11/28/2004
Brandon Update - November 28
Hi all, we hope you're well and
had a wonderful holiday weekend!
All is good here. We had a great
Thanksgiving and are excited for the holiday season to be here.
All big events mean a bit more to us now, and Thanksgiving is no
exception. It revolves around a huge feast but each year we will not
let it go by without giving thanks for so many things; Brandon's health,
Children's Hospital, St. Jude,
our family, our friends and so much more!
This month St. Jude is hosting a HUGE fundraiser! From November 26th and through the holidays you can shop at many of your favorite stores and by doing so make a contribution to St. Jude. As easy as that! Go to http://thanksandgiving.yahoo.com/ for more information!!!
This picture below is of David Douglas, our friend from Memphis. Most of you know who he and his wife Julie are. They are the couple that took us in and who we now call family and who we stay with each time we go back to St. Jude. Well....David bought a $25 raffle ticket from their local Make A Wish Chapter. The raffle ticket gave you a chance to win the cool bike he is sitting on below, obviously he won!!!!! The Douglas' never cease to amaze us with their generosity, love, friendship and support. They have became our Memphis Family and make Brandon, Jeff and I feel so special. Not to mention they are really fun to hang out with!
Well, David amazed us again! He won the
bike, and then proceeded to donate it back so they could auction it off
and raise more money for Make A Wish! The bike got $17,000 from the
highest bidder. THANKS DAVID,
we are thankful for you and Julie!
(MORE BELOW THE PICTURE)
Other than that life is good! Brandon loves school, his teacher and new friends. He is doing really well and we could not be happier!
Hope you all had a great thanksgiving! We love you all and wish you a wonderful Holiday Season!
Love, Kris, Jeff and Brandon
Friends Helping Friends 2nd Annual Golf Tournament - Saturday July 9th, 2005
Brandon Update - October 23 - MRI Results
Hi all, hope you're well!
Brandon had his latest MRI this past Thursday and all is good!!!! The tiny
residual piece is still getting smaller, we can't wait for the MRI when it
can't be seen!!!
This MRI was supposed to be Nov. 9th, but we had it moved up due to some
neck pain Brandon is having. It alarmed us enough to call his docs and tell
them about it. They all felt it was Fibrosis from the 2 surgeries but
anytime a BT patient complains of back or neck pain you want to rule out a
metastasis to the spine.
They could rush him in a day later if he could do it without sedation, HE
DID GREAT! He was awake for the first 20 minutes and then fell asleep for
the last 20. Crazy he could sleep through that, MRI's are not quiet!
We apologize we were not able to let our family know ahead of time, it came
so fast and we did not want to worry anyone.
But, all is great and the next one will be Feb 2005 at St. Jude!
They think due to the surgeries his neck muscles have shortened and it is
causing pain. Massage and some PT should help.
Have a great weekend,
Kris, Jeff and Brandon
10/11/2004
Brandon Update - October 11
Hi everyone, we hope that you are all well!
Lots
to update on so here goes!!!!!
MAKE A WISH FOUNDATION GALA - Brandon was the Make A Wish child at this year's Wish Night Gala. The event theme was "The Sky's the Limit!" and matched up perfectly with Brandon's wish trip. What a memorable event for him and our family!!! We headed down to the Westin on Saturday afternoon to check into the hotel and run through a rehearsal of the evening. We would all be on stage that night so it was good for Brandon to get used to it! We headed down to the event at about 6:30. Brandon immediately started hanging out with Jill from the Make A Wish (MAW) foundation. Jeff and I looked at the auction items! We sat at a table with Jill, last years MAW child and her family and also had the Rinnes with us! The event began! Brandon and Jeff were in Tuxedos and Kris in a dress. They then showed the video they made about Brandon, it is awesome (links below). It is very moving and inspirational. Thanks to the crew at TRI Film for doing such wonderful work. It was then our turn to hit the stage. Brandon looked so handsome in his little tux! Kris gave a speech about Brandon and what the MAW foundation has done for our family. Then the MC of the night asked Brandon some questions! It was so neat. Jeff and I did not see much of Brandon for the next few hours as all of the ladies snatched him up! He was up on the stage a few times helping to auction off some items. He then played with the puppies that were there to be auctioned off as well. Two different families made bids on items and then gave them to Brandon, absolutely blew us away with their generosity. The night moved into the 11pm hour when the dancing started, Brandon was not quite ready to oblige the ladies with a dance. He hid from them under a table until we drug him out of there at 11:30pm. We met the neatest people, had a wonderful time and left their again inspired by the generosity of others. It felt so great to be part of an event where we could publicly thank MAW for what they did for Brandon!
