Biopsy should be performed by someone who has experience with the procedure. If a patient is critically ill and needs to start radiation quickly, a biopsy can also be performed after radiation. Biopsies are necessary to confirm the diagnosis and determine the specific DIPG subtype. Many trials require information form the biopsy or actual tissue for enrolment. Data generated from the tissue can be shared with other practitioners.

It’s important to start radiation quickly so as to preserve as much function as possible during the honeymoon period, or to improve functional loss before it’s permanent. For some children with less symptoms this may be less critical. There is no documented difference between proton and photon radiation for DIPG/DMG.

Learn the pros and cons of steroids early. Steroids should be weaned as quickly and safety as possible - when and how much depends on the clinical presentation and should be discussed with your doctor. Consider with you doctor whether it is necessary to start steroids proactively. Steroids don’t inhibit the tumour from progressing, they help alleviate symptoms caused by inflammation around the tumour.

Clinical trial availability varies, and not all trials are available in all geographical locations. Inclusion and exclusion criteria must be met before a patient can enrol. Some clinical trials start with radiation, but most start after radiation. Talk to your oncologist about your options, and seek a second option from other doctors and hospitals to see what is available. Additionally, search for clinical trials (include DIPG or DMG in your search criteria) conducted around the world here.

Clinical trails in Australia and New Zealand may be listed here.

Chad Tough’s My DIPG Navigator has nurses who can give you speedy information on trails in America.

It is highly recommended to get a second opinion from a different oncologist with experience in treating DIPG, as some doctors and hospitals may have different options to offer. You have a right to ask for a second option if you want to. Ask your doctor for the referral and to send any relevant medical information and results along.

Palliative care teams can really make your life much easier. These teams play a different role then classic hospice or end-of-life care for adults. Palliative care if often a helpful resource in the beginning to coordinate care and provide emotional support and can be activated while on therapy.