Emotional Aspects

Family members often wish they could be at the hospital, at home and at work all at once. Arguments may arise over what other family members are doing (or not doing). Family members may feel guilty or blame each other. Love, anger, vulnerability and faith may all be felt together.

Separation from part of your family can be hard. Sometimes it may be easy, and at other times it may be hard to deal with staying in the isolation room. Complying with the treatment regimen can be difficult, and privacy is difficult to maintain since medical care depends on knowing intimate details of everything that happens. We will try to respect your privacy as much as possible.

Siblings and donors

Brothers and sisters often feel left out and hurt, so it is important to set aside special time for them. It helps to involve siblings in planning, telephoning, and visiting the patient. Often, donors feel ambivalent about donating. They want to donate yet at the same time feel apprehensive about the procedure. Many donors worry unnecessarily that their bone marrow might not be "good enough" or that they may be permanently harmed by the donation. Donors may also feel they are only partially appreciated by their family and the staff for undergoing surgery to give their bone marrow. It is important to show much recognition and appreciation for donors.

Coping strategies for patients and family members

Planning ahead seems to help. You may want to talk with staff about your own expectations, concerns, and worries. Please tell us how you and your child learn best, and what works best at times which are difficult for you. Tell us how much detail you like to know regarding medical information and doctors concerns. Some people like to anticipate all possibilities while others like to wait to find out when changes occur. It will be important to talk to the staff about your child's reactions to medicines, both physical and emotional, so we can know how to help.

Remember how your child normally handles boredom, fatigue, and frustration. Help him/her to use these coping methods or to find new ones. And remember that you will have similar feelings. You might want to plan ahead on how you will relax while at the hospital. You will be asked if you want to talk with other families who are involved with bone marrow transplantation. You may choose to do so at times or find kindred spirits on your own. Conserving your energy and resources is a challenge. When friends and family want to help you, remind them that hospitalization is only the beginning of transplantation and you may need their support even more when you return home.

The bottom line is that there is no "right way" to act or feel. Let us know your way, so we can help.