Everyone brings his or her own unique experience and outlook to the bone marrow transplant process. Even though it will be different for everyone who goes through it, some common feelings and concerns seem to be shared by many families.
Patients and families can expect that their emotions will seem to flip-flop to opposite extremes. You may feel excited and hopeful to be starting the transplant procedure and, at the same time, feel anxiety about what is ahead. You can expect to feel tired and frustrated, which can leave you short-tempered at times. It is natural to feel high or low along with the medical changes, and even sometimes doubt your original decision for your child to have the transplant.
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. While at some times it may be easy, at other times it may be extremely hard for your child 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 and your child's 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 also may feel they are only partially appreciated by their family and the staff. It is important to show appropriate recognition and appreciation for donors.
Planning ahead seems to help the patient and their family through the transplant process. 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 helps you during difficult times.
- Tell us how much detail you would like to know regarding medical information and the 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 or 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 and explore ways to help yourself 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 transplant process and that 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.