The Starfolio Toolkit: Pediatric Brain Tumor Resources for Newly Diagnosed Families
When your child is diagnosed with a brain tumor, your world stops.
Then immediately starts spinning again, now at high speed.
Hospitals, neuro-oncologists, MRIs, this treatment option, that treatment option. You are thrown into a whirlwind of terms you’ve never heard and decisions you never thought you’d make.
Your sick child and family are a priority during this overwhelming time. Having knowledge about the diagnosis, staying organized and feeling supported can help you in your decision-making.
The Pediatric Brain Tumor Foundation’s Starfolio was created to ease some of the chaos and confusion. In a portable, zip-up binder, the Starfolio’s goal is to give you one central place to keep everything organized.
Filled with crucial information, templates and tools, the Starfolio can help you on your child’s brain tumor journey. Convenient for you to take anywhere such as doctor appointments and hospital stays.
The Starfolio is broken into five sections. First, you will find words of encouragement from parents and children who have walked the path you are on now. They are there to remind you that you are not alone, that an entire community is out there to support you.
The Tip Sheets and Information Briefs sections are especially useful when your child is newly diagnosed. They provide information to build on, one step at a time, such as how to communicate with your healthcare team and how to help your child return to school.
The Templates and Tools section includes forms such as calendars, charts and logs that can be used to enhance communication with the healthcare team and to keep track of hospital stays and other key medical records. These templates include charts for tracking:
- doctor contact information
- medicine prescribed and taken
- tests and procedures performed
- health insurance claims
Finally, the Family Resources and Events section includes information about the PBTF’s free resources and signature events. Events like our family camps, Ride for Kids and Starry Night fundraisers and Meet the Experts are a great way to connect with other families that understand what you’re going through. The value of this type of support and connection is immeasurable.
The Starfolio is funded in part by Thea's Star of Hope, a nonprofit committed to improving the treatment experience for kids with brain tumors.
"When Thea was diagnosed nine years ago, we were lost and confused. We were trying to care for her needs in the midst of a crash course in neuro-oncology," says Thea's mom Trisha Danze (both pictured above). "If we had had a tool like the Starfolio to start educating ourselves and organizing her medical information, we could have focused more on her. We’re delighted to help the Pediatric Brain Tumor Foundation make this tool available to other parents so that this time is a little less overwhelming."