Category: Cancer

What to Do When Your Child is Diagnosed with Cancer

Posted on by Jennifer Glover

Key Takeaways:

  • Ask for a pediatric oncologist, not a general oncologist. Children are not small adults, and they need specialists trained specifically in childhood cancers.
  • Write down your questions before every appointment. Bring a notebook or a trusted person to help you remember what the care team tells you.
  • Seek a specialized pediatric cancer center with access to clinical trials, multidisciplinary care teams, and supportive services for the whole family.
  • You are not alone. Social workers, patient navigators, family support programs, and parent communities exist to help you through this—and you deserve that support.

When the Doctor Says “Cancer”

Nothing can prepare you for hearing that your child has cancer. In that moment, the world narrows to a single, terrifying word, and everything after it becomes a blur. You may not remember what the doctor said next. You may not know what questions to ask. You may feel frozen, panicked, or numb.

All of that is normal.

If you are reading this at 2 AM because your child was just diagnosed—or because you are waiting for test results and bracing yourself—this guide is for you. I wrote it to help you understand what happens next, what questions matter most, and how to find the specialized care your child deserves.

You do not need to absorb everything at once. Bookmark this page. Come back to it. Share it with your partner, a grandparent, or a friend who is helping you navigate this. The information will be here when you are ready.

What Are the First Steps After a Childhood Cancer Diagnosis?

The hours and days immediately after a diagnosis can feel chaotic. Here is what to focus on first.

1. Breathe. You Have More Time Than You Think.

Many childhood cancers, while urgent, do not require treatment within hours of diagnosis. You typically have several days—sometimes a week or more—to gather information, ask questions, and begin to make informed decisions. 

In fact, expert groups in pediatric oncology emphasize that a new diagnosis is overwhelming. Understanding all that is required from this point on is a process that will unfold for you over days and weeks, not just during one high-pressure conversation.

Your child’s medical team will let you know if your situation is an exception.

Right now, the most important thing you can do is be present for your child. They are watching you for cues about how to feel. You do not have to be strong. You just have to be there.

2. Make Sure You Have a Pediatric Oncologist

This is one of the most critical steps. A pediatric oncologist is a doctor who specializes exclusively in cancers that affect children and adolescents. Childhood cancers behave very differently from adult cancers—they respond to different treatments, grow at different rates, and require specialized protocols designed for developing bodies.

And, importantly, children with cancer who are treated at specialized, pediatric cancer centers have better survival outcomes than those treated in lower-volume or non specialty settings. 

So, if your child was diagnosed at a general hospital or by a family pediatrician, ask for a referral to a pediatric hematologist-oncologist at a specialized children’s cancer center. This is not about doubting your current doctor. It is about making sure your child has access to the specific expertise their diagnosis requires.

3. Start a Medical Binder and a Digital Folder

From this point forward, you will be receiving a ton of medical information: lab results, scan reports, treatment plans, medication lists, and care instructions. Start organizing it now.

A simple three-ring binder and folder on your phone and/or computer can make a big difference. Be sure to include sections for diagnosis details, treatment schedules, medication names and dosages, insurance information, and contact numbers for your care team. 

Many parents say this single step helped them feel more in control during an otherwise uncontrollable time.

What Questions Should I Ask My Child’s Oncologist?

You will have many appointments in the coming weeks for diagnostic tests, treatment planning, and care coordination. Having questions prepared helps you get the information you need and feel more active in your child’s care.

Here are the most important questions to ask early in the process:

About the Diagnosis

  1. What is the exact type and subtype of cancer my child has?
  2. What stage is the cancer, and what does that mean for my child specifically?
  3. Are additional tests or biopsies needed to confirm the diagnosis?
  4. Is this type of cancer common in children? What is the general prognosis?

About the Treatment Plan

  1. What treatment do you recommend, and why?
  2. What are the potential side effects—both short-term and long-term?
  3. How long will treatment last?
  4. Will my child need surgery, chemotherapy, radiation, or a combination?
  5. Are there clinical trials available for my child’s diagnosis?

About Daily Life During Treatment

  1. Can my child continue going to school? What accommodations might we need?
  2. What symptoms or side effects should prompt an emergency call or visit?
  3. Are there dietary changes or activity restrictions we should know about?
  4. What mental support services—social work, psychology, child life specialists—are available to us?

Do not worry about asking “too many” questions. Your child’s care team expects and welcomes them. If you think of questions between appointments, write them down so you do not forget.

What Should I Expect During My Child’s Cancer Treatment?

Every child’s treatment journey is unique, but understanding the general process can help reduce the fear of the unknown.

