Portland Brain Tumor Walk

Joshua Tyler Truini, October 23, 2008 - July 9, 2010
Joshua Tyler Truini, October 23, 2008 - July 9, 2010

Team Little Bear

Eight years ago, Joshua "Little Bear" was diagnosed with a terrible brain tumor. They called this monster "Ependymoma".  He was just 8 months old. The tumor was massive and only 60% of it was operable. He later endured 11 surgeries, over a month in the ICU, 2 and a half months in the hospital, 15 weeks of chemotherapy, 33 rounds of radiation and more pain than most of us will experience in a lifetime.  When his surgeons removed the bulk of the tumor, he suffered some brain damage. He lost the ability to eat by mouth so he needed to be tube fed. He lost all of the skills he had acquired over the past 8 months.  He had to relearn everything and some things never happened. He never talked. He never walked.  When he finished his grueling treatments, it looked like the worst was behind him. Not more than a month after completing his radiation, a follow-up MRI revealed the tumor had spread. It grew far and fast. As it traveled down his spine, it began pinching off vital areas, causing immense pain, and he lost the ability to move his arms and legs. Eventually the tumor pressed down so hard, he was unable to breathe. He took his last breath on July 9, 2010. He was 20 months old. He fought a tremendous battle, somehow managing to smile and play wherever possible.  Our family mourns the loss of our amazing little boy, but at the same time, we are committed to raising awareness of brain tumors, promoting prevention, and finding a cure so that no more children will suffer from this unthinkable disease. 

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NBTS is fiercely committed to finding a cure for brain tumors. NBTS aggressively drives strategic research; advocates for public policies that meet the critical needs of the brain tumor community; and provides comprehensive patient, family, and caregiver resources.

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