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Preparation and Transition
Going home can be exciting and joyous for the whole family. It can also be a hectic, fearful, and anxiety-filled period. Both you and your child may feel apprehensive when leaving the security of familiar doctors and nurses, even though they are only a phone call away. All of these emotions are normal responses to being discharged from the hospital.
The social work department of the hospital—or, in some cases, the nursing staff—can help you plan for your child’s homecoming. If home care or services are needed, advance coordination can ease the transition from hospital to home. If there is any medical equipment your child will need to have at home, the social worker or nursing staff will make the arrangements.
You want the transition to go as smoothly as possible. The days ahead of you may be filled with stressful moments. Schedules may need rearrangement to accommodate clinic visits. Family members may be separated; siblings may feel neglected. And everyone in the family may well be feeling worried or tense.
“My brother and sister were very worried about me when I was going through treatment. My parents helped them feel less stressed by telling them honestly what was happening with me at the hospital. The hospital would not let my brother or sister visit me while I was an inpatient, which was hard for all of us.”
It is important to continue life as normally as possible, yet under these circumstances, it is bound to be difficult. Your child needs to get back to some semblance of normal daily life. Whatever changes their condition may have produced in their lives, children with brain tumors still have the same needs they had before their tumor was diagnosed, including maintaining a social relationship with friends, attending school as often as possible, and being involved in all their favorite activities.
Your encouragement and support in reestablishing such normal daily routines will really help. Overprotecting your child might send your child the message that you think he or she cannot handle a normal routine, whether emotionally or physically. This can create more distress in the long run. Treating your child as if he or she is fragile might keep him or her away from situations that provide opportunities to grow and develop normally. Sometimes when a family is going through such a stressful situation, it can be difficult for parents to determine what information or emotional support the child needs. Trying to find the right balance between protecting children and sharing information can be particularly tricky.
“We used a ‘lights out’ ritual for our family that was a routine time before bedtime that was open for any questions our children had. It helped us understand what was weighing on our children’s minds each day, and we found they appreciated being in control of the conversation. This technique was especially helpful for the siblings who had lots of questions and felt pretty isolated from their brother’s treatment. . . . . Sometimes the questions were very difficult for us to answer, but we felt it was okay to say we did not know the answer and we would get the answer from our son’s doctor.”
Consider connecting with a group of parents who are going through (or have been through) experiences similar to yours and your child’s. The Children’s Brain Tumor Foundation has a Parent-to-Parent Network (P2P) that connects parents across the nation. Resource organizations are listed in Chapter 10 (“Resources”) to connect you with groups that offer invaluable support, experience, and information.
