a stem cell transplant
When your child is referred to Cook Children's for a transplant, you will meet with the transplant specialist. This appointment should include the patient and the donor. The doctor will go over the transplant process and answer questions that you, your child and the donor may have.
About one month before your child's scheduled transplant, your child will come in for a pre-transplant workup. For patients who do not live near Cook Children's, we will work with your pediatrician to have as many tests as possible done near your hometown.
The pre-transplant workup usually includes the following tests:
- EKG and echocardiogram to check your child's heart
- Chest X-ray to check your child's lungs
- Blood tests to determine previous viral infections
- Dental exam and cleaning to identify any potential problems before transplant
- Hearing test
- CT or MRI scans
- Pulmonary function tests (PFT)
- Testing to check your child's developmental stage and learning ability
Just before your child begins transplant radiation or chemotherapy, your child may require a new double or triple lumen central line placement. This central line provides nutritional support, blood products and frequent blood tests and medication to be done via IV. The central line will most likely be removed a few weeks or months after your child's discharge from the medical center.
Right before your child's admission, staff will complete any remaining tests and discuss consent forms. If your child requires radiation, you will meet with our radiation physician.
What to bring to the medical center
For your stay, we suggest you bring comfortable clothes, slippers and warms socks for both you and your child. Clothes need to be machine washed, dried in a hot dryer and packed in a suitcase or plastic bag to keep them clean until you arrive.
Because this will be a lengthy stay, you may want to bring your own clean pillow and blanket (feather pillows are NOT allowed). You may also bring your child's favorite stuffed animal, toys, videos and books. Photographs, posters and drawings can be used to decorate your child's room to make it feel as familiar as possible.
You may bring books, magazines, digital devices, and crafting projects like needlepoint for your own enjoyment. However, we will need to clean any items you bring to the medical center with a special cleaning agent that we have in the unit.
Our nursing staff will introduce you to the transplant unit and discuss the guidelines we have to help protect your child. At this time, you will also receive information about preventing infection, your child's special diet and the location of important areas and conveniences in the medical center.
Once your child is admitted to the medical center, visitation is limited. However, we do ask that you have someone with your child at all times. Both parents may stay with the child during the day and one may stay at night. Staff will ask for a list of five people—including parents—who will serve as caregivers. Anyone not on the list will be considered a visitor. Visitors may only enter the unit during visiting hours and must stay in the hallway. There is a window in your child's door and a phone that communicates only to your child's room, allowing others to see and talk with your child. Children under age 5 are not permitted in the transplant unit.
Flowers and plants are not permitted in the transplant unit because they can put your child at risk for infection.
The transplant team
Your child's care will be provided by a team of specialized people with different roles, including:
- Transplant physicians
- Pediatric nurse practitioners (PNP)
- Transplant nurse coordinators
- Pediatric nurses
- Social workers
- Financial counselor
- Clinical support staff
- Child Life specialists
- Physical/occupational therapists
- Case managers
- Patient educators
- School teachers
Parents are also considered a part of the team. As such, you will be involved in daily team meetings regarding your child. We recommend that you download a copy of our family medical planner to make it easier to keep track of all of the names, medications, treatments and care plans you will need to know during your stay and when you return home.
We are here to help.
If your child has been diagnosed, you probably have lots of questions. We can help. For information on support, research clinical trials, and resources, click here. If you would like to schedule an appointment, refer a patient or speak to our staff, please call our offices at 682-885-4007.