JLS Foundation
Home

Useful Information
User's Guide

What to Expect
Parents
Your Child
Brothers and Sisters
Friends

Treatments
Chemotherapy
Bone Marrow Transplants
Nutritional
Alternative/Homeopathy

Communication
History
Mission Statement
Reference
Correspondence
Sponsors 

What to Expect | Your Child

What are some practical suggestions?

The initial diagnosis of Jennifer was one of the hardest challenges we have faced as parents. We were immediately thrust into how to care for her emotionally, physically, and spiritually. Jennifer, her brother Will, and friends asked very difficult questions about the diagnosis. The following practical suggestions were developed from our experience and from other families whose children were battling leukemia.

What are the emotional concerns?

Parents will find themselves asking whether or not I should tell my child, when should I tell my child, and how should I tell my child that he or she has been diagnosed with leukemia. The method often used by parents in the 60s and 70s was to shield their child from the news and discuss just that the child was sick. Experience and case studies have found that it is best to be open and honest with your child, while providing a reassuring and gentle hope that the leukemia will go into remission. How much and what type of information you should give your child at this point should be based upon the child's personality and age.
 

• Infants (0-2 years of age) - Toddlers are often told that they are sick and that they will have to take medicine to get better. They don't have the ability to understand an illness such as leukemia. The parents do best to comfort their child regarding the medical procedures and let them know that needles do hurt. The parents should be aware that their children are scared of being separated from them at this age and give them reassurance that they will be back. We found parents that gave their children the choices such as what type of juice to drink, etc. help the children in their need to control things around them.
• The hospitalization and the medical tests can be a traumatic experience for the toddler. The parents should inquire as to the hospital's policy to be present during medical procedures such as spinal taps or bone marrow aspirates. The parent has to be prepared to see their child suffer and be of a calming presence. Otherwise, they should not be present in the procedure room.
• Preschoolers (2-7 years of age) - The age related concerns for these children typically are physical injury and bodily harm. These children are better able to understand the seriousness of leukemia as a sickness. The child at this age typically believes their leukemia is tied to a specific action and needs to be reassured that they did nothing to cause their illness. The need for honest and clear communication of the medical procedures will be important to reduce these children's fears.

  Jennifer was five years old when initially diagnosed with acute myeloid leukemia. We subsequently learned that it helped her to separate the disease, which was a sickness, from herself as a five year old girl. We found referring to Jennifer as a child with leukemia versus a "sick child" helped her understand that this illness and the resulting treatments were not punishment for something she had done.

  The hospital play room, if one is available, or letting your child play with medical equipment such as tubes, tape, etc. can help reduce the child's fear of hospital equipment, procedures and personnel. Children can use the playroom to help relax and provide an atmosphere where they can ask questions and act out their concerns and anger.

• Young Children (7-12 years of age) - The age related concerns for children of this age group typically relate to questions about the diagnosis and how will the treatment affect them. They are starting to understand the relationship between a series of events and are likely to ask more detailed questions about leukemia and the treatments. The parent should be prepared to answer these questions or have a physician or treatment team member available as a reference. We found the words "I don't know" were far better than trying to gloss over or answer incorrectly the child's questions. There are several good reference books on helping children in this age group, since they now are beginning to or can read. These books are set forth in the Reference section.

  Children in this age group are starting towards independence. The more a parent can give the child choices that do not hinder the treatment process, the better the child can feel he or she is "in control" of part of their world. The child should be told there will be continuous hospital and clinic visits that will now become part of his or her daily life during the treatment program. This will help the child to feel he or she is participating in the treatment program versus it being a limitation of their independence.
   

• Teenagers (12+ years of age) - The age related concerns of children as teenagers relate to fears about the diagnosis and treatment, and also what will be the implications on their normal activities, appearance and relationships with friends. These children often equate the initial diagnosis of leukemia with dying. The parents need to reassure the children that there are great (70%+) chances for remission with acute lymphatic leukemia, and less percentages for more aggressive leukemias. The research in traditional medicine and homeopathy/alternative treatments is continuing to make progress. The child should be encouraged not to give up hope.