Diagnostic Phase

Before treatment begins, your child’s care team will run tests to determine the exact type, location, and extent of the cancer. This may include blood work, imaging scans such as CT, MRI, or PET scans, bone marrow biopsies, or surgical biopsies. This phase can feel like a difficult waiting period, but it is essential for developing the most effective treatment plan.

Treatment Planning

Once the diagnostic workup is complete, the oncologist will present a treatment plan. At a specialized pediatric cancer center, this plan is typically developed by a multidisciplinary team—a group of specialists that may include a pediatric oncologist, surgeon, radiation oncologist, pathologist, radiologist, social worker, psychologist, and child life specialist. This team approach ensures that every aspect of your child’s care is considered, from tumor biology to emotional well-being.

Active Treatment

Treatment may involve chemotherapy, surgery, radiation therapy, immunotherapy, targeted therapy, or some combination. The duration varies widely depending on the diagnosis—some treatment protocols last a few months, while others extend to two or three years.

During active treatment, your child may experience side effects like fatigue, nausea, hair loss, changes in appetite, or increased vulnerability to infections. Your care team will help you manage these side effects and will adjust the treatment plan as needed. Many children tolerate treatment better than parents expect, and your care team will work to maintain your child’s quality of life throughout.

Follow-Up and Survivorship

After treatment ends, your child will continue to see their oncologist for regular follow-up visits. These appointments monitor for any signs of recurrence and manage any long-term effects of treatment. Survivorship care is an important and ongoing part of your child’s journey, and a good pediatric cancer center will have programs specifically designed for childhood cancer survivors.

How Do I Find the Right Pediatric Cancer Specialist?

Not all cancer treatment centers are the same, and where your child receives care can make a meaningful difference in their experience and outcomes. Here is what to look for:

What Makes a Pediatric Cancer Center Different?

  • Board-certified pediatric oncologists who treat childhood cancers exclusively—not adult oncologists who occasionally see children
  • Multidisciplinary care teams that include specialists in surgery, radiology, pathology, psychology, social work, nutrition, and child life
  • Access to clinical trials, which give children the opportunity to receive the newest and most promising treatments
  • Family support services including financial counseling, social work, mental health support, and sibling programs
  • Child-friendly environments designed to reduce fear and support the emotional needs of young patients

Why Specialized Pediatric Care Matters

Children are not small adults. Their cancers are biologically different from adult cancers, and the treatments that work for adults do not always work for children—and vice versa. Pediatric oncologists complete specialized fellowship training focused specifically on childhood cancers, and they follow treatment protocols developed through decades of pediatric-specific research.

Additionally, children’s developing bodies respond differently to treatments like chemotherapy and radiation. A pediatric specialist understands how to balance effective cancer treatment with minimizing long-term impacts on growth, development, fertility, and organ function.

How Do I Take Care of Myself and My Family Right Now?

When your child is diagnosed with cancer, every instinct tells you to focus entirely on them. But your well-being matters too—not as an afterthought, but as an essential part of your child’s support system.

Let People Help

If friends or family offer to bring meals, drive your other children to school, or sit with you during appointments—let them. Many parents feel guilty accepting help, but the people in your life want to support you. Consider setting up a meal train, a shared calendar, or designating one person as the “point of contact” who can relay updates to your wider circle so you do not have to repeat difficult information over and over.

Seek Emotional Support

A childhood cancer diagnosis affects every member of the family. Many pediatric cancer centers offer counseling for parents, therapeutic support for siblings, and child life services to help your child cope with their treatment. You may also find comfort in connecting with other parents who are going through—or have been through—a similar experience. Ask your child’s care team about parent support groups, both in-person and online.

If you notice yourself feeling persistently overwhelmed, unable to sleep, or struggling to function, please reach out to a mental health professional. You are going through one of the hardest experiences a parent can face, and you deserve support too.

Talk to Your Child Honestly

Children are perceptive. Even very young children can sense when something is wrong, and the unknown is often more frightening than the truth. Work with your child’s care team to find age-appropriate ways to explain what is happening. Honesty, delivered with reassurance, helps children feel safe and builds trust during a time when so much feels uncertain.

What About Insurance, Bills, and Financial Help?

The financial dimension of a childhood cancer diagnosis can feel almost as overwhelming as the medical one. Treatment is expensive, and even families with good insurance often face significant out-of-pocket costs.

Here is what to know:

Financial stress is real, and it is valid. But help is available, and you do not have to figure it out alone. Your child’s treatment center should have a dedicated team to help you navigate every aspect of the financial side.

