Staying in touch

The most important first step for families is to set up clear communication over what truly will help. Sometimes, the child is too sick or too fatigued for company, and this needs to be expressed. Establishing a telephone chain is a good way to keep family informed of the child's progress. One family member can be delegated as communicator, and this person will relay the information to another person who will then phone another. Some families leave updates on their telephone answering machines. Some send out form letters or emails. Others ask a friend or family member to be the social director. This person can spread the word about your situation and prevent many phone calls. He or she can also organize the many people who want to help but don't know what to do.

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