If the institution where your child is treated is also an accredited transplant center, you may not need to travel for this part of your child’s treatment. However, if you need to choose a transplant center, it is an important and often difficult decision. Institutions may just be starting an SCT program, or they may have vast experience. Some centers may be excellent for adults, but have limited pediatric experience. Some may allow you to stay overnight with your child; others may restrict access.

We were lucky that my son was able to get his transplant at our local children’s hospital, where he had been treated after diagnosis and after relapse. So, we knew everyone in ped onc and felt very comfortable. I’m a transplant nurse for adults—do stem cell collections and also do outpatient infusions. I don’t know whether that was a blessing or a curse. I know a lot about adults who get transplants, but I learned that kids are really different. When our 4-year-old son relapsed six months into maintenance and we knew he needed a transplant, I was terrified. Our transplant doctor had to keep reminding me that kids are different. Later, it was good to have the medical knowledge because I could ask reasonable questions and manage a lot of his care at home.

The center closest to your home may not provide the best medical care available for your child or allow the necessary quality of life (social workers, child life services) that you need. In addition, your insurance plan may require your child to have the SCT at a specific center. To see a list of transplant centers, visit www.bmtinfonet.org/before/choosingtransplantcenter. Asking the following questions can help you learn about the policies of different transplant centers:

• Is your center accredited by the Foundation for Accreditation of Cellular Therapy (www.factwebsite.org/AboutFACT)? This agency inspects transplant programs and certifies programs that provide high-quality care.
• What are your program’s 1-, 2-, and 5-year survival rates for different types of childhood leukemia? (Remember that some institutions accept very-high-risk patients, and their statistics will not compare to a center that performs less-risky transplants.)
• What is the nurse-to-patient ratio? Do all staff members have pediatric training and experience?
• What support staff is available (e.g., educators, social workers, child life specialists, clergy, support groups, volunteers)?
• Will my child be on a pediatric or combined adult–pediatric unit?
• What are the institution’s rules about parents staying in the child’s hospital room?
• Are children allowed to visit?
• What kinds of temporary and long-term housing are available near the center? What are the costs for this housing?
• What infection control measures does this center use for transplant patients? Isolation? Gown and gloves? Washing hands?
• What kinds of activities are available for children during their hospital stay?
• What is the average length of time before a child leaves the hospital? How long before he can leave the area to go home (if you live far from the center)?
• What long-term follow-up is available? Does the center have a post-transplant clinic that focuses on late effects?
• How does the center stay in contact with the child’s primary doctor?
• Explain the waiting list requirements, if any.
• How much will this procedure cost? How much will my insurance cover?

Most transplant centers have videos and booklets for children and their families that explain services and describe what to expect before, during, and after transplant. You can call any transplant center that you are considering and ask that all available materials be sent to you.

The head of oncology from a major transplant center comes to our city every two months to follow up with the kids who have been treated there. It was a big draw for us to have post-transplant follow-up at home, rather than having to travel a great distance to get back to the center. Family members weren’t required to cap and gown, only scrub their hands. Since I’m allergic to those hospital gloves, this allowed me to stay with my daughter throughout. We did, however, call around to several centers to compare facilities, costs, and insurance coverage.

Making an informed consent is a serious decision when considering a life-threatening procedure such as an SCT. It is very important to work closely with your child’s oncologist and treatment team when making this decision. Do not hesitate to keep asking questions until you fully understand what is being proposed. Record the conversation to review later, or take along a family member or friend to take notes. You do not need to sign the consent form until you feel comfortable that you understand the procedure and have had every question answered. Even after the consent is signed, you can change your mind up until the point that your child is admitted to the transplant unit and treatment begins.

We were fortunate because our transplant facility keeps the kids in isolation but our son Austin could go out in the hallway. Only one kid was allowed in the hallway at a time, so they had a sign-up sheet. We didn’t have to wear gowns, masks, and gloves, but we didn’t let anyone in who was wearing shoes. In the room, we played, we did puzzles, and we watched TV. Each room had a little anteroom, so that’s where my husband and I ate because we weren’t allowed to eat in his room. I was obsessed with wiping down everything in the room (and everyone’s cell phones) with Lysol® and made sure every person who walked in had to thoroughly wash his or her hands. I flipped out when someone blew his nose in the room—we asked him to leave.