Although there is no definite point at which one stage ends and the next one begins, the on-treatment phase is often considered the period when treatment patterns become established and the patient moves from the cancer diagnosis to a schedule of treatment regimens or protocols. As families begin adapting to a chronic situation, life moves toward a new state of normalcy that changes to fit the reality of treatment. New medical information and the day-to-day demands of caring for the child can add to the overall stress within the the family as daily living proceeds in this "altered state of normalcy."
Discharge from the hospital can cause anxieties about leaving the security of the hospital. It is normal for family members to feel concerned about having the necessary skills to care for an ill child at home. A partnership and open exchange of information between the pediatric oncology team, the family, and the community-based medical team will help when the patient is ready to return to his or her home community. It is helpful to ask questions, express all concerns and seek answers about how to best care for the patient at home.
- Care conferences arranged with the healthcare team may include physicians, nurses, social workers, nutritionists and other professionals to discuss concerns and improve communication. It's very helpful to make a list of questions and concerns prior to the meeting. Medical words can sound foreign and confusing, so you should ask people to repeat and explain any unfamiliar terms and concepts you don't understand.
- Phone numbers and an understanding of the medical on-call system for any given treatment center is essential in getting care for your child between scheduled clinic appointments and hospital admissions. Information is available from the treatment center staff.
- Free education and training materials on childhood cancer are available from medical staff to reinforce what you have learned before and after hospital discharge. Publications from various organizations are available covering the psychological, social and emotional impacts of cancer on the family.
- Most children with cancer will make progress toward the end of treatment and an anticipated cure, but families may also experience setbacks that can include cancer recurrences. These can require ongoing changes in treatment and new information. To cope with this ever-changing situation, it helps for all family members to stay flexible throughout the treatment process.
- You will want to consult with the child’s doctor about school attendanceand the types of activities your child can resume during treatment.
Yolanda Vinajeras, MSW, University of New Mexico HSC