  The teenager finds himself losing independence at a time he is striving to gain independence from his parents and other authority figures. We found a number of times that teenagers wanted to undergo by themselves a procedure, a discussion with the doctor and nurses, or a medical test. The parents and children that fared the best were those that had open communication regarding this independence and allowed the teenager to exert as much control as possible in his or her treatment program.

What are the physical concerns?  

• Side Effects - Traditional medicine uses chemotherapy and transplants in order to interrupt or slow down the growth of the cancer cell and its impact upon healthy cells. We also found a number of homeopathy/alternative treatments also used medicines or chemicals that had a negative impact upon healthy cells. This impact on healthy cells is what causes the unpleasant side effects and long-term effects on the child.

  The side effects are classified as immediate versus delayed, and temporary versus acute. The side effects are discussed in the section under Chemotherapy and under Bone Marrow Transplants. The parents can best help their child if they are made aware of the typical side effects and work with their treatment team in coping and minimizing these side effects. The materials and pamphlets listed in the Reference section set forth proven and successful ways to cope with side effects.

• Long Term Effects - The parents will soon realize from either clinical visits or from talking to other parents that have walked down this road that there can also be long term effects caused by damage to healthy cells. The concerns of the child and the parents include sexuality, reproductive ability, future insurance coverage, continued fear that the disease may come back, and other real concerns. We found that living one day at a time and being grateful for the gift of life for that day was helpful in meeting these real concerns. The support of the parents and the family will be of critical importance to the child at these times.

What are the spiritual concerns?

• Faith - The legacy of a child who has faced and battled leukemia is one that can bring strength and determination to the parents and the rest of the family. These children help us realize that life is a gift from God and should be held with an open hand and savored every minute. The religious and spiritual beliefs of the parents and family often become a powerful factor after the initial diagnosis. We observed a number of people saying that their faith in God or Jesus Christ helped them or their child to live one day at a time. Their belief in God or Jesus Christ gave them the strength to meet the new demands in their lives.
• Hospice and Preparing Your Child For Death - There are many of us who have children who do not achieve remission or do not stay in remission. Death, just like birth, is the natural order of our lives. The parent finds that preparing their child for death and putting their lives back together again will be as challenging as the battle against leukemia. Some general suggestions and information about hospice will be helpful to the parent. Information is set forth in the Reference section.

What common questions are asked by children?

• Questions - Parents will find that even quiet unassuming kids will ask or be thinking about a number of questions after being told of their leukemia diagnosis and during the treatment phase. These questions generate from the child's own experience and observation of other children. Moreover, friends and "well wishers" will often raise questions not thought of before by the child.

  Typical questions we experienced are:

  Why did I get sick?

  How long will I have to take medicine?
  Why do the treatments have to be so painful?
  When can I go back to school?
  What will be the effect of treatment on me?
  What should I tell my friends when, and when they don't, ask how I am feeling?
  Will I be able to play the same games and sports as I did before getting sick?
  These questions represent just a few that a child with leukemia will ask their parents.

• Helpful Hints - The following are some helpful hints used by the Stroud family, other families faced with the same questions, and the National Cancer Institute:
  • Communication - Honest and open communication with your child is important. A child needs to learn to trust the parent, since a number of other uncertainties will arise during treatment.

   

  • Today - Live one day at a time. We found problems became more manageable. We were able to be more grateful for the gift of life for each day. Jennifer often said that life is a gift and that is why it is called the "present."

   

  • Guilt - Separate the illness from anything the child has done. Depending upon the age of the child, they may associate their illness with a past action, and therefore, leukemia is a punishment. We referred to Jennifer as a child with leukemia rather than as a "sick child."

   

  • Three Words - Don't be afraid to say "I don't know." Nobody, not even your child, expects you to know everything.

