Helping a Child Take Medicine During Cancer Treatment

This page is for parents whose child is struggling to take medicine during cancer treatment. It walks through a medicine list, the right tools, taste tricks, safe handling, a daily routine, and when to call for help.

Cancer treatment for a child is not one medicine. It is often a rotating cast of chemotherapy taken by mouth, steroids, anti-nausea drugs, antibiotics to prevent infection, and something for mouth pain. Several taste terrible. Some must be given at exact times. A few are hazardous drugs that you may need gloves to handle.

Meanwhile the person taking them is four years old and has decided he is done.

None of that is a parenting failure. It is a systems problem, and it responds to systems: a written list, the right equipment, a fixed routine, and a few techniques from people who do this daily.

A good first step is a simple, usable list of your child's medicines with the instructions attached. Share it with every caregiver. Carry it to every visit and pharmacy stop.

For each medicine, write down:

• The name, the dose, and how much per dose.
• What time, and whether food matters.
• What it is for, in your own words.
• What to do if a dose is missed, and what to do if the child vomits after taking it.

That last line is the one families most often lack at 9 p.m. ACS says to ask your team in advance what to do if your child throws up a dose, and to tell the team about any missed or late dose. The answer differs by drug.

Mercaptopurine, an oral chemotherapy used for leukemia, is one example. MedlinePlus says to give it at around the same time every day. If it is almost time for the next dose, skip the missed one. Never give a double dose.

Get those answers written on the list, drug by drug, before you need them.

Two pieces of equipment matter more than anything else in this article.

Use the measuring device from the pharmacy, not kitchen spoons. A kitchen spoon is not a standard size, so a dose measured with one is a guess.

Use an oral syringe for medicine by mouth, never an IV syringe. Ask your team whether to throw away or wash each syringe after chemotherapy. If a syringe comes with a small cap, keep it away from your child so it cannot be swallowed.

Families and children's hospitals often suggest these ways to make medicine easier to take:

• Numb the tongue first with a popsicle or ice cube.
• Coat the tongue with a spoonful of peanut butter or maple syrup before the dose.
• Eat or drink something right before and right after to block the taste.
• Hold the nose, since taste and smell work together.
• Ask the pharmacist about mixing liquid medicine with instant drink powder, chocolate syrup, or maple syrup.
• Dip a pill in something sweet, such as chocolate coating, syrup, or jelly.
• Ask about putting a tablet inside an empty gel capsule.
• Ask whether crushed pills or capsule contents may be mixed into a small amount of gelatin, applesauce, ice cream, or juice.

Two rules go with these. Ask the pharmacist first every time, because some drugs cannot be crushed or mixed. And use a small amount of food, not a full bowl, so a partly eaten serving does not mean a partly taken dose.

For the syringe itself, aim slowly at the inside of the cheek. Do not squirt toward the back of the throat, because your child could choke.

Oral chemotherapy is not an ordinary pill. The American Cancer Society (ACS) says:

• You may need to wear gloves when touching the pills or capsules. Ask your team.
• If you are pregnant or breastfeeding, ask the team whether you should handle these medicines at all.
• Ask whether tablets or capsules can be opened, broken, or crushed before you do it.
• Some chemotherapy has to stay in the bottle or box it came in. Store it in a safe place away from children and pets.
• Some has to go back to the pharmacy to be thrown away safely. Ask your team how to get rid of unused medicine.
• Ask your team for a spill kit and how to use it.

Body fluids count too. ACS says it generally takes at least 48 hours for the body to get rid of most chemotherapy. Wear 2 pairs of throw-away gloves when handling vomit, urine, stool, or soiled items. Put the toilet lid down before flushing. If body fluid touches your skin, wash the area very well with warm water and soap.

Refusal is usually about control, fear, or a taste memory, not defiance.

Some things that help:

• Keep the same time, place, and order every day. Predictable beats negotiated.
• Offer real choices inside a fixed frame. Which cup, which chaser, which chair, sitting on your lap or beside you. Never offer whether.
• Let older children take charge of the checklist and mark off doses themselves.
• Never call medicine candy, and never hide a dose in a favorite food. If the trick is discovered, you lose both the medicine and the food.
• Follow a hard dose with something the child likes, every time, so the sequence ends well.
• Ask for the child life specialist. They do medicine refusal, pill-swallowing practice, and needle fear as regular work, and they can teach a school-age child to swallow pills using practice with small candies.

If steroids such as prednisone are in the plan, expect mood changes (MedlinePlus lists them), and tell everyone in the house what to expect. Knowing it is the drug makes it easier to hold the line without a fight.

Call before you change anything. Specifically, call before you crush, split, skip, double, delay, or mix a dose with anything new.

• Call 911 or go to an emergency department if a dose is followed by hives, a spreading rash, swelling of the face, eyes, lips, or tongue, wheezing, or any trouble breathing. MedlinePlus says this can be anaphylaxis, an emergency. Do not wait to see whether it settles. Do not drive yourself.
• Call the oncology line right away, at any hour, if your child's temperature is 100.4 °F (38 °C) or higher. CDC says to call your doctor immediately, and that a fever during chemotherapy is a medical emergency (CDC). If your child's team has given you a lower number, use theirs. If you cannot reach anyone within a few minutes, go to the emergency room and tell staff your child is getting chemotherapy. Do not give fever medicine first unless your team has told you to.
• Call your care team the same day if your child throws up a dose and your written list does not say what to do next. Also call the same day if your child cannot keep any medicine down at all.
• Call the oncology line right away, day or night, if your child has new mouth sores, even with a normal temperature. Mouth sores can be a sign of infection during chemotherapy. Ask then whether a liquid form of the medicine exists.
• Call your care team within a day or two if two or more doses have been missed. A liquid form may exist.

See Talking to Your Child About Cancer for the conversation side, and Eating When You Have Nausea and Eating with Mouth Sores for the symptoms behind many refusals. Also useful: Caring for Yourself as a Parent, Questions to Ask About Childhood Cancer Treatment, and Siblings and Hospital Days During Childhood Cancer.

• American Cancer Society, Chemotherapy Safety
• American Cancer Society, Oral Chemotherapy
• MedlinePlus, Mercaptopurine
• MedlinePlus, Anaphylaxis
• CDC, Fever and chemotherapy
• Support for Families: Childhood Cancer, National Cancer Institute