Diffuse Intrinsic Pontine Glioma (DIPG)
A Diffuse Intrinsic Pontine Glioma (DIPG) is a tumor located in the pons (middle) of the brain stem. The brain stem is the bottom most portion of the brain, connecting the cerebrum with the spinal cord. The majority of brain stem tumors occur in the pons (middle brain stem) and are diffusely infiltrating, (they grow amidst the nerves), and therefore are not able to be surgically removed. Glioma is a general name for any tumor that arises from the supportive tissue called glia, which help keep the neurons, ("thinking cells") in place and functioning well. The brain stem contains all of the "wires" converging from the brain to the spinal cord as well as important structures involved in eye movements, face and throat muscle control and sensation.
Source: The American Brain Tumor Association
Source: The American Brain Tumor Association
The median overall survival of children diagnosed with DIPG is approximately 9 months. The 1 and 2 year survival rates are approximately 30% and less than 10%, respectively. These statistics make it one of the most devastating pediatric malignancies.
Source: Treatment of newly diagnosed diffuse brain stem gliomas in children - David N. Korones.
Source: Treatment of newly diagnosed diffuse brain stem gliomas in children - David N. Korones.
The standard treatment for DIPG is 6 weeks of radiation which often dramatically improves symptoms. Unfortunately, problems usually recur after 6 to 9 months, and progress rapidly.
Source: St Jude Childrens Research Hospital
Source: St Jude Childrens Research Hospital
In their quest for a cure, DIPG children must move from one experimental protocol to another enduring treatments with many side-effects which would be unacceptable with any other diagnosis. The cruelty of this disease cannot be denied. Sparing their cognitive abilities, DIPG slowly robs children of their motor functions resulting in partial paralysis, loss of voice and sight and finally ending with an inability to eat and breathe. It is both heart wrenching and painful as they are fully aware of their decline often until their last day. The cure starts now...
Source: The Cure Starts Now
Source: The Cure Starts Now
We currently DO NOT know what causes brain tumors. The major causes seem to be chromosomal and genetic abnormalities. Research so far has statistically proved very few instances of possible environmental causes for childhood cancer. The Children's Oncology Group (COG) continues to conduct epidemiology, cytogenetic, and microbiology studies in their quest for answers.
Funding for pediatric brain tumor research is critical since treatments discovered for adult brain tumors may not be appropriate for children. Pediatric cancer research has been important in understanding the basic biology of cancer, treating adults with cancer and providing principles of therapy and advances for other diseases of children and adults. For example, chemotherapy was first shown to be effective in curing children with cancer.
In recent years, the amount of funding for childhood cancer clinical research from the federal government has been declining. (we can change this!!!) We can make a difference. It breaks my heart that funding is very minimal for a monster that gives these kids a death sentence.
We as TEAM DYLAN FRICK will spread awareness and raise money for research. I can't express how thankful we are for each and everyone of you. Thank you again for you continued prayer, support, love, and financial support. It has blessed us with time that was priceless =) Thank you for being part of our journey.
Hey Jen, Its Melissa from Facebook (and Big Springs). I have a blog here too, so I followed yours :) I understand it must be hard to write about everything you are going through. I tried to have a journal, but I only write in it like once a month, or every 2 months, lol. Its supposed to be something to let you vent your emotions, but ironically, sometimes you feel too drained to write! Who knew? But I know that you are the kind of person who can make the most of whatever comes your way. And through this journey, I am sure that you will bring more attention to other children who are suffering, and more financial support to cure research. People like you will be the reason a cure comes along, and lives are saved. You, Dylan and the rest of your family have been taking part in a healing revolution much bigger than any of us individually-- one that scores of people in the future will be in debt to you for.
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