The process for your child getting a bone marrow transplant is a long one, from your first visit and your decision to move ahead all the way through the hospitalization, recovery, and long-term follow-up care. This page summarizes the seven main steps of the transplant process.
You can find more information about the transplant experience at Seattle Cancer Care Alliance (SCCA) in Preparing for Transplant, a detailed guide designed to help families and caregivers get ready for a child’s bone marrow transplant. The guide includes details about the SCCA outpatient clinic on Lake Union, treatment in the SCCA Inpatient Unit at Seattle Children’s, the steps in the transplant process, caring for your child at home, long-term recovery, and more. It also includes a guide to Seattle, which is helpful for our out-of-town patients.
- Your First Visit and the Decision to Move Ahead
- Step 1: Planning Ahead
- Step 2: Preparation
- Step 3: Conditioning
- Step 4: Transplant
- Step 5: Waiting for Engraftment
- Step 6: Recovering After Engraftment
- Step 7: Long-Term Follow-Up
For many people, the process begins with an initial consultation at the SCCA outpatient clinic or over the phone to discuss the possibility of a transplant. To schedule a consultation, call (800) 804-8824. If you are from outside the area and you are not sure you can travel here for a consultation, please call us to talk about options. Learn more about talking to an SCCA pediatric transplant doctor.
At your first visit, you will meet your child’s primary doctor and team nurse and receive an orientation, a tour of the transplant clinic, and a packet of transplant information to take home. The doctor and nurse will do a basic examination of your child. On the second day of your visit, you will sit down with your child’s doctor and treatment team to discuss the proposed treatment plan for your child. This is when you can ask any questions and, if ready, make the decision about whether to move ahead with your child’s transplant. In some cases, a more in-depth evaluation for transplant (described below) will need to be done before doctors can finalize your child’s treatment plan and you can make your decision to move ahead. Learn more about your child’s arrival and evaluation in Seattle.
Once you decide to proceed, you will begin the seven steps listed below. These steps are described in more detail in Preparing for Transplant. You can also view a typical transplant timeline.
You’ll want to make plans for your stay in Seattle, make financial arrangements, and decide which parent or family member will be your child’s primary caregiver. This planning will allow you to give your full attention to your child’s recovery. We’ll send you a copy of Preparing for Transplant to help you with these key steps of:
- Selecting a caregiver, usually one or both parents, to provide physical care, help monitor your child’s health, administer medications, and provide daily emotional support.
- Arranging to live in Seattle for your child’s transplant, if you don’t live here already. We require that you live within 30 minutes of the clinic for your child’s safety during recovery. The length of time is different for each person and depends on the disease, treatment plan, and response to treatment. Your transplant team can talk with you about the length of time you can expect. A typical range is one month for an autologous transplant and four months for an allogeneic transplant.
- Arranging for school, childcare, and activities for your child, as well as for any other children you bring with you. See the section about children and teens in our Patient Guide for more details.
- Making financial arrangements to pay for the transplant and living expenses during your time in Seattle, or raising funds to help.
Visit the Patient Guide for more details on help with housing, school, insurance, or other important planning matters.
Two main elements of preparing for a transplant are preparing the donor (whether that’s someone else or your child acting as his or her own donor) and arriving at SCCA for the meetings, evaluations, and paperwork that need to happen right before the transplant occurs.
Preparing the Donor
Allogeneic transplant: If your child will have an allogeneic transplant (using someone else’s cells), the preparation step includes identifying a donor.
- If you have one or more relatives who are available to donate, they will be tested to see if any is a close-enough match for your child according to HLA typing.
- If your child does not have a related donor, we will search internationally for an unrelated donor using donor registries.
- If a match cannot be found, your child may be able to receive a haploidentical transplant (using a half-matched family member) or a cord blood transplant (using an unrelated donor). These new sources of stem cells ensure that almost all patients needing a transplant will have a donor. Read more about new options for people seeking a donor.
Autologous transplant: If your child will have an autologous transplant (using his or her own cells), then he or she acts as the donor.
