In order to add a simple reference to this journal, both for visitors and for ourselves along the way, I’ll be listing some of the medical and other terms, abbreviations and errata used in the journal. Please note that all information contained here is documented by a layman and should not be taken as the statements of a physician.

Anemia: A condition resulting from a decrease in Red Blood Cell count

BMT: Bone Marrow Transplantation, the only known cure for familial HLH

Central Line: A surgically implanted IV used to for infusion of chemicals that cannot be safely infused through a normal IV

Chemotherapy: The treatment of a disease using chemicals

Chimerism: Post-transplant state in which both donor and host cells coexist in the bone marrow; can be a result of a RIC followed by a transplant in which graft takes place but the marrow has not been completely wiped out, leaving host cells to repopulate with the donor cells

Ciclosporine: One of the three medications used in the chemotherapy regimen

Dr. M: The primary Hematologist/Oncologist involved in determining Zoe’s course of treatment

Dr. A: One of Zoe’s pediatricians

Dr. K: The attending who was present during the day of diagnosis and subsequent days

Dr. P: The surgeon who would put the Central Line in place

Dexamethasone: One of the three medications used in the chemotherapy regimen

Diastolic Blood Pressure: The “Bottom” number of a blood pressure reading, the number that indicates the heart at rest or dilation

Etoposide: One of the three medications used in the chemotherapy regimen

Familial HLH (also called FHL): the variation of the disease derived genetically from the parents; parent each donate a recessive gene which, when combined in both parents can present the disease in the child; this variation requires BMT to be cured; typically triggered by a virus or other infection

Ferritin: A protein whose levels in the body can be used as a way to track disease activity — high ferritin tends to indicate disease activity, low ferritin tends to indicate a decrease in activity

HLH: Hemaphagocytic lymphohistiocytosis; an aggressive non-cancerous immune disease found only in very young children due to is mortality rate untreated or unsuccessfully treated

HLH-2004: An internationally accepted course of treatment for the disease

IL-2: Interleukin 2, a hormone that is an integral part of the body’s response to microbial infection; along with Ferritin, levels of this can be indicative of disease activity or lack thereof

Lansky Score: In patients who have difficulty expressing their quality of life, such as young children, an observational system is used to estimate their condition

MAC: Myeloablative Conditioning; the traditional pre-transplant conditioning method that involves high-dose chemotherapy and/or full body radiation to wipe out the patient’s bone marrow, disease, and immune system

Mortality Rate: A measure of the number of deaths in a population

Neuroblastoma: The most common form of non-cranial cancer in children; presents similar symptoms to HLH and as such must be eliminated as a possible cause, typically using an Ultrasound

Non-Familial HLH: a variation of the disease of unknown origin which presents on it’s own in slightly older children; this variation does not necessarily require BMT for a cure to take effect

Platelets: Cells in the blood which serve several functions, primarily to assist in clotting; low platelet count can be an indicator in diseases and can result in Anemia and uncontrolled bleeding

RIC: Reduced Intensity Conditioning; a regimen that involved less harmful chemotherapy and/or radiation in advance of a BMT or SCT

Systolic Blood Pressure: The “Top” number of a blood pressure reading, the maximum pressure during contraction of the heart

Thrush: Mild yeast infection typically on the tongue in young children

TRM: Transplant Related Mortality; commonly used acronym in journal articles when discussing mortality rates in transplant patients

Ultrasound: An imaging technique using sound waves to determine the presence of tumors or otherwise get a picture of the interior of the body

Vfend: Anti-fungal agent used to offset reduced immune function during chemotherapy

Vitals: Readings taken regularly by nurses or nurse assistants, which typically includes: blood pressure, temperature, weight, and could also include heart rate, oxygen level, or other levels depending on the situation