What Pediatric Chemotherapy Is Like for Parents

This page is for parents whose child is starting chemotherapy. It explains the treatment plan, central lines, blood counts, the fever rule, and how school and home life fit around treatment.

Pediatric chemotherapy runs on a protocol. This is a written plan, often called a roadmap, that lays out the drugs, the order and the timing. Treatment is given in cycles. As the Children's Oncology Group Family Handbook describes it, a period of chemotherapy is followed by a period of rest, so the body has time to build healthy new cells before the next treatment. Ask for a copy of the roadmap on day one and keep it where you can see it. Knowing which weeks are clinic weeks makes the calendar something you can plan around rather than something that happens to you.

Much of it is not the dramatic version people imagine. It is parking lots, waiting rooms, blood draws, and a lot of hours where nothing happens.

Many children get a central venous line, so that drugs and blood draws do not mean a needle each time. There are two broad kinds. An internal line — a port — sits entirely under the skin, usually on the chest. It is accessed with a special needle when it is needed. An external line, such as a Hickman or a PICC, has tubing that exits through the skin. It needs regular flushing and dressing changes.

You will be taught to care for it, and it will feel impossible for about a week and then routine. Here is what to memorize: a line that breaks, leaks, or comes out means calling your care team right away, day or night. It is not a morning-appointment problem.

Chemotherapy suppresses the bone marrow (the soft tissue inside bones that makes red cells, platelets and white cells). The number you will learn to ask for is the ANC, the absolute neutrophil count. Neutrophils are the white cells that fight bacterial infection. When the count is low, the risk of infection is higher. Ask your team exactly when your child's count is likely to be lowest.

You will find yourself planning birthday parties, school and supermarket trips around this number. That is normal, and it does become second nature.

This is the single most important thing to know, and it overrides everything else.

CDC says: "Call your doctor right away if you have a temperature of 100.4°F (38°C) or higher." It says to do this even in the middle of the night, and it calls a fever during chemotherapy a medical emergency. Your team may give your child different numbers. Ask for them in writing and put them on the fridge.

When your child hits it:

• Call right away, whatever the hour. Call right away too for chills, or if your child feels unwell, even with a normal temperature. A normal temperature is not a reason to wait.
• Talk with your team before giving acetaminophen or ibuprofen. NCI says these medicines can lower a fever but may hide signs of a more serious problem.
• Ask your team how to take your child's temperature. Do not use a rectal thermometer unless your team says to.
• Follow your team's instructions. If you cannot reach them, go to an emergency department and say your child is on chemotherapy. Infection during chemotherapy can be life threatening.

You will make trips that turn out to be nothing. That is the system working, not you overreacting.

The fever rule above stands on its own: at that reading you call right away, at any hour. Fever is not the only thing that moves you to the front of the line, though. Here is how to sort the other warning signs.

• Call 911 or go to an emergency department if your child is struggling to breathe, loses consciousness, or has a sudden change in behavior, sudden vision changes, a severe headache, or new weakness on one side. Do not drive yourself.
• Call 911 or go to an emergency department if your child has shaking chills, or bleeding that has not stopped after a few minutes of firm pressure. NCI says to call for bleeding that does not stop after a few minutes. Chills can be a sign of infection. Do not drive yourself.
• Call 911 or go to the nearest emergency department if your child has black or tarry stool, vomits blood or material that looks like coffee grounds, suddenly cannot urinate at all, or is suddenly confused or hard to wake. Do not drive yourself.
• Call your care team right away, day or night, if a central line breaks, leaks or pulls out, if the skin around a line is red or swollen, or if your child has a sore throat, mouth sores or burning when urinating. These are signs of infection. They do not keep until the clinic opens.
• Call your care team right away if your child has been near anyone with chickenpox or shingles, even briefly.
• Call your care team the same day if pain is not touched by the usual medicine, vomiting or diarrhea keeps repeating, your child cannot keep fluids down.
• Call your care team within a day or two if you are simply uneasy about how they seem and cannot say why.

That last one is not filler. Parents notice the change in a child before any number does.

Most teams want children back in school when counts allow, because normality is protective. Expect attendance to be intermittent rather than absent. Talk to the school early about absences and catch-up work. And — importantly — ask to be told right away if there is a chickenpox or measles case in the class. If your child was near someone with chickenpox or shingles, call your care team right away.

At home, the precautions are mostly ordinary and relentless. Handwashing. Avoiding people who are unwell. Care with food. And keeping vaccinations of household members up to date. Ask specifically about siblings' vaccines.

Within a couple of months most parents can read a count sheet, run a line dressing, pack a hospital bag in four minutes and describe a drug regimen from memory. It is a strange competence to acquire. It is also genuinely useful, and it is worth noticing that you built it.

• Children's Oncology Group — Family Handbook for Children with Cancer (PDF)
• National Cancer Institute — Infection and Neutropenia During Cancer Treatment
• CDC — Fever and Cancer Treatment
• National Cancer Institute — Bleeding and Bruising
• Alex's Lemonade Stand Foundation — resources for families
• Momcology — peer support for pediatric cancer caregivers