Brandon's Updates

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

www.brandonsgoal.org

Friends Helping Friends 2nd Annual Golf Tournament - Saturday July 9th, 2005

10/23/2004
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!

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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.
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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

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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

Thursday was Brandon's behind the scenes tour of the NASA Johnson Space Center. WOWWWWWWWWWWWWWWWWWWWWWW!!!!! They took him to the pool where they train to simulate being weightless in space. He got to meet 2 astronauts going in as they were in their full suits. He then got to sit in the control room and talk to them! Next was Building 9N where the International Space Station and Space Shuttle training mockups are located. Brandon got to sit in the cockpit of the shuttle and walk in the space station. He met the neatest astronaut, Piers Sellers. What a wonderful man. He and Brandon hit it off and had a ball. He also got to sit in the Russian Soyuz capsule. Next stop was lunch! After lunch we toured the mission control center - very cool. We started in the historic Apollo flight control room and then saw the current space station and shuttle flight control rooms. We finished off the day with Brandon getting to taste test astronaut food.

What a neat experience. His contacts, Peter, Hazel and Donna were such neat people. Everyone really made him feel so special. He wowed them with his knowledge and Apollo 13 trivia! Jeff and I were beaming from ear to ear watching him.

For dinner we met Dianna, a mom Kris met on the Yahoo Pediatric Brain Tumor group that lives in Houston. Dianna's daughter Katharine is 22 months old and also has a brain tumor. Brandon had a great time playing with Katharine's older brother Nathaniel.

On Friday we took Brandon out in a ski boat and let him drive! We tooled around for an hour or so and had breakfast. Then our friends from Austin drove over for the day. Jason and Juliet (also 5) met us at the Houston children's museum. Brandon and Juliet had a great time. We then headed back out to Kemah for more rides and dinner.

Saturday we packed up and headed home!
Pretty awesome trip for Brandon, can't even put into words how it made Jeff and I feel.

Hi all, we had a swallow test today to see if Brandon would be cleared for liquids! He did awesome! After some adjustments with tilting his head to the right to get fluids down his stronger side he did well without aspiration!!!! We are so proud of him as he is pretty darn proud of himself too!

He is cleared to do as much as he feels comfortable doing each day! He is pretty aware of his limitations so he doesn't try to abuse or endanger himself. We will use a small straw, like a coffee stir stick, to help control the amount that goes into his mouth. We will only start with water or juice so if he does aspirate his lungs can clean those two things out rather well! His tummy tube will stay in for now so we can insure he stays hydrated.

We know that the cranial nerves repair only by millimeters per day. The vocal cord nerve is the longest so hopefully it will follow suit with the rest as they have all shown dramatic return in the last 4 months!

We are off to St. Jude on the 31st of this month to do an MRI, psych eval and other follow up appointments!

Hope you all are well! This is another milestone for him today!

Kris

www.brandonsgoal.org

1/5/2004
Brandon Update - January 5, 2004

Hi all, hope you are well!

It is 2004 and we wanted to give you an update from our final days of 2003. (Next MRI - Feb. 3rd at St. Jude)

Orlando was an absolute blast! Jeff and I said this was the best vacation ever! Just the 3 of us and full KID FUN! Brandon went crazy from 8am-10pm each day, only to rest when his head hit the pillow! We did just about everything at the Magic Kingdom. Brandon said "It is the most magical place ever". We even rode Splash Mtn and Thunder Mtn. Railroad! We also visited Kennedy Space Center and met an astronaut. Brandon was in heaven! On Sunday 12/21 Michelle Akers had the soccer clinic for over 200 kids to support Brandon. What an event!! We get there and they had a big card all of the kids signed, shirts with his name and the best staff of coaches. Michelle and her husband Steve along with co-workers, family and other coaches pulled off one awesome event! Brandon loved the event and even more so Michelle, her family and her animals. Brandon cried when we left and said he was really going to miss her and her animals! Another blessing in this crazy journey with this disease! We can't thank them enough!

Christmas and the New Year were very mellow and enjoyable. When Brandon woke up on Christmas morning I asked if Santa came, he looked down stairs and said "Oh yeah Baby!". We had a great night Christmas Eve at Grammy and Papas with the whole family. Grandma-T and Bumpa were up from TX. For New Years we stayed in with the Moores and Hornes, set off fireworks for the kids, drank good wine and tried to make it up till midnight!

