What to Expect
Your child has been diagnosed with a malignant cancer, immunodeficiency disease or a blood disorder. Commonly transplanted conditions are:
Your child’s diagnosis has been identified as a blood disorder that a stem cell transplant could either offer a cure or halt progression of aspects of the disease process. The referring provider and transplant team consider the type of disease, stage of progression, age and health of the child in the decision to move forward with transplant evaluation.
The transplant evaluation includes meetings with a primary transplant physician who has been identified as an expert in your child’s diagnosis and stem cell transplant. At these pre-meetings, you will discuss how a transplant could benefit your child and go over associated risks
You will also meet with other members of the team, including an advanced practice provider (nurse practitioner or physician assistant) who will work alongside your child’s physician to ensure quality care and that all your needs are addressed.
You will have the opportunity to meet with our social worker, child life specialist and nursing staff during this period.
Donor source will be discussed along with appropriate treatment options. Donor sources for a stem cell transplant can be chosen from several types of material, including both bone marrow and peripheral blood stem cell. Sources could include:
- Matched sibling transplant
- Matched unrelated donor (chosen from national registries)
- Umbilical cord blood transplant
- Haploidentical transplant (from a family member)
- Autologous transplant (from the patient’s own cells)
(Day -100 through Day -14)
If you decide on a transplant, your child’s physician and advanced practice provider will help coordinate any testing needed before transplant.
During this time, we may insert a central line in your child while he or she is sedated. This helps the care team administer chemotherapy and medications during the transplant process.
The most commonly performed tests and procedures that will be done at this time are:
- Blood draws
- X-rays and imaging scans
- Other provider consults
- Stem cell harvest and/or bone marrow harvest from donor
- Central line placement for recipient
(Day -30 to Day 0)
Your child will be admitted to the hospital one to three weeks prior to “Day 0” (transplant day) to start their conditioning regimen to prepare the immune system for transplant. A treatment regimen based on your child’s diagnosis and donor source is chosen and administered to help make space in the bone marrow and prepare the immune system for the new stem cells.
A team of specialized nurses, doctors, coordinators, advanced practice providers, dietitians and pharmacists will help support your child through this time with a specialized plan of care.
The conditioning regimen is based on national protocols (standards of care) as well as cutting-edge studies, and it will include a combination of:
- Radiation treatment
Day of Transplant
Your child will receive the new stem cells as an intravenous (IV) infusion through their central line. Before the transplant, your child will receive pre-medications to help his or her body accept the cells.
Your child receives the cells of his or her transplant in the same room of the bone marrow transplant unit where he or she is staying. Special monitoring will assure you that they are safe throughout the infusion.
Waiting for Engraftment
(Day 0 to Day + 30)
During this time, the transplant team waits for signs that the cells have found their way home to the child’s bone marrow (engrafted). The team looks at blood counts, specifically the absolute neutrophil count (ANC) to see that this happens. This process takes about one month.
During this time, many medications and blood products are given through the IV to prevent and treat infections and other side effects. Your child will also be started on immunosuppressive medications to help prevent graft- versus-host disease (GVHD) that will continue until Day +100 or after.
During this time, the care team also watches for complications and cares for commonly seen side effects of transplant. Every child is different, but most children experience some of these symptoms:
- Mouth sores
- Nausea and vomiting
- Weight gain and loss
Discharge from Hospital
(Day + 21 to Day + 35)
Once your child has shown signs of engraftment, we are able to discharge them from the hospital if they meet other criteria showing they are safe and ready for outpatient care.
You will have discharge meetings with the transplant care team to go over education and preparation for discharge in the weeks prior to the anticipated date.
The criteria for discharge from the hospital for most children are:
- Engraftment of neutrophils
- Stable labs
- Eating or a good source of nutrition for home
- Transitioned from IV to oral medications
- No fever
Outpatient and Home-Based Care
(Day + 35 to Day + 365)
Once your child is discharged from the hospital, you will either be at home or staying at the Ronald McDonald House if you live more than one hour away from Children’s National.
Your child is still vulnerable to infection and needs his or her labs and medications monitored. He or she will be seen in a clinic one to three times a week by their doctor or nurse practitioner.
For most patients, Day +100 is a mark and celebration that things are starting to normalize. At this time (or later for some patients at Day +180), we can start to decrease the immunosuppression medications. This allows the clinic visits to be less frequent.
Clinic visits can be as quick as 30 minutes or as long as two to four hours depending on your child’s needs. At these visits, we check his or her blood counts and other labs and also have a discussion to see how you and the family are doing. Routine appointments are needed to monitor for graft-versus-host disease (GVHD) and other complications.
Our goal is to keep you out of the hospital, but at times it may be necessary to admit your child back to the inpatient unit for further work-up and to ensure their safety for a period of time.
Long-term Follow-up Care
(Day + 365 and annually)
At your child’s one year anniversary from their transplant, they will have an appointment with our Long-term Follow-up Program. This multidisciplinary clinic is held annually to monitor for long-term side effects of transplant and to ensure a healthy transition back to the community and into the care of your pediatrician.
During this visit, your child will have the opportunity to see several providers from different disciplines including: