Questions to Ask Your Child’s Doctor About Leukemia

As a parent or caregiver, ensuring you have all the necessary information about your child’s leukemia diagnosis and treatment is crucial. These detailed questions will help you understand the diagnosis, treatment options, side effects, and long-term outcomes.

1. Questions About the Diagnosis

Understanding the Disease

• What type of leukemia does my child have?
  • Request a clear explanation of the type (e.g., ALL, AML, etc.) and how it affects the blood and bone marrow.
  • Ask for educational resources or visuals that explain the disease in simple terms.
• Are there specific subtypes or genetic mutations we should be aware of?
  • For example, does the leukemia involve the Philadelphia chromosome or FLT3 mutation?
  • How do these mutations impact treatment options or prognosis?
• How aggressive is this type of leukemia?
  • Is it fast-growing, or does it progress more slowly?
  • How soon does treatment need to begin?

Diagnostic Tests

• What did the blood test results show?
  • Ask about the abnormal levels of WBCs, platelets, or RBCs and what they mean for your child’s condition.
• What were the results of the bone marrow biopsy?
  • What percentage of blast cells were found, and how does that confirm the diagnosis?
  • Were any chromosomal abnormalities or genetic markers detected?
• What imaging tests have been done, and what were the results?
  • Were X-rays, CT scans, or MRIs used to check for organ or bone involvement?
  • If there is organ or lymph node enlargement, what does that mean for my child’s condition?
• Were leukemia cells found in the cerebrospinal fluid?
  • If so, what additional treatment might be needed for central nervous system (CNS) involvement?
• Are additional tests or biopsies needed?
  • Will more tests be required later in treatment to monitor progress or detect relapse?

Prognosis

• What is the expected outcome with the proposed treatment?
  • What is the remission rate for this type of leukemia in children?
  • How does my child’s age, genetic profile, or WBC count at diagnosis affect prognosis?
• Are there specific risk factors that may complicate treatment?
  • For example, high WBC count, CNS involvement, or certain genetic markers.

2. Questions About Treatment Options

General Treatment Plan

• What are the goals of treatment?
  • Is the aim to cure, achieve remission, or manage symptoms?
• What are the phases of treatment, and what happens in each phase?
  • Induction: What drugs will be used, and how intensive will it be?
  • Consolidation: How does this phase prevent relapse?
  • Maintenance: How long will this phase last, and how frequent are treatments?
• How long will the entire treatment process take?
  • Are there breaks between treatment phases, and what should we expect during those times?
• What happens if my child does not respond to treatment?
  • Are there backup plans, such as additional treatments or clinical trials?

Chemotherapy

• Which chemotherapy drugs will be used, and why?
  • Ask for a list of drugs (e.g., Methotrexate, Vincristine, Cytarabine) and their specific roles.
• How are these drugs administered (oral, IV, intrathecal)?
  • Will my child need a central line or port for IV treatments?
• What are the potential side effects of each drug?
  • Request specific side effects and how likely they are to occur.
• Are there long-term risks associated with these chemotherapy drugs?
  • Examples: Heart damage, infertility, secondary cancers.

Targeted Therapy

• Is targeted therapy an option for my child?
  • Does my child’s leukemia have genetic markers that targeted drugs can treat?
• What are the side effects of targeted therapies, such as Imatinib or Blinatumomab?
  • Are these therapies more or less intense than chemotherapy?

Stem Cell Transplants

• Does my child need a stem cell transplant?
  • If so, why is this necessary, and what are the risks?
• What type of transplant will be used (allogeneic, autologous, haploidentical)?
  • How will a donor be selected, and what happens if no match is found?
• What is the recovery process after a stem cell transplant?
  • How long will my child need to stay in the hospital, and what restrictions will they have afterward?
• What are the risks of complications like graft-versus-host disease (GVHD)?
  • How will GVHD be prevented or managed?

Immunotherapy

• Is CAR-T cell therapy or monoclonal antibody therapy an option?
  • What makes my child eligible for these treatments?
• What are the potential risks of immunotherapy?
  • How will severe reactions, such as cytokine release syndrome, be handled?

3. Questions About Side Effects

Managing Immediate Side Effects

• How do we prevent or manage nausea, vomiting, and appetite loss?
  • What anti-nausea medications are most effective?
  • Are there specific dietary recommendations?
• What can we do for mouth sores caused by treatment?
  • Are there specific rinses, gels, or dietary changes to help?
• How can we manage fatigue?
  • Is light physical activity encouraged, or should my child rest more?
• What precautions should we take to prevent infections?
  • Should my child avoid certain foods, activities, or environments?

Managing Long-Term Side Effects

• Are there risks of secondary cancers, infertility, or developmental delays?
  • What monitoring or follow-up care will address these risks?
• How will treatment affect my child’s growth?
  • Are there specific ways to support healthy development during and after treatment?

4. Questions About Daily Life

School and Social Life

• Can my child attend school during treatment?
  • What accommodations should we request from the school?
• How can we explain the diagnosis to my child’s classmates and friends?
  • Are there resources for raising awareness and understanding?

Family Dynamics

• How can we support siblings who may feel neglected during this time?
  • Are there family counseling resources available?
• What mental health resources are available for my child and our family?
  • Are there therapists or social workers experienced with childhood cancer?

5. Questions About Support and Financial Concerns

• Are there financial assistance programs for treatment costs?
  • What organizations can help with travel, lodging, or out-of-pocket expenses?
• What resources are available to help us organize transportation and appointments?
  • Are there tools or apps for coordinating care?
• Are there support groups for parents and families dealing with childhood leukemia?
  • Can you recommend local or online groups?

These detailed questions will help you navigate every aspect of your child’s leukemia journey, from understanding the diagnosis to managing daily life. Don’t hesitate to ask follow-up questions or request more information during appointments—your care team is there to support your family every step of the way.

Recently diagnosed? Going through treatment? Have questions? See Wellnest's guide for Pediatric Leukemia Diagnosis Guide, Treatment Options for Childhood Leukemia, Understanding Stem Cell Transplants, Managing Side Effects of Childhood Leukemia Treatment, and Must-Have Items for Going Through Treatment.