Parents of Children with Cancer

The Learning Curve for Parents

The Sassy Carmen Foundation

The Sassy Carmen Foundation™ intensely commits to supporting families throughout the challenging experiences involving the care and treatment of a child who carries a diagnosis of cancer. A recent comprehensive overview addressed the critical need for reliable, accurate, and trustworthy information about cancer, along with the palpable need for emotional support, practical assistance, and advocacy for families of children with cancer. The research found that the most needed information was on cancer-related consequences. According to the authors: “Understanding and meeting the information needs of family members is necessary for optimal health and healthcare outcomes” and can positively influence the ill child’s emotional regulation, decision making, and symptoms management. ¹

Learning Needs of Parents of Children with Cancer

Are your thoughts about your child having cancer overwhelming? As parents of a child with cancer, you’ll find you’ll want to learn all you can about your child’s illness. You will need to have consistent and reliable information that is focused on the diagnosis and treatment of your child. During your child’s illness, many people and resources will be available to you who can help you learn about your child’s cancer, its treatment, and what you can expect. Understand that you are not alone. The Sassy Carmen Foundation, for example, works to support families during the course of cancer treatment, while your clinical team (doctors, nurses, therapists, etc.) will also be an indispensable resource and valuable support for you and your family.

Cancer

Cancer is not just one disease. It is a group of related diseases. Other names for cancer include neoplasm and malignant tumor. But all neoplasms and tumors are not cancers. The word “cancer” refers to malignancy and does not describe benign growths². Benign tumors are slow-growing and don’t grow into nearby tissues or spread to other parts of the body. Treatment becomes necessary if benign tumors grow large enough to cause discomfort by pressing on other structures. Surgical removal or treatment with radiation or medication can successfully treat these growths. These tumors are not malignant. ³ Some, approx. 8-10% of all childhood cancers, however, are thought to be caused by an inherited gene mutation (passed from parent to child).

Leukemia

According to the National Cancer Institute (NCI), leukemia is a “cancer that starts in the blood-forming tissue such as bone marrow and causes a large number of abnormal or immature white blood cells to be produced and enter the bloodstream.” There are two types of childhood leukemia: Acute Lymphoblastic Leukemia (ALL) and Acute Myeloid Leukemia (AML).

Two types of Leukemia

Acute Lymphoblastic Leukemia (ALL)/lymphoblastic lymphoma (LBL) is the most common childhood cancer, occurring in 3.4 per 100,000 cases and peaks between ages two to five years, and is higher in boys than girls. ⁴

Acute Myeloid Leukemia (AML) is characterized by uncontrolled clonal (from a single cell) expansion of myeloid progenitors. Progenitors are descendants of stem cells that become specialized cell types.

Signs and Symptoms of Childhood Leukemia

The symptoms of Leukemia are related to problems in the bone marrow. As leukemic cells, or immature white blood cells, gather in the blood, they crowd out normal blood cells. This results in the failure of normal blood cell formation. ⁵ So, the child may not have enough red blood cells (RBCs), white blood cells (WBCs), or platelets. By examining a complete blood count, cells and the type identified can be counted. Since RBCs carry oxygen to all body parts, insufficient RBC counts can lead to feeling tired, weak, cold, dizziness and lightheadedness, shortness of breath, or appearing pale.

White blood cells help fight infection. Leukemia causes high WBC counts, but these are leukemia cells, which take the place of normal WBCs, so they do not protect against infections. This leads to fever and infection.

Platelets work to prevent and stop bleeding by forming clumps where the bleeding occurs and acting like a plug. This prevents blood from leaving your body. Low platelet counts, also known as thrombocytopenia, increase the risk of bleeding, particularly from the nose, mouth, and gastrointestinal tract. RBCs and platelets can be replaced by transfusing RBCs and platelets from donated blood back into your body.

However, this does not cure leukemia. It is done to help the symptoms that low blood counts, such as weakness and fatigue, cause. Signs of low platelets include easy bruising, nosebleeds, and bleeding gums. Additional symptoms include bone and joint pain, abdominal swelling (the belly), loss of appetite and weight, and swollen lymph nodes.

Tests and Procedures

The tests done to diagnose your child’s cancer will depend on the symptoms, your child’s age, medical history, and the type of suspected cancer. This will begin with: a physical exam by the doctor, blood tests, scans (that see inside your child’s body), CT scans, MRI scans, PET scans, X-rays, and ultrasounds.

A doctor specializing in analyzing these tests (a radiologist) will review the scans and report the findings to your child’s doctor. ⁶

Biopsy

Your child may require a procedure called biopsy to remove samples of tissue to examine for cancer cells. Lymph nodes and the bone marrow is drawn into a syringe. A pathologist will study the samples taken for biopsy and write a pathology report on them.

Bone Marrow Aspiration and Bone Marrow Biopsy

The doctor carries out a bone marrow aspiration by inserting a thin, hollow needle into the bone, and the syringe draws out a small amount of liquid bone marrow. A bone marrow biopsy, usually done after aspiration, removes a small piece of bone and bone marrow by a larger needle pushed down into the bone.

