What to Expect
In this section, we summarize important information and what will happen as you start the blood and bone marrow transplant process at Seattle Children's Cancer and Blood Disorders Center.
See our handout "What to Expect Blood and Bone Marrow Transplant" to see this content as a flyer.
Important phone numbers
Cancer and Blood Disorders Center (Monday-Friday 8 a.m. to 5 p.m.): 206-987-2106
After-hours (5 p.m. to 8 a.m., holidays and weekends): 206-987-2032
Family Interpreting Line: 1-866-583-1527
The cell that is being transplanted is the stem cell, which is made in the bone marrow. Stem cells are immature cells that grow and mature into red blood cells, white blood cells, platelets, or plasma cells. Stem cells are an essential part of a person’s immune system.
Why is a transplant needed?
Sometimes the amount of chemotherapy, radiation, or both that is needed to treat a cancer is so high that a patient’s stem cells will be badly damaged or destroyed by these treatments. Other times, bone marrow can be destroyed by a disease. BMT replaces these damaged cells with healthy new cells.
|Allogeneic||Family member or nonrelated person (usually anonymous)||
|Family member or nonrelated person (usually anonymous)||
If your child has cancer: give the highest dose of
If your child has an autoimmune disease: stop
- Bone Marrow Transplant
- Marrow Transplant
- Peripheral Blood Stem Cell Transplant
- Stem Cell Transplant
- Hemopoietic Stem Cell Transplant
This step begins when you first think about transplant as a treatment option for your child. You start to organize yourself and your family to undertake this journey.
Once you arrive at the clinic, you will begin the process of medical evaluation, orientation, and informed consent. You will get ready to begin conditioning therapy. You and other family members will prepare to take on the caregiver role for a child with a blood and marrow transplant.
Arrival to transplant team
There are many different people who all serve different roles in your child’s care. Meet Your Blood and Marrow Transplant Team.
First clinic appointments
During the first few days after arriving to the transplant team, your child will have several appointments to meet your nurse and medical team:
- Blood draws and labs
- Clinic visit to check your vitals (such as pulse, blood pressure, height, weight, etc.)
- Complete a history and physical with an Advance Practice Provider (APP)
- Meet with the arrival nurse coordinator, dietician, and social worker
The arrival conference is usually on the second day after you arrive at the clinic. The attending physician will lead the meeting and discuss the transplant process, as well as the risks and benefits of treatment.
You will receive a consent packet at your first appointment in the clinic, please bring it with you to the arrival conference. The age and maturity of your child will determine if they should attend the conference and if they need to sign any forms (assent forms).
Schedule, evaluation and work-up
You will get a schedule from your team when you arrive to the transplant team. During the pre-transplant period, you will have several appointments for clinic visits with your child’s medical team. You will also have education visits with your team to learn how to care for your child throughout the transplant process.
The evaluation for transplant includes tests to tests that will help determine if your child’s body is ready for transplant, including:
- Blood draws
- Bone marrow aspiration and possible biopsy
- Imaging (such as chest x-rays)
- Heart testing - Electrocardiogram (also called EKG or ECG)
- Lung (pulmonary) function tests
During this time, last-minute schedule changes happen often based on your child’s test results. Our team coordinators will work closely with you on the schedule. We will communicate changes to you as soon as possible. It is important to be on time to appointments and to be available by phone.
Informed consent conference (data review conference)
You will be scheduled for a second conference to review your child’s test results before treatment starts. The doctor must share information with you so that you can understand the transplant process and make the decision to go ahead with your child’s transplant.
The conference gives you and your family the opportunity to ask questions. After the conference, your child’s legal guardian will be asked to sign consent forms giving permission to proceed with treatment. If your child is age 18 and older, they will sign their own consents for transplant.
You and your family will:
- Get copies of all consent forms for the treatment plans (protocols) for your child.
- Be offered copies of all treatment plans (protocols) for your child.
- Be offered a copy of the dictated “Data Review Conference” summary in English.
If your child does not already have a double lumen central venous catheter (Hickman central line), they will need a procedure to have it put in before transplant.
A central line is a small flexible tube inserted into a large vein in your child’s chest. It is needed to draw blood samples, and safely give fluids, nutrients, medicines and blood products. It is also called a central line, tunneled catheter, central venous line and Hickman line.
Your child will receive sedation during the procedure to put in the central line. Your transplant nurse or a dedicated central line nurse will meet with you before the line is placed to teach you how to care for your child’s central line.
See our handout “Double Lumen Central Venous Catheter (Hickman Central Line).”
Conditioning is giving high-dose chemotherapy with or without total body irradiation (TBI) before a BMT. This is done to destroy or weaken the damaged cells in the body. Your child must stay in the hospital while this happens.
If TBI is a part of your child’s conditioning, they will be transported to University of Washington Medical Center – Montlake for each radiation treatment. The purpose of conditioning therapy is to remove cancer cells or the remaining immune system so that the new stem cells can grow. All chemotherapies and radiation have some effects on normal cells as well as on diseased cells, and side effects can be expected.