- For a transplant using peripheral blood stem cells (PBSCs): The preparation will include stem cell mobilization (receiving medicine that causes stem cells to leave the tissues they normally occupy and to circulate in the bloodstream). Sometimes we will begin your child’s stem cell mobilization at SCCA; sometimes your referring doctor will start this process. After your child arrives at SCCA, we will collect the PBSCs.
- For a transplant using bone marrow: We will harvest the bone marrow after your child arrives at SCCA.
Arriving at SCCA
Once your child’s donor (or your child, for an autologous transplant) has been prepared, they will come to SCCA.
- Transplant workup: On the first day, you and your child will meet with your primary provider and team nurse to discuss your child’s health history, have a physical exam and blood draw, get a tour of the transplant clinic, get consent forms to review, and receive your Patient & Caregiver Resource Manual.
- Arrival conference: The next day, you’ll have your arrival conference. You will meet with your child’s attending doctor and team nurse to discuss your child’s treatment plan. Every young transplant patient at SCCA is cared for by a personal pediatric team that includes a pediatric attending doctor, a primary pediatric provider (who may be either a fellow or a physician’s assistant), a team nurse, a social worker, and a Child Life specialist. Your child’s doctor will explain the transplant process, talk with you about the benefits and risks, and answer your questions.
- Evaluation for transplant: Over the next one to two weeks, your child will have a thorough evaluation to confirm the diagnosis and evaluate his or her health. The evaluation will include tests and imaging procedures, such as blood tests, bone marrow aspiration and possible biopsy, chest X-rays, an electrocardiogram, and pulmonary function tests (for those older than age 6). Throughout this process, your child will be an outpatient.
- Data-review conference: After the transplant evaluation, you will have a data-review conference. Your attending doctor will meet with you to discuss the results of your child’s evaluation, answer your questions, and get your consent, if you wish to proceed with your child’s treatment.
- Education: The designated caregiver for your child will attend classes and get individual instruction on topics like what to expect during the transplant process, how to care for the central venous catheter, how to manage symptoms after the return home, and how to maintain proper nutrition for your child.
- Donor: If your child has a related donor, this person will be with you, and we will evaluate the donor’s health at this time. If your child has an unrelated donor, that person will be evaluated at a different center closer to their home.
When your child—and the donor, if needed—are ready, the doctor will begin the conditioning regimen. This means your child will receive chemotherapy, total body irradiation, or both to weaken or destroy the cancer (or other disease-causing cells) and unhealthy bone marrow.
As these therapies take effect, your child’s immune system will be greatly weakened, and he or she will be very susceptible to infections. Conditioning may also cause other side effects, like nausea, diarrhea, fatigue, hair loss, and skin changes. Your child’s health care team will teach your family and your child’s primary caregiver how to take special precautions to help prevent infections and how to manage side effects. They’ll also give your child medicines to help with this. You will want to make sure your child balances rest and activity.
Conditioning typically lasts about a week. Young children are always hospitalized at Seattle Children’s during conditioning. An older child may receive total body irradiation as an outpatient before being admitted to the hospital for chemotherapy.
Your child’s transplant will take place after conditioning is complete. The actual transplant involves infusing the cells into your child’s body through a central venous catheter (a small, flexible tube inserted into a large vein leading to the heart). This infusion lasts about an hour and is usually uncomplicated. But it is a significant event. Many families choose to celebrate their child’s transplant day as a special occasion. The transplant takes place at the SCCA outpatient clinic or as an inpatient at Seattle Children’s.
If your child is having an allogeneic transplant, one of the following will happen right before the transplant:
- The donor will undergo stem cell mobilization in the days before the transplant, and then his or her stem cells will be collected on the day of your child’s transplant.
- The donor will undergo bone marrow harvesting on the day of your child’s transplant.
- Stem cells from cord blood will be defrosted in preparation for infusion.
If your child is having an autologous transplant, we will have already collected, frozen, and stored your child’s PBSCs or harvested your child’s marrow before conditioning, and these will be defrosted in preparation for infusion.
