Your child might have a bone marrow (stem cell) transplant to treat their sickle cell disease. This transplant can cure the disease, but it takes time. This article tells you about the process of having a transplant for sickle cell disease, including what you and your child need to do.
Testing to find a bone marrow donor
Your child’s doctor and St. Jude team will talk with you about whether a bone marrow transplant can help your child. Once you decide, several people will have tests to learn if their cells could match your child’s. If so, this person could be the donor who gives healthy cells to your child. The medical term for this testing is “HLA typing.”
Who is tested for a match?
Your St. Jude team will test your child with sickle cell disease, both of your child’s parents, and all of your child’s full brothers and sisters. A full brother or sister has the same mother and father.
Once everyone is tested, it takes about 2 weeks to get the results. Then, the team knows if there is a good match for your child.
Finding a donor
About 25 percent of patients have a brother or sister who is a match. This means cells from the brother or sister can be used for the transplant.
If we do not find a match, we will look for a different donor. Someone who is taking part in a clinical trial (research study) could be a good match. When we know of some possible matches, we will talk with you and with your child if they are old enough. We can also answer questions about the bone marrow transplant. You usually talk to the transplant coordinator, but you will also have a chance to talk with the transplant doctor.
Testing before the transplant
Your child will need testing before the transplant. We can start making plans for this testing after your child has a donor. The actual transplant will probably happen in spring or summer, to avoid cold and flu season. A transplant puts your child at high risk from colds and flu, so we want to lower the chances of getting those as much as possible.
Testing before the transplant takes about 2 weeks. You can expect to spend several hours at St. Jude each day for these tests. They may include:
- MRI, CT (CAT) scans, and X-rays, and
- Heart, lung, and kidney tests.
You will also spend time talking with the transplant team. A doctor will put a device in your child that will give the St. Jude team access to your child’s veins for the transplant. This is so they do not have to start an IV every time. The device is called a “double lumen central venous line.” If your child has a different device already, we will replace it with a double lumen central line.
When the tests are complete, you will meet with a doctor to review the transplant information and make sure you understand it. You are welcome to ask any questions that you have about the transplant. Then, you will sign a consent form that allows your child to have the transplant. You also review plans for your child’s hospital stay with a nurse or coordinator. Your child will stay at St. Jude for 5 or 6 weeks, so planning that stay is important.
Testing for the bone marrow donor
The bone marrow donor will also need tests before the transplant. If the donor is your child’s brother or sister, you might need another parent or caregiver to help everyone get to their testing appointments.
Getting the transplant
Your child will start chemotherapy once they are staying at St. Jude. You might hear this called the “prep” or “preparative regimen.” It prepares your child’s body to get a new immune system and start making healthy cells after the transplant. We will give you information on each chemotherapy drug, so you and your child know what to expect.
Getting donor cells
Your child will get the cells from the donor after chemotherapy is complete. A team member will give the cells through the double lumen central line. The medical term for giving the new cells is “the infusion.”
On the day of the infusion, several nurses and a lab technician will stay in your child’s room. They will watch your child closely for signs of a reaction to the transplant cells. You and one (1) other caregiver may stay with your child.
Waiting for donor cells to grow
The next step is waiting for the donor cells to grow and multiply in your child’s body. The medical term for this is “engrafting” (in-GRAFF-ting). It takes several weeks, and allows your child’s body to make healthy cells. You might want to read "Do You Know … What to expect on the transplant unit" to learn more about what your child’s stay will be like.
Leaving the hospital
You and your child must stay in the Memphis area for at least 100 days after the transplant. You might need to stay longer, depending on how your child is doing. During this time, your child will have appointments in the outpatient transplant clinic so we can check their progress.
If you have questions about bone marrow transplants for sickle cell disease, please ask your child’s doctor or nurse. You may also talk with a transplant coordinator.
If your child had a transplant and you have questions, please call their primary clinic. You may also contact the transplant team with questions or concerns.
This document is not intended to take the place of the care and attention of your personal physician or other professional medical services. Our aim is to promote active participation in your care and treatment by providing information and education. Questions about individual health concerns or specific treatment options should be discussed with your physician.
St. Jude complies with health care-related federal civil rights laws and does not discriminate on the basis of race, color, national origin, age, disability, or sex.
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