For many parents of with children battling brain tumors, one of the biggest challenges in helping manage the medical care for the child is knowing what records to keep, how and how much. Experienced pediatric brain cancer families have shared the Top 10 Most Helpful Hints for Managing Your Child’s Brain Tumor Care:
10. Connect with your hospital social worker who may be able to help you with a wide variety of resources (financial, school related, wish organizations, camps,books, etc).
9. Siblings can have a difficult time too.There are a number of great organizations that provide support to siblings of cancer/brain tumor patients.
8. Create a ‘summary’ document of your child’s treatment course. This will be useful for second opinions andin case of emergency. Be sure to include extra lined notebook paper in order totake dated detailed notes at each doctor appointment andmeeting.
7. Ask for and keep copies of ALL MRIs, scans and pathology reports (digital, which individuals can copy themselves,or hard copy).
6. If possible, ask for your child to be evaluatedfor psychological, intellectual, gross motor and fine motor skills BEFORE starting any treatments.
5. Realize that hospitals often report primarily the clinical trial options available at their hospital.There may, however, be many other clinical trial options elsewhere.Parents are encouraged to search for other clinical trials themselves.
4. Access and search the medical literature yourself through Pub Med.
3. Consider a second opinion (and perhaps a 3rd) before proceeding with treatment.Some of the top national institutions for pediatric brain tumors are associated with the Pediatric Brain Tumor Consortium.
2. Create a website for your child that enables you to post frequent updates for family and friends. Be sure to tell people the URL. This will minimize the need to explain the same things multiple times and enable you to find the support you need from those who care most.
1. To feel less alone, connect with other parents who have children are struggling with various forms of children’s brain tumors through the Low Grade Glioma List Serve and/or other online support networks.