The Pediatric Bone Marrow Transplant Handbook is given to you to provide information. Feeling overwhelmed is normal and with the use of this handbook, you CAN cope. Undergoing a bone marrow transplant is one of the most complicated and lengthy treatments of any disease. In addition to being a parent, we invite you to become a part of our multidisciplinary team. This handbook will assist you in learning your new role in your child's health care. The information presented may be difficult to understand. It will take time to absorb it all. Our intent is to provide you information regarding various aspects of your child's medical care and terminology so that you can utilize this handbook at your leisure.

We encourage parents to participate in as many cares as they wish. If you want to do the bath, dressing change, and mouth cares, that is fine. We also realize that parents need breaks and we want you to know that things will get done if you wish to leave for a while or take time off. There may also be times when getting things done becomes a struggle. We are willing to be the "bad" guys and take over those cares. We do appreciate knowing when you will be here in the morning if you are not coming in at your usual time. It helps us organize our day.

Because of the extended length of hospitalization for bone marrow transplant, we encourage you to stay outside the hospital at night. If you choose to stay outside the hospital, we would like to know when you want to be called. Do you want to be informed if you child has a fever or needs a test such as a chest x-ray done in the middle of the night? Do you mind if your child calls you at 4:00 a.m. just to chat or would you like us to discourage this? These are the kinds of things that you need to go over with your nurse so that we will know how you want these times handled. Remember that we will always call you if the child is very sick or if the child needs you.

During your first few days on the unit we will review routines and procedures with you. Please ask if you have any questions or if you feel you need supervision or more guidance than we are giving you. Most importantly, we want your input and respect your opinion. You know your child best and at all times, we need your continued input.

We hope you will find this handbook helpful, but please remember that the staff of the Pediatric Bone Marrow Transplant Unit are available to answer any additional questions which you may have as they arise.

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