Glossary: Words You’ll Hear in the First Month

In the first few weeks, people will use words as if you already know them. These are plain definitions of the ones that come up most, so you can follow the conversation and ask better questions. They are not medical advice; for anything about treatment, ask your care team.

People you’ll meet

Attending physician – The senior doctor in charge of your child’s care on the unit or in the clinic. Other doctors report to them. When you want a final answer on the plan, this is the person.

Fellow / resident – Doctors still in training. A resident finished medical school and is learning general practice; a fellow is a fully licensed doctor training in a specialty. You will see them more often than the attending, and they are a good first stop for questions.

Nurse practitioner (NP) / physician assistant (PA) – Licensed clinicians who can examine, order tests, and prescribe. In many clinics the NP or PA is your day-to-day point of contact.

Charge nurse – The nurse running the unit for that shift. If something on the floor is not working (a delayed medication, a room issue, a conflict), ask for the charge nurse.

Case manager – A nurse or social worker who coordinates the practical side of care: insurance approvals, home equipment, home nursing, and discharge. Usually assigned by the hospital or your insurer.

Social worker – Your guide to everything that is not medical. Family leave paperwork, lodging, transportation, food help, counseling, and the hospital’s own assistance programs. Ask for one on day one if nobody has introduced themselves.

Hospital financial counselor – The person who explains your bills, screens you for Medicaid and the hospital’s financial assistance, and sets up payment plans. Separate from the social worker. Ask to meet one before the first big bill arrives. See Treatment Cost Overview.

Patient navigator – A staff member (sometimes a nurse, sometimes a trained layperson) who helps you get through the system: appointments, referrals, paperwork, and understanding what comes next. Not every hospital has one; ask.

Child life specialist – A trained professional who helps children understand and cope with the hospital through play, preparation, and honest age-appropriate explanations. They also help siblings. One of the most valuable people you will meet.

Chaplain – Spiritual support for any faith or none. Chaplains are also skilled listeners for parents who simply need a quiet conversation.

Palliative care team – Specialists in comfort, symptom control, and family support during serious illness. This is not the same as hospice and is not only for end of life. Many families use palliative care alongside full treatment from the start.

Discharge planner – The person (often the case manager) who arranges what happens when your child leaves the hospital: prescriptions, follow-up visits, home supplies, and written instructions.

Insurance and bills

Premium – What you pay every month to keep the insurance plan, whether or not you use it.

Deductible – The amount you pay for covered care each year before the plan starts paying its share. A serious illness usually hits the full deductible in the first month.

Copay – A fixed dollar amount you pay for a visit or prescription, such as $30 for a specialist.

Coinsurance – Your percentage share of a bill after the deductible, such as 20% of a hospital stay while the plan pays 80%.

Out-of-pocket maximum – The most you will pay in a plan year for covered, in-network care. Once you reach it, the plan pays 100% for the rest of the year. Find this number first; it is the real ceiling on your costs. See Insurance Navigation.

In-network / out-of-network – In-network providers have a contract with your plan and cost you less. Out-of-network care can cost far more or be uncovered. Always confirm the hospital, the doctors, and the lab are all in-network.

Prior authorization – The plan’s advance approval for a test, drug, or procedure. If care goes ahead without one, the claim can be denied. Ask the clinic who is handling it.

Referral – A written order from one doctor sending you to another. Some plans will not pay for a specialist without one.

Explanation of Benefits (EOB) – A statement from your insurer showing what was billed, what the plan paid, and what you may owe. It is not a bill. Match every EOB to the bill that follows before paying.

Itemized bill – A line-by-line list of every charge. Always request it before paying a large hospital bill; errors are common and easy to spot on an itemized bill.

Charity care / financial assistance policy – Every nonprofit hospital must have a program that reduces or cancels bills for families below certain income limits. You have to apply. Ask the financial counselor for the application by name. See Treatment Cost Overview.

COBRA – The right to keep your employer health plan for up to 18 months after leaving a job, if you pay the full premium yourself. Expensive, but it keeps the same doctors and the same deductible progress.

Marketplace / ACA plan – Health insurance bought through HealthCare.gov or your state’s exchange, with income-based discounts. An option if you lose employer coverage.

Special enrollment period – A window, usually 60 days, to sign up for a new plan outside open enrollment after a life event such as losing a job or employer coverage. Miss it and you may wait months.

Medicaid – Free or very low-cost public health coverage based on income, and in some states on a child’s disability or medical condition regardless of income. Can work as a second insurance behind your employer plan. See Medicaid.

CHIP – The Children’s Health Insurance Program. Low-cost coverage for children in families who earn too much for Medicaid. Goes by a state name in many places (NJ FamilyCare, Child Health Plus in New York).

Secondary insurance – A second plan that pays after the first one. Medicaid as secondary coverage often wipes out the copays and coinsurance your primary plan leaves behind.

Medicaid waiver / Katie Beckett / TEFRA – Programs that let a child with a serious medical condition qualify for Medicaid based on the child’s needs, not the parents’ income. Names and rules vary by state; ask the social worker what your state calls it. See Medicaid.

No Surprises Act – A federal law that protects you from surprise out-of-network bills for emergency care and for many services at an in-network hospital. There are exceptions, such as ground ambulance and some non-emergency care where you signed a consent form. If a bill looks like a surprise, say the law’s name when you dispute it.

