Staying Healthy After Transplant: Long-Term Follow-Up
It takes time to recover from bone marrow transplantation (BMT). Expect your child to lack stamina for a period of weeks or months after returning home. Also, it may take up to a year for your child’s immune system to return to normal.
Your child’s doctor will give you specific advice on how to guard against infections during the first year. The doctor will also tell you how to manage any medications your child needs and what to watch for in terms of complications such as graft-versus-host disease (GVHD). To protect your child during the first year post-transplant, the doctor may recommend that your child not return to school for one year, using home tutoring instead. (Children having an autologous transplant, in which their own cells are removed from and then re-infused into their bodies, may not need so many restrictions in the first year after their transplant.)
Routine Doctor Visits
During the first year after transplant, your child will need to be seen regularly for a physical exam, growth and development measurements, blood counts, and kidney and liver function tests. You can come to Seattle Cancer Care Alliance (SCCA) for these regular doctor visits if you live in the Seattle area. But if you live elsewhere, it’s fine to see your family doctor, pediatrician, or pediatric oncologist at home for these routine tests. These visits should happen about once per week for the first month after you return home, then every other week for the next two months, and then once every three or four weeks.
At the end of one year, you and your child should return to SCCA for a long-term follow-up evaluation that will include a special evaluation for late-stage complications such as graft-versus-host disease.
Lifelong Support: Long-Term Follow-Up Program
The SCCA Pediatric Long-Term Follow-Up (LTFU) Program will help you make the transition back home and keep on schedule with your child’s doctor visits. Staff from the LTFU Program will meet with you toward the end of your child’s recovery period and give you a comprehensive transplant discharge evaluation. All this will be coordinated and approved by your child’s SCCA doctor. The Patient & Caregiver Resource Manual that you will receive also contains information about long-term recovery.
Our LTFU Program is one of the oldest, largest, and most experienced in the world. Started in the 1980s, this comprehensive, multidisciplinary program is run by doctors and nurses assigned full time to monitor the health of children who have had a transplant at SCCA. We believe that close monitoring, individualized therapy plans, and ongoing communication with families are the best ways to ensure proper growth and development and avoid GVHD after transplantation.
Frequent clinic visits and tests, telemedicine checks, and ongoing coordination with your primary doctor are important to anticipating and avoiding post-transplant problems. As your child grows and develops, we maintain heightened awareness for the many health concerns that may emerge. Our dedicated LTFU specialists will help you deal with all potential issues.
Once you are back home, your child will be under the care of your referring doctor. We will give you a packet of information to take with you and give to this doctor. The packet contains a summary of your child’s care at SCCA and recommendations for care in the future. The LTFU Program provides an open line of communication for families as well as their local doctors. You or your child’s doctor can call anytime for advice.
Follow-Up After Transplant for Non-Malignant Disease
The LTFU Program has a clinic especially designed to keep in touch with children who have had BMT to treat a non-malignant disease. SCCA has performed nearly 400 transplants for non-malignant disease in children, and our LTFU doctors and nurses are ready to help parents and doctors deal with the special post-transplant issues that may develop in children with certain rare genetic disorders, immunodeficiencies, or bone marrow failures. Importantly, since these children often receive less intense conditioning, our specialists are skilled in assessing the stem cell graft for mixed chimerism—the mix of donor and patient cells that may determine your child’s return to health as well as their risk of GVHD or other long-term or late risks.
How LTFU Helps You and Your Child
LTFU services include:
- Pre-discharge education on post-transplant care
- Direct communication with your child’s primary doctor and coordination of the long-term treatment and monitoring plan
- Individualized education and monitoring programs aimed at maintaining your child’s normal growth and development and reducing the risk of GVHD
- Very detailed plans to ensure proper handling of the spectrum of potential issues—from medication management, dental care, and vaccinations to gynecological follow-up in girls, as well as graft monitoring and attention to general psychosocial issues.
- Dedicated phone line to special LTFU transplant nurses and doctors to answer any questions or concerns from families or their doctors
- Annual visits at SCCA for routine checkups
- Ongoing studies to measure patient quality of life, side effects, and late effects
- Special programs for successful transition from pediatric to adult long-term health care and self-management
- Regular newsletters, surveys, and support groups for patients and families
If your child had an autologous transplant, you will not face the same long-term issues; if needed, you can plan return visits through our LTFU telemedicine program after you leave.
You can learn more about long-term follow-up on the Fred Hutchinson Cancer Research Center website.