(click below for a larger image) MAW Gala 1.jpg |
 MAW Gala 2.jpg |
 MAW Gala 3.jpg |
 MAW Gala 4.jpg |
 MAW Gala 5.jpg |
 MAW Gala 6.jpg |
VIDEO LINKS:
High Bandwidth (20.1
MB)
Low Bandwidth (2.3 MB)
TOUR OF HOPE RIDE - Not sure if you were aware of the Tour of Hope ride that Lance Armstrong and
his team just completed. The finished their ride across America on
Saturday in an effort to raise awareness for cancer research.
Elizabeth Sterling, a friend of ours from St. Jude who lost her child
Bennett to a Brain Tumor was on the team. She wrote Brandon's name on her
jersey so he could ride across America with her. We are very proud of
Elizabeth!
AMERICAN BRAIN TUMOR ASSOCIATION CONFERENCE - Jeff and I attended the Sharing Hope Brain Tumor Meeting in downtown Seattle at the beginning of October. It was very educational and a great way to bond with other families. We had dinner Saturday night with 3 adult Ependymoma patients. Is was inspiring to learn about their lives! We came away with more hope and optimism that there is a cure in the future!
MAKE A WISH SEAPLANE RIDE - Brandon was invited to attend the this event which established a new partnership between Seattle Hospitality, Kenmore Air , and the Make a Wish Foundation. Brandon along with Casey, another Wish Kid, boarded the seaplane for a 20 minute scenic flight over downtown Seattle and Lake Washington. Brandon was seated in the copilot's seat for the flight! (click for more pictures)
RIDE FOR KIDS - Brandon participated the
Ride for Kids, an
annual event held nationwide to support the
Pediatric Brain Tumor Foundation.
Brandon and Jeff rode along in the sidecar of Bonnie's GoldWing along with
hundreds of other motorcyclists who come out for this year's event. The
ride began at Marymoor Park and ended at Remlinger Farms. We were
fortunate to meet another St. Jude family from Portland. Their daughter Sara is
also an Ependymoma survivor and a patient of Dr. Merchant.
(click for more pictures)
KINDERGARTEN - Brandon is having a ball at Kindergarten. He started at Shelton View elementary on September 1st. Walking Brandon to school that morning was emotional for both of us as we reflected not only the milestone of starting "big kids" school, but more significantly on how far he has come in the past 19 months. His teacher Mrs. Whaley is wonderful and he is learning a ton. The first two weeks were challenging with the new schedule, etc. but he now in a routine and really looks forward to going each day! (click for more pictures)
BRANDON'S NEW CLUBHOUSE - Brandon was treated to a big surprise on a Saturday morning in August! Mike and Will Sanders wanted to give their clubhouse to Brandon! However, the clubhouse was located over 20 miles away in Snohomish. No problem thanks to the extremely generous crew from Puget Sound Energy. Jason's coworkers from PSE gave up their Saturday morning to make this special delivery happen. They used a crane to lift the clubhouse into our backyard. These guys are pros! The relocated clubhouse was setup in no time. Brandon was so excited to show his new clubhouse to all of his buddies. Next it was Jeff's turn to build a new set of stairs. Somehow Brandon got the idea that he wanted a spiral staircase to get up to his clubhouse so Jeff managed to get a half-set of spiral stairs constructed. (click for more pictures)
AUGUST ST. JUDE MRI - We can't remember if we relayed to you the addendum we received to the MRI results from August in Memphis. Brandon's Doctor was able to e-mail us the MRI pics and the little piece of tumor is once again smaller and in enhancing less brightly! Meaning the cells are dying! YEAHH!!
FRIENDS HELPING FRIENDS GOLF EVENT - just a reminder to save the date, JULY 9th, 2005. We are so excited to make this an annual event. More details later on how the funds will be used this next year! We are planning to have the registration available by early 2005.
Well, that is all! Brandon is doing really well and of course we are quite
proud!