Finding Specialized Pediatric Cancer Care in Nevada

If you are a family in Nevada, Cure 4 The Kids Foundation is the state’s only dedicated pediatric cancer and rare disease treatment center, and we currently employ 100% of Nevada’s board-certified pediatric oncologists. Located at 1 Breakthrough Way in Las Vegas, our clinic provides comprehensive cancer care for children and adolescents, from diagnosis through treatment and into survivorship.

Cure 4 The Kids Foundation’s care model includes board-certified pediatric oncologists, a full multidisciplinary team, access to clinical trials, behavioral health support, genetic counseling, and dedicated family support services. Our foundation was established in 2007 with a simple but powerful promise: no child with cancer will be turned away because of an inability to pay.

You Are Not Alone in This

A childhood cancer diagnosis changes everything, but it does not mean you are navigating this alone. From the medical team caring for your child to the social workers helping your family to the other parents who understand exactly what you are going through, there is a community of support waiting for you.

Take it one day at a time. Ask every question you have. Accept every hand that reaches out. And know that the strength you need is not something you have to find on your own.

It is something that will be built, day by day, by the people standing beside you.

About the Author: Annette Logan-Parker brings over 30 years of experience in pediatric oncology to her role as Founder and Chief Advocacy & Innovation Officer at Cure 4 The Kids Foundation. She has dedicated her career to improving outcomes for children with cancer and ensuring equitable access to cutting-edge treatments for all families.

Frequently Asked Questions

The first and most important step is to make sure your child is connected with a board-certified pediatric oncologist at a specialized children’s cancer center. Pediatric cancers require treatment protocols designed specifically for children, and a pediatric specialist has the training and experience to guide your family through this process.

Ask your child’s pediatrician for a referral to a pediatric hematologist-oncologist. You can also search the American Society of Pediatric Hematology/Oncology (ASPHO) directory or contact a children’s hospital in your area. If you are in Nevada, Cure 4 The Kids Foundation is the state’s only dedicated pediatric cancer treatment center.

Many childhood cancers are highly treatable, and survival rates have improved significantly over recent decades. The prognosis depends on the type and stage of cancer, your child’s age and overall health, and the treatment plan. Your child’s pediatric oncologist can give you the most specific and accurate information for your child’s individual diagnosis.

Work with your child’s care team, especially child life specialists, to find age-appropriate language. Be honest, be reassuring, and let your child ask questions at their own pace. Children generally cope better when they have some understanding of what is happening, even if the details are simplified for their age.

Many resources exist, including hospital charity care programs, nonprofit organizations like the National Children’s Cancer Society and Alex’s Lemonade Stand Foundation, state Medicaid programs, and federal protections like FMLA for work leave. Your hospital’s social worker or financial counselor is the best first point of contact for identifying programs available to your family.

Why Do Kids Get Cancer?

Posted on by Jennifer Glover

Key Takeaways:

  • Childhood cancer typically results from random genetic mutations that occur during rapid cell growth and development, not from lifestyle or environmental factors.
  • Most childhood cancers cannot be prevented, and they’re not caused by anything parents did or didn’t do.
  • Genetic changes in childhood cancer are usually acquired, not inherited—less than 10% of childhood cancers are linked to inherited genetic mutations.
  • Children’s cancers differ fundamentally from adult cancers, as they develop in different cell types and respond differently to treatment.
  • Research is advancing our understanding of childhood cancer causes, leading to better treatments and improved survival rates.

Pediatric Palliative Care
Dr. Waseem Alhushki, Director of Oncology & Long-Term Follow-Up Clinic at Cure 4 The Kids Foundation

When a child is diagnosed with cancer, one of the first questions families ask is “Why?” It’s a natural response to a devastating diagnosis. Understanding why children get cancer can help families process this difficult reality. 

Here’s the most straightforward answer: Most childhood cancers develop because of random, unpredictable changes in the DNA of growing cells. Unlike many adult cancers, which often result from years of environmental exposure or lifestyle factors, childhood cancers typically arise from genetic mutations that occur spontaneously during the body’s rapid growth and development.

This article shares what decades of research tell us about childhood cancer causes—not to replace your child’s medical team, but to provide context for the journey ahead. Every child’s cancer is unique, and your oncology team will provide guidance specific to your child’s situation.

How Does Childhood Cancer Develop?

Every cell in the human body contains DNA, and DNA is like an instruction manual that tells cells how to grow, divide, and function. Occasionally, errors occur when cells copy this DNA during division. Think of these like typos a person might make when copying a book by hand. Researchers often use this comparison because it captures how copying errors naturally occurs even in carefully controlled processes. In children, whose cells are dividing rapidly to support growth, these copying errors can sometimes lead to cancer.