At the end of the procedure, pressure to the site will help stop bleeding. The samples are sent to the lab for examination by the pathologist for classification into different types. ⁷

Tests that classify leukemia cells based on proteins in the cell are flow cytometry and immunohistochemistry. These tests determine the type and subtype of leukemia. These tests commonly target bone marrow cells. This testing can also be done on blood cells, lymph node cells, and body fluids. ⁸

Flow cytometry assesses the amount of DNA in leukemia cells. Cells with greater amounts of DNA are more sensitive to chemotherapy, and this type of leukemia has a better prognosis or outlook. Flow cytometry also gauges response to treatment or the existence of minimal residual disease in certain leukemias. ⁹

Brain and Central Nervous System Tumors

Brain and central nervous system tumors (spinal cord) may be benign or malignant. According to Johns Hopkins Medicine, “brain tumors are the most common solid tumors affecting children and adolescents.” Nearly 5000 children account for new diagnoses with these tumors yearly. ¹⁰ Your skull cannot contain a mass greater than the brain itself. This means that when tumors grow in the brain, pressure builds up in the space. This is called intracranial pressure (inside the skull). This occurs when extra tissue mass grows in the brain. These masses can also obstruct spinal fluids from flowing through the spinal canal, although these tumors are less common. ¹¹

Symptoms of brain tumors include headaches, seizures, nausea and vomiting, irritability, lethargy and drowsiness, personality and mental activity changes, macrocephaly (enlarged head) in infants whose skull bones have not yet fused, and coma and death if left untreated. The skull cannot accommodate a mass more significant than the brain itself. As tumors grow in the brain, they increase pressure in the confined space. This condition, called intracranial pressure (pressure inside the skull), develops when extra tissue mass grows in the brain. These masses can also block spinal fluids from flowing through the spinal canal, although these tumors occur less frequently.¹¹

Symptoms of brain tumors include headaches, seizures, nausea and vomiting, irritability, lethargy and drowsiness, personality and mental activity changes, macrocephaly (enlarged head) in infants whose skull bones have not yet fused, and coma and death if untreated. When a brain tumor develops in the cerebellum or the back of the brain, the child may lose equilibrium, balance, and motor coordination.

Other Cancers and Tumors in Children

According to the American Cancer Society, additional common cancers occurring in children are:

  1.  Neuroblastoma: a tumor that forms in the nerve tissue of the neck, spinal cord, and adrenal gland¹²
  2. Sarcoma: cancer that forms in the bone, muscle, and soft tissue; ¹³
  3. Ewing sarcoma: forms in the bone or soft tissue¹⁴
  4. Osteosarcoma: forms in the bone¹⁵
  5. Soft tissue sarcoma: forms in muscle, fat, fibrous tissue, blood vessels, or other supporting tissues of the body¹⁶
  6. Rhabdomyosarcoma: forms in the muscle tissue and is the most common type of soft tissue sarcoma in children¹⁷
  7. Wilm’s tumor starts in one or, rarely, both kidneys. It is most often found in children about 3 to 4 years old and uncommon in older children and adults. ¹⁸
  8. Lymphoma (including Hodgkin’s and non-Hodgkin’s) comes from the lymphatic system, part of the immune system. ¹⁹
  9. Retinoblastoma is a cancer of the eye that affects children as young as two and is rarely found in children older than six. ²⁰

Additional Resources

While recognizing the palpable need for emotional support, practical assistance, and advocacy, we also acknowledge the critical need for reliable, accurate, and trustworthy information about cancer. We are here to address the information needs of families of children with cancer in a comprehensive and empathetic manner.

The primary mission of the Sassy Carmen Foundation is to offer support, joy, and guidance to all Sassy Kids and their families as they advance through diagnosis, treatments, and recovery. Follow the Sassy Carmen Foundation Blog to discover support programs and events and where to find considerable information on cancer treatment and care, as well as for supporting the Sassy Carmen Foundation.

References

  1. Ilic, A., Sievers, Y., Roser, K., Scheinemann, K., & Michel, G. (2024). The information needs of relatives of childhood cancer patients and survivors: A systematic review of qualitative evidence. Patient Education and Counseling, 126, 108316.
  2. McCance, K. (2010). Pathophysiology The Biologic Basis for Disease in Adults and Children 6th Ed (S. Clark, Ed.; 6th ed., p. 361). Mosby Elsevier.
  3. Childhood Cancers. (retrieved 2024, October 25). https://www.cancer.org/cancer/understanding-cancer/what-is-cancer.html
  4. Overview of the Clinical Presentation and Diagnosis of Acute Lymphoblastic Leukemia/Lymphoma in Children – UpToDate.    https://www.uptodate.com/contents/overview-of-the-clinical-presentation-and-diagnosis-of-acute-lymphoblastic-leukemia-lymphoma-in-children?search=childhood%20cancer&topicRef=6243&source=see_link
  5. Brain Tumors in Children. (n.d.). hopkinsmedicine.org.
  6. Ladikou, E. E., Ashworth, I., Seviar, D., & Chevassut, T. (2022). Acute leukemia: no reason to panic. Clinical Medicine, 22(3), 221–224. https://doi.org/10.7861/clinmed.2022-0149
  7. Differentiate – Definition, Meaning & Synonyms. (n.d.). vocabulary.com. Retrieved November 1, 2024, from https://www.vocabulary.com/dictionary/differentiate
  8. Childhood Cancers. (2024, October 25). https://www.cancer.org/cancer/acs-medical-     content-and-news-staff.html 

¹⁰‾¹¹ Brain Tumors in Children.

https://www.hopkinsmedicine.org/health/conditions- and-diseases/brain-tumor/pediatric-brain

¹²ˉ²⁰ Types of Cancer that Develop in Children

https://www.cancer.org/cancer/types/cancer-in-children/types-of-childhood-cancers.html

Parents of Children with Cancer

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