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"A journey of a thousand leagues begins with a single step."
"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.
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 throat, runny nose, and bad cough. Her counts were on the way down, and they ordered me out of the hospital until I was well. It was agony.
* * *
That first week, every time my son threw up, so did I. I also had almost uncontrollable diarrhea. Every new stressful event in the hospital just dissolved my gut; I could feel it happening. Thankfully this faded away after a few weeks.
To help prevent illness, try to eat nutritious meals, get a break from your child's bedside to take a walk outdoors, and find time to sleep. Care needs to be taken not to overuse alcohol or drugs of any kind (prescription, over-the-counter, or illicit) to control anxiety or cope with grief. Although physical illnesses usually end or improve after a period of adjustment, emotional stress continues throughout treatment.
The shock of diagnosis results in an overwhelming number of intense emotions. Cultural background, individual coping styles, basic temperament, and family dynamics all affect a parent's emotional response to stress. There are no stages of response, and parents frequently find themselves swinging from one emotional extreme to another. Many of these emotions reappear at different times during treatment. All of the emotions described below are normal responses when your child is diagnosed. The emotional responses of children and teens are discussed in Chapter 19, Communication and Behavior.
For weeks after diagnosis, I had trouble sleeping. When I did sleep, I'd wake up abruptly thinking "Lauren might die." Then my next thought was that it was a bad dream. But, it wasn't. It took weeks for that first waking thought to disappear.
Confusion and numbness
In their anguish, most parents remember only bits and pieces of the doctor's early explanations of their child's disease. This dreamlike state is an almost universal response to shock. The brain provides protective layers of numbness and confusion to prevent emotional overload. Pediatric oncologists understand this phenomenon and are usually quite willing to repeat information as often as necessary. Children's hospitals have nurse practitioners, physician assistants, nurses, and child life specialists who translate medical information into understandable language and answer questions from parents and children.
Don't be embarrassed to say you do not understand or that you forgot something you were told. It happens to all parents of kids with cancer. It is sometimes helpful to write down instructions and explanations, record them on a small audio recorder or smartphone, or ask a friend or family member to help keep track of all the new and complex information. These notes can be transcribed and kept with the written materials you receive from the medical providers so you can refer to them later.
The doctor ordered a CBC from the lab. All the while I'm still convinced my son's bleeding gums were caused by his 6-year molars. The rest happened so fast it's hard to recount. We ended up at the hospital getting a bone marrow test. My husband and I tried to tell the doctor that we would go home and let Stephen rest and that when we came back in the morning they could do another CBC. We were positive that his cell counts would go up in the morning. He said that we didn't have until morning. He said Stephen was very, very sick. After the bone marrow test, the doctor called us in a room and said that Stephen had leukemia. After that word I couldn't hear a thing. My ears were ringing, and my body was numb. There were tears in my eyes. It was actually a physical reaction. I asked him to stop explaining because I couldn't hear him. I went back to the hospital room to cry.
* * *
For the longest time (in fact still, three years later) I can hear the doctor's voice on the phone telling me that Brent had leukemia. I remember every tiny detail of that whole day, until we got to the hospital, and then the days blur.
* * *
I felt like I was standing on a rug that was suddenly yanked out from under me. I found myself sitting there on the floor, and I just didn't know how to get up.
Denial is when parents simply cannot believe their child has a life-threatening illness. Denial helps parents survive the first few days after diagnosis, but gradual acceptance must occur so the family can make the necessary adjustments to accommodate cancer treatment. Life has dramatically changed. When parents accept what has happened, understand their fears, and begin to hope, they are better able to advocate for their child and their family. This process takes time.
After our daughter's diagnosis, we had to drive two hours to the hospital. My husband and I talked about leukemia the entire trip and, I felt, started to come to grips with the illness. However, after the IV, the x-rays, and the blood transfusions, he became extremely upset that they were going to admit her. He thought that we could just go home and it would be finished. I had to say, "This will be our life for years."
* * *
My husband and I sat and waited in silence until the doctor came back with the test results. The next thing I knew we were in his office with a primary nurse, a social worker, and a resident listening to the sickening news that our son had leukemia. I couldn't stop crying, and just wanted to grab my 2-year-old son and run far, far away.