Most of the time, the body’s natural repair systems catch and fix these errors. However, when multiple specific mutations accumulate in the same cell over time, that cell can begin growing out of control—and cancer develops.

Here’s the scale we’re talking about: During normal human cell division, between 100,000 to 1,000,000 DNA replication errors can occur each time a cell divides. The body’s proofreading systems correct nearly all of them, leaving only about 1 error per 10 billion letters of genetic code as a permanent mutation.

Highly Detailed Rendering of DNA

Of the mutations that do persist, research indicates that about 66% of cancer-driving mutations across all age groups are caused by these random, unavoidable copying errors—not by inherited genetics or environmental factors. 

This is why childhood cancer feels so senseless: it’s not punishment, it’s not karma, it’s not something you caused. It’s the statistical reality of copying billions of letters of genetic code millions of times during the rapid growth of childhood.

This understanding changes nothing about your child’s diagnosis, but it can change everything about how you carry it. You didn’t cause this. Embrace that knowledge so you can be fully present for the journey ahead.

Why Childhood Cancer is Different from Adult Cancer

The vast majority of cancer occurs in older adults, with over 50% of all cancers affecting people ages 70 and older. In contrast, childhood cancer is relatively rare, affecting 1 in 264 children and adolescents before age 20, and it develops for fundamentally different reasons than most adult cancers. According to the World Health Organization: “Unlike cancer in adults, most childhood cancers do not have a known cause.”

Different Cancer Types

Children typically develop cancers in different parts of the body than adults. While adults commonly develop carcinomas (cancers in tissues that line organs), children more frequently develop:

  • Leukemias (blood cancers)
  • Brain and central nervous system tumors
  • Lymphomas (lymphatic system cancers)
  • Sarcomas (bone and soft tissue cancers)
  • Neuroblastomas (nerve cell cancers)

For example, Wilms tumor is a type of cancer that affects the kidneys and is diagnosed on average in kids ages 3 to 4. It’s responsible for almost 5% of all childhood cancers and is specific to young children.

Different Causes

Adult cancers can develop after years or decades of exposure to risk factors like tobacco, alcohol, sun exposure, or poor diet. Childhood cancers don’t have time to develop this way—they emerge during the vulnerable period of rapid growth when cells are dividing frequently.

Different Response to Treatment

Because childhood cancers arise differently, they often respond better to treatment than adult cancers. According to the National Cancer Institute: “The cancer mortality rate—the number of deaths due to cancer per 100,000 people per year—among children and adolescents younger than 20 years declined by more than 50% from 1975 to 2022. It dropped from 5.1 per 100,000 children and adolescents in 1975 to 2.2 per 100,000 children and adolescents in 2022.”

While any cancer diagnosis is serious, children’s bodies are often more resilient and responsive to therapies, particularly when they are treated with pediatric treatment regimens.

A patient receiving treatment at Cure 4 The Kids Foundation

The Role of Genetics in Childhood Cancer

It’s crucial to understand the difference between:

Acquired genetic mutations: Genetic changes that occur randomly in a child’s cells after conception. These account for the vast majority of childhood cancers and are not passed down to future generations.

Inherited genetic mutations: Genetic changes passed down from parents that increase cancer risk. These are responsible for around 10% of childhood cancers.

Conditions That Increase Risk

Certain inherited conditions do increase a child’s risk of developing cancer, including:

  • Li-Fraumeni syndrome
  • Neurofibromatosis
  • Down syndrome
  • Beckwith-Wiedemann syndrome
  • Fanconi anemia

However, even with these conditions, cancer is not guaranteed. Conditions like the above simply increase susceptibility.

Known Risk Factors for Childhood Cancer

Unlike adult cancers, very few external risk factors have been definitively linked to childhood cancer. Research has identified only a handful:

Radiation Exposure

High-dose radiation exposure is one of the few confirmed environmental risk factors. This includes:

  • Previous radiation therapy for another cancer
  • Exposure to environmental sources such as radon (common in basements) or building materials
  • Exposure to atomic bomb radiation
  • Certain high-dose medical imaging

Standard medical X-rays and CT scans use much lower doses, and their benefits typically outweigh potential risks. It is crucial to note that, as emphasized by the National Cancer Institute, that CT scans can provide life-saving information for diagnosing illnesses in children and the absolute cancer risks associated with CT scans are small. For every 10,000 children undergoing today’s typical CT exposure (~8 mGy), roughly 1 to 2 might develop a blood cancer due to that exposure over their lifetime.

