Brandon's Updates - 2004

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Last Updated: 05/07/09

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! 
 
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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
 

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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
 

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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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Wear Yellow :: Live Strong

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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


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Wear Yellow :: Live Strong

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6/10/2004
Brandon Update - June 10



Dear friends & family,

We've just realized that it's been almost two months since our last update. Glad to report that it's a case of no news is good news!

The last few months have been a reflective time as we have passed several 1-year milestones. April 27 was the day we left for Memphis a year ago, May 2nd was the day of Brandon's 2nd surgery, and his radiation therapy began on May 21.

Yesterday afternoon was Brandon's pre-kindergarten graduation ceremony at the Learning Garden. He received a diploma and told us that he wants to be a pilot when he grows up. Afterwards we went out for dinner to celebrate at Brandon's favorite restaurant.

The "men" went camping this weekend. Jeff & Brandon along with Dan Moore and his boys Jack and Ryan camped along Lake Cle Elem in the Wenatchee National Forest. The weather held out and managed to get by with only a few sprinkles. The campfire was the star attraction of the whole trip. The boys were kept busy gathering firewood and adding "just one more piece" of wood to the fire. We ate nearly the entire bag of marshmallows making smores. We had them after dinner and again after breakfast the next morning! Everyone had a great time and Brandon is looking forward to the next camping trip. Here's a link to some pictures from the trip:  http://brauns.smugmug.com/gallery/134575

Last week we had a Evaluation Team meeting at Brandon's new elementary school to prepare for any individual needs Brandon may have for the coming school year. The team was very supportive and offered any assistance Brandon might need in the fall when he starts kindergarten. The team included the school principal, nurse, language arts specialist, speech pathologist, psychologist, occupational therapist, and office manager. Brandon is very excited to begin kindergarten - he's been asking us "How many days until the first day of kindergarten." After being out of preschool for a week due to his virus, Brandon was concerned that he would get behind the rest of the class. We asked his teacher to prepare some homework for Brandon so that he could "catch up."

A few weeks ago Brandon had several fevers and we feared it was pneumonia. An x-ray confirmed that his chest was clear and that it was likely just a virus. After much discussion and support from the team at Children's we are encouraging Brandon to drink more liquids. We've been fairly conservative on this, concerned that he would aspirate and get a pneumonia. Last week he started having juice during snack time at preschool. He's happy to enjoy this added treat in his day.

Last month, Kris attended a brain tumor seminar at Children's. Afterwards she was able to spend time talking with one of the featured researchers discussing new less-toxic therapies.

There are additional photos on our family photo page including Brandon's preschool graduation and his 5th birthday party at his preschool :  www.brauns.smugmug.com/family

We are still so blessed and inspired by Brandon and all of you. He is a great kid and amazes us everyday. On top of that we have been blessed by an amazing family, our friends and strangers alike. We are still so moved when we look at old cards, read old e-mails and think of all that has been done for us in the past year. You all have forever made an impact in our lives and we will be forever grateful for all we have received.

Love, Jeff, Kris & Brandon

www.brandonsgoal.org


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4/23/2004
Brandon Update



Hi all, what a wonderful week Brandon had at NASA!
He was so excited and had a blast!  (no pun intended)

We arrived in Houston on Monday night the 12th.  Make-A-Wish had us in a neat hotel on Clear Lake just across the street from NASA.  Tuesday was his first day where we met Peter, a space shuttle flight simulator trainer.  He took us to Space Center Houston (the visitor center for the Johnson Space Center) where Brandon spent from 10:00am - 5:30pm cruising around, learning about space and playing!  He went non-stop all day and he and Peter had a wonderful time.  Wednesday Kris' dad Gary came over from San Antonio so we went to the nearby Kemah Boardwalk.  Amusement rides and lunch.  Once again the boy was at full tilt ALL DAY!

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.

Pictures from the trip are here:  http://brauns.smugmug.com/gallery/103366


Hope you're all well and enjoying this spring!

Kris, Jeff & Brandon

www.brandonsgoal.org


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4/7/2004
Brandon update!!!!! - 4/7

 

Well we could not be happier!
All is good on the MRI!!!
Brandon's tiny piece of residual left
after his second surgery just keeps getting smaller!!!!!!!!!!!!

Today I asked what the official measurement was from the Rad report and he said "it is too small to measure, only millimeters".

We are pretty thrilled to say the least! He is very happy with how Brandon is doing!!!

Brandon did so great having his first MRI without his port in for the IV. He was a little scared at first but was very brave!

After his MRI we drove to Chehalis. Kris' grandpa passed away on Monday so we went down to see her grandma. They had been married 66 years! He was 93 years old. A true testament to love, friendship and marriage. They raised 4 great kids and could not be better role models for all of us!

Go check out B's website again! New pics! Sign the guest book if you get a chance, he loves the e-mail!  www.brandonsgoal.org

We are off to Houston for Brandon's Make a Wish trip on the 12th, Brandon is super excited! Thanks for all of your support!

Kris


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4/4/2004
Brandon Update - 4/4 - MRI Tuesday / Make A Wish



Hi all, Brandon's next MRI is Tuesday morning. This is 14 months past his initial diagnosis and is his post 9-month MRI since ALL treatments officially ended.
Obviously getting the pre-MRI jitters but holding our own! We'll stress on Monday night and Tuesday by 1pm we hope and pray we get
the "All Stable" report and better yet continued shrinking!
Kris dreamt the other night that they came out and said the tiny post residual piece was gone! We celebrated, hugged, cried and partied!!! We know that is not
scientifically reasonable but we can still dream about it and hope for it!

