Notifying the family

Notifying relatives is one of the first painful jobs for the parent of a child newly diagnosed with cancer. In times of crisis, family is refuge, and the news is usually quickly shared.

I called my mom and told her to make all the phone calls to family and friends. I couldn't choke out the word leukemia yet. Then I called our pastor.

I called my sister and asked her to take care of telling everyone. She called my other sister, and together they told my frail mother.

I waited three days after the diagnosis to call anyone. The doctors had trouble determining whether it was ALL or AML, and I wanted to be able to give the prognosis on the first call. I called my mom and asked her to notify everyone else but to request that they not call me for a week. I felt too fragile, and didn't want to continually cry in front of my daughter.

Paradoxically, the family members who potentially may provide the greatest support may also be sources of added stress. Some extended families and even entire communities rally around the stricken family, while support never materializes for others. Several factors affect the strength of support: well-established community ties, good communication within extended family, physical proximity to extended family, and clear exchange of information on the needs of the affected family. If any of these elements are missing, support may evaporate.

We had just moved three thousand miles away from family and friends for my husband to accept a new job. We had no family there, no friends. Each family member and some close friends used their vacations to fly out and take two-week shifts at our new house to help out. Thankfully, they got us through the first months, but the two stressful years of maintenance were lonely.

Other well-established families have support throughout treatment:

Shortly after Jesse relapsed, I was praying with my Bible study group. With four children ages 1 to 9, I just didn't know how we would manage with one parent 100 miles away at the hospital and one parent working. The group decided to collect enough money to allow my sister to quit her job and move in to take care of the other three children while I was at the hospital with Jesse. She stayed for eight months. It was such a wonderful thing. They didn't even ask us; they just said they would support her financially so that she could care for my children and keep the household running.

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