Best to all of you,
Love,
Kris, Jeff and Brandon
www.brandonsgoal.org
(click below for a larger image)
 MAW Seaplane ride.jpg |
 Ride for Kids.jpg |
 first day.jpg |
 Clubhouse team.jpg |
 The Sanders & B.jpg |
 St Jude - Aug 04.jpg |
 Michelle & B.jpg |
 Memphis - Aug 04.jpg |
8/7/2004
Brandon Update - August 7
Dear friends & family,
Hi all, we hope you're well!
Sorry it has
been so long, as always, no news is good news!
Brandon is doing
great! He is having a wonderful summer!! Fun field trips at class
and playing with friends! He is out of pre-school now and can't wait to start
kindergarten in September! Last Wednesday was Brandon's last day at the Learning
Garden. He was sad earlier in the week thinking about his last day, but
was all geared up to go - taking his name down from the board and collecting the
last of his things on at the end of his last day. It was an emotional
trip down the hall saying good bye to all of the truly outstanding teachers and
staff. It was a teary time reflecting on all that has transpired and how
much support for Brandon came from the Learning Garden staff and families.
We agreed that it was not "good-bye" but rather "see-you later" as we promised
to be back soon to visit. Brandon finished his soccer season and had a
ball being on the Cheetahs team with his buddy Ryan Moore. They also went
to Minihawk this summer and tore it up on the soccer and baseball fields as well
as the basketball court!
We've been practicing riding the bike with no
training wheels. Brandon's still a bit unsure about the idea and is happy
to ride his scooter instead. Other summer fun included riding in the City
of Bothell 4th of July parade and getting his first library card.
Brandon
has participated in two Make-A-Wish events recently. Last week Brandon
made a sundae at Cold Stone Creamery
at their "World's Largest Ice Cream Cake
Social" Make-A-Wish fundraiser. This afternoon he attended a VIP event to
meet the Blue Angles! The weather wasn't cooperating so they angles were
not able to fly, but this gave the kids more time to meet the pilots!
Brandon had a great time, however it was a tough choice between watching the
planes and splashing in the puddles.
We head back to St. Jude this Sunday
for his next MRI and various appointments. This one has us a bit more
nervous as we are now in the post 1-year mark. It seems that most tumors
that come back do so in year 1-2. We are still praying and confident his won't
come back. And although that can happen we just want to cruise through
this next year with nothing. If we can get past this one we will feel much
better. We don't want Brandon to ever have to go through that again.
He is finally really back to as normal as he can get! During our visit
next week he will get his tummy tube out now that he does not need it. It
is the last visual reminder of this all!
A story we want to share:
A friend of ours passed away
from a tumor earlier in July. We met Bob Worden
through our friends Sunny and Mitch. And although we did not see him much,
when we did it was great to be around him. Very fun and full of life! He
was diagnosed just after the new year in February. From the beginning it
was not a good prognosis but when the doc said he had a chance then Bob said
"all I needed to hear was at least 1%". He was amazing in his fight and
through the updates from Sunny and Mitch and the brief visits we had, he
reminded us all why it is so important to live, be strong and love. We
were so moved by the updates and stories. So inspiring was what Sunny and
Mitch shared about the time with their friend and how in the face of this
disease they were able to say and do the things to each other and with each
other that we should all take more time to say and do. In the 6 months
that Bob fought his cancer he made an impact on more people than he would ever
know. More overwhelming than anything was hearing about the tireless and
selfless love and support he received from his friend Nicole. Jeff and I
were so moved when hearing about how she took care of him and what she did for
him. A human being should be so blessed. And through that we have
shared this story with many and hope it spreads the lesson of living now as each
day is a gift, don't ever take for granted you will be given the time to do it
tomorrow or say it later, because those tomorrows or laters don't come for us
all. Our hearts break for Sunny and Mitch, Nicole, Gom, Bob's family and
so many more. He is a man that will so greatly and desperately be missed,
but what he left for all of us is a gift many don't get.
We wanted to
share that with you as it meant so much to Jeff and I.
We will be off to
SJ on the 8th and home the 12th, we will get an update out that day! Prayers for
Brandon please.
Take care, hope you all are having a great summer, we
are!
Love,
Kris, Jeff and Brandon
www.brandonsgoal.org
