What can you do to help?
Javon is a sweet 6-year old little boy who loves to play sports. On October 2nd, his mom Fawn Dussault, noticed some irregularities with his leg movement. Two days later he was rushed to Dornbecker Children’s Hospital in Portland. On October 5th, Javon was diagnosed with a rare childhood brain stem cancer, Diffuse Intrinsic Pontine Glioma (DIPG).
One week after his diagnosis, Javon was accepted into a clinical trail at St. Jude Children’s Research Hospital in Memphis, TN. He is currently having trouble with his eyesight and is also having a difficult time walking since the part of the brain that controls all bodily movement is being affected by the tumor.
He began radiation and chemo treatment last week to reduce the size of the tumor, which will help reduce the symptoms he is experiencing.
We need to raise money for medical expenses and so that Javon can also have on fun experiences during the treatment and immediately following (football games, Disneyland) as well as funding the travel arrangements needed to return from home and from Memphis and spend time in California. We desperately need your help!!
This situation is unimaginable and we are doing our best to stay strong for Javon. We appreciate anyone who can help us in this difficult time.
Currently there is a fundraiser at Papa's pizza on the 22nd of November at the West 11th location.
We also have a non-profit bank account set up for direct donations at Key Bank under the Javon Simmons and Fawn Dussault.
Facts about DIPG
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 cannot 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.