A Cure From Caleb Society

About DIPG

Diffuse Intrinsic Pontine Glioma:

What is it?

: widely spread or scattered throughout
In-trin-sic : belonging to or lying within a given part
Pon-tine : of or pertaining to the pons - pons: a thick band of nerve fibres in the brainstem of humans and other mammals that links the brain stem to the cerebellum and the upper portions of the brain.  It is important in the reflex control of involuntary processes,including respiration and circulation.  All neural information transmitted between the spinal cord and the brain passes through the pons.
Gli-oma : A tumour that originates in glia cells of the brain or spinal cord.

DIPG is a disease that chooses only children.  It typically affects children between the ages of 5 and 9 but can happen to children at any age.  The tumour develops in the pons and effects the cranial nerves that make up the pons.  At diagnosis children often present with balance issues, difficulty swallowing, speaking or hearing, partial facial paralysis, irregular eye movements, inward turned eye, double vision, left or right side weakness.  A child may have one or several of these issues and the initial severity varies from child to child. 
At present there are no curative treatments.  Available treatment is refered to as a temporary band aid.  Standard treatment includes 6 weeks of daily radiation. Chemotherapy or anti-tumour medication is sometimes offered.  Surgical removal of the tumour is not an option, DIPG is not a typical mass, as explained above it is spreads throughout the pons, in and around the healthy tissue.  There is no way to remove the tumour cells without disrupting the important, life sustaining nerves that make up the pons.  A helpful way to understand this is to imagine trying to remove pepper from jello, without disturbing the jello.  Radiation is the only treatment that has proven to slow the growth of the tumour.  If a child response to radiation - not all do - they often experience a period of time where symptoms decrease or even disappear, this time period is refered to as a "Honeymoon Period".  It is a joyous and confusing time when a family feels hopeful but are constantly reminded by the professionals that this time will be short lived and the tumour will grow again.  The tumour is not gone, it is what they call stable.  A honeymoon period might last for three months to a year and then the tumour begins to grow again.  During progression the child's symptoms return and can become worse rather quickly.  The period of progression is extremely hard on a child - their bodies physically fail, often causing difficulties with walking, talking, swallowing and all involuntary function can be affected, such as heart rate, regulating body temperature, breathing etc.  A child's journey with DIPG varies and there is no set course the disease will take. DIPG is one of the most devastating of childhood cancers, the median survival is 9 months and over 90% will die within the first 18 months. There is no known cause of DIPG and there has not been a change to overall survival rates in more than 30 years.  Due to families donating tissue after a child has died, researchers finally have the ability to begin to understand the tumour, what it is made of and how to treat it.  This has launched the understanding of DIPG forward and it is more important then ever that we support these researchers in finding a cure. 

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