Engraftment means the stem cells your child received are growing and developing. In other words, the bone marrow and immune system are beginning to recover. While waiting for engraftment, we’ll closely monitor your child and treat any side effects or complications that arise. Your child’s transplant team and caregiver will provide supportive care as well as emotional support.
Your child will be hospitalized at Seattle Children’s while waiting for engraftment.
Signs of engraftment usually appear about 10 to 28 days after the transplant. The first sign is a rising white blood count. Your team will monitor blood cell counts to watch for this.
Your child is very susceptible to infections during this time because of the lack of white blood cells, so special precautions are needed to limit exposure to germs. This is one of the main reasons for hospitalization after transplant. Depending on your child’s condition, he or she may receive drugs to prevent bacterial, fungal, or viral infections during this vulnerable phase.
Bleeding and fatigue are also common during the engraftment period. In some cases, blood transfusions or blood-stimulating proteins (colony-stimulating factors) can be used to boost levels of platelets and red blood cells to relieve these symptoms. Intravenous nutritional support is also available.
Your child will be monitored closely for other side effects or complications of treatment. Possible complications include pneumonia; veno-occlusive disease (VOC); and organ failure. The risk of organ failure may be greater in patients who already had intensive chemotherapy, radiation therapy, or both before coming for a transplant. In some cases, hospitalized children will receive special therapy to prevent or treat graft-versus-host disease (GVHD).
During this time, you may want to take advantage of the support services available to you and your family, including social workers, Child Life specialists, and volunteers. Learn more about specific services through the SCCA Patient Guide and For Patients and Families on the Seattle Children’s website.
After engraftment, the initial recovery period typically lasts about three months after an allogeneic transplant and about one month after an autologous transplant. Your child will remain in the hospital for part of the recovery stage and then will continue to recover as an outpatient. You and your child will need to live within 30 minutes driving distance of either the SCCA outpatient clinic or Seattle Children’s during this time.
You will be caring for your child once he or she is released from the hospital. Your child will be scheduled for clinic visits at least weekly as well as for regular blood draws and other tests. These visits and tests may be tapered closer to the end of the recovery period. We have classes to teach you the skills you will need, and you will have detailed instructions in the Patient & Caregiver Resource Manual as well. Your child’s doctor or nurse is only a phone call away, 24 hours a day, 7 days a week, if you have questions.
Toward the end of the recovery period in the hospital, you and your child will meet with staff from Transition Services to make plans for taking your child home.
Toward the end of your child’s recovery period after an allogeneic transplant, you will meet with staff from our Pediatric Long-Term Follow-Up (LTFU) Program. They are dedicated to providing you and your child’s primary care doctor with lifelong resources related to the transplant. They will give you a comprehensive transplant discharge evaluation and make sure you understand all the details about how to manage your child’s medications at home and how to reduce the risk of side effects and GVHD.
Our LTFU doctors and nurses will spend a lot of time with you and go over everything with a fine-toothed comb. They will also set up a schedule to see your child back in the clinic as frequently as needed. In the first year, children are typically seen monthly and then for a one-year comprehensive examination. Many children return annually thereafter for evaluations of engraftment, growth and development, and other long-term follow-up issues unique to growing children. If your child had an autologous transplant, he or she will not face the same long-term issues; if needed, you can plan return visits through our LTFU telemedicine program after you leave. Our dedicated LTFU schedulers make these visits convenient for families.
Next, you will have a departure conference with your child’s attending doctor and primary nurse to discuss the results of your child’s discharge evaluation. Repeating much of what the LTFU specialists discussed, they will talk about your child’s ongoing care, what to watch for, and how to stay in contact with us as needed; this is another chance for you to ask any questions you have. After this conference, you will have a final SCCA clinic visit.
Once you leave SCCA and return home, although you will always have the full support of the LTFU Program, your child will be under the direct care of his or her primary care doctor. We will give you a packet of information to take with you and give to your referring doctor. The packet contains a summary of your child’s care at SCCA and recommendations for your child’s follow-up SCCA visits and care in the future. You should report any new symptoms to your child’s doctor promptly and contact the LTFU staff if you have any questions.
Read in more detail about the support and services you and your child receive through the Pediatric Long-Term Follow-Up Program.