Spreading Awareness

I research, copy, paste, cry, pray, and pray some more. So many sweet innocent children suffering with sickness. Please pray for so many hurting families. Our heart breaks for them as well as for ourselves. I had no idea how many children suffered from cancer. Cancer really sucks.

The only thing I can do is spread awareness, and Let people know about childhood cancer. It can effect any child at anytime for no reason at all. Scary stuff we know.

I feel so helpless. The helpless feeling seems to get worse every day. Daily Dylan gets worse. Today was his last trip over the Forrest Mountain. The bumps, light, and getting in and out of the car is just to much.. He is eating less and less. He is on oxygen more and more. His pain is getting unbearable. So we take the best care of him and pray. Watching our sweet precious child slip away day by day is something I can't even explain with words. Continue to give us strength Lord God.

I also research like crazy. Not researching for the "miracle cure" but researching what is being done to find cures , and what kind of funding do they have for curing childhood cancer. He was able to complete 4 radiation treatments but the outcome wasn't good. So we went with quality of quantity. When we left LPCH she gave him very little time. Praying that someday parents won't have to make those kind of choices. This is information about the brain cancer that Dylan has.

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

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.

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

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

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.

This is just the beginning. 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 is priceless =) Thank you for being part of our journey.