The day your child comes home from the hospital after a bone marrow or cord blood transplant (also called a BMT) is usually a happy one. Everyone is glad to be coming home. Even so, your child will still need a lot of care.
Planning for your child's return
It can be a little frightening to leave the constant care provided in the hospital. You may feel more confident if you plan ahead how you will handle questions and emergencies. Be sure you know what symptoms to watch for. Ask your transplant center and/or the doctor who is caring for your child what you should do when you have questions or your child needs medical care. Find out the phone numbers to call during office hours, at night and on the weekends, and keep the numbers handy.
Your plans for your child's return from the hospital may include:
- Preparing your home for your child's return and making changes in your household routines to avoid infection risks.
- Returning to a doctor near your home for your child's follow-up health care.
- Supporting your child's recovery by encouraging healthy practices, such as getting exercise, washing hands to avoid infection and eating healthy foods.
- Planning who will care for your child at home if you or other caregivers need to return to work — see Caring for your Loved One after Transplant.
- Setting up an education plan, a home tutor and plans for your child's return to school.
- Planning a routine for your child of medications, self-care, schoolwork and play. Posting a schedule that includes a clear medication timetable can make it easier to share caregiving.
If you have other children, think about how the new routine will affect them and how they can be part of it.
Healing at home
Your child may expect to feel well as soon as he or she gets home, but the healing process can take a long time. It may be weeks or months before your child has his or her energy back. Your child will still need medical care, such as help taking many medications at the right times and caring for a central line. Your hospital may offer a class to teach you the skills you need, or the nurses will teach you. Encourage your child to play an active role in self-care, depending on age and energy level.
Your child will also have frequent visits to the hospital or clinic to check his or her progress. For about the first 100 days after transplant, your child will be cared for by transplant doctors. In time, your child will most likely return to the doctor who treated him or her before transplant. It will be important for your child's regular doctor to stay in close contact with the transplant doctor. Your child will receive the best care when you and your child's regular doctor and the transplant doctor work as a team. You and your child's regular doctor should also know about possible late effects of transplant to watch for.
Returning to normal
Family life has changed while your child was in the hospital. For months your child's health was the focus of attention. Now your family can return to more balance and other family needs can be addressed. It may take some time and effort for everyone to adjust. Things will never be exactly the same as they were. This is your family's chance to create a new "normal."
Your child will adjust and gradually return to activities as well. At first there will be limits on what he or she can do because of infection or bleeding risks. In time these risks grow smaller and you can relax these limits. Regaining independence is an important part of your child's recovery. Try not to protect your child more than is really needed and to give your child the independence he or she is ready to handle.
Contributing editors
K. Scott Baker, M.D., Director, Pediatric Blood and Marrow Transplantation and Survivorship Programs, Fred Hutchinson Cancer Research Center, Seattle, Wash.
Nancy J. Bunin, M.D., Director, Blood and Marrow Transplantation, Children’s Hospital of Philadelphia, Philadelphia, Pa.
Eva C. Guinan, M.D., Associate Professor of Pediatrics, Harvard Medical School, Dana-Farber/Children’s Hospital, Boston, Mass.
Mary Jo Kupst, Ph.D., Professor of Pediatrics, Medical College of Wisconsin; Director, Program in Pediatric Psychology, Milwaukee, Wis.