Our board has approved the first family to receive funding under the Noah’s GIFTS program. If you aren’t yet familiar with this initiative, it helps families pay for travel related expenses when their child is undergoing treatment. Our first family that started on the program is from Kansas, where little Angel needed to travel about 2 ½ hours each way for his treatments. Angel is only 3 years old and has Anaplastic Ependymoma. It is more common for children than adults, but this type of tumor can occur at any age. For more information about this program, please contact Brenda Barron at firstname.lastname@example.org. You can also visit the link to know more about Noah's GIFTS http://www.noahslight.com/the-new-light-a-note-from-amber/
Our Inspiration this month!
Our Board of Directors have decided to dedicate every board meeting to a person who has a brain tumor or who has passed away because of a brain tumor. This helps us keep our focus on the patient first, and it has proven very inspirational for us so far. With the permission of the family, I’d like to share a little bit about this month’s inspiration, Derek Damhorst.
Derek’s mom is an active member in a caregiver group, and she happened to mention that he was diagnosed on 9/11. For many people reading this, that is a day that “the world stopped turning”. Even though Derek’s diagnosis came a few years after the initial attack, it was still a very emotional day to receive that kind of news. (Not that there is ever a good time.)
Derek’s mom recalls, “ My husband called me at work and started crying” telling her that Derek had a brain tumor. Derek’s sense of humor didn’t fail him, though, and when his mom arrived at the hospital, he used his best Arnold Schwarzenegger voice to tell her, “I have a tumah”. She and Derek had a good laugh at that, but she says her husband and the doctor both thought they were crazy. But Derek’s journey began like that, with laughter amid the fear.
His diagnosis was Anaplastic Ependymoma. (Derek was 31, but yes, that is the same disease you read about little Angel having in the other story in this newsletter.) Derek had chemo, radiation, and a gamma knife procedure, but a year later the tumor was back. All in all, Derek survived for almost 3 years. He told his mother, “I’m ok with this, Mom. I just want you to be ok.” He died peacefully on August 23, 2010.
We are thankful to Rita Damhorst and family for sharing Derek’s story with us.