BRANDON McCONNELL BRAUNS
March 14, 1999 - March 20, 2010
Brandon's
Celebration of Life
March
27, 2010
Program
Slide Show
(plug in
required)
Slide Show - low
bandwidth
(plug in
required)
Dad's Letter
Mom's Letter
Donations
(in lieu of flowers)
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:
Luke Duecy met Brandon
last summer.
Boy loses battle with brain cancer
WELCOME
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. |