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Childhood cancers differ from those in adults. NCI notes that leukemias and brain tumors predominate in younger children. And the decisions are made by parents, on behalf of someone who cannot yet make them alone. If you are reading this within days of a diagnosis, here is the most useful thing to know. Ask your child's team how much time you have to decide. You can ask questions, ask them to explain the plan again, and ask about a second opinion.
This page covers how pediatric care is set up, and what tends to help parents make decisions they can live with.
How childhood cancer care is set up
The Children's Oncology Group (COG) is a research network of pediatric cancer centers.
That network matters, because of how progress in this field has happened. The National Cancer Institute reports that more than 90% of children and teenagers diagnosed with cancer in the United States are cared for at a center affiliated with the Children's Oncology Group. About 4,000 of them join a COG trial each year. This changes what "clinical trial" means for a family. NCI says participation in these trials is voluntary and decided together by families and their medical team. Being offered a trial is a decision to talk through with your child's team, so ask what it tests and what the alternative is. Our page on what clinical trials are explains the general structure. Ask your child's team what the alternative would be if you declined.
Consent, assent, and your child's voice
Legally, a parent or guardian gives informed consent. Ask the team to explain a trial's purpose, procedures, risks and benefits, and ask questions at any point, not only at enrollment.
Alongside consent, teams may also seek assent. That is the child's own agreement, sought in language they can understand. Ask your child's team how your child can take part in choices, and what happens if your child says no.
Ask your child's team how older teenagers can take part in decisions, including decisions about fertility and how treatment is carried out.
What tends to help parents
- Ask for the treatment plan, called a roadmap, in writing. Ask how long the whole course is expected to run.
- Choose one parent or relative as the main note-taker at appointments. Record conversations if the team agrees.
- Ask about fertility before treatment starts. NCI says to talk with your doctor and a fertility specialist before cancer treatment starts, because options may be limited once treatment begins.
- Ask whether a child life specialist is available to help your child with procedures.
- Ask what the plan is for siblings, school re-entry, and your child's teachers.
- Ask early about long-term follow-up. NCI says regular follow-up with professionals trained to find and treat late effects is important. The Children's Oncology Group publishes Long-Term Follow-Up Guidelines for survivors of childhood cancer. Its Passport for Care is a free online tool that generates a personalized treatment summary, potential late effects and a follow-up care plan based on those guidelines.
- Ask the social worker about lodging, travel and financial help.
Holding the family together
Ask your child's team how long treatment is expected to last. NCI's parent guide has a section on helping brothers and sisters. Our pages on talking to children about cancer and caregiver burnout are worth reading before you feel you need them.
Palliative care exists in pediatrics too. NCI says palliative care may be provided at any point during cancer care, from diagnosis to the end of life, and that it focuses on preventing or treating symptoms and side effects. It can be given alongside treatment aimed at the cancer, so being offered it does not mean the plan has changed.
You will be asked to make decisions with incomplete information, on someone else's behalf, while exhausted. Nobody does that perfectly. Ask the questions. Write down the answers. And be willing to tell the team you do not understand something yet.
Sources
- National Cancer Institute — Cancer in Children and Adolescents
- National Cancer Institute — Children with Cancer: A Guide for Parents
- National Cancer Institute — Late Effects of Treatment for Childhood Cancer (PDQ), Patient Version
- National Cancer Institute — Fertility Issues in Girls and Women
- Children's Oncology Group — Survivorship
- Children's Oncology Group — Clinical Trials
Common questions
How much time do we have to decide?
Ask your child's team how much time you have to decide. You can ask questions, ask them to explain the plan again, and ask whether a second opinion is appropriate. Childhood cancers differ from those in adults: NCI notes leukemias and brain tumors predominate in younger children, and the decisions are made by parents on behalf of a child.
Does being offered a clinical trial mean things are going badly?
Not necessarily. NCI says participation in a COG trial is voluntary and decided together by families and their medical team. The National Cancer Institute reports that more than 90% of children and teenagers diagnosed with cancer in the United States are cared for at a center affiliated with the Children's Oncology Group, and that about 4,000 of them enroll in a COG trial each year. Ask what the alternative would be if you declined.
What is the difference between consent and assent?
Legally, a parent or guardian gives informed consent. Assent is the child's own agreement, sought in language they can understand. Ask your child's team how your child can take part in choices, and what happens if your child says no.
How much weight should a teenager's own view carry?
Ask your child's team how teenagers can take part in decisions, including decisions about fertility and how treatment is carried out.
What should we ask for beyond the treatment itself?
The roadmap in writing with the expected length of the course. One nominated note-taker at appointments. A fertility conversation before treatment starts. Whether a child life specialist is available, and who that is. And long-term follow-up early: the Children's Oncology Group publishes Long-Term Follow-Up Guidelines, and Passport for Care, a free online tool based on those guidelines, generates a personalized treatment summary and list of potential late effects.
Questions to ask your doctor
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Sources last checked: 2026-08-11 what this meansLast updated: 2026-10-16Next planned review: 2027-01-26
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Cancer Explained does not originate medical claims. Every page restates guidance already published by the National Cancer Institute, the CDC, the USPSTF and the FDA, in plain language, with the source cited so you can check the original yourself. AI does the translating and organizing; automated checks test claims, citations, clarity and safety before anything publishes, and this is translation and navigation, not clinical judgment. Nothing here is personal medical advice, and no page can account for your particular situation.
Human medical review: not completed. Pages here are not signed off by a clinician before they publish. That is not an oversight we are quietly working around: we restate published guidance and cite it, so the authority belongs to the source rather than to us, and every page names where its claims come from — you can verify us instead of trusting us. Where a volunteer clinician has reviewed a page, their name and credentials appear on it; where no name appears, no clinician has checked it. We are glad to have reviewers and are recruiting them, and we do not hold pages back waiting for one. Use this site to understand your situation and to ask better questions of the people treating you.
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