Tips on managing your child’s care
As your child goes through tests and treatment, you may find yourself overwhelmed by everything there is to manage, such as medical information, appointments and medicines for your child. These tips may help to keep you organized:
Keeping track of medical information
Keep a binder or notebook of all the medical records and information about your child’s cancer. Write down everything. It will become a source of information that you rely on to recall events and conversations. Some important things to keep track of include:
- names of the healthcare team and their contact information
- dates and details of conversations, appointments, tests and procedures
- treatment visits
- medicines and information about giving medicines
- any questions you have and their answers
- details about caring for your child at home
- details of your child’s symptoms or side effects and how they were treated
Keep a list of all important contacts on paper and in your cell phone. It may be helpful to keep a list of numbers in your cell phone and on paper at home so they are always easy to phone. Examples include phone numbers for the oncologist, pharmacy, treatment centre, lab and home care services.
Keep a chart of all medicines. A chart can be helpful if you have a number of medicines to keep track of and if there is more than one person looking after your child. The chart should include the name of the drug, how much (dose), times to give the drug and how to give the drug. Some treatment centres may give you a chart, calendar or booklet to use.
Keep a journal of your child’s treatment. A daily journal or calendar is a good place to record your child’s treatment. You can track treatments, side effects, medicines, tests, surgeries and appointments. It’s helpful to have a record of each chemotherapy or radiation treatment, including the names of all drugs, doses and how they were given.
Keep copies of your child’s treatment records. This is information that your child should have and keep for the rest of their life. Check with the healthcare team about what is important to have. This may include the following:
- pathology reports from biopsies and surgeries
- reports from surgery
- discharge summaries from hospitalizations
- list of chemotherapy drugs and doses
- dose and field of radiation
- type of stem cell transplant
- any problems or complications from treatment
Giving medicines at home
When you have to give your child medicine at home, be sure to ask the pharmacist or another healthcare team member to tell you all about the medicine, including:
- name, purpose and dose of the medicine
- how and when to give the medicine
- how to measure the medicine, especially if in a liquid form
- if the medicine can be given with or mixed with food
- if there is anything your child should not do or should not eat when they take the medicine
- how to prevent or manage side effects
- what to do if your child won’t take the medicine, vomits the medicine or misses a dose
- who to call about side effects or problems (especially if they happen outside of regular office hours)
Some children find it hard to swallow medicines, especially if they don’t taste good. These tips may help:
- Ask your pharmacist if there are different forms (liquid, capsule or pill) or flavours of the medicine that your child could try. Ask whether you can crush pills or empty out the capsules.
- Make taking medicine part of the normal daily routine. It can help to give medicine in the same place using the same method. Be positive, firm and consistent. Explain why the medicine will help your child get better.
- Be honest and sympathetic. If you know it tastes bad, acknowledge that and say you’re sorry it tastes bad.
- Offer a choice that gives your child some control. For example, say, “It’s time to take your medicine. Would you like water or milk to help you swallow it?”
- Give your child ice chips or a popsicle just before they take the medicine. Cold helps numb the mouth and taste buds and can help hide a bad taste.
- Use an oral syringe with liquid medicines and try to get the liquid toward the back of the mouth. Let your child help to push the plunger and swallow the medicine a little at a time.
- Praise your child for taking the medicine. This may include getting siblings involved to clap or making a phone call to someone special to tell them how good they were at taking their medicine.
- Try to make a game out of it. Set a timer and try to get your child to beat the timer.
- Reward your child for taking their medicine. Examples include a sticker, some TV time, going to the park or something else simple that they enjoy.
- Some centres may have specialists who can help your child with taking medicines, in particular pills or tablets. Ask if there is someone at your hospital who can help. Your child’s nurse or someone else on the healthcare team may also have learned some tips or tricks over time.
Great progress has been made
Some cancers, such as thyroid and testicular, have survival rates of over 90%. Other cancers, such as pancreatic, brain and esophageal, continue to have very low survival rates.