About 15 months ago I went on Facebook to see if a friend of mine, who lives in Raleigh, had a Facebook page. When I typed in her name, I was taken to a link to a prayer group for Ella Newmiller. Now I knew that Ella was my friend’s daughter (we do exchange holiday cards) and quite frankly, I was in shock. Ella, now 6, was diagnosed at the end of April 2008 with a DIPG (diffuse intrinsic pontine glioma), or brain-stem tumor. DIPG is a rare form of cancer (approximately 200 children per year are diagnosed with the disease), which sits in the brain stem, or pons region of the brain. Essentially every major function within the human body (with the exception of smell) must pass through the pons (e.g. consciousness, sight, the ability to swallow etc). The trouble with DIPG is that it is inoperable and for the most part, untreatable. The diagnosis remains grim. Approximately 90% of children diagnosed with the disease do not live longer than 18 months.
And Ella Newmiller is a lucky one as she is 15 months out from diagnosis and remains in excellent health living a seemingly normal life as her tumor has stabilized. In my spare time, I found myself reading up on the disease, shocked to learn that the basic treatments for this disease have not changed in literally 30 years. Essentially, the patient receives steroids to reduce swelling, typically followed up with radiation. And though radiation has been found to be helpful in reducing the size of the tumor, it typically provides a 3-9 month respite before the tumor comes raging back, snatching the life of whoever has this disease.
I was shocked to learn that the treatments had not changed for 30 years. It almost seems inconceivable. But what I learned from Dr. Loice Swisher, an MD and advisor to Just One More Day an advocacy/research/support network for families facing DIPG and who also has a daughter that had a brain tumor, is that it is difficult to gather tissue samples At this time, tissue can only be obtained by autopsy donation (which is best if gathered within 6 hours of the time of death).
It’s both the imaging and treatment side of things where rare earths play a big role. Because DIPGs are inoperable and typically not biopsied because of the risk involved, they are both difficult to see and difficult to treat. The difficult to see part involves a number of imaging studies that rely upon MRI, and advanced systems and technologies, led by the NIH. The leading expert in this field is Dr. Kathy Warren whom some believe sees 20-30% of all children diagnosed with this disease. Unlike other tumors that are responsive to chemotherapies taken orally or intravenously, the blood-brain barrier limits the efficacy of these delivery methods for DIPG. The NIH, however, leads up a new area of research using rare earth metal gadolinium to aid in what is called CED (Convection Enhanced Delivery) or actual drug therapy delivered directly to the tumor.
According to Dr. Russell Lonser, who is the leading researcher at the NIH involved in CED, the gadolinium compounds with the chemotherapeutic agent. At that point, they start the infusion and use MR imaging to ensure the drug is delivered in a very precise manner. By imaging this process, researchers can closely track drug delivery, view safety implications to determine drug efficacy and perhaps most important in DIPG cases, make sure the drug is delivered to the actual tumor site. Some describe DIPG tumors as sand in a bed of grass, making imaging an extremely important function.
In a follow-up post we’ll discuss this particular research in greater detail and the role of rare earth metals in other medical research studies.