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Communication with your child’s specialist and the team coordinating their care is very important. Tell your doctor how much you want to know about your child’s diagnosis, treatment options, and test results so you can function together as a team. Some people want to know every detail. Others want to know only the basics and trust their doctor to choose the right treatment.
Who’s who on your child’s care or treatment team
First, it’s important to know the roles of the doctors and other healthcare professionals who will likely be on your child’s care or treatment team and others you may encounter during their treatment. Your child’s care or treatment team may include:
- Gastroenterologists: doctors who specialize in digestive tract diseases
- General surgeons: doctors who perform surgical procedures such as splenectomies, lymph node biopsies, and other tissue biopsies
- Hematopathologists: doctor-pathologists who are board-certified in both anatomical and clinical pathology and who examine your child’s blood, bone marrow, and tissue samples
- Hematologist-oncologists: doctors specially trained to diagnose and treat patients with blood cancers. The oncologist or hematologist-oncologist coordinates a treatment and follow-up plan of coordinated care that involves other doctors as well as nurses, social workers, case managers, and nutritionists
- Nurse practitioners: nurses who have advanced training in diagnosing and treating illness
- Oncologists: doctors who treat patients with cancer
- Oncology nurses: nurses who specialize in treating people who have cancer
- Pathologists: doctors who identify diseases by studying cells and tissues using microscopes
- Pediatric hematologist oncologists: doctors who treat children, adolescents, and some young adults who have blood cancers
- Nephrologists: doctors who specialize in treating patients with kidney diseases
- Radiologists: doctors trained to read imaging studies such as a computed tomography (CT) scan or magnetic resonance imaging (MRI)
- Radiology or lab technicians: healthcare professionals who withdraw blood or take images of your body
Radiation oncologists, social workers, psychologists, registered nurses, and nutritionists may also be part of your healthcare team.
Make the most of every doctor visit
You can optimize your child’s doctor visits by being prepared. The following suggestions may help:
- Make a list of questions ahead of time: Give the list to your child’s doctor at the start of your visit
- Tell your doctor how much you want to know: Do you want all of the details or just the basics?
- Take notes: Consider bringing someone along to take notes or using a recorder
- Ask for written information about your child’s disease and treatment
- Ask for copies of your child’s lab test results:
- Ask the doctor to slow down or explain things in another way if you're having trouble understanding them
- Talk about your child’s symptoms: Tell your doctor about any changes in the way your child feels or whether they’ve had to change their activities
- Ask for help: Tell your doctor about anything you need help with, such as paying for medications or keeping depression at bay
Keep a health calendar
It can be hard to remember how your child felt last month, last week, or even yesterday—
but this information can help your doctor manage your child’s treatment and side effects more effectively. If you're finding it difficult to keep track of your child’s symptoms and how they feel from day to day, consider keeping a health calendar.
You can use the same calendar to keep track of your child’s medical appointments—or even their social plans, so the calendar isn’t all about their blood cancer and treatment.
Use the calendar to write a short note each day about how your child feels, their activities, and what effect each has on the other. Include such items as their:
- Energy levels ("tired," "lots of energy")
- Overall well-being ("feel great!" "depressed")
- Symptoms ("rash," " bad headache," "felt nauseated in the morning, better in the afternoon")
- Physical activities ("walked half a mile," "cleaned house," "treatment day—slept all afternoon")
- Social activities ("lunch with friends")
Download the Blood Cancer United Health Manager App to track your health during treatment
Manage your health by tracking your side effects, medication, food and hydration, questions for your doctor, grocery lists, and more.Available in the Apple Store and Google Play.
What to tell your child’s doctor before beginning treatment
The more your child’s doctor knows about them—such as allergies, medical history, reproductive plans, and any drug or alcohol use—the better their ability will be to determine the best course of treatment for your child. Tell the doctor if:
- Your child has taken the drug before (even if they had no unusual reaction)
- Your child had an unusual or allergic reaction to any drug
- Your child has or has had any other medical conditions, including:
- Diabetes
- Gout
- Heart disease (or abnormal heart rhythms or congestive heart failure)
- A head injury
- Infection
- An immune deficiency
- Kidney disease
- Kidney stones
- Liver disease
- Marrow depression
- Low serum magnesium or potassium
- Pancreatitis (inflammation of the pancreas)
- A history of alcoholism
- Your child recently been exposed to varicella (chicken pox) or herpes zoster (shingles)
- Your child has had an unusual or allergic reaction to any foods such as lactose or egg whites, preservatives, dyes, E. coli-derived proteins, albumin, or retinoid (vitamin A) preparations
- Your child has ever been treated with radiation therapy or other cancer therapies (some cancer drugs may increase the effects of other medications or radiation therapy
- Your child takes any vitamins, minerals, herbs, or other supplements
- You or your child have any concerns about intimacy, birth control, fertility, pregnancy, or breastfeeding
- Your child takes any other drugs (prescription or over-the-counter)
- Your child uses illegal or street drugs, which can increase the toxicity of certain cancer drugs
- Your child is a smoker
Questions to ask your child’s doctor or care team about treatment
You may find it hard to remember everything your child’s treatment team tells you—so plan to take notes or bring someone along who can do it for you. Ask your child’s doctor for any printed information about the specific cancer and treatment. If you don't fully understand something your child’s doctor says, ask them to explain it again.
Before your child begin their cancer treatment, make sure you and they are aware of any potential side effects and how the treatment may affect their body. Many side effects are manageable when proper precautions are taken.
Here are some questions to ask before your child begin treatment:
- What are the possible side effects of this treatment? When are they likely to occur?
- What can we do to relieve my child’s side effects?
- Are there any complementary and alternative therapies that my child can use to help them better handle side effects?
- Does my child need to be concerned about fertility or pregnancy and breastfeeding?
- Will this drug have any effect on my child’s menstrual cycle?
- Will my child have any special nutritional needs? Are there any known food-drug interactions of this treatment?
- Does my child need to consume extra fluids while undergoing therapy?
- Should I be aware of any test results that could be affected by treatment?
- Will any of the medications my child is currently taking interact with this treatment?
- What are the names of the drug my child will be taking? How do they work?
- How will the drugs be given and how long will each treatment last?
- How many treatments will my child receive and for how long?
- Where will my child get treatment?
- Do we have a choice about when my child begins treatment?
- Do we have a choice about which days or time of day to schedule treatment?
- Will my child need assistance on the day of their treatment?
- Are there signs or symptoms I'll need to watch for after my child finishes treatment with this drug? For how long?
- Will my child be able to go to school or work while they are undergoing treatment?
- Will this drug cause drowsiness or affect my child’s alertness? Can they drive or do jobs that require them to be alert?
- Does my child need to take to avoid strong sunlight or tanning beds while taking this drug?
Find more question guides below. Open the section below to learn more.
Before you visit your child’s doctor and other healthcare providers, it's a good idea to write down any questions or concerns you or your child may have. Below is a set of suggested question guides you may print or download to ask about certain topics:
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