Make sure you are comparing apples with apples. At one time all brainstem gliomas were lumped together, however, they are no longer considered one entity. If you comparing other situations to your own make sure that they are truly similar. Other brainstem gliomas and other high grade gliomas elsewhere in the brain act differently than DIPG’s.
Start a file to handle finances. Become familiar with your medical benefits. Keep the EOB’s (explanation of benefits) sent to you and compare it to the bills you receive. Billing mistakes can happen so review the bills carefully.
Keep your own copy of medical records. Many parents get a 3 ring binder to keep copies of medical information such as pathology reports, MRI reports, clinical trial road maps, etc.
Obtain copies of your MRI. Many places can make a copy at the time the child of the scan. The parent can have this for their personal records and make copies as needed for second opinions.
Consider a second opinion. Some of the top pediatric brain tumor sites are associated with the Pediatric Brain Tumor Consortium. Many of these institutions will talk with parents without having to travel to that location.
Create a summary of your child’s history/treatment course. This can be useful in second opinions and in case of emergencies.
Connect with your hospital social worker. There may be various resources locally and nationally that can help (financial, school related, wish organizations, camps, books, etc).
Brothers and sisters can have a tough time too. There are a number of organizations that can be helpful. Check out SuperSibs!
Hospitals offer the clinical trials they are aware of. Often this might only be ones open at there hospital. There may be many other clinical trial options elsewhere. Parents can search for trials on their own at ClinicalTrials.gov
Access and search the medical literature yourself via PubMed
Become familiar with the good, the bad and the ugly of steroids. They are a two edged sword that most of our children with DIPG’s will be on at one time or another.
Make a website to help with communication with family/friends. 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. Two common sites are CaringBridge and CarePages
Last update July 2008