Delivery Options
Most patients have traditionally received chemotherapy either orally or intravenously. When these methods are used, the blood-brain barrier poses a significant obstacle to treatment. The blood-brain barrier protects the brain…
Immunotherapy
Immunotherapy is a treatment that uses the body’s own immune system to fight cancer cells. It has been established as a promising treatment strategy for some types of cancer, and…
Compassionate Use/Expanded Access
In searching for a clinical trial, there may be instances in which a patient will not be allowed to enroll due to an inclusion/exclusion requirement. If this happens there may…
Complementary & Alternative Medicines
Complementary and alternative medicines (CAMs) are the use of medications or other products that are not considered standard of care. CAMs may be considered for cancer patients to help decrease…
Where to Start
To help get you started in figuring out some of the most important first steps of your journey, Sabine Mueller, MD, PhD, with input from additional pediatric neuro-oncologists who specialize…
Sharing Data: How to Help Research
https://vimeo.com/gfac/journeyoftissue Frequently, families of patients with DIPG/DMG experience a sense of powerlessness. One way to help in this fight while navigating the disease is to share blood, saliva, cerebral spinal…
Palliative Care
Do not be alarmed if your treating facility offers palliative care shortly after diagnosis. Palliative care is another support system to use throughout your child’s journey and can help you…
Disease Progression
You may also hear the term pseudoprogression. Pseudoprogression is the appearance of a new or enlarged area of tumor growth that can be due to radiation, immunotherapy, or necrosis of…
Beyond Palliative Care
Families who have traveled this path before offer considerations to ease this portion of the journey as much as possible. As difficult as these topics are to consider and discuss…
Other Support
Supporting Links There are many other foundations that offer different types of support including financial, travel, and emotional. Learn More Help From Others Ideas on how others may be able…