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What to Expect | Parents

How does the initial diagnosis affect parents?

I still remember December 24, 1993 when my wife called from the pediatrician's office and told me Jennifer was diagnosed with leukemia. The shock, the sadness, the fear and a thousand questions whirled through my mind. How do I tell my son and her parents who were standing there when I received the phone call? What is leukemia and what are the type of treatments Jennifer will undergo? Does my health insurance cover leukemia treatments? What is the prospect for recovery? What side effects can we expect from the leukemia treatments? These questions and others are asked time and time again by parents who are told their child is diagnosed with leukemia.

What practical tips can help parents?

We and other parents have found the following to be useful:
 

• Questions - Parents will experience confusion and shock upon hearing the initial diagnosis. Parents should ask many questions of the doctor and treatment team. It is helpful to have a friend or spouse with you to hear and discuss the answers.
• Denial - The parent often experiences denial and wonders how can this happen to my child or is the doctor right. A pediatrician or general physician will recommend confirmation of the diagnosis by a specialist. Typically, the child is admitted to the hospital and a blood test is run for a second opinion.
• Listening - The parents will experience strong feelings of fear, anger, guilt, hopelessness and hope during this time period. We found family and friends that were willing just to listen and not deny or try to give "the answer" were most helpful to us.
• Faith - Spiritual beliefs and fellowship can be most helpful at this time. Some religions and churches have networks to help families deal with illness and grief. The spiritual beliefs of the parents are immediately tested. We gained great comfort and strength from our faith. A hospital chaplain may also be helpful at this time.
• Openness - Parents should be aware that the children sense their feelings and fear. We found that talking in front of Jennifer with the doctors was better than leaving the room and creating fear and anxiety in her. We stressed that Jennifer was a child with leukemia and not a "sick child."
• Acceptance - Accepting the diagnosis was important to move to the next step of selecting a treatment program. No matter how hard we wanted the news to be different, the fact that our child had cancer would not change.
• Sharing - Talk about the diagnosis only when you are ready. In the event family members or "curious well wishers" want to talk about the disease before the parent is ready, the parent should postpone any discussion and conserve their energy for selecting a treatment program.

What are the first decisions a parent faces?

After the initial diagnosis and second opinion, the parents are faced with selection of a physician, selection of a hospital, selection of a treatment program, how to pay for the treatment plan, and how to tell family and friends.

• Selection Of A Physician - The initial diagnosis often is made by a general practitioner or pediatrician. A second physician specializing in cancer treatment is then referred to the parents. Since leukemia is a long haul with severe strains on the family, we found our relationship with the physician one of the most important decisions. In the event you are not comfortable with your physician, then seek an additional referral. The physician's attitude and qualifications often have a significant impact on your child's treatment and his or her quality of life.
• Selection Of A Hospital For Treatment - The physician you select should also discuss the hospital he or she recommends for treatment. In today's managed care environment, physicians are typically associated with a single hospital. Therefore, the parent should inquire not only about the background of the physician, but also the background of the hospital. The sections on Chemotherapy and Bone Marrow Transplants contain pertinent questions to ask the physician and hospital staff.
• Treatment Program - The physician and treatment team will recommend a treatment program for your child. Generally, the treatment program includes Chemotherapy, and a Bone Marrow Transplant in the event the chemotherapy is not successful. Parents should also consider Nutritional and Alternative/Homeopathy treatments at this time. We found that nutritional treatments are oftentimes not discussed by physicians. Also, alternative/homeopathy treatments may not be available after prolonged chemotherapy or transplant treatments. Parents should be comfortable with the treatment program before starting down that road.
• Financial - Leukemia treatments are one of the most expensive and prolonged treatments for children. Chemotherapy treatments often are not successful the first time. A second treatment plan may be necessary if the child does not go into remission or upon relapse. In addition, a bone marrow transplant may be recommended by the treatment team. Chemotherapy programs often cost in excess of $150,000.00, and bone marrow transplants can cost in excess of $250,000.00.

  Parents should take their health insurance policy, if they are covered, to the hospital financial department to review what costs are and are not covered. In addition, the health insurance policy should be reviewed as to what physician costs are and are not covered. The parents should ask for a print out or written document showing what specific categories of cost and expenses are covered, what out-of-pocket deductibles the family will have to pay, and any financial aid for items that are not covered. Your insurance policy may cover more expenses at a "center of excellence," which will be important in selecting the hospital for treatment.

  Nutritional and alternative/homeopathy treatments as well as bone marrow transplants are sometimes considered to be "experimental" and therefore may not receive full or oftentimes just partial coverage under a policy. Every parent should clarify the financial risk and obligations prior to signing any consent form for treatment.

How do you tell your child and family?

The Your Child, Brothers and Sisters, and Friends sections of this home page will help the parent discuss the leukemia diagnosis. The sections contain valuable tips from families that have been down this road.

Why is leukemia called a family disease?

Parents will find out that a child diagnosed with leukemia will affect not only the child, but will change the lives forever of the parents, brothers and sisters, and relatives. A strong marriage now has new demands. The marriage that is in question or doubt will have additional strain and stress.

The parents that accept early on the fact of new demands on their marital and parent/child relationships seem to adjust best to this family disease. Information that identifies and describes these new demands is set forth in the Reference section. The new demands often include disagreements and compromise, how to conserve one's energy, how to maintain a "normal" home, and how one's religion and faith in God can help them at this time. We found that our feelings and the new demands on our family were not unique. The parents should not give up hope. There is good reference material and help along the way