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A Handbook for Patients and Parents
Introduction
The illness that brings you and your family to consider stem cell transplant has greatly affected your lives. We understand this is a very difficult time and hope the information in this handbook will help begin to answer your questions and address some of your concerns. The term transplant will be used in this handbook to designate bone marrow, cord blood or peripheral stem cell transplants. Bone marrow, cord blood and peripheral stem cell transplant are the options offered in the treatment of your child's disease. This handbook was developed by the stem cell transplant (SCT) team members to guide patients and their families through the transplant process. Our goal is to provide patients and families with information needed when receiving a transplant. The choice to have a transplant is a major decision. Each patient is unique and may react in different ways to their treatment. We encourage you to get to know other families; however, remember each patient responds and recovers differently. The entire process is complex and long. The staff will be working with you before, during and after the transplant.
Texas Children’s Cancer Center Cell Therapy and Bone Marrow Transplant Program
Texas Children's Cancer Center has one of the premier stem cell transplantation programs in the country. This includes a 15-bed inpatient unit on one half of the eighth floor and directly across from the inpatient unit is the SCT outpatient clinic. The unit employs a novel approach that provides patients with more mobility and access to activities during their stay. A specialized HEPA air-filtration system allows patients to leave their rooms to socialize and participate in functions on the unit. This advance can make an extended stay on the transplant unit less traumatic for young patients. Currently, the Stem Cell Transplant Program at Texas Children's Cancer Center performs 80-90 transplants per year. A variety of stem cell transplants are performed including those in which stem cells are collected from the blood of a family member or an unrelated donor or even from the patient. In addition to these types of transplants we have special research protocols focused on the use of alternative donors for selected diseases. The transplant team consists of doctors, nurses, nurse practitioners, social workers, pharmacists, dietitians, coordinators, child life specialists, and many others who work together to provide the best care possible. We want you to know that you and your family are the most important members of our team. You will be included in all aspects of your child’s care. It is our goal to help you understand your child’s care. We encourage you to take it one day at a time. We also encourage you to ask questions at any time during the transplant process. In the following sections you will find a straightforward account of what to expect during a transplant. Learn more
SCT Staff and their Roles
This section will introduce you to the different professionals that make up the transplant team. You will come in contact with these people throughout your transplant process.
Attending physicians. These doctors are board certified in pediatric or adult hematology and/or oncology. In addition, these doctors have received more training directed toward transplantation. These doctors oversee the entire transplant process.
Post-doctoral fellows. These doctors are licensed pediatricians who have completed their residency in pediatrics and are completing additional training to specialize in hematology/oncology or stem cell transplant. They are supervised by the attending doctors.
Nurse practitioners. A pediatric nurse practitioner (PNP) is a registered nurse who has completed a master’s degree or a Ph.D. in nursing, is certified by a national organization called the Pediatric Nursing Certification Board (PNCB), and is recognized by the Texas State Board of Nursing as an Advanced Practice Nurse. Nurse practitioners perform medical histories and physical exams, assess your child’s growth and development, prescribe medicines, evaluate your child’s responses to medicines and treatments, perform procedures, and educate patients and families throughout the transplant process.
Clinical nurse specialist. A clinical nurse specialist (CNS) is a registered nurse who has completed a master’s degree and is recognized by the Texas State Board of Nursing as an Advanced Practice Nurse. The CNS is responsible for educating nurses with didactic and clinical information and acts as a resource for clinical problem solving and assists with overseeing the patient’s plan of care. The CNS also works to educate the patient and family during the transplant process.
Stem cell transplant coordinator. The transplant coordinator is usually the first team member to contact the family of a patient needing a transplant. The transplant coordinator is responsible for insurance approval of the transplant and pre-transplant evaluation and obtains financial approval for all aspects of the transplant including the human leukocyte antigen (HLA) tissue typing when appropriate. The coordinator plays a vital role throughout the transplant process, such as obtaining HLA tissue typing, unrelated donor searches, stem cell collection and radiotherapy referrals. The coordinator also schedules pre-transplant evaluation of the patient and donor, central line placement, and patient conferences. The coordinator works closely with the transplant doctors, nurse practitioners and nurses to ensure that all evaluations are complete before setting the transplant date.
