 Welcome to Endless web site is to provide you with updates on Devon's condition and our family's continued effort to find a cure for our Child and many other Children.
We want to increase awareness for the urgent need to fund research for pediatric low grade brain tumors. Devon’s Story, like thousands of other children who are diagnosed with Pediatric Low Grade Astrocytoma tumors (PLGA) each year, does not always have a happy ending because the treatment options and research for these kinds of tumors are very limited. We need to raise money for research and find a cure!
On October 12, 2007, our daughter Devon Sheehan (then age 7) was diagnosed with a type of brain tumor called a Juvenile Pilocytic Astrocytoma (JPA). This type of tumor falls under the broader category of Pediatric Low Grade Astrocytoma (PLGA). According to the PLGA foundation, Low Grade Tumors are the most common form of pediatric brain tumors; representing about 30% of all children’s brain tumors.
We went from looking forward to a Fall filled with activities, like pumpkin picking and Halloween, to one full of angst and anxiety. As difficult as the initial diagnosis was, finding out that research and treatment options for PLGA were outdated was deeply disappointing. We thought that there would be cutting edge technology, research and time tested treatment options available to help our daughter. We were wrong!
According to the PLGA Foundation, Brain tumors are the number one cause of cancer death in children and the number two overall cause of childhood death after accidents. While significant strides have been made in many forms of childhood cancer, pediatric low grade brain tumors have all been left behind. Treatment options for PLGAs are typically a combination of surgery, chemotherapy and radiation. They are considered outdated and highly toxic; often resulting in permanent neurological deficits and impairments.
Because we only have one treatment option available to us, we are allowing our daughter to be slowly poisoned with highly toxic chemicals, which indiscriminately attack her body and mind as much as her tumor. Sadly & based on commonly known information, the standard chemotherapy for PLGAs, which consists of a regimen of Carboplatin and Vincristine, hasn’t changed for nearly 25 years. Just as importantly, 70% of children who undergo this toxic regimen are likely to need further chemotherapy and/or radiation in an attempt to halt future tumor growth. As parents we find this unacceptable and hope you do as well.
How You Can Help
We have become part of a parent led, grass roots effort to fight for research for PLGAs; including forming the Pediatric Low Grade Astrocytoma Foundation, a non-profit 501c3 charity. This organization is dedicated to PLGA research with a goal of developing kinder, gentler and more effective treatments. In the last two years, families associated with the PLGA foundation have raised over $5.5mm and funded some major initiatives including the first and only Pediatric Low Grade Astrocytoma Program at the Dana-Farber Cancer Institute with a $2mm grant. See FAQ for more information.
We need to do more but we can’t do it without your help. We are in a race against time and the clock is ticking. Please help Devon and thousands of other children by making a donation to the PLGA foundation and/or by joining Team Devon in an upcoming event. Team Devon will be hosting multiple events this year. See "Events" for more information. Lastly, please share Devon’s story with your family and friends.
From our family to yours,
Sean, Banu, Devon & Paige Sheehan
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