AFP (alpha-fetoprotein): A protein normally produced by a fetus. Alpha-fetoprotein levels are usually undetectable in the blood of healthy adult men or women (who are not pregnant). An elevated level of alpha-fetoprotein suggests the presence of either a primary liver cancer or germ cell tumor.
ANC (absolute neutrophil count): The number of white blood cells (WBCs) that are neutrophils. ANC is not measured directly; it is derived by multiplying the white blood count (WBC) by the percent of neutrophils in the differential WBC count. The percent of neutrophils consists of the segmented (fully mature neutrophils) + the bands (almost mature neutrophils). The normal range for the ANC = 1.5 to 8.0 (1,500 to 8,000/mm3).
Cancer: A term for diseases in which abnormal cells divide without control and can invade nearby tissues.
Chemotherapy: Chemotherapy is a cancer treatment that uses drugs to stop the growth of cancer cells, either by killing the cells or by stopping them from dividing. When chemotherapy is taken by mouth or injected into a vein or muscle, the drugs enter the bloodstream and can reach cancer cells throughout the body (systemic chemotherapy). When chemotherapy is placed directly into the cerebrospinal fluid, an organ, or a body cavity such as the abdomen, the drugs mainly affect cancer cells in those areas (regional chemotherapy). Treatment using more than one anticancer drug is called combination chemotherapy.
Epidemiology: The branch of medicine which deals with the incidence, distribution, and possible control of diseases and other factors relating to health.
Genetic Therapy: An experimental technique that uses genes to treat or prevent disease. In the future, this technique may allow doctors to treat a disorder by inserting a gene into a patient's cells instead of using drugs or surgery. Not in common use with hepatoblastoma, but could be part of the disease treatment for the future.
Hepatoblastoma: A very rare cancerous tumor that starts in the liver. This disease primarily affects children from infancy to about 3 years of age. Hepatoblastoma cancer cells can spread (metastasize) to other areas of the body, but this is rare. Current treatment is primarily surgery and chemotherapy and sometimes involves liver transplant.
Hospice: A type of care and philosophy of care that focuses on the comfort of a chronically ill, terminally ill or seriously ill patient's pain and symptoms, and attending to their emotional and spiritual needs.
Hospital Rounds:The process of seeing hospitalized patients. This process will be different in every hospital and depending on how many people need to make up your ‘team’
Early in the morning medical students and first-year residents will check on their patients, check labs, find out what happened to them overnight, and do an assessment. Smart ones will read the nursing notes or talk to the overnight nurse.
The senior resident leading the team will also round, doing more of a general overview of the patient charts and maybe stopping in to examine the patient if required.
Later, the residents and students will have a morning conference with their attending physician. At this time, they will discuss any major updates in condition.
The team then grows to include nutritionist, physical therapy, and surgery as required to discuss the patient. The junior resident caring for that patient will likely lead a discussion in your room or in the hallway in front of your room. This is your opportunity to listen in, answer questions as your child’s advocate, and ask multi-disciplined questions. A strategy moving forward may be discussed there and then, or it may proceed to a follow-on meeting if more information is needed.
Some hospitals are developing smart phone apps so you can track the status of your child’s team as they round on other patients (it can be exhausting to wait hours for the process).
Immunosuppressants: Drugs or medications that lower the body's ability to reject a transplant organ. Another term for these are anti-rejection drugs.
Immunotherapy: The prevention or treatment of disease with substances that stimulate the immune response. This is not commonly used in hepatoblastoma, but may be a therapy available in the future.
NED (No Evidence of Disease): This indicates that the signs and symptoms of cancer are no longer present. However, it is possible that cancer cells may continue to exist in the body at a level which current testing methods cannot detect. This term means the same thing as Complete Remission.
Neutropenia: A condition in which the number of neutrophils (a type of white blood cell) in the bloodstream is decreased, affecting the body's ability to fight off infections. It is defined as an absolute neutrophil count (ANC) of less than 1500 per microliter (1500/microL); severe neutropenia is defined as an ANC of less than 500/microL.
NPO:‘nothing by mouth’ or from Latin: nil per os. It is a medical instruction meaning to withhold food and fluids. Talk to your nurse before allowing anything in your child’s mouth, to include ice chips.
Palliative Care: An interdisciplinary approach to specialized medical and nursing care for people with life-limiting illnesses. It focuses on providing relief and comfort from the symptoms, pain, physical stress, and mental stress at any stage of illness.
People in the hospital:
Oncologist – Doctor who treats cancer and provides medical care—three types are medical, surgical, and radiation.
Nurse Practitioner – (NP) Earned at least a Master’s Degree and completed additional specialized training. Due to advanced skills, they are given more authority to administer patient care than a Registered Nurse.
