Helping a Child Take Medicine During Cancer Treatment

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, the parent, should not touch with bare hands.

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.

St. Jude's first medicine safety step is a simple, usable list of your child's medicines with the instructions attached, shared with every caregiver, and carried 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. St. Jude names both as questions to ask your team in advance, because the answer differs by drug. Mercaptopurine, a common oral chemotherapy in leukemia treatment, is one example: St. Jude says to give it at about the same time each day, and if the next dose is within 6 hours, skip the missed one rather than doubling up.

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. St. Jude says to use it and not household spoons. A kitchen teaspoon is not a standard volume, and a chemotherapy dose measured with one is a guess.

Use an oral syringe, never an IV syringe. St. Jude explains the design difference: an oral syringe tip will not fit the end cap of an IV line. That mismatch is a deliberate safety feature that prevents a medicine meant for the mouth from being pushed into a vein. Throw away oral syringes after each use with chemotherapy. For other medicines you can usually wash and reuse them, unless your team says otherwise. If a syringe comes with a cap, remove and discard it right away so a child cannot swallow it.

St. Jude's list of ways to make medicine easier to take is more practical than most advice parents get:

• 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 for the inside of the cheek. St. Jude says to squirt the medicine to the side of the mouth to bypass taste buds, and warns clearly against squirting toward the back of the throat, because it can enter the windpipe and cause choking.

Oral chemotherapy is not an ordinary pill. St. Jude's safe-handling guidance is specific:

• People who are pregnant or breastfeeding should avoid all contact with hazardous drugs.
• Anyone other than the patient should wear gloves to handle them. Use disposable nitrile gloves, not latex. Peel them off inside out, throw them away, and wash your hands with warm soapy water.
• Do not crush, break, or chew chemotherapy tablets or capsules unless your pharmacist or team says to. If splitting is required, use a tablet cutter kept only for hazardous medicines.
• Store them in original labeled containers, in a locked box or cabinet, in a cool dry place away from sun and moisture, out of reach of children, pets, and other household members.
• Never flush them or pour them down a drain. Seal unused medicine in a container and follow your team's disposal instructions or use a pharmacy take-back program.
• For a spill, wear two pairs of gloves. Soak up liquid with paper towels, working from the outside of the spill inward, then clean the area three times with a household cleaner.

Body fluids count too. St. Jude says that for at least 48 hours after chemotherapy, all of a child's body fluids and waste can contain the drug. Wear gloves when handling vomit, blood, urine, stool, or soiled bedding, and add a face shield or goggles for diaper changes. Close the toilet lid before flushing. If body fluid touches your skin, wash it right away with soap and water.

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 are in the plan, expect mood swings and hunger, 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 or lips, or any trouble breathing. Do not wait to see whether it settles.
• Call the oncology line at once, at any hour, if the thermometer shows a single reading of 101 °F (38.3 °C), or 100.4 °F (38.0 °C) that holds for an hour. Fever during chemotherapy is a medical emergency, not a same-day call. If nobody answers within a few minutes, go straight to the emergency department and say your child is on cancer treatment. Do not give acetaminophen first unless your team has already told you to, because it can mask the next reading.
• 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, or cannot keep any medicine down at all.
• Call your care team within a day or two if two or more doses have been missed, or if mouth sores have made swallowing pills impossible. 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.

• How to Manage Medicines Safely, Together by St. Jude
• How to Make Medicine Taste Better, Together by St. Jude
• Safe Handling of Chemotherapy and Hazardous Drugs at Home, Together by St. Jude
• How to Handle Body Fluids After Chemotherapy, Together by St. Jude
• Oral Syringes to Give Medicine by Mouth, Together by St. Jude
• Mercaptopurine for Childhood Cancer Patients, Together by St. Jude
• Support for Families: Childhood Cancer, National Cancer Institute
• Fever and Signs of Infection, Together by St. Jude