Before your child’s admission to the transplant unit, the transplant team will assess his/her disease status and organ function. Your child will have several exams to ensure he/she is ready to proceed with transplant. The following is a list of some of the tests your child may receive:
- Audiogram: tests your child’s hearing.
- Electrocardiogram (EKG) and echocardiogram: tests heart function, as well as the rhythm and heart size.
- Pulmonary function tests (PFTs) and chest x-ray: tests your child’s lung function. During PFTs, your child will be asked to breathe in and out of a tube to determine how well oxygen is being absorbed from his or her lungs.
- Renal glomerular filtration rate (GFR) or 24 hour creatinine clearance: tests your child’s kidney function. The GFR involves injecting dye into an IV and drawing blood samples at one, two and four hours after the injection. This test measures how well your child’s kidneys filter out the dye. If your child is old enough, we may ask for a 24 hour Creatinine Clearance instead. The supplies will be provided for you to collect 24 hours worth of urine and bring in the sample from home. This urine will be sent to the lab to evaluate the kidney function.
- Bone marrow aspirate and spinal tap: may be needed to look at disease status before coming to stem cell transplant.
- CAT (CT) scan or MRI: may be done if needed to look at your child’s disease in certain parts of the body.
- Dental exam: The mouth is examined for any teeth that may need a filling or may need to be pulled. These must be treated before transplant so they are not a source of infection later. It is important to keep the mouth clean and moisturized throughout the transplant process.
- Ophthalmology exam: may be performed to evaluate your child’s eyes and vision.
- Neuropsychological: Your child may also have testing that includes intellectual, developmental and academic screening and review of school records.
Most of these tests should not cause your child any pain. The SCT staff will arrange these tests for you. It is very important to notify a member of the SCT team immediately if any of the scheduled tests were missed. Your child will also need to be seen in the SCT clinic prior to admission. During this clinic visit, your child will have a physical exam and blood tests drawn to ensure that your child is ready for transplant.
Visits also may be scheduled with a radiation oncologist, if radiation therapy will be used during the conditioning period. For some children additional evaluations by specialists in the nervous system (neurologists), hormonal glands (endocrinologists), lungs (pulmonologists) and heart (cardiologists) may be necessary. For some diseases a liver biopsy may be needed.
All of these evaluations will be done as outpatient. While the pre-transplant work-up and evaluation is being completed, a tentative schedule is set for admission to the hospital 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.
Because many infections can be transmitted through casual contact, your child should stay away from ill people approximately two weeks before he/she is to be admitted to the hospital. Any suspected illness (cough, runny nose and fever) of your child should be reported to the clinic as soon as possible.
If another child will be the stem cell donor, he/she may still attend school and other social outings, but will need to be kept away from people that are sick with a cold, flu, or any other symptoms. Any suspected illness of the donor should also be reported to the clinic as soon as possible.
Central venous catheters are special types of intravenous lines (IVs). Central venous catheter remains in place throughout the entire transplant process and helps avoid the pain and discomfort of multiple IVs and blood draws. A central venous catheter will be used to administer blood products, chemotherapy, nutrition and other medicines, to draw blood required for daily tests and to infuse the stem cells. A pediatric surgeon will insert the catheter while your child is under general anesthesia. A small incision is made in the skin usually near the collar bone. The catheter is threaded into a large vein, which leads to the heart. The external end comes out of the skin in the middle of the chest. A total of two lumens are often necessary. Your child will feel some discomfort after the surgical procedure which should go away in a few days. This procedure does not require hospitalization. The central line will usually be left in place for several months after the transplant.
If a central venous catheter is not placed, then a PICC (peripherally inserted central catheter) will be placed. A PICC is inserted in an arm vein that leads towards the heart. PICCs are inserted by radiologists, using ultrasound, chest radiographs and fluoroscopy to aid in their insertion and to confirm placement. A home care nurse will teach you and your child how to care for these lines.
Although not a requirement, designated donors can be used to donate blood and platelets for your child. Blood and platelets need to be screened for cytomegalovirus (CMV). If your child is CMV negative then only persons who are negative for this virus can donate blood products to be used by your child.
If you would like to arrange for designated donor platelets, identify 4 to 6 people who would be willing to undergo platelet pheresis. Pheresis requires the person to have an IV in each arm, one IV to take whole blood out and one IV to re-infuse the blood minus the platelets. This process can take 1-1/2 to 2 hours. You must arrange a rotation schedule for your donors. Platelet donors can donate every 3-5 days. Transplant patients may need platelet transfusions twice a week or more. Your child may require more or less transfusions depending on his/her clinical status.
If you would like to arrange for designated donor red blood cells, identify 3 to 6 other people who would be willing to donate. A donor may donate red blood cells once every eight weeks. Red blood cell donors require only one IV for approximately twenty minutes. Transplant patients may need red blood cells every other week. Your child may require more or less transfusions depending on his/her clinical status.
Note: For donors it may also be possible for donors to collect their own blood and should they need a transfusion they have their own blood ready. This must be done at least several weeks prior to the bone marrow harvest to allow enough time for their hemoglobin to recover.
Gulf Coast Blood Center is the regional blood bank center for Texas Children’s Hospital. Call (713) 790-1200 for further information on blood donations.
Stem cell transplantation is an expense covered by most insurance policies. You must check your policy to be sure. The SCT Coordinator will also contact your
insurance company to verify coverage and obtain approval. Medicaid and CIDC cover most stem cell transplants.
Many insurance companies will require that you pay the deductible for the calendar year. Deductibles will vary. There are incidental expenses associated with the transplant such as meals for the parent, parking, childcare for the other children, etc. Many families do not have the immediate financial reserve to meet this expense. Your social worker or the financial counselor can work with you regarding these expenses.
Psychological and Social Preparation
Your social worker will meet with you prior to transplant and discuss the major stresses of the transplant experience. Each child and family member is unique and will have individual ways of dealing with the challenges of a SCT. The social worker will try to get to know enough about your family to help you prepare for the challenges ahead. Your social worker will ask you a variety of questions about your child and family such as past medical experiences, other pressures on the family, sources of emotional support and typical ways family members cope with stress. These questions should help us understand what might make the transplant experience less difficult for all family members and help the team develop plans that fit your family as much as possible.
A few days before transplant or upon arrival to the transplant unit, the child life specialist will meet with you and your child to discuss the patient’s understanding of transplant, preferred activities to create a normal environment, and positive coping techniques. While in the clinic, preparation for central line placement and an explanation of the transplant may be provided with the child life specialist through medical play and picture books. Specific questions and any misconceptions will be addressed at this time to help alleviate any anxiety that may be present.
A child life specialist will also meet with the siblings to assess their understanding of the transplant process and hospitalization. The child life specialist will address concerns that the siblings may have during transplant which may include separation from parents and patient, the child’s illness, length of hospitalization and visitation guidelines. The child life specialist will encourage communication between the sibling and patient throughout the transplant. If the sibling is a bone marrow donor, the child life specialist will provide teaching and education about the bone marrow harvest, including a tour of the surgery unit. The donor sibling may have special concerns that will be addressed according to each individual case.