Surgeon – Responsible for the preoperative diagnosis of the patient, performing surgical operations, and providing the patient post-operative surgical care and treatment as part of your medical team.
Pathologist – Scientist who studies the causes and effects of diseases, especially one who examines laboratory samples of body tissue for diagnostic or forensic purposes.
Physician Assistant – PAs are medical professionals who diagnose illness, develop and manage treatment plans, prescribe medications, and often serve as a patient’s principal healthcare provider. With thousands of hours of medical training, PAs are versatile and collaborative. PAs practice in every state and in every medical setting and specialty, improving healthcare access and quality
Registered Nurse (RN) – Registered nurses provide and coordinate patient care, educate patients about various health conditions, and provide advice and support to patients and their family members.
Certified Nursing Assistant (CNA) – This team member works with the nursing staff and may be responsible for taking vital signs
Physical/Speech/Occupational Therapist – These medical professionals are an important part of your care team who focus on temporary and permanent changes that your child is going through as a result of therapy or their experience in the hospital. Pediatric therapists are specifically trained to improve the lives and daily function of children who suffer from a wide range of injuries and congenital conditions. The role of a pediatric therapist is to work with the child and their family to assist each child to reach their maximum potential to function independently and to promote active participation at home, in school, and in the community
Fellow – A physician who has completed their residency and elects to complete further training in a specialty. The fellow is a fully credentialed physician who chooses to pursue additional training. Fellowship is optional and is not required to practice medicine, but is necessary for training in a subspecialty.
Resident – A Resident Doctor is usually someone who already has a basic medical graduate degree and is now working for a Post-graduate degree like MD or MS. They typically spend three years as Resident doctors before they get their specialization in the branch chosen.
Medical Student – Student of a school or university that offers a three- or four-year Doctor of Medicine degree. Generally, medical students begin their studies after receiving a bachelor's degree in another field, often one of the biological sciences.
Radiation Therapy:A type of cancer treatment that uses beams of intense energy to kill cancer cells. Radiation therapy most often uses X-rays, but protons or other types of energy also can be used. The term "radiation therapy" most often refers to external beam radiation therapy. This is not in common use for the treatment of hepatoblastoma, except in some palliative (comfort) cases.
Standard of Care/Clinical Trial: You may hear trial medicine referred to in several ‘phases’ and you might also hear the term ‘standard of care’. These are general terms which we will define, but please, speak with your clinician about what it means for your family member. What is different about pediatric oncology (and hepatoblastoma specifically) is that the patient populations are extremely small. The result is less money for research and a slower process to go from Phase One Trial to a Standard of Care.
Phase One: a particular therapy first must be introduced to a patient population to understand toxicity (how much can be tolerated by the patient). Phase One trials typically start after the drug or combination has been studied in a lab for years.
Phase Two: once toxicity is well-documented, the therapy moves into phase two which finds out effectiveness (or efficacy) against a particular disease. Medicine wants to give the least toxic amounts of drugs while still treating the disease or condition.
Phase Three: involves randomized and blind testing in several hundred to several thousand patients. This large-scale testing, which can last several years, provides the community and the FDA with a more thorough understanding of the effectiveness of the drug or device, the benefits and the range of possible adverse reactions. Once Phase Three is complete, a pharmaceutical company can request FDA approval for marketing the drug.
Phase Four: (often called Post Marketing Surveillance Trials) are conducted after a drug or device has been approved for consumer sale. Pharmaceutical companies have several objectives at this stage: (1) to compare a drug with other drugs already in the market; (2) to monitor a drug's long-term effectiveness and impact on a patient's quality of life; and (3) to determine the cost-effectiveness of a drug therapy relative to other traditional and new therapies. Phase Four studies can result in a drug or device being taken off the market or restrictions of use could be placed on the product depending on the findings in the study.
Standard of Care: a diagnostic and treatment process that a clinician should follow for a certain type of patient, illness, or clinical circumstance. (There is currently no Standard of Care for Hepatoblastoma)
Stem-Cell Therapy: Also known as regenerative medicine, promotes the repair response of diseased, dysfunctional or injured tissue using stem cells or their derivatives. This is not in common use to treat hepatoblastoma.
Biopsy – An examination of tissue removed from a living body to discover the presence, cause, or extent of a disease.
Resection –The medical term for surgically removing part or all of a tissue, structure, or organ. A resection may remove a tissue that is known to be cancerous or diseased, and the surgery may treat or cure a disease process.
Transplant – Organ donation is the process of surgically removing an organor tissue from one person (the organ donor) and placing it into another person (the recipient). In hepatoblastoma, both living and deceased organ donors can potentially be used, depending on the extent and involvement of the tumor.