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BRANDON McCONNELL BRAUNS March 14, 1999 - March 20, 2010
Brandon's
Celebration of Life
Slide Show
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Brandon's Obituary Notice (Seattle Times): www.legacy.com/obituaries/seattletimes/obituary.aspx?page=lifestory&pid=141101180
KOMO-TV's story about Brandon's passing:
Boy loses battle with brain cancer
This site is for Brandon and his friends and family. Thank you for visiting. This site was established to keep you updated on Brandon's treatment and progress in fighting his disease. We appreciate all of the support and love we have received since this all began. We wish we had the time to thank each of you personally, as we don't please let this note serve as a big hug and thank you from us! Love, Jeff, Kris and Brandon Brauns
About Brandon and his fight. On February 4th, 2003 Brandon was diagnosed with a mass at the back of his brain. We would later learn that the mass was an Ependymoma, a malignant brain tumor. He had surgery on February 10th at Children's Hospital in Seattle where Dr. Avellino was able to remove approximately 50% of the tumor. Brandon recovered well from the surgery and was able to leave the hospital without a shunt. However the surgery caused some deficits that caused him to be unable to safely swallow. For the next several months all of his feeding was done by an NG tube. After meeting with the Oncology team at Children's a treatment plan was established. Brandon would receive two cycles of chemotherapy followed by a possible second surgery and then radiation therapy. The first of two chemo cycles began on February 28, 2003. Following the 6 weeks of chemotherapy the tumor showed no response as far as shrinking. We felt at this time we needed to find an institution that had treated more childhood Ependymomas than any other. This led us to St. Jude Children's Research Hospital in Memphis, TN. They have treated over 90 in the last 5 years, being such a rare tumor that is 5 times as many as most institutions. Their success rate of kids not having their tumor recur after 4 years is above 85%!!! Brandon had his 2nd surgery on May 2nd in Memphis performed by Drs. Boop and Sanford to remove the remainder of his tumor. (there is still a tiny piece near his brain stem that was too risky to remove). Brandon then continued with 6 weeks of radiation that ended on 7/3/03. During that time he also had a "Mickey Button" put in his tummy to replace the bulky G-Tube! We flew home on the 4th of July! Once at home life has been good. There were some adjustments to make but it has been the best medicine! Please click here to see all updates of future and present since we returned home in July!! On August 18, 2005 after a follow-up MRI at St Jude we discovered that Brandon's tumor had recurred. After working closely with the doctors at both Seattle Children's and St Jude we determined that surgery followed by radiation was the best course of treatment for Brandon. This was a very difficult decision but one that we both believed would give Brandon the best chance for survival. Brandon had a third surgery on Wednesday, October 26 in Memphis by Drs. Boop and Sanford. The surgery was successful and they were able to remove all of the tumor except for some "smudges" along the brain stem and cranial nerves. Following surgery Brandon underwent radiation therapy to the full brain and spine. We returned home on December 15. Brandon did well and went back to school full-time. On December 17, 2007 a MRI at Seattle Children's showed that the tumor had recurred yet again. A decision was made to treat this local recurrence with Gamma Knife. Brandon underwent Gamma Knife treatment on December 28 at Harborview Medical Center in Seattle. This type of treatment is not available at St Jude. Brandon did quite well following this procedure. Unfortunately it was not even a year before the tumors returned yet again. We were caught off guard on September 15, 2008 when we took Brandon to the hospital for pain in the back of his head. They did a CT scan and detected a new mass in Brandon's brain. Brandon had another port placed along with an Ommaya reservoir so Brandon could participate in a Phase I trial (PBTC-019) using Intrathecal Topotecan. This treatment was horrible for Brandon and unfortunately it didn't work. On October 24 an MRI showed continued growth. We then started Brandon on oral Etoposide and opted to treat the areas of growth with Gamma Knife. Brandon had Gamma Knife treatment for the second time on November 4, 2008. A MRI scan in February 2009 showed areas of new growth. Brandon received Gamma Knife treatment on February 24, 2009. This treatment was extremely long (212 minutes) due to even more areas of enhancement detected during the treatment planning scan. In early March Brandon started on a chemo treatment that included Temodar, Irinotecan and Vincristine. Brandon tolerated these drugs ok - his counts didn't drop that much, but he had a lot of constipation and diarrhea. Following an incredible birthday surprise at Boeing, Brandon had a seizure while he was sleeping the morning after his birthday, on March 15, 2009. Brandon was unresponsive and was rushed to the ER where he was in the ICU for two days. Brandon was released on March 18 but wasn't the same. Ever since he has had decreased interest in things and increasingly had trouble making decisions. Brandon continued on the Temodar, Irinotecan and Vincristine until an MRI on August 31 showed a new tumor. We were able to get Brandon a spot on a Phase 1 Trail (PBTC-024) that we'd been following for a while. The Notch Inhibitor drug was not initially available in Seattle so we went to Cincinnati for the first cycle of treatment. We were hopeful that this new drug would work to stop the persistent tumor growth. We were given another blow on December 8, 2009 when the first MRI following the new notch inhibitor drug showed several areas of new growth. Brandon stopped the trial drug and we are now considering what to do next. Please see the updates page for the latest. |
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Last Updated 4/2/09