Registered nurses. The nursing team on the transplant unit and clinic are experienced in caring for children throughout the transplant process. The nurses are trained to function in both the clinic and in-patient settings. These nurses have acquired specialized skills and knowledge to help care for your child before, during and after transplant. Nurses work closely with the medical team to assess your child, communicate your child’s needs to the doctors, coordinate and assist with treatments and provide quality care.
Medical Assistants (MAs) and Patient Care Assistants (PCAs). The MA is a nursing assistant in the Stem Cell Transplant clinic who has been specifically trained to care for children undergoing a transplant. The MA will take your child’s vital signs in the clinic, assist into an exam room and schedule tests that may be needed. The PCA is a nursing assistant in the inpatient Stem Cell Transplant unit who has been specifically trained to care for children undergoing a transplant. The patient care assistant will take your child’s vital signs, daily weight, change the linen and can assist your child with bathing. They will also assist the nurses with many different tasks. Like the nursing staff, the MAs and PCAs are trained to work in either clinical setting (clinic and inpatient unit), so you may see them in either area.
Pharmacists. Pharmacists working on the stem cell transplant unit are trained in the handling of chemotherapy medicines and other supportive medicines that children undergoing transplant may need. The stem cell transplant unit has a unit pharmacist and a clinical pharmacist. A clinical pharmacist has completed special training through a residency-training program in hematology/oncology pharmacy. The role of a clinical pharmacist is to monitor all your child’s medicines for correct doses, side effects, drug interactions and medicine levels in the blood. The clinical pharmacist is available to assist the SCT team and family with questions regarding medicines.
Dietitian. Nutrition on the Stem Cell Transplant unit is provided by a register/licensed dietitian. The dietitian assesses and monitors the nutritional status of your child throughout the transplant process to help assure that adequate nutrition and normal growth patterns are maintained. The dietitian provides patient education regarding dietary restrictions and strategies for maximizing nutritional status. They also serve as a consultant in determining the need for additional nutritional support.
Social workers. Social workers at the Cancer Center have master’s degrees in social work and are trained to counsel families. Social workers help patients and their families cope with the stresses that accompany illness by learning your unique strengths and needs. Social workers offer a variety of services to patients and their families such as family counseling and referrals, pre-admission and discharge information planning and assistance in obtaining resources such as housing, food, transportation and financial assistance. Your social worker will work closely with the SCT team to formulate plans that fit the individual needs of your child and family. Learn more about our social workers for patients with cancer and blood disorders
Physical and occupational therapist. A physical and occupational therapist will perform an initial screening of your child before the transplant and again one to two weeks after the transplant. An assessment of your child’s strength, development, overall fitness level, and his/her ability to perform age-appropriate activities of daily living is evaluated. If necessary, a treatment program will be initiated to help your child in those areas. It is very important that your child maintain a normal routine as possible while in the hospital to help your child to feel well. Physical or occupational therapy may continue after discharge from the hospital if needed.
Child life specialists. A child life specialist focuses on the emotional and developmental needs of children throughout the transplant process. Through play therapy, a child life specialist strives to reduce the stress of the patient and enables them to cope with the experience in a positive manner. Child Life Specialists help patients by reducing the stress and anxiety that many children experience in hospital and healthcare settings. Specific services available include age appropriate education, preparation and support for medical procedures, therapeutic play, and sibling teaching. The child life specialist is also involved in assisting with your child’s school re-entry, helping with a positive and consistent transition into schools. Learn more about our Child Life Services
Financial counselors. The financial counselor is the contact person for any insurance or financial questions regarding the stem cell transplantation.
Psychologists. The psychologists work with the other professionals in your transplant team to strengthen the child and family’s ability to cope with the strain of the illness and hospitalization. The psychologists are available for consultation if stress causes emotional or behavioral problems, conflict within the family, or communication problems between the family and staff. Consult with your social worker to access psychological services. Fees for psychological services should be discussed with your insurance company.
Teachers. Teachers from the Houston Independent School District (HISD) available during the school year for hospitalized patients. Their primary purpose is to help students maintain academic skills during hospitalization. The teachers will modify the amount of material presented according to how the student is feeling each day. If your child is in a different school district, he/she will be enrolled in HISD while in Houston then be re-enrolled back into their home school once the patient returns home. The teachers will have ongoing contact with the home school and will teach the same curriculum with the same textbooks as the home school if possible.
Chaplain. Texas Children’s Hospital has a chaplain service that is available for support and to assist families with any spiritual or religious concerns you may have.
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