Although we would love to go back and start this year over, I would not want to miss the blessings that have come along this path. With out all of you, your love and support we would not be the family we are today. This disease changed us, Brandon has changed us and taught us more than any education could, and you all have changed us. We are a better family, better people and very blessed. It seems crazy to say all of this but it is the way it is. So we end this year thankful to have it behind us but so blessed to take all of you, your support and love, the blessings and lessons with us into the future!

This past year was so full of so many emotions and things no child or parent should go through, but, at the same time we can talk for hours about the memories we do want to keep. Please read as you all are a part of this list....

Our Family - Immeasurable what you mean to Brandon and us! Children's - Dr. Geyer, Dr. Avellino, Cory, Erin, Tiffany, Liz, Marissa! Our friends - many we have know since grade school, your love completes our family circle!
CH2M HILL and Skyhawks - you all became family. Your support and selfless acts amaze us
Our colleagues - we know it was hard to pick up the slack, thanks you all rock!
FUNDRAISERS: CH2M HILL Family Donation Account, Learning Garden Spring Fest, Brandon's Cards, Bothell Florist Raffle, Friends Helping Friends Golf Tourney & Silent Auction, Michelle Akers & Friends Soccer Clinic, Brandon's Bash, Becky Bates-Shull Freemont Bake Sale, Bella Isola Mother's Day Brunch, Donations from family, friends and strangers...THANK YOU! ! ! St. Jude - Dr. Merchant, Dr. Boop and Dr. Sanford, Michelle, Cassandra, Sarah, Krisha! Memphis Friends - Sterlings, Grannans, Derwenskuses, Dee, Douglas's, Mac, Mary, Mimi and Ginny! Meals brought to our home - one less thing for us to have to do, thank you so much!
Brandon's buddies - your visits, cards, stickers and just "Hello"s made him feel so loved
Neighbors - thanks for looking out for us. We are lucky to be surrounded by such good people
Brandon's cousins - so heart warming to see such a warm and caring spirit
MAIL - all of you made his days. This would get Brandon off of the couch when he was too tired
Renee's Joke of the Day - you are awesome, he saves every one!
NEW Friends - how blessed are we to increase our circle of friends
Al Kovats (Uncle Al, AD Al) you really lifted Brandon and all of us up, thank you!

All of the above allowed us to focus on Brandon and basically put our lives on hold. The fundraisers helped pay for his treatment, get us to Memphis and allow Jeff and I to take the time off from work so all 3 of us could be together. I could not imagine us going through this split up.

We could never appropriately thank all of you for what you have done. Having been on the receiving end of so much love and support really overwhelmed us. It is humbling, moving, inspiring, but most of all every one of you played a part in Brandon getting to where he is today. I look back on this year and even the year prior and can see how God prepared us for Brandon's disease. So much fell into place to keep him strong, keep Jeff and I strong, and to make everything happen as it should. In the deepest of trenches, in those first few weeks we lost it many times, but back up the other side were all of you pulling us out.

The day of the surgery was bearable due to all of you. We had over 30 people there that day. You lifted Brandon and our family up and held us when we could not do it alone. So many of you stopped by, we remember every visit vividly. Becky coming by during work, Mitch, Bob W., we can't tell you how much it brightened our days. Yakima Bear, watching The Bachelor with Alicia and Renee, Teacher Terri, The Soccer Gals, Erika and Michael bringing dinner, Bauer and the Big Red Dog, The Youngs and Taco Time in the ICU waiting room, Juli driving down from Anacortes, Kyla and her picture, Mo's roast beef, The Howards just hanging out, Nanny Barb, the list goes on forever!!!!!!!

Then when our home felt so dark and sick you all found ways to make it brighter. Friday dinners with the Sanders were awesome, Jack and Ry-guy coming to play, Pizza and Beers with the Millers, Auntie Mags bringing the "Mail Box", Chip, Andy and Jay spending time with us, Grandma, Grandpa and Auntie Jen coming to play, again we remember it all!

Then when we headed to Memphis we felt so confident and ready to go because you all rallied to get us there! Calling airlines and friends in Memphis to get us ready, Dee finding us an apt., David and Julie becoming a second family, our family all being there for the surgery, Shelly Otto and Shelly Moore coming to be with us, Grandma T and Bumps hanging at the Apt., Grammy helping us to come home, we are one lucky family!

The list is quite large but we literally talked for hours about specific cards, visits, phone calls, gifts, fundraisers but most importantly just how loved we all feel. It took a tragedy to really bring this to a present light in our lives, we hope we can share and return all of this to you.

Happy New Year and much love,

The Brauns

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Click here for Brandon's 2005 Updates

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