About DIPG (Diffuse Intrinsic Pontine Glioma)
Diffuse Intrinsic Pontine Glioma (DIPG) are highly aggressive brain tumors affecting roughly 300 children each year. These children most commonly range in age from 5 to 9. DIPG’s are uncommon in adults, but in children they are the leading cause of deaths from brain tumors.
DIPG’s are found in the area of the brain most commonly known as the pons. The pons control many essential bodily functions, such as breathing, blood pressure, and heart rate. DIPG’s grow quickly, meaning that symptoms appear suddenly and progress rapidly. These symptoms include decreased control over eye movements, facial expressions, and speech, as well as weakness in the limbs, and problems walking or with coordination.
Due to the location of DIPG’s complete surgical removal in not a viable treatment option. Surgery in this part of the brain often cause severe neurological damage resulting in the loss of vital functions, like movement.
Chemotherapy is rarely affective; chemotherapy drugs are incapable of passing through the blood-brain barrier and reaching the tumor. The blood brain barrier evolved as a life saving defense. It’s intended purpose is to prevent harmful toxins and bacteria from entering one of our most vital organs. However, in this case it creates a major dilemma in treating Riley’s tumor.
Currently, radiation is the primary treatment for DIPG. Radiation uses X-rays to help shrink the tumor, reducing pressure on the brain. This treatment method helps to alleviate the major symptoms and even extend life. Unfortunately, DIPG does recur quickly, and repeated radiation treatments are not tolerated well by the body.
There are a couple of clinical trails and experimental treatments for DIPG. One potential new treatment still in trial involves injecting anti-cancer drugs directly into the tumor. This avoids compromising the delicate brain stem and it bypasses the blood-brain barrier.
The second newly discovered treatment called proton therapy could help alleviate Riley’s symptoms in a way similar to radiation. Proton therapy works by aiming high energy protons directly toward the tumor. Once the protons enter the body, they deposit their energy in to the tumor. Due to the level of precision allowed by proton therapy no excess radiation passes through the body. Without excess radiation passing through Riley’s body he is likely to feel very few side effects if treated in this way. For this reason proton therapy is becoming an increasingly popular method for treating pediatric patients.
At this time, we are most heavily considering a trial using immunotherapy at Heidelberg University Hospital in Germany. This process uses proton and carbon ion radiotherapy, and is one of the most successful DIPG treatment programs to date. This treatment option is extremely expensive, and therefore we will need to raise every dollar we possibly can in order to help the Voss family reach Germany for Riley's treatment.