Once referred for consultation, our Program Assistant will call to set up an initial family conference. We ask that parents/legal guardians (both if applicable) be present for the initial consultation, in addition to the patient. If there are additional family members or caregivers that you would like present, please feel free to invite them as well. At this initial meeting, a BMT Physician, BMT coordinator, Social Worker and Child Life Specialist will discuss the process of BMT. We encourage you to ask questions at this visit and after if questions arise.

If it is determined that you or your child will proceed to BMT, the first step is to find a suitable donor. For patients undergoing autologous BMT (we collect the patient’s own hematopoietic progenitor cells then we re-infuse it to the patient after receiving high dose chemotherapy/radiation), this is not an issue as you will donate cells for yourself. For patients, with siblings, we will test your siblings to see if they are a match and can serve as the donor. If you have no related donors available, we will search for an unrelated donor. If you are eligible for clinical trials, someone from the study team will make sure you are offered the chance to participate. Many successes in the field of Pediatric BMT are owed to participation of patients in clinical trials.

Once a donor is identified and a target date for BMT has been determined, we initiate a pre-BMT assessment. This will include having many tests performed to ensure that you are healthy enough to undergo BMT and to ensure we choose the right preparative regimen for your transplant. Our Program staff will work closely with you to ensure this is completed in a timely manner to avoid delays in proceeding to BMT. Your donor will also undergo a comprehensive assessment to ensure that he/she is healthy enough to serve as a donor. If your donor is a relative, he/she will be independently assessed and consented for donation by another physician. A donor advocate is always available to ensure the rights of the donor are protected.

Once you have received medical clearance, you will be admitted for BMT. An admission for BMT may last, on average, about six weeks. This could be longer if there are any complications during BMT. During your BMT, you will receive a “conditioning or preparative regimen” (chemotherapy +/- radiation therapy) to empty your own bone marrow and make room for the new cells. After conditioning, the cells are infused on “day 0”. After a period of about 2 to 4 weeks, the recipient will start making new blood cells (white cells, red cells, platelets). This is called engraftment. Once the recipient is engrafted, feels well and is able to take all of their medicines by mouth they generally can go home. During BMT admission, you will be seen daily by BMT physicians, nurses, mid-level providers, social workers, child-life specialists. Teachers, nutritionists, physical and occupational therapists, yoga therapists, massage and art therapists are also part of our team.

Prior to discharge, our team will work with you and your family to make sure you feel ready to go home. Your doctors and nurses will review education materials with you to make sure your home is ready, you know when to call the doctor, when to call 911, and you feel comfortable with giving medications. We use a team approach to discharge. A Pharm D will review your medications with you prior to discharge and provide information on side-effects, medication storage and administration. If needed, they will also help you fill pillboxes until the next clinic visit. Our social workers will assist you if needed with insurance authorizations, family-medical leave assistance and/or transportation assistance, home-schooling and general support. On the day of discharge, our child-life team will coordinate a discharge parade as a tribute to you. This parade patterned after the “confetti parade” pioneered by Pediatric BMT at Duke University Medical Center is always a heart-warming experience.

Outpatient Clinic Visits:
We continue to use a holistic approach to your post-BMT care. At each visit, you will be placed directly into a patient room upon arrival. Phlebotomists or nurses will obtain your bloodwork upon arrival. You will then be seen by a BMT Coordinator and then a BMT Physician. At each visit, child life specialists and social workers are available to see you. A Pharm D will then review your medication list with you, at your weekly visit and assist with your pillboxes if needed. If you are scheduled to receive an inhaled medication at one of your visits, this will be performed by respiratory therapy in your exam room. Our Program Assistant will assist you in setting up sub-specialty appointments if needed and provide you with an appointment calendar.

Late-Effects Clinic Visits:
When you are first discharged from the hospital, we follow you closely and frequently. Once you are stable and your immune system has recovered, we will see you less frequently and eventually only once or twice per year. These visits are to promote your long-term health and screen for any late effects which may be associated with BMT. We will coordinate with your dentist and ophthalmologist, monitor your growth and nutrition, assess need for vaccinations, screen for endocrine complications and secondary malignancies. We will also review your academic progress and career goals and any psychosocial concerns. If you opt to pursue college, we will review potential scholarship funding with you.