shortness of breath and cough. The diagnosis is made by taking a small sample from the tumor (called a biopsy) and studying it under a microscope. This type of lymphoma is very curable; chemotherapy, immunotherapy and radiotherapy are frequently used to treat patients. Some patients may require stem cell transplantation, especially if lymphoma returned following completion of main course of therapy, or did not respond completely to front-line therapies. Surgery plays a minimal role, and only for a particular subtype of Hodgkin Lymphoma.
Non-Hodgkin lymphoma is another type of blood cell malignancy outside of bone marrow. This is a very diverse group of cancers that commonly affects young children, but is also common in adolescents. The non-Hodgkin lymphoma may develop in any part of the body containing lymphatic tissue, playing an important role in immune defense. Non-Hodgkin lymphoma presents as a rapidly enlarging lump on the lower face, neck, chest, or abdomen. The non-Hodgkin lymphoma frequently spreads to bone marrow and central neural system. This type of lymphoma is more commonly associated with generalized malaise, pain, and flu-like symptoms. The diagnosis is also made by performing a biopsy of the tumor, bone marrow biopsy as well as puncture of spinal canal to study fluid surrounding the brain and spinal canal. Surgery may play role in localized lymphoma; regardless, patients require aggressive chemotherapy, commonly combined with different kinds of immunotherapy. Some patients may benefit from stem cell transplantation.
Langerhans Cell Histiocytosis (LCH)
Langerhans cell histiocytosis (LCH) is a rare type of cancer that begins in LCH cells. LCH cells are a type of immune cells which assist other immune cells to fights infection. Sometimes, LCH cells develop genetic breakdowns as they form. These changes may make the LCH cells multiply uncontrollably. This causes LCH cells to build up in certain parts of the body (skin, lymph nodes, bones, liver, spleen), where they can cause damaging effects. LCH may occur at any age, but is most common in young children. The diagnosis is made by a biopsy of the concerning lesion, to study it under a microscope. Treatment of LCH in children includes surgery and chemotherapy, as well as use of special drugs that uniquely target LCH cell-specific genetic breakdowns.
Lymphadenopathy is an abnormal enlargement (size greater than 1.5-2 cm) of lymph nodes anywhere in the body. It may be a painless and an accidental finding, or associated with malaise, fever, pain, or changes on the skin that covers enlarged lymph nodes. As the symptoms are rather non-specific, it is very important to set up proper evaluation of the lymph node enlargement that lasts for more than three weeks.
Post-Transplant Lymphoproliferative Disorder (PTLD)
PTLD is a common complication in patients received solid organ transplant (kidney, heart or liver), or allogeneic stem cell transplant (cells from a donor). PTLD results from a rapid increase in number of B lymphocyte immune cells in lymphoid tissues in different sites of the body. In most cases, PTLD is caused by Epstein-Barr virus infection. It is also common in patients receiving immune suppressive therapy after organ or stem cell transplantation. Frequently, PTLD can present as painless, enlarged lymph nodes, with or without generalized malaise, fever, night sweats and weight loss. In some patients PTLD will evolve into lymphoma. To properly establish diagnosis, the enlarged lymph node biopsy has to be performed. Treatment strategy depends upon underlying condition; some patients will be treated by lowering immune suppression, whereas others will require certain type of immune therapy to destroy B cells harboring Epstein Barr virus. Patients not responding to these treatments, or if PTLD has cancerous features, may need to be treated with chemotherapy or radiation, like lymphoma.
Lymphadenopathy is an abnormal enlargement (size greater than 1.5-2 cm) of lymph nodes anywhere in the body. It may be a painless and accidental finding, or associated with malaise, fever, pain, changes on skin that covers enlarged lymph nodes. As the symptoms are rather non-specific, it is very important to set up proper evaluation of the lymph node enlargement lasts for more than 3 weeks.
Splenomegaly is an abnormal enlargement on spleen, an organ that participates in production and turnover of blood cells. It is also an important part of immune system. Spleen enlargement may or may not produce any symptoms, depending upon the cause. Common causes of spleen enlargement are infections, leukemia and lymphoma. Commonest symptom related to spleen enlargement is pain on left side of the abdomen; however, in many children is produces no specific symptoms, and may come with fever, malaise, weight loss, easy bruising. Treatment will depend upon main illness causing spleen enlargement.
