Pediatric cancer patient
By Danielle Loumagne, RN
05/19/2024

All You Need to Know About a Pediatric Cancer Diagnosis

What Is Pediatric Cancer?

Cancer develops when abnormal, immature cells multiply out of control and accumulate within  an affected area. This inhibits the formation and utilization of healthy cells and compromises the area the cancer is in. The Cleveland Clinic defines Pediatric Cancer as a group of cancers that affects children (infants to age 14) and teenagers (ages 15-19). While a cancer diagnosis in children is significantly less common than in adults, the impact the diagnosis has on the child and their family is significant. A deeper understanding of your child’s diagnosis can help you and your child make informed decisions and feel more equipped for the journey ahead.

Types and Signs & Symptoms of Pediatric Cancer

There are many types of pediatric cancer diagnoses and each affects a different part of the body. They are often divided into two categories: Hematologic Cancers and Solid Tumor Cancers. Some of the most common pediatric cancer diagnoses include:

Hematologic Cancers
  • Leukemia occurs in the bone marrow and blood. Symptoms include an increase in illnesses and infections, unexplained fevers, fatigue, bleeding, pale skin, and weight loss.
  • Lymphoma develops in the lymphatic system, part of the immune system. Symptoms include night sweats, painless swelling in lymph nodes and other parts of the body, fevers, and weight loss.
Solid Tumors
  • Brain Tumors and tumors in the spine are the most common kinds of solid tumors in children and can occur in various areas of the brain, skull, and spine. Symptoms include headaches, nausea/vomiting, seizures, lethargy/drowsiness, macrocephaly (enlarged heads), and personality changes.
  • Neuroblastoma arises from immature nerve cells, most commonly developing in the abdomen or chest. Symptoms include abdominal pain, constipation or diarrhea, non-tender masses under the skin, back pain, wheezing, and chest pain.
  • Sarcomas are cancers of the bones. Osteosarcoma tumors occur outside of the bone, most commonly forming on the long bones, and can often spread to the lungs. Ewings Sarcoma occurs in the bone tissues and most commonly occurs in the leg bones, pelvis, and ribs. Symptoms for both may include bone pain, easily fractured bones, impaired movement, tenderness and swelling near the tumor site, fever, and fatigue.
  • Wilms Tumor, also known as Nephroblastoma, is a cancer of the kidneys. Symptoms include a noticeable abdominal mass, abdominal pain and swelling, high blood pressure, fever, and blood in the urine.

Tubes of blood samples

Pediatric Cancer Causes and Risk Factors

While there are some potential variables that may increase a child’s risk for developing cancer, it is important to note that specific causes for pediatric cancers are not well understood and it is extremely rare that a specific cause is identified. It is also important to note that most, if not all, of the risk factors are ones that cannot be controlled, and there is no way the parent or caregiver could prevent them.

The risk factors may include genetics (both inherited and rare mutations), environmental exposures, such as pesticides or previous radiation exposure, and auto-immune diseases.  Race, age and gender may also play a role in increasing your child’s risk for certain cancers.   

As the American Cancer Society stresses, “it’s important to know that it’s extremely unlikely there is anything you or your child could have done to prevent it.” Your child’s cancer diagnosis is not your fault, and there is nothing you could have done differently.

Diagnosing Pediatric Cancer

Depending on your child’s symptoms, different tests will be performed to determine your child’s diagnosis. These may include urine and blood tests, bone marrow, tissue or bone biopsies, and imaging such as CT Scans, ultrasounds and x-rays. Genetic and biomarker testing may also be performed. Not only will these help identify your child’s diagnosis, but they will also provide your doctor with information on the specifics of your child’s cancer and allow them to personalize and select the treatment plan that is best for your child.

Pediatric Treatment Options

Your child’s treatment plan will be determined by their specific situation, taking their diagnostic tests, genetics, and initial symptom presentation into consideration. Your child will be treated at an organization certified by the Children’s Oncology Group (COG) and following treatment plans set through this organization. Treatment may include a combination of:

  • Chemotherapy: drugs designed to kill rapidly dividing cells within the body, including cancer cells
  • Immunotherapy: drugs designed to help the body’s immune system target and specifically destroy cancer cells
  • Targeted Therapy: drugs that are able to specifically target and kill cancer cells
  • Surgery to place a central line, remove a tumor, or for a variety of other reasons
  • Radiation: a treatment utilizing beams of radioactive energy to shrink and destroy tumors
  • Stem Cell Transplants: to replace their bone marrow or restore your child’s immune system post-treatment 

Pediatric patient holding hands with worker

Challenges and Side Effects of Treatment

Depending on their treatment, your child may experience side effects such as nausea/vomiting, fatigue, hair loss, mouth sores and skin rashes. Significant weight loss or weight gain may occur and frequent mood swings may be noted due to steroids and feeling unwell during treatment.  Certain illnesses, such as a common cold or fever may lead to unexpected admissions due to weakened immune systems. During their care, their vitals and labs will be closely monitored and certain assessments and scans, such as x-rays, will often be utilized to ensure your child stays safe and healthy.

