During the initial consultation visit to the Bone Marrow Transplant Clinic, you and your child will meet with an attending physician, nurse specialist, social worker and financial counselor.
Your child's history will be reviewed and potential donors discussed. Additional blood studies may be obtained in order to complete the tissue typing. We will review with you and your family the basic issues of the bone marrow transplant and answer any questions that you might have. For some diseases there also may be evaluations such as developmental testing and a consultation with the geneticist.
Following the initial consultation, a decision is made by both you and the doctors as to the feasibility and desirability of going ahead with the transplant. Your child's case is presented at the pediatric BMT clinical conference at which cancer, blood and immune system specialists as well as nurses and social workers meet to discuss all of the patients. A consensus is reached at that time regarding whether or not to proceed with a transplant.
Pre-Transplant Work-Up and Evaluation
After the decision has been made to move forward, the next step is for your child to have a work-up and evaluation. The purpose of the pre-transplant work-up is to thoroughly evaluate your child's medical and psychological status with respect to his or her ability to undergo a transplant.
Many potential bone marrow transplant patients have already had significant problems from their primary diseases. These problems as well as their treatment, like chemotherapy, can damage vital organs including the heart, lungs, kidney, liver and brain.
Generally, the patient undergoes a thorough medical evaluation two to three weeks prior to admission. This evaluation include the following tests:
- Echocardiogram — An echocardiogram is used to record the echoes of sounds sent through the heart. This test shows the size of the four heart chambers, as well as how the heart muscle functions. Your child may need to remove clothing above the waist for this test.
- Pulmonary Function Test — This test measures your child's lung capacity. Your child will be asked to breathe into a machine, and blood will be drawn to determine how well oxygen is being absorbed from his or her lungs.
- Brain Magnetic Resonance Imaging (MRI) — An MRI scan uses magnets, rather than X-rays, to produce detailed images of the brain. An MRI machine sends radio waves into the body and then measures the response with a computer. The computer makes an image or picture of the brain.
- Hearing Test — A hearing test is performed to obtain baseline information about you child's hearing. Headphones and speakers are used to evaluate your child's response to sound. The extent of testing depends on your child's age and takes approximately one hour. Parents may be in the room during the testing.
- Developmental Testing — These are special tests that are administered by a licensed psychologist from the Child Development Center to determine cognitive (intellectual) and psychosocial abilities and milestones of your child. In addition to age specific testing, parents are asked to respond to questions. It takes approximately one hour to complete. This information is useful to both parents and the health care team to provide anticipatory guidance and support for learning activities.
- Dental Evaluation — Your child will have a dental exam to make sure that there are no hidden infections or abscesses and that no teeth need to be pulled. If teeth do need to be pulled, it usually results in a two week delay in the transplant.
- Blood Tests — Blood tests will be performed to evaluate liver and kidney function and to check for certain germs that can cause infections during a bone marrow transplant, such as HIV, CMV (cytomegalovirus) and the hepatitis viruses.
Depending on the type of transplant and your child's condition, the patient may undergo a special study of the kidneys, called a glomerular filtration rate (GFR). Your child's referring doctor can complete most of the studies while a few others must be done at UCSF Benioff Children's Hospital.
Your child also may need:
- Bone Marrow Aspirate and Biopsy — Cells are removed from the bone marrow. A bone marrow aspiration and biopsy usually takes 15 to 20 minutes to complete. Understandably, bone marrow aspirations may be frightening to you and your child. But a local anesthetic is injected deep under the skin to numb the puncture site and takes effect quickly, helping to control the pain.
- Spinal Tap — A clear fluid called cerebrospinal fluid (CSF) surrounds the brain and spinal cord. Sometimes a sample of this fluid is removed and examined for cancer cells or signs of infection. Another name for a spinal tap is lumbar puncture or LP. This procedure takes about 15 minutes.
The bone marrow aspirate/biopsy and the spinal tap are performed within two weeks of admission for transplant.
Visits also will be scheduled with our radiation oncologist, if radiation therapy will be used during the conditioning period, and child life specialist. For children with some genetic diseases, additional evaluations by specialists in the nervous system (called neurologists), hormonal glands (called endocrinologists), lungs (called pulmonologists) and heart (called cardiologists) may be necessary. For some diseases a liver biopsy may need to be performed.
All of these evaluations will be done as outpatient basis. While the pre-transplant work-up and evaluation is being completed, a tentative schedule is established for admission for transplant. This will vary depending on your child's need for additional treatment prior to transplant, whether an unrelated donor search is necessary and bed availability.
Informed Consent Conference
Following the pre-transplant evaluation you and your family will have an informed consent conference. You will meet with a bone marrow transplant doctor, nurse, social worker and other members of the health care team to review the results of the pre-transplant evaluation and the treatment plan, and discuss the benefits and risks of a transplant.
It is important for you to take as much time as you need to understand every aspect of the transplant and to have all of your questions fully answered. The conference takes about an hour and a half, and it is essential that both parents or legal guardians be present. Depending on age and other factors, the recipient and the bone marrow donor also may be present or may have a separate meeting with the BMT team.
We will tape record the informed consent conference so that you can listen to it again. Prior to admission for the transplant, both parents must sign the consent forms. The consent forms are documents that review the essential purposes and procedures of the bone marrow transplant, as well as the risks and benefits. The consent form is signed by the patient and donor, depending on their ages, and their parents as well as the transplant doctor. Signing the consent form indicates that everyone understands as much as possible about what is involved in the bone marrow transplant process and agrees that it is the best treatment available.