Guilt is a common and normal reaction to a diagnosis of childhood leukemia. Parents sometimes feel that they have failed to protect their child, and they may blame themselves. It is especially difficult because the cause of their child's cancer cannot be explained. There are questions: How could we have prevented this? What did we do wrong? How did we miss the signs? Why didn't we bring her to the doctor sooner? Why didn't we insist that the doctor do blood work? Why didn't we live in a safer place? Why? Why? Why? Nancy Roach describes some of these feelings in her booklet The Last Day of April:
Almost as soon as Erin's illness was diagnosed, our self-recrimination began. What had we done to cause this illness? Was I careful enough during pregnancy? We knew radiation was a possible contributor; where had we taken Erin that she might have been exposed? I wondered about the toxic glue used in my advertising work or the silk screen ink used in my artwork. Bob questioned the fumes from some wood preservatives used in a project. We analyzed everything — food, fumes, and TV.Fortunately, most of the guilt feelings were relieved by knowledge and by meeting other parents whose leukemic children had been exposed to an entirely different environment.
It may be difficult to accept, but parents need to understand that they did nothing to cause their child's illness. Years of research have revealed little about what causes childhood leukemia or how to prevent it.
Fear and helplessness
Fear and helplessness are two faces of the same coin. Nearly everything about this new situation is unknown, and the only thing parents really do know — that their child has a life-threatening illness — is too terrifying to contemplate. Each new revelation about the situation raises new questions and fears: Can I really flush a catheter or administer all these drugs? What if I mess something up? Will I be fired if I miss too much work? Who will take care of my other children? How do I tell my child not to be afraid when he can see I am scared to death? How will we pay for this? The demands on parents' time, talents, energy, courage, and strength are daunting.
Sometimes I would feel incredible waves of absolute terror wash over me. The kind of fear that causes your breathing to become difficult and your heart to beat faster. While I would be consciously aware of what was happening, there was nothing I could do to stop it. It's happened sometimes very late at night, when I'm lying in bed, staring off into the darkness. It's so intense that for a brief moment, I try to comfort myself by thinking that it can't be real, because it's just too horrible. During those moments, these thoughts only offer a second or two of comfort. Then I become aware of just how wide my eyes are opened in the darkness.
A child's diagnosis strips parents of control over many aspects of their lives and can change their entire world view. All the predictable and comforting routines are gone, and the family is thrust into a new world that is populated by an ever-changing cast of characters (interns, residents, fellows, pediatric oncologists, surgeons, nurses, social workers, and technicians); a new language (medical terminology); and seemingly endless hospitalizations, procedures, and drugs. This transition can be hard on all parents, particularly those who are intimidated by doctors and medical environments, and those who are used to a measure of power and authority in their home or workplace.
My husband had a difficult time after our son was diagnosed. We have a traditional marriage, and he was used to his role as provider and protector for the family. It was hard for him to deal with the fact that he couldn't fix everything.
Parents often feel utterly helpless. For example, physicians they have never met are presenting treatment options for their child. Parents are also faced with the fact that they cannot do anything that will take away their child's illness or make everything better, and parents' inability to relieve their child's suffering can lead to feelings of great helplessness. Even if parents are comfortable in a hospital environment, they may feel helpless because there is simply not enough time in the day to care for a very sick child, deal with their own changing emotions, educate themselves about the disease, notify friends and family, make job decisions, and restructure the family schedule to deal with the crisis.
It's hard to explain how tired and terrified and empty you feel in the weeks after diagnosis. My husband and I went to Target to get our daughter some favorite foods because she had stopped eating. I needed some reading glasses and saw a display. The sign said to put your toes on the line while trying on the glasses. I was such a mess I thought it said to bend over and touch your toes. I couldn't figure out why I needed to touch my toes. Of course, I had already bent down and touched my toes. Then, we read the instructions again and burst out laughing and couldn't stop. We were laughing like hyenas! It was the first time we'd laughed since diagnosis.
Many parents explain that helplessness begins to disappear when a sense of reality returns. They begin to learn about the disease, study their options, make decisions, meet other parents of children with cancer, and grow comfortable with the hospital and staff. As their knowledge grows, so does their ability to participate constructively as members of the treatment team (for more information, see Chapter 10, Forming a Partnership with the Medical Team). However, don't be surprised if feelings of fear, panic, and anxiety erupt unexpectedly throughout your child's treatment.
Excerpted from "Childhood Leukemia"
Copyright © 2018 Childhood Cancer Guides.
Excerpted by permission of Childhood Cancer Guides.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Table of Contents
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,
12. Central Venous Catheters,
13. Chemotherapy and Other Medications,
14. Common Side Effects of Treatment,
15. Radiation Therapy,
16. Stem Cell Transplantation,
18. Family and Friends,
19. Communication and Behavior,
21. Sources of Support,
23. Insurance, Record-keeping, and Financial Assistance,
24. End of Treatment and Beyond,
26. Death and Bereavement,
A. Blood Tests and What They Mean,
B. Resource Organizations,
C. Books, Websites, and Support Groups,