Histiocytosis Treatment Program

Histiocytosis is a rare blood disease caused by abnormal increase in the number of immune cells called histiocytes. These cells cluster together and can attack the skin, bones, lung, liver, spleen, gums, ears, eyes, and/or the central nervous system. In some cases, the disease is limited to one area of the body and spontaneously regresses and in other cases, histiocytosis spreads to many organs and can be chronic and debilitating. Although treated at the Hyundai Cancer Institute at CHOC Children’s, histiocytosis is not technically a cancer. But, because it is so similar to cancer, it is primarily treated by oncologists with chemotherapy and/or steroids. The Histiocytosis Treatment Program at the Hyundai Cancer Institute at Children’s has brought together two of the country’s leading histiocytosis specialists. In fact, the Cancer Institute is one of the top histiocytosis referral centers in the Southwest. When a patient cannot travel to us, our experts frequently advise and collaborate with physicians at other institutions. Our multidisciplinary team prides itself on keeping up on the latest trends in treatment but presenting their findings on histiocytosis at international conferences.

What We Treat

According to Histiocytosis Association of America, the majority of people diagnosed with histiocytosis are children under the age of 10. Our specialists treat all forms of histiocytosis including but not limited to:

  • Langerhan’s cell histiocytosis (LCH)
  • Hemophagocytic lymphohistiocytosis (HLH)
  • Juvenile Xanthogranuloma (JXG)

Nurse talking to family in lobby

Meet the Doctors

The Histiocytosis Treatment Program at CHOC Children’s is a multidisciplinary team of nationally recognized medical and surgical experts who treat children and adolescents with histiocytosis. The program is led by Elyssa Rubin, M.D. and Lilibeth Torno, M.D.

Elyssa Rubin MD

Dr. Elyssa Rubin

Lilibeth Torno MD

Dr. Lilibeth Torno

Dr. Elyssa Rubin is board-certified in pediatrics and pediatric hematology/oncology. She completed her fellowship in pediatric hematology/oncology at Children’s Hospital of Orange County and did her pediatric internship and residency training at Kaiser Permanente Los Angeles Medical Center. Dr. Rubin attended medical school at the Sackler School of Medicine, NY State/American Branch in Tel Aviv, Israel.

Dr. Lilibeth Torno is board-certified in pediatrics and pediatric hematology and oncology. Dr. Torno completed her fellowship training at Children’s Hospital of Los Angeles and completed her residency at CHOC. She attended medical school at University of Santo Tomas, Manila, Philippines. Dr. Torno also speaks Filipino.

Learn more about our exceptional nurses, social workers, psychologists, dietitians, nurse practitioners, child life specialists, case coordinators, and more at the Cancer Institute.

Clinical Trials and Research

Two months after their son Ricky was born on Dec. 6, 2012, Richard Alcedo and his wife, Wendy, noticed he was getting small bumps on his face. They took Ricky to several doctors until a dermatologist did a skin test and diagnosed him with JXG (juvenile xanthogranuloma), a type of histiocytosis. JXG is an extremely rare  disease that even in its common form affects only one in 1 million children, typically those 10 or younger. Tests confirmed that Ricky not only had JXG, but systemic JXG—a rare form of the disease that afflicts only one in 10 million children.

Dr. Lillibeth Torno is one of 10 physicians at the Cancer Institute who are immersed in such cutting-edge research as molecular and genetic profiling to find out what triggers such diseases as JXG—and what can be done to cure them. The histiocytosis experts at the Hyundai Cancer Institute are leaders in the treatment of histiocytosis with access to early-stage clinical trials and the latest research on treatments

Father holding young son

Know the basics about life with a child with histiocytosis.

We understand that a histiocytosis diagnosis is overwhelming. To make the treatment process a little less confusing, the Histiocytosis Team has put together a list of frequently asked questions and answers to make the process a little easier to discuss with family and friends. The information should not replace that provided by the child's health care team.

Pathology results take at least three business days from the biopsy date. If pathology is difficult then it might be sent to another facility, which can take up to another week for their final diagnosis.
A bone marrow transplant is not the first line of therapy with histiocytosis. Extreme cases of histiocytosis may be treated with an allogenic bone marrow transplant.
Children on chemotherapy do not need to stay in the house. It is good for them to go outside and get fresh air. Just remember to use sunscreen and hats because chemotherapy can make the patient’s skin sensitive. It is also important for the child to wear a mask when in crowded public places or when coming to and from the clinic or hospital. Learn more about the precautions to take while undergoing chemotherapy.
Patients on chemotherapy do not need to be on a strict diet; a normal, well-balanced diet is recommended. Patients should avoid eating rare foods like sushi and rare meats. Fruits and vegetables should be wash and caregivers should carefully watch expiration dates on food items.
There is no need to get rid of the family pet unless it is a reptile or a bird. Because reptiles and birds may carry salmonella, we recommend having another family member or friend take care of the pet while the patient is on chemotherapy. Children receiving chemotherapy should not clean up after or feed any family pet. We also do not recommend getting a new dog or pet while the patient is receiving treatment.
After treatment is completed, the patient will come to clinic every month for a doctor’s visit for the first year off therapy. Scans will be done every three months for the first year off therapy.