And although radiation exposure can potentially cause childhood cancer, it’s more likely that exposure during childhood might increase a child’s risk of cancer much later in life.

Some Chemotherapy Drugs

Children who have received certain chemotherapy drugs for a previous cancer have a slightly increased risk of developing a second cancer later.

Weakened Immune System

Children with compromised immune systems—whether from inherited conditions, HIV, or immunosuppressive medications—face elevated cancer risk.

Infusion/Ambulatory Center
A patient receiving treatment at Cure 4 The Kids Foundation

What Parents Cannot Control

This is perhaps the most important message for families: childhood cancer is almost never caused by anything parents did or didn’t do.

Decades of research has found no reliable connection between childhood cancer and:

  • Diet during pregnancy or childhood
  • Prenatal vitamins
  • Living near power lines
  • Cell phone use
  • Household chemicals used normally
  • Parenting practices
  • Physical activity levels

“Our hope is that every family who walks through our doors feels certain of one thing: childhood cancer is never a parent’s fault. It’s not the result of anything they did or didn’t do. When families are freed from that painful question of ‘why,’ they can redirect their energy toward what truly helps—the care, comfort, and courage their child needs.”

Dr. Joseph Lasky, Medical Director at Cure 4 The Kids Foundation

The randomness of childhood cancer can feel unfair…because it is. While this lack of control is difficult to accept, it’s important for families to release any misplaced guilt and focus instead on supporting their child and one another.

The Importance of Ongoing Research for Childhood Cancer

While we’ve made tremendous progress in treating childhood cancer, understanding its causes remains crucial for:

  • Developing better, more targeted therapies
  • Identifying children at higher risk
  • Potentially preventing some cases in the future
  • Reducing late effects of treatment

Organizations like Cure 4 The Kids Foundation and Coalition Against Childhood Cancer (CAC2) support vital research that advances our knowledge of childhood cancer biology and supports the development of new, cutting-edge treatment approaches.

Pediatric cancer research is gaining momentum with historic federal support. In a major win for childhood cancer research, the Childhood Cancer Data Initiative (CCDI) recently saw its annual budget doubled from $50 million to $100 million. This significant funding increase will accelerate efforts to collect, analyze, and share crucial data about childhood cancers, helping researchers worldwide identify patterns, understand causes, and develop more effective treatments faster. Learn more about this landmark funding increase and what it means for families.

Hope in Numbers: Childhood Cancer Survival Rates Continue to Rise

Thanks to vigorous, ongoing research, survival rates for childhood cancer have improved dramatically in recent decades. Mortality rates in children have dropped by 70%, falling from 6.3 deaths per 100,000 to just 1.9 during 2020-2022. Adolescents have seen similar progress with a 63% decline, from 7.2 to 2.7 deaths per 100,000.

The most striking improvements have been in leukemia treatment, where death rates have plummeted by 83% for children and 73% for adolescents. Today, childhood acute lymphocytic leukemia—the most common childhood cancer—achieves remission in 90–100% of cases. Remarkably, these gains came largely from refining and optimizing existing chemotherapy approaches rather than discovering entirely new drugs.

It’s worth noting that while both age groups have benefited from treatment advances, younger children have experienced greater improvements than adolescents. This gap stems from several factors, including biological differences in how tumors behave at different ages, varying rates of clinical trial participation, differences in treatment approaches, and how well patients tolerate and follow treatment protocols.

Cure 4 The Kids Foundation: Nevada’s Only Childhood Cancer and Rare Disease Treatment Center

Since our founding in 2007, Cure 4 The Kids Foundation has operated on a pioneering hybrid model that combines world-class clinical excellence with the heart of philanthropy. This means families receive the rigorous, cutting-edge treatments found in the nation’s top medical centers alongside genuine compassion and support—with one unwavering promise: no child with cancer is ever turned away, regardless of a family’s ability to pay.

As you’ve learned in this article, childhood cancer research is complex and ongoing. Every treatment advancement and improved outcome is possible because of donors who believe in our mission. Your contribution helps us provide exceptional care regardless of financial circumstances, advance critical research into childhood cancer causes and cures, and ensure every child has access to hope and healing.

MAKE A DONATION TODAY

About the Author: Annette Logan-Parker brings over 30 years of experience in pediatric oncology to her role as Founder and Chief Advocacy & Innovation Officer at Cure 4 The Kids Foundation. She has dedicated her career to improving outcomes for children with cancer and ensuring equitable access to cutting-edge treatments for all families.