Newly Diagnosed

Know Hospital Visitor Policies  

Know the hospital’s visiting hours and ask a friend or family member to coordinate visitors so everyone doesn’t show up at the same time. There may be rules about the age and number of people who can be in the room. Also, some gifts, like latex balloons and live plants or flowers, may not be allowed.

Carry Contact Information

Collect the names, phone numbers and/or emails of your child’s doctors, social worker, and other important team members. Keep them with you on your phone, computer, or a piece of paper so you’ll always have them with you when you’re at the hospital.

Carry a Medicine and Allergy List 

Create a list of your child’s drug and food allergies and prescriptions, and keep it with you.

Include the names of the medicines, even if they’re over-the-counter, the dose your child takes (how much and how often), and how long your child has been taking it. Make sure to list all allergies to foods, drugs, or environmental factors.

Keep Packed Bags Ready

Pack bags for you and your child, and keep them where you can find them if you need to go to the hospital in a hurry.

Ensure your bags have your insurance information, clothes (including socks), and comfort items for your child, like a blanket, lotion, and lip balm.

Pack favorite items for your child such as games, toys, books, magazines, stuffed animals, or a journal. A pillow or play mat may help comfort your child. You can also bring photos of family, friends, and pets to decorate the room.

Remember your phone and computer plus their chargers. Many hospitals have free wi-fi.

If your child has a port-a-cath, keep a tube of anesthetic cream (numbing cream) and bandages in your glove compartment in case your child needs to go to the hospital or clinic and the port will have to be accessed upon arrival.

Delegate Communications

Choose one person to help you stay in touch with your family and friends while you are at the hospital. Everyone will want to know what’s going on, and it can wear you out if you try to stay in touch with all of them yourself.  Choose one person to call, and let that person do the rest.

Some families like to use phone or email, and others use social media or a website like caringbridge.org that lets you post updates about your child.

Let People Help at Home 

Friends and family at home want to help. Let them! Make a list of errands, chores, and driving that you usually do for your family and share it with a friend who can take the lead in getting others organized to help. Other friends can sign up to help you through an online tool at Lotsahelpinghands.com.

Ask About Support Programs

Ask your child’s social worker about programs to support your family during hospital visits. The social worker can help you navigate resources available through the hospital as well as through outside foundations. For example, you might be able to get discounts on a place to stay, meals, or parking.

Talk to Kids Ahead of Time

Talk to your children about a planned hospital stay ahead of time and about what to expect if you have to go to the hospital in an emergency. Help them understand the reason for the stay and how you hope it will help.

You can ask a social worker or child life specialist to help you talk to your children in a way that’s right for their ages. Many parents and caregivers also find that age-appropriate videos can help. In the following video from the Pediatric Brain Tumor Foundation’s Imaginary Friend Society, Hank the hermit crab talks about long hospital stays and what to pack in a kid-friendly way.