You will meet with a blood and marrow transplant pharmacist to discuss the side effects of chemotherapy and medicines to help with nausea and vomiting.
The transplant takes place 1 or 2 days after conditioning treatment is complete. The goal is to infuse stem cells, which are cells from which all types of blood cells grow.
These cells can be collected from bone marrow, circulating blood or umbilical cord blood. Stem cells are infused through your child’s central line.
Your child will stay in the hospital while waiting for signs that the transplanted stem cells are growing and developing (before engraftment). Your child will be closely monitored, given supportive treatment and help to manage complications.
This is when you see the first signs of engraftment. Your child’s new white cells, red cells and platelets are being produced and the immune system is starting to recover.
During this time, the immune system is still immature and vulnerable to infections. They might need transfusions of red blood cells and platelets. The goal is to support their recovery and manage complications. Your child will still need close monitoring and supportive treatment. We require you to stay near the hospital for about 100 days after transplant.
It is common to feel tired during this phase. Encouraging your child to have physical activity is good and can help prevent complications. Your child may feel sad or depressed at times during the recovery period. Your child may grieve because of changes in body, dependence on others or even changes in relationships with friends and family. These are all common reactions to the intense experience of having a transplant. We have resources available to support you and your child throughout the process.
Progress may seem slow. Your child may feel frustrated because they want to get well quickly. It takes time to recover. Setting simple and realistic goals for each day can help with coping.
Even after leaving the hospital, it is common to be re-admitted to the hospital for fever or symptoms that cannot be safely treated in clinic.
About 80 days after transplant, your child will have tests done to check their health after transplant and for chronic graft-versus-host disease (GVHD).
These tests can find early signs of GVHD. If found, treatment can be started early before more problems happen. These tests are scheduled around 80 days after transplant and take about 1 week to complete.
About 2 weeks after the chronic GVHD tests are complete, you and your child will get the results. We will give you recommendations and instructions for care outside of the hospital.
If you live near Seattle, your child will continue to be followed by their team after 100 days. Depending on your child’s health status at this time:
- Their central line will be removed
- They will need blood draws and clinic visits less often
- They will be seen by their primary care provider or referring doctor
If you and your child traveled to Seattle for transplant, we hope that you can return home and transition your child’s care back to your primary care physician around day 100 post-transplant, depending on side effects and complications.
We often work with your doctor after transplant to provide care. Sometimes, this means telehealth visits with our team or traveling back to Seattle for clinic visits. We invite you to travel back to Seattle for a 1-year long-term follow-up evaluation.
Even when your child is well enough to recover outside of the hospital, their immune system will still be recovering. You will need to take steps to protect against infection.
We suggest that you do not spend time around other people that have had transplant as a protection to your child. Avoid germs as much as possible. For example, wash your hands often and avoid crowds of people. This means that you may go to public places but avoid peak hours and wash your hands before eating and after going to the bathroom.
As we prepare you and your child for transplant, we will continue to talk about how you can help prevent infection in your child and keep them safe.
Even with the best prevention, your child is still at high risk for fevers and infection. Your child will need to take certain steps to prevent infection for up to a year or more after transplant.
See our handout “Preventing Infection Outside of the Hospital - Blood and Marrow Transplant.”
Handwashing is the most important thing you can do to prevent infection. Wash your hands with soap and warm water for 20 seconds, or use hand sanitizer.
See our handout “Handwashing.”
Take your child’s temperature 2 times a day (morning and night).
Call the clinic or after-hours phone number if your child has a fever of:
- 100.9° F (38.3° C) by mouth (oral)
- 100.4° F (38.0° C) for 1 hour by mouth (oral)
- 100.3° F (37.9° C) under the arm (axillary).
Do not take acetaminophen (Tylenol) until you have talked with a nurse or doctor. Do not give your child NSAIDS such as Ibuprofen, Motrin, Naproxen, or Advil. Report a shaking chill without a fever.
See the temperature chart in our handout “When to Call for Help.”
Your child may experience complications from their transplant. Some of the common complications include:
- Graft-Versus-Host Disease (GVHD): When the donor’s cells attack your cells. It can be acute or chronic (more than 100 days). It can happen in different areas of the body, including skin and gut.
- Failure to engraft: When the new cells do not make the new white blood cells, red blood cells, and platelets you need.
- Infection: This includes any type of illness or other types of infection, which is more likely when your child is immunocompromised.
- Veno-occlusive disease (VOD): Also called sinusoidal obstruction syndrome (SOS), this is when the small blood vessels that lead into the liver and are inside the liver become blocked.
Your team will give you information about complications, and help you minimize and manage them as needed. Please ask us if you have questions.
Providers, see how to refer a patient to the Pediatric Blood and Marrow Transplant Program.