   

  • Fear - Asking the child as to what he is thinking or feeling does not create new fears, but rather creates an outlet for him to express his existing fears.

   

  • Independence - Preteens and teenagers often savor their independence. Let them have control of certain phases of their treatment as long as it does not interfere with the treatment process. This will allow them to integrate the treatment more into their life versus being told by parents and other adults what they have to do in treatment.

   

  • Boundaries - The parent needs to set reasonable limits. We found this is a very trying time. Children often challenge the limits you set down. An environment of normalcy still needs to exist for the child. We find it gives them greater comfort when they know there are set limits.

   

  • New Standard - Recognize that your child will have good days and bad days. Often times a good day for a child with leukemia equals a bad day that child had pre-diagnosis. However, the fact is the family can adjust to this new standard.

   

  • Anxiety - Encourage your child in playtime activities such as drawing, painting, and play acting. These activities in the play room, hospital or at home during treatment can help reduce anxiety and familiarize the child with medical equipment. Jennifer played with syringes, medical tubes, and catheters with her dolls.

   

  • Advocacy - Stand up for your child. The treatment team is handling not only your child, but others. Since you know your child the best, the balance of what medications and the amount administered to your child should be closely monitored by each parent. In a number of cases, the parents were instrumental in changing or modifying the amounts and types of medication which help fight leukemia and often reduce the negative side effects of chemotherapy or homeopathy/alternative treatments.

   

  • Anger - Direct your child's anger at the disease. Children will express anger in a number of ways during this time period. One healthy method is for the child to express their anger by naming the disease. Names such as "bad cells," "bad guys," and "sick cells" are often used to describe the leukemia cancer cells.

   

  • Assurance - Children, especially those younger than age 5, worry about being separated from their parents. Reassure your child that even though you have to leave, you love them and return as soon as you can.

   

  • Friends - Friends are important to your child. Help your child keep in contact with his or her friends and schoolmates. Homework should be completed when appropriate to encourage the child to maintain some of their normal routine.

   

  • Encouragement - Encourage your child to set a good example. Children can be great examples of strength, determination, and that life is a gift. Tell your child he or she is setting such a fine example.
  • Clinic Visits - Trips to the clinic and medical procedures are also important in your child's treatment program. Listed below are some time tested tips.
    • Be an advocate for your child. No one knows your child better than you. The leukemia and related treatment often leave a child anemic, and therefore, susceptible to infections and other diseases. A parent can better monitor the symptoms of a child and inform the treatment team when side effects first appear.

     

    • The parents should familiarize themselves with the medical procedures. The clinic test of small pricks to draw blood to spinal taps or bone marrow aspirates all have a unique set of challenges for the child and the parent. The earlier the parents understand what will be expected of the child and the parents, the better they can prepare their child for these procedures. The preparation should begin prior to the initial clinic visits. Ask your treatment team for information on the procedures or obtain information listed in the Reference section.

     

    • Discuss with your child whether or not you will stay for medical procedures. Spinal taps and bone marrow aspirates are common in leukemia treatments. A decision needs to be made prior to the procedure as to whether or not the parent will stay. The procedure is very painful and emotionally draining to the child and parent. We found staying with Jennifer, despite the emotional stress and sadness, helped her during this procedure and showed our sign of commitment to her treatment program.
      
    • Clinic visits are notoriously late due to the nature of the clinical procedures. The waiting room is often full. The children often become anxious during this time period. A favorite toy or game is a must for clinic visits. 

     

    • After a particularly painful or distasteful clinic visit, we always set up ice cream or candy as a reward. This helped Jennifer look beyond the experience to the reward.

  The above are just a few helpful hints. Additional information can be found in the Reference section.

What about Home Records?  

• Medical Records

  The parents should keep a daily log of the temperature, activity level, sleep patterns, chemotherapy drugs and related reactions, and other side effects. This can be useful to the parent in explaining to the medical team the status of the child.