Childhood Leukemia

A Guide for Families, Friends & Caregivers

By Nancy Keene

Childhood Cancer Guides

Copyright © 2018 Childhood Cancer Guides
All rights reserved.
ISBN: 978-1-941089-04-0

Contents

Introduction,
1. Diagnosis,
2. Overview of Childhood Leukemia,
3. Acute Lymphoblastic Leukemia,
4. Acute Myeloid Leukemia,
5. Juvenile Myelomonocytic Leukemia,
6. Chronic Myelogenous Leukemia,
7. Telling Your Child and Others,
8. Choosing a Treatment,
9. Coping with Procedures,
10. Forming a Partnership with the Medical Team,
11. Hospitalization,
12. Central Venous Catheters,
13. Chemotherapy and Other Medications,
14. Common Side Effects of Treatment,
15. Radiation Therapy,
16. Stem Cell Transplantation,
17. Siblings,
18. Family and Friends,
19. Communication and Behavior,
20. School,
21. Sources of Support,
22. Nutrition,
23. Insurance, Record-keeping, and Financial Assistance,
24. End of Treatment and Beyond,
25. Relapse,
26. Death and Bereavement,
Appendices,
A. Blood Tests and What They Mean,
B. Resource Organizations,
C. Books, Websites, and Support Groups,

CHAPTER 1

Diagnosis

"A journey of a thousand leagues begins with a single step."

— Lao-tzu

"We have the results of the blood work back. I'm afraid it's bad news. Your child has leukemia." For every parent who has heard those words, it is a moment frozen in time. In one shattering instant, life forever changes. Families are forced into a strange new world that feels like an emotional roller coaster ride in the dark. Every member of the family will feel strong emotions. However, with time and the knowledge that most children survive leukemia, hope will grow.

Signs and Symptoms

Parents are usually the first to notice that something is wrong with their child. Occasionally, a pediatrician sees a problem during a well-baby visit, or the disease is discovered by chance through a routine blood test. Unfortunately, because some of the signs and symptoms of leukemia mimic other conditions, diagnosis is sometimes difficult.

The onset of the disease can be slow and insidious or very rapid. Children begin to tire easily and rest often. Frequently, they have a fever that comes and goes. Interest in eating gradually diminishes, but only some children lose weight. Parents usually notice pale skin and bruising. Tiny red spots may appear on the skin. 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 may protrude due to enlargement of the spleen and liver. Children become irritable, and may have nose-bleeds. Parents often have an uneasy feeling that something is wrong, but they cannot pinpoint the cause for their concern.

Preston (10 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 workand a chest x-ray, and within 30 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 orders blood work, including a complete blood count (CBC). Sometimes the diagnosis is not so easy or as fast as Preston's.

I had been worried about Christine (3 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 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."

When I took her to the doctor, 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. When I told him again of Christine's difficulties with preschool, he suggested that I read a book entitled "The Difficult Child." I brought her back again and they put her on antibiotics. When her symptoms got worse, they gave her a different antibiotic.

Things continued to deteriorate and I was starting to feel frantic, so I went to talk to my neighbor who had recently retired after 40 years of nursing. She said I should take her to the doctor immediately and insist on blood work. When I took her in that afternoon, her white count was over 240,000 (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 to the closest major children's hospital for further tests and treatment. It is very important that children with leukemia be treated at a facility that uses a team approach, including pediatric oncologists, oncology nurses, pathologists, nurse practitioners, radiologists, psychologists, child life 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 wasworried 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 pediatric oncologist will perform a spinal tap to determine whether any leukemia cells are present in the cerebrospinal fluid and a bone marrow aspiration to identify the type of leukemia. Details of these procedures are described in Chapter 9, Coping with Procedures.

Physical Responses

Many parents become physically ill in the weeks after their child's diagnosis. This is not surprising, given that most parents stop eating or grab only fast food, have trouble sleeping, and are exposed to all sorts of illnesses while staying in the hospital. Every waking moment is filled with excruciating emotional stress.

The second week in the hospital, I developed a ferocious sore...