Condition: Tumor on Brain Stem
City, State: WA
Club: Arthur Jacobsen Elementary Sparrow Club Service Hours: 256
Date Adopted: 6/04/2008
Mara's Story:(6/13/08) Mara is 6 years old. She has a brother, Max, a sister, Natalie, and a sister, Katrina. She just started kindergarten this year at Arthur Jacobsen Elementary School in Auburn, WA. Mara's parents started to notice some minor problems with Mara in September of 2007. She was drooling a bit at times, almost uncontrollably, and complained that her mouth hurt. Her speech was a little hard to understand at times (probably from the drooling) and she was a little more uncoordinated, falling down a lot more. She was also very emotional. They initially thought any or all of these were probably attributed to adjusting to a new schedule attending kindergarten, or maybe from cutting new molars. They finally agreed it made sense to have a doctor look at her to see if there was anything causing this. Their pediatrician didn't find anything, but referred them to a neurologist in Tacoma. On the 18th of October, Mara went to see the neurologist. The neurologist suggested certain tests, an EEG and an MRI. The EEG came back fine. She did great during the MRI. The neurologist proceeded to tell Mara's parents that Mara had a brain stem glioma, which is a brain tumor in the brain stem. It is also referred to as a diffuse intrusive pons glioma or DIPG. It is considered cancerous and malignant. It is not operable because of its location. The common treatments are radiotherapy and sometimes chemotherapy, however these have not proven to cure the tumor, but rather to help delay the symptoms. The succeeding days were met with numerous appointments with different oncologists to learn about the treatment options. Mara's parents decided to participate in a clinical trial through Children's Hospital in Seattle. The standard treatment would be radiation and then following that with some type of chemotherapy depending on how the radiation had worked. This clinical trial would combine the radiation treatments with a chemotherapy drug, capecitabine. The theory is that the chemotherapy drug will help make the radiation treatments more effective. Given the difficult prognosis with this type of brain tumor, there really aren't a lot of treatment options, and none of which have been proven effective long term. So, this clinical trial at least offered something that hasn't been proven not to work. Mara begun radiation treatments at the University of Washington Medical Center. She will be on the chemotherapy drug (with a few scattered breaks) throughout the radiation treatment period and for an additional roughly 14 weeks (for a total of 20 weeks). Currently, Mara's expressions of symptoms include increased weakness on her left side, difficulties with eating and continued eye concerns. Mara continues to be happy and pain-free.
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