Care for patient and any other child(ren)
Every patient undergoing BMT needs a full-time adult caregiver or caregivers, to serve as companion, advocate, take care of nutrition and hygiene needs, administer medications, monitor the patient’s condition, provide transportation to and from the BMT clinic during outpatient phases, maintain a home for the patient, and to take care of the patient’s personal business, and more.
To begin to prepare themselves for this new and demanding role, parents , and those who will be involved with helping the family, may want to read Caregivers’ Guide for Bone Marrow/Stem Cell Transplant, Published by the support organization National Bone Marrow Transplant Link, copy of the guide may be downloaded form their website, or purchased in print copy.
Being a caregiver is a very demanding role, with its own physical and emotional challenges. Each family will need to determine who will be their child’s caregiver(s), and may want to rotate the role depending on responsibilities to other children and family members, work, and distance. Relatives and friends may be able to take turns with parent(s) as caregivers, and may be of special help to single parents, and in cases where the transplant is being done far from home.
Likewise, plans need to be made for the care of any other children living in the home. Arrangements for siblings of the patient will also have to factor in whether they will remain in the family home, travel to Seattle, or stay with relatives or friend, possibly out of state. There is no single correct solution for all families, it will depend on each family’s situation, finances, age of child(ren), availability of caregiver(s) and other helpers, timing of transplant, parental need to keep working, etc.
The normal emotional impact of a sibling’s illness, need for absence of parent(s), disruption of family life, as well as the need for, and cost of childcare arrangements all need to be taken into consideration. Parents whose child needs to be transplanted at a center away from home, need to weigh both the monetary cost of bringing other child(ren) with to the BMT city and the logistical and emotional cost of the disruption of family life at a time when the parent(s) must focus on the sick child.
Choices will need to be made about whether it is appropriate for young siblings to have to receive childcare from strangers in a strange place versus staying with familiar carers even thought the parent(s) is away. For adolescent siblings, disruption of school and activities may be an issue. If sibling of the patient do travel with their families to Seattle, they too may attend the Hutch School, a special school run by Fred Hutchinson for patients, their siblings, and children of patients.
For more about siblings needs, the Oncology Nursing Society fact sheet for parents may be helpful:
Support services for siblings of patients
The following programs were developed in recognition of the needs of the brothers and sisters of patients who with serious illnesses or disabilities, or who are undergoing cancer treatment including BMT.
Support program at CHRMC includes activities and discussion; contact for schedule.
National program, specifically for siblings of children with cancer; request details of programs and services.