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Resources from Lu
Rob and Lu felt lost when they found out their son Gabe had cancer. Their role in Gabe's life changed overnight. They were no longer able to just kiss him and make everything okay. Although their new role was uncharted territory they were determined to take on this role with every ounce of determination and strength they had.
This section of the disk includes information and documents that Rob and Lu created or found helpful as Gabe went through his treatment. Use as little or as much as you need. From one parent to another we hope this information can help make your life just a littler easier during this difficult time.
Start to Chart
In the Hospital
Many parents find it helpful to keep notes. By keeping notes you will remember to ask the medical team questions and keep up with important information. You might want to purchase a notebook or three-ring binder to store all your information in one place. Your notes can be as detailed or as simple as you like but either way they will guarantee to be helpful.
Hospital Schedule
Blood Count for Beginners
At Home
Keep useful phone numbers, your child's blood counts and medication list on hand for when you need to call the doctor. It may be helpful to keep this information on the fridge or by the phone. You might also consider laminating this sheet so you can reuse it over and over.
Emergency Sheet
Surviving Hospital Stays
Tips for Tots
Tips for Tweens
Tips for Teens
Set Up a Communication Chain
Keeping friends and family informed about your child's well-being can quickly become a lot of work. During hospital stays it is difficult to rest and you may not want to be disturbed by phone calls. It may be helpful to set up a central point of contact or location to keep concerned friends and family informed.
You can choose someone to keep informed and use them as a contact point. Ask all your friends to call that person instead of calling the hospital.
There are several Web sites that offer free Web sites designed especially to keep friends and family updated about your child's progress. Here are some that you might consider:
Caring Bridge
Care Pages
National Children's Cancer Society
Social and Emotional Needs
For Parents
Some communities have organizations to help families with their needs and provide support groups for parents. Here are a few:
Gilda's Club
Candlelighters
The Wellness Community
Cancer Care
For Kids
To find inspiration and support through the mail you can sign your child up to receive "happy mail" at the following sites.
Chemo Angels
Hugs and Hope
Make a Child Smile
Some children may need to find a sense of community to help navigate through their new world. Here a few sites that can help them understand that they are not alone and educate them about cancer.
I Had a Tumor
2 Be Me
Captain Chemo
Get Organized
Finances
For most families cancer treatment creates an enormous financial burden. If your hospital provides social workers talk to them first. They are used to helping families organize their finances. Social workers usually know of funds that can help you ease the burden. Here are some Web sites with grants you can apply for.
First Hand Foundation
National Children's Cancer Foundation
For help with insurance issues contact the Patient Advocate Foundation at 1-800-532-5274 or visit their Web site at www.patientadvocate.org.
Education
Cancer has its own vocabulary. Here are some Web sites that provide a glossary of terms for you to keep as a reference. If you decide to keep a three-ring binder, you may consider including a glossary in the binder along with your other documents. This way you can reference it when you don't have access to a computer or when you are in the hospital.
Curesearch
Association of Cancer Online Resources
National Cancer Institute
Candlelighters also offers free educational books for both adults and children to help during treatment and beyond.
For a free copy of a fantastic book on bone marrow and transplants called "Me and My Marrow"
e-mail lora.eastwood@us.astellas.com.
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