It was such a wonderful thing. 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.
When visits are welcome, make them brief and cheerful. I know everyone was well meaning and genuinely cared, but the constant stream of people through the house and phone ringing added to the stress we were already under. We already had a home care nurse coming five days a week and a physical therapist coming three days a week in addition to constant phone calls to follow up on blood work and tests, appointments to schedule, and family members to keep track of. Bubba, our dog, loved all the commotion, but the rest of us tired quickly. Helpful things for family members to do Families differ in what is truly helpful for them.