Signs and Symptoms

The following excerpt is taken from Chapter One of Childhood Leukemia: A Guide for Families, Friends, and Caregivers, 2nd Edition by Nancy Keene, copyright 1999 by O'Reilly & Associates, Inc. For book orders/information, call (800) 998-9938. Permission is granted to print and distribute this excerpt for noncommercial use as long as the above source is included. The information in this article is meant to educate and should not be used as an alternative for professional medical care.

Leukemia is cancer of the spongy blood-forming tissues that make up the bone marrow inside large bones. The diseased bone marrow floods the body with abnormal white cells. These cells do not perform the infection-fighting functions of healthy, mature white cells. Moreover, production of red cells, which carry oxygen, and platelets, which help prevent bleeding, is decreased.

Diagnosis of leukemia is extremely difficult because many symptoms mimic those of normal childhood illnesses. The onset of the disease can be slow and insidious or very rapid. Initially, children begin to tire easily and rest often. Frequently, they have a fever which comes and goes. Interest in eating gradually diminishes, but only some children lose weight. Parents usually notice pale skin and occasional bruising. Some children develop back, leg, and joint pain which makes it difficult for them to walk. Often lymph nodes in the neck or groin become enlarged, and the upper abdomen protrudes due to enlargement of the spleen and liver. Children become cranky and irritable, and occasional nosebleeds develop.

Usually parents have an uneasy feeling that something is wrong, but cannot pinpoint the cause for their concern:

Preston (ten years old) had an incredible diagnosis. We were very lucky. We were at our beach cabin for Thanksgiving. Preston was tired and listless and had a low-grade fever (99-100) that had persisted for several days. We were bringing his younger sister into town to attend a birthday party, so we decided to bring Preston in to have him checked by the pediatrician on call. The doctor asked Preston what was wrong, and he said, "I don't know, I just feel awful." The doctor ordered blood work and a chest x-ray, and within thirty minutes I was told that he had a "blood cancer." I wanted to take Preston back to the cabin, but was told we needed to go immediately to the hospital, where Preston was admitted, and treatment began.

Most parents react to their concerns by taking their child to a doctor, as Preston's parents did. Usually, the doctor performs a physical exam and frequently orders blood work, including a complete blood count (CBC). Sometimes the diagnosis is not so easy or fast as Preston's:

I had been worried about Christine (three years old) for two weeks. She was pale and tired. She ate nothing but toast, and had developed bruises on her shins. At preschool, she was unusually irritable, and would utter a high-pitched scream whenever upset. She told me that she didn't want to go to preschool anymore, and when I asked why, she said, "It's just too much for me, Mommy."

I took her to the doctor on an afternoon when he was very busy. He measured Christine's weight and height, pronounced them normal, and described her lack of appetite as "nothing to worry about." I told him that all she was doing was lying on the couch and asked why she would have bruises on her legs. He said bruises on shins always take a long time to heal. When I pointed out how pale she was, he stated that all children are pale in the winter.

I grew more and more concerned and took her back the next week. The doctor discovered an ear infection and prescribed antibiotics. I asked why her eyelids were puffy and he thought it was from sinuses. When I told him of Christine's withdrawal from preschool, he suggested that I read a book entitled The Difficult Child.

Things continued to deteriorate, and I called three days later to say that she seemed to be sicker. Her prescription for antibiotics was changed without the doctor seeing her. I was starting to feel frantic, and went to talk to my neighbor who had recently retired after forty years of nursing. I told her I was afraid Christine had leukemia, and I cried. She said I should take her back to the doctor and insist on blood work. When I took her in that afternoon, her white count was over 200,000 (normal is 10,000, the rest were cancer cells) and her hematocrit ( percentage of oxygen-carrying red cells) was 12, far lower than the normal 36.

Where should your child receive treatment?

After a tentative diagnosis of leukemia, most physicians refer the family for further tests and treatment to the closest major medical center with expertise in treating children with cancer. It is very important that the child with leukemia be treated at a facility that uses a team approach, including pediatric oncologists, oncology nurses, specialized surgeons and pathologists, pediatric nurse practitioners, pediatric radiologists, rehabilitation specialists, education specialists, and social workers. State-of-the-art treatment is provided at these institutions, offering your child the best chance for remission (disappearance of the disease in response to treatment) and ultimately, cure.

When we were told that Katy had leukemia, for some reason I was worried that she would miss supper during the long road trip to Children's Hospital. Why I was worried about this when she wasn't eating anyway is a mystery. The doctor told us not to stop, just to go to a drive-through restaurant. I was so upset that I only packed Katy's clothes; my husband, baby, and I had only the clothes on our backs for that first horrible week.

Usually the child is admitted through the emergency room or the oncology clinic, where a physical exam is performed. An intravenous line (IV) is started, more blood is drawn, and a chest x-ray is obtained. Early in your child's hospitalization, the oncologist will perform a spinal tap to determine if any leukemia cells are present in the cerebrospinal fluid and a bone marrow aspiration to identify the type of leukemia.