Work and leave

FMLA – The Family and Medical Leave Act. Federal law giving eligible employees up to 12 weeks of unpaid, job-protected leave a year to care for a seriously ill child, spouse, or parent. Your health coverage is kept on the same terms, and you keep paying your share of the premium. See FMLA.

Intermittent leave – Taking FMLA in pieces, such as a few hours for a clinic day or one day a week, instead of all at once. Often the most useful form for a long treatment.

Paid family leave / TDI / FMLI – State programs that replace part of your pay while you care for a sick family member (family leave) or are unable to work yourself (temporary disability). Available in a growing number of states, including New Jersey and New York. See Family and Medical Leave Insurance.

Short-term disability – Insurance, through your employer or a state program, that pays part of your wages when you cannot work because of your own illness or injury. It does not cover caring for someone else.

ADA reasonable accommodation – A change to how or where you work, such as a shifted schedule or remote days, that an employer must consider under the Americans with Disabilities Act. Applies to your own disability; for caregiving, ask for flexibility anyway. See Workplace Accommodations.

PTO donation / leave bank – A policy letting coworkers give you their unused paid time off. Many employers have one and never mention it. Ask HR.

Unemployment insurance – Weekly payments from your state if you lose your job through no fault of your own. Having to leave a job for a family emergency can qualify in some states; apply and let the state decide.

Government and community help

SNAP – The Supplemental Nutrition Assistance Program, formerly food stamps. Monthly money for groceries based on your income right now. See State Assistance Programs.

EBT – Electronic Benefits Transfer. The debit-style card that SNAP and cash assistance are loaded onto. Works at grocery stores and many online retailers.

WIC – Food, formula, and nutrition support for pregnant and postpartum women and children under 5. Income limits are higher than SNAP.

TANF – Temporary Assistance for Needy Families. Monthly cash assistance for families with children and very low income. Each state has its own name for it.

SSI – Supplemental Security Income. A monthly federal payment for children with a serious disability in families with low income and few assets. Some cancers and treatment situations qualify, and some are on Social Security’s fast-track list, but it depends on medical criteria and family finances. Often brings Medicaid with it. See Social Security Benefits.

SSDI – Social Security Disability Insurance. Monthly payments for adults who worked and paid into Social Security and can no longer work because of their own disability.

LIHEAP – The Low Income Home Energy Assistance Program. Help paying heating and cooling bills, plus emergency help to stop a shutoff. See Utility Assistance.

Section 8 / Housing Choice Voucher – A federal rent subsidy paid directly to your landlord. Waiting lists are long; apply early and ask about emergency priority. See Rental Assistance Programs.

211 – A free phone line and website in every state that connects you to local help with food, rent, utilities, transportation, and more. Dial 2-1-1.

988 – The Suicide and Crisis Lifeline. Call or text 988 any time, for yourself or anyone in the family. You do not have to be in immediate danger to call.

Ronald McDonald House – Free or low-cost lodging near children’s hospitals for families who live far from treatment, plus in-hospital Family Rooms with meals, showers, and quiet space. Ask the social worker for a referral. See Transitional Housing.

Meal train – A shared online calendar where friends sign up to bring meals on specific days. Let one friend run it so you do not have to.

504 plan – A written school plan giving a student with a medical condition accommodations such as extra time, rest breaks, or a shortened day. Faster to set up than an IEP. See Educational Support.

IEP – An Individualized Education Program. A legal plan for a student who needs special education services, with goals and services the school must provide.

Home instruction / hospital-homebound – Teaching provided by the school district at home or in the hospital when a child cannot attend for medical reasons. Ask the school in writing. See School Communication.

Hospital words

Inpatient / outpatient – Inpatient means admitted and staying overnight. Outpatient means treated in a clinic or day unit and going home the same day. Insurance can treat the two very differently.

Port – A small device placed under the skin of the chest so medications can be given and blood drawn without repeated needle sticks in the arm. Ask your care team how to care for it.

PICC line – A thin tube placed in an arm vein that stays in for weeks or months for the same purpose as a port. Must be kept dry and covered.

ANC / “counts” – The absolute neutrophil count, a number from a blood test that shows how well the body can fight infection. The care team uses it to decide whether your child can go out, go to school, or needs to come in. You will hear “what are the counts today?” constantly.

Neutropenic precautions – The rules for when counts are low: strict handwashing, avoiding crowds and sick people, food and hygiene limits, and calling at the first sign of fever. Follow your clinic’s version exactly.

Protocol / treatment roadmap – The written plan for the whole course of treatment, often broken into phases with dates. Ask for a copy; it answers most “what comes next” questions.

Clinical trial – A research study that tests a treatment under close monitoring. Many children’s cancer treatments are given through trials and are the standard of care. Ask your care team what joining does and does not change.

Second opinion – A review of the diagnosis and plan by another specialist, usually at a different hospital. Normal and expected for a serious diagnosis; most doctors will help you get one.

Discharge summary – The written record of a hospital stay: what happened, what was given, and what to do next. Keep every one of them in your folder.

After-visit summary – The printout or portal note after a clinic visit with medications, instructions, and the next appointment. Read it before you leave the building.

Patient portal – The hospital’s online account where test results, notes, bills, and messages to the care team live. Set it up in the first week and turn on notifications.

Advance directive – A document stating the medical care a person wants if they cannot speak for themselves. For adults; for a child, parents decide, but the hospital may still ask about it.

HIPAA release – A form giving the hospital permission to share your child’s medical information with someone you name, such as a grandparent, a school, or an employer. Without it, staff cannot tell them anything.