Make-A-Wish threw Brandon his send off party today! Brandon's buddies Jack, Ryan, Mike and Will were with him and we were so happy they could celebrate this together! Kris, Jeff, Grammy, MJ and Shelly were all there too! We leave on the 12th for Houston so Brandon can meet the astronauts and learn more about the space program! We did not get the exact schedule yet, we will know more later this week! (Bumpa and Jason) He is so excited, we kept today a surprise and now that he knows it is only 7 days away until we leave he is pumped!

Other than that all is good! His friends Jack and Ryan had a sleepover here last night and they all had a ball! It is so nice to see him doing the things he was doing before he got sick. He's doing really well in school and is getting more back to the 5-year-old he should be. He spent a Saturday at the Moore's a few weeks ago. It was good for him to not have me hovering and good for me to let go of the reins a bit. Shelly of course had it under control and obliged my instructions she has heard 100 times!

Hoping all of you are well and enjoying spring!

Kris, Jeff & Brandon

www.brandonsgoal.org


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3/21/2004
How YOU Can Help Support Pediatric Brain Tumor Research



Hi all, did anyone catch the lead story in todays issue of Parade ?
It is about research and federal funding for it.  Neat article!  The poll they did listed cancer as the number one concern! But, as we all know Pediatric Brain Tumors is not high within that list.  We know the drug companies target the BIG cancers hoping for the most return in $$ for their efforts!  But, our kids deserve no less and are the future! The Parade Magazine Link is below.  I also added the Research America Link. A non-profit group working to generate more $$ for research.  At that link you can go to a quick form created by them to write to congress. I used their sample letter, added a paragraph about Brandon and my thoughts on PBT.   
  
"My son Brandon who is 5 years old is surviving a pediatric brain tumor. (PBT)  Due to the rare occurrence of PBTs there is only a shameful amount of funding awarded in this area.  Over 50% of these children die, this can be prevented!  Please support our plea to provide more funding for PBT.  Drug companies and researchers need to set aside their egos and also focus on this devastating disease.  The amount of people they could cure may nit be significant, but who they are is!  They are the future!"
 
TOGETHER we would be a   lot of voices!!
If you want to, take the time to do the same!  Wouldn't it be great to have congress receive hundreds of e-mails about the very smallamount of money that is awarded to research PBT?

Hope you all are having a good weekend,
Kris Brauns

http://archive.parade.com/2004/0321/0321_quiet_hero.html
www.researchamerica.org/advocacy/


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3/14/2004
Brandon Update - March 14



Hi all, hope you're well!

We just celebrated Brandon's 5th birthday!!  What an awesome weekend!  Last year for his 4th he was inpatient and on chemo, he wanted no part of a birthday party.  We tried, but he wasn't into it.  He said he would have one when he could eat out of his mouth again.  So 3 cakes and 3 parties later we are all ready to crash tonight!  Brandon had a ball! This was a great milestone for us.  Early last year there were moments when we did not expect to be where we are today.  But now we just celebrated his 5th, signed him up for kindergarten and feel so good!!

Brandon gets to do his Make A Wish trip next month.  He does not know the details yet, so SHHHHH! We had never really thought about this and then a friend of Mom's (Dianne) who is involved with it suggested we do it.  He feels good and can enjoy it!  We go to Houston for 5 days to visit NASA and hang with the astronauts.  We will fill you in when we know more!

We have pretty much switched over to this new diet.  All organic, dumped most sugars and as the Moore's kids say "eat bread with bird seed in it!" We got on the diet through a nutritionist that works with brain tumor patients.  Her track record is amazing.  On top of the healthy foods we do special vitamins and other herbal additions.  He will start on a concoction called Poly MVA soon too.  All natural but boosts the immune system and many swear by it. It is pricey but we will do anything and everything it takes.

Other than that all is well.  Happy the weather is warmer and looking forward to spring.  The bad memories from last year are fading but the ones of all of you, the support and love are stronger than ever.  I feel like in these e-mails we try to convey that to all of you but can never find the right words or appropriate way to say it.  You all have made a lasting impact in our lives.  Those memories, new friendships and deepened relationships mean the world to us.  We are obviously so thankful for having Brandon, words can't ever describe the feeling, but, all that you did has made us feel so loved.

Have a great day!
Love, Kris, Jeff and Brandon


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2/5/2004
Brandon Update 2/5/04



Hi all, we are back and happy!

Brandon had his MRI on Tuesday and the doctor said all was stable! We sat down and reviewed the scans the next day with Dr. Merchant and it was stable at the very least with major necrosis (post radiation scaring and inflammation) shrinking and even "hopefully" residual tumor shrinking.

The last few scans had shown a fair amount of enhancement from the radiation.  This one showed most of it gone with 2 little blips of tumor. The first little blip is very tiny, only 2 mm in size, it originally looked a bit bigger.  The second blip is about .8 of a centimeter.  This is good as we thought these two little blips used to be one piece of residual.  Again at the very least all is stable but when viewing the scans the news in encouraging!!!  YEAH and thank you GOD!

Brandon also had another psych eval and tested the same as last time, yeah again!  Sometimes radiation can cause cognitive deficits, but so far so good!

We met with the ENT doc and he is still encouraged that the vocal cord will come back.  We learned the left cord nerve is even longer than the right so he does not anticipate full return or a plateau of that for another year.

Had a ball seeing all of the docs, nurses and our friends.   We stayed with Julie and David and loved our time with them.  We got to see Mac, Mary and their 2 girls as well.

We had the nicest time with Michele, Brandon's favorite nurse, out at dinner the night before we left.  She truly made radiation for him pretty easy and has become a good friend as well!

Thanks for all of the prayers!
Kris & Jeff

www.brandonsgoal.org


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1/8/2004
Brandon Update - Swallow Study Results



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

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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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