Donor Advocacy Program
The Donor Advocacy Program supports the health and well-being of pediatric bone marrow donors.
When a physician recommends that a patient’s brother or sister donate bone marrow, the potential donor is examined by a Children’s Mercy general pediatrician, interviewed by a Child Life professional who acts as a donor advocate, and assessed by a trained psychologist. All of these staff members are independent of the transplant team. The process ensures that all potential donors are well informed and that becoming a donor is in their best interest.
The Child Life donor advocate, pediatrician, and psychologist then work with the medical team on behalf of the prospective donor to address any concerns before the donation process continues. The advocate will remain in contact with the family to provide ongoing support through the process.
Meeting your transplant coordinator
During your first visit to Children’s Mercy, your Transplant Nurse Coordinator will introduce you to your care team. Together, they will explain what to expect throughout your care. Your Transplant Nurse Coordinator will be with you during your entire experience. He or she will schedule tests and appointments and be your main contact when you have a question or need.
Resources for Families
There are many important questions families have during their transplant journey. Children’s Mercy is proud to be a member of these organizations. Families have found information about what to expect before, during and after a transplant.
Learning about the transplant process
Every family and care team member has an important role in a successful transplant. Approximately three weeks before the transplant, you will come to Children’s Mercy to learn about what to expect during the transplant, complete lab tests, and have organ function evaluations. This visit is very important because each child’s transplant will be customized based on these evaluations.
Your Transplant Coordinator will explain what every test is and why it matters. The visit takes 2-3 days. If you live outside of Kansas City, your Transplant Coordinator will help make arrangements for you to stay at the Ronald McDonald House.
You will spend time with each member of the care team, including:
Your physician, who will spend a few hours with you going through the entire transplant process
Your nurse coordinator to talk about what you will see and experience while at the hospital. This can include what the patient room looks like, the areas where you and your child may visit in the care unit, your child’s daily routine, the transplant day and more.
A social worker, who will help connect you with resources like the parent-to-parent program, how to work with your child’s school so they can continue learning while in the hospital, support resources and any other programs that might be helpful to the family.
A specially-trained BMT pharmacist to go over treatments, pain and nausea control to help your child be as comfortable as possible, chemotherapy, side effects to look for and review of current medications to make sure they interact well with other planned medications
A BMT-trained nutritionist to talk about food and water safety, including what your child will be able (or not be able) to eat. You will also talk about feeding options - through a feeding tube or an IV – that will keep your child hydrated and nourished.
A child-life specialist, who will help make your stay at the hospital more comfortable. We will introduce older children to the BMT Bucks program. The program rewards patients for completing important daily tasks like showering and taking medication. As rewards are earned, the child can shop for prizes in our BMT Bucks store.
A BMT-dedicated financial counselor who can provide information on financial assistance, signing up for Medicare and helping with insurance authorization.
During a transplant
Preparing for the transplant
The chemotherapy and/or radiation preparative regimen are given before the transplant in the hospital, and usually last anywhere from four to ten days. Most children are in the hospital for three to four weeks after the transplant. In all, plan on your child’s inpatient admission lasting roughly four to six weeks.
Our 15-bed state-of-the-art unit was designed to care for children undergoing blood and marrow transplants. The unit has a HEPA filtration system that removes fungal spores from the air that may cause an infection. Each room has a television, DVD player, Wii video game system and WiFi access. Each room also has a “parent alcove” with a convertible sleeper sofa that includes a television, call light, desk and storage space especially for the parent. The unit also includes a dedicated playroom just for BMT patients.
Parents or other relatives who are over the age of 18 are welcome, though not required, to stay overnight with the child. A dedicated parent room is located on the unit. The room includes a television, computer, laundry services and kitchen. Brothers and sisters are permitted to visit when it is not flu season. They are not allowed to spend the night in the patient’s room. However, infants who are being breastfed are allowed to stay with mom.
Find out more about our Family Care Team, a dedicated program just for families of kids with cancer and blood disorders.
Ronald McDonald House
The Ronald McDonald House helps keeps families close during hospital stays. They provide comfortable housing. They are located about two blocks from the hospital.
After a transplant
Dedicated care after transplant
After the transplant, you will see members of your child’s care team working together to create a special care plan for your child. By carefully balancing your child’s medication, nutrition, physical and mental health, we can help reduce potential complications of the transplant and keep your child strong through recovery.
If you live within an hour of Children’s Mercy, you will be allowed to return home upon discharge. If you live more than an hour’s drive, you will stay at the Ronald McDonald House. When your doctor feels your child is stable enough to be further away from the hospital, you can return home. Your team will work with you to understand how to provide care at home so you feel comfortable.
Your child will return to the clinic at least twice a week for physical exams and blood counts along with other care needs. As time passes after the transplant, the visits will decrease.
Every spring, more than 200 people come together for the BMT Reunion. This is a wonderful event to connect with other families. We share stories, enjoy a meal and have fun activities. The medical team at Children’s Mercy looks forward to the event and always leaves inspired.
Stay tuned for the date of the next reunion in 2019.