DIPG Blog, News, and Articles

DIPG Patient Database with the International DIPG/DMG Registry

Date
June 24, 2020
Data by itself offers us no clues to beating cancer. Even as a result of diligent collection from a research trial it offers little more than a confirmation of hypothesis. But what happens when data gets together? What happens when you collect data organically, across platforms and at the source? There you can detect patterns, form new theories and even cure cancer. It’s not a novel idea to collect data. For hundreds of years researchers fighting every known disease have assembled facts collect…

What is the Difference Between DIPG and DMG and what is the H3K27 Histone Mutation?

Date
June 17, 2020
DIPG (Diffuse Intrinsic Pontine Glioma) and DMG (Diffuse Midline Glioma) are often categorized together but can have different treatments that can lead to slightly different prognosis paths. Still, much of the science, the research, foundational funding and data for both types of brain tumors are grouped under DIPG, mainly because historically much of the work researching DIPG since around 2012 led to the reclassification and current definitions of DMG. DIPG is a type of brain tumor found in an…

Making Memories After Diagnosis

Date
April 8, 2020
Dealing with any brain cancer is never easy.  Often times it can be a battle between the clinical nature of treatments and quality of life as families struggle to adapt to the new norm.  As part of this struggle, it is customary to focus on making memories, whether facing a terminal diagnosis or not.  Even beyond creating memories, often these simple actions can provide an outlet both for children and parents that can take them “beyond the cancer” and even provide therapeutic or emotional stabil…

Communication: When a DIPG Child Can No Longer Speak

Date
April 1, 2020
Source
Understanding The Journey: A Parent’s Guide to DIPG
Content used with permission from the American Childhood Cancer Organization. Hoffman, Ruth, editor. Understanding The Journey: A Parent’s Guide to DIPG. American Childhood Cancer Organization, 2012. Print.Contributing Authors: David Brownstone, MSW, RSW, Caelyn Kaise, MHSc, SLP(C), Reg.CASLPO, Ceilidh Eaton Russell, CCLS, MSc (candidate) Supporting a child or teenager who has a brain tumor is an incredibly important and difficult job. And trying to help them understand and live with their chan…

Grieving Daily and How to Cope

Date
April 1, 2020
One parent’s personal journey to deal with the loss of your child from cancer. Losing a child is nothing you can prepare for.  Often you never want to admit it even after it happens.  I know, I’ve been there.  After losing our daughter to DIPG, our response was to form a community and over the years we’ve met many other families that have walked the same path as we do daily.  And while I don’t ever profess to have the solution to grieving, we have found ways to cope that many other families hav…