Always speak up and report any new symptom or change you notice. Your care team wants to know everything that is going on and something that may seem inconsequential to a healthy child, may actually mean something serious to a child undergoing treatment. Your care team can also provide you with tips and strategies to best overcome some of these side effects, such as prescribing a mouth rinse medication to help with pain control and healing of mouth sores, and encouraging more frequent diaper changes during chemotherapy to prevent rash and burns to their skin.

Emotional Support for Parents and Patients

A pediatric cancer diagnosis alone can cause a multitude of complex feelings for the child, caregivers, and the community surrounding them. Fear, sadness, stress of the unknown and the severity of the illness can all compound and become difficult emotions to navigate through.

Depending on the child’s age, different challenges may arise. They may be too young to fully understand the situation, or they may feel sad as they miss out on school, sports and time with friends. Changes in physical appearance during treatment can lead to insecurity and isolation.

Many challenges arise for the caregiver as well. Managing outpatient appointments and potential inpatient admissions causes stress with logistics and schedules, especially if there are siblings to care for and schedule around as well. Sleep deprivation and being hyper-vigilant with monitoring your child to help address and relieve your child’s symptoms can be emotionally and physically draining. Caring for your child’s central line to ensure a central line infection does not develop may feel scary and like a huge responsibility.

Your child’s care team will have a list of resources and communities that both you and your child can seek out for emotional support and find those who are going through similar situations. If possible, be mindful to schedule visits with (healthy) friends and, even if they are modified, ensure you and your child are taking time to do activities and hobbies that you enjoyed pre-diagnosis. 

Long-Term Effects and Survivorship

After treatment, your child will continue with follow-up scans and appointments to ensure they continue to be cancer-free and to monitor any new side effects that may arise. Depending on what treatment your child received, they may more closely monitor different parts of their body such as their hearing or their lung, heart, and liver function. Their skin may be more sensitive to rashes and the sun. You may notice their growth being stunted and learning disabilities may arise. Due to their exposure to chemotherapy and/or radiation, they have an increased risk of secondary cancer developing later in life. Research and treatment options have been rapidly evolving, focusing on lessened side effects and increasing your child’s quality of life during and post-treatment, so don’t hesitate to speak with your care team about the available options.

Childhood Cancer Awareness and Advocacy

There are many resources providing families with educational, emotional, financial, and community support. Getting connected with the group listed below and other resources provided locally and through your hospital will provide a wealth of knowledge and hopefully some comfort and connection with other families going through a similar experience.

  • Association of Pediatric Hematology/Oncology Nurses: Offers a comprehensive guidebook for over 20 Pediatric Cancer and Blood Disorder diagnoses as well as many online resources, support groups and nonprofits.
  • Leukemia and Lymphoma Society: Provides extensive information on blood cancers, including patient support and financial assistance.
  • Children’s Oncology Group: As a leading organization in pediatric cancer research, COG has a wealth of resources for families and professionals.
  • Jude Children’s Research Hospital: Known for its pioneering work in pediatric oncology, St. Jude offers treatment information, clinical trials, and patient stories.
  • CureSearch for Children’s Cancer: Focuses on driving research, providing information, and supporting families dealing with childhood cancer.
  • Here To Serve: A national organization that provides financial, physical, and emotional wraparound services and support to families with children battling cancer.
  • CaringBridge: A nonprofit providing a free social networking resource to easily and efficiently send updates on your child’s cancer journey to family and friends

Conclusion

A pediatric cancer diagnosis can feel devastating and scary, but being equipped with a community and resources, and being as knowledgeable as possible will help you feel more confident as you navigate your child’s cancer journey.

Remember to ask for help and know you are not alone; you have a community here at Here to Serve to walk alongside you and help you during this difficult time.

Parents who have gone through or are going through this, comment below on what has helped you during treatment, or what you would like Here to Serve to support and provide resources in.

Resources Cited:

About the Author

Danielle Loumagne is a Registered Nurse and Bone Marrow Transplant Certified Nurse who has worked in Pediatric Hematology/Oncology for over 13 years. As a Health Content Writer, she utilizes her experience to share deeper insights regarding what goes on within the hospital setting, and strives to help her readers at Here to Serve feel more prepared and educated for their treatment and care.

Here To Serve Summary

Here to Serve is a national nonprofit dedicated to supporting families with children facing cancer through comprehensive in-home care and coordinated services. Through experienced family care coordinators, the organization connects families to essential physical, financial, and emotional resources, helping them feel supported, informed, and empowered throughout their child’s cancer journey.