Lynn Butler, RN
Leukemia/Lymphoma Care Coordinator
Milvon Wright, MSW, LSW
Leukemia/Lymphoma Social Worker
The Children's Oncology Group has nearly 100 active clinical trials open at any given time and more than 90% of children with cancer are cared for at a COG site. These trials include front-line treatment for many types of childhood cancers, studies aimed at determining the underlying biology of these diseases, and trials involving new and emerging treatments, supportive care, and survivorship.
Below is a list of open leukemia/lymphoma clinical trials available at Cleveland Clinic Children’s Department of Pediatric Hematology, Oncology, and Blood and Marrow Transplantation. This list is constantly changing, so please contact COG Principal Investigator, Dr. Aron Flagg at 216.444.3866.
- COG AALL0932: Treatment of Patients with Newly Diagnosed Standard Risk B-precursor Acute Lymphoblastic Leukemia
- COG AALL1131: a Phase III Randomized Trial for Newly Diagnosed High Risk B0precursor Acute Lymphoblastic Leukemia (ALL) Testing Clofarabine (IND# 73789, NSC# 606869) in the Very High Risk Stratum
- COG AALL1231: A Phase III Randomized Trial Investigating Bortezomib (NSC# 681239; IND# 58443) on a Modified Augmented BFM (ABFM) Backbone in Newly Diagnosed T-Lymphoblastic Leukemia (T-ALL) AND T-Lymphoblastic Lymphoma (T-LLy)
- COG AALL1331: Risk-Stratified Randomized Phase III Testing of Blinatumomab (IND# 117467, NSC# 765986) in First Relapse of Childhood B-Lymphoblastic Leukemia
- COG/Incyte AALL1521: A Phase 2 Study of the JAK1/JAK2 Inhibitor Ruxolitinib with Chemotherapy in Children with De Novo High-Risk CRLF2-Rearranged and/or JAK Pathway-Mutant Acute Lymphoblastic Leukemia
- COG AALL15P1: A Groupwide Pilot Study to Test the Tolerability and Biologic Activity of the Addition of Azacitidine to Chemotherapy in Infants with Acute Lymphoblastic Leukemia (ALL) and KMT2A (MLL) Gene Rearrangement
- COG AALL1631: International Phase 3 Trial in Philadelphia Chromosome-Positive Acute Lymphoblastic Leukemia Ph+ ALL Testing Imatinib in Combination with Two Different Cytotoxic Chemotherapy Backbones
- COG AAML1331: A Phase III Study for Patients with Newly Diagnosed Acute Promyelocytic Leukemia (APL) Using Arsenic Trioxide and All-Trans Retinoic Acid
- COG AAML1421: A Phase ½ Study of CPX-351 (NSC# 775431, IND# 129443) Alone Followed by Fludarabine, Cytarabine, and G-CSF (FLAG) for Children with Relapsed Acute Myeloid Leukemia (AML)
- COG AAML 1531: Risk-stratified Therapy for Acute Myeloid Leukemia in Down Syndrome
- COG AHOD1331: A Randomized Phase 3 Study of Bretuximab Vedotin (SGN-35, IND# 117117) for Newly Diagnosed High-Risk Classical Hodgkin Lymphoma (cHL) in Children and Young Adults
- COG ALTE11C1: Longitudinal Assessment of Ovarian Reserve in Adolescents with Lymphoma
- COG APEC1621: NCI-COG Pediatric MATCH (Molecular Analysis for Therapy Choice)
- COG ANHL 12P1: A Randomized Phase 2 Trial of Brentuximab Vedotin (SGN35, NSC# 749710), or Crizotinib (NSC#749005, commercially labeled) in Combination with Chemotherapy for Newly Diagnosed Patients with Anaplastic Large Cell Lymphoma (ALCL) IND # 117117
- COG AALL1621: A Phase 2 Study of Inotuzumab Ozogamicin (NSC# 772518, IND# 133494) in Children and Young Adults with Relapsed or Refractory CD22+ B-Acute Lymphoblastic Leukemia (B-ALL)
Members of our leukemia/lymphoma team can be seen at Cleveland Clinic’s Main Campus:
Cleveland Clinic Main Campus
9500 Euclid Ave
S Building, 2nd Floor
Cleveland, OH 44195
For information or to make an appointment, please call 216.444.5517.