Brandon's Updates - 2003

Dear friends,

Kris was interviewed by KIRO TV today and should be appearing on the 5:00 News tonight on Channel 7. (A breaking story may postpoine the airing.)

This type of coverage is great and will hopefully put pressure on Group Health to cover Brandon's surgical bills.

I hope you're all having a great Summer.

Love
Shelley Young

Hello All -

Just wanted to send a thank you message out and report our results for the Friends Helping Friends Golf/Auction/Dinner Fundraiser for the Brauns Family. It was a tremendous success and we more than doubled our original goal! (And, it was a lot of fun too!) This is thanks to each and every person who contributed in one way or another. We should all be very proud of this amazing group effort!!

So again, a HUGE thank you to everyone involved.
And please forward this on to anyone who participated that we do not have an email address for.

Sincerely, Friends Helping Friends

Hi all, we want to share some news and meant to do this at the golf event. What an amazing evening.  All of our family and friends were there, new friends at that too.  We feel so loved by the support everyone is giving Brandon.  "Friends Helping Friends" raised over $35,000 for our family, we were blown away!  Considering our fight with Group Health this is another blessing!

We received a letter from Doctor Merchant from St. Jude because he is(our hero, along with Brandon!) reviewing Brandon's case for our insurance appeal. (we still have a bill of $90,000 Group Health has denied to pay, we are at out last appeal). Anyway, in there he states Brandon's prognosis:

        "His expected 3 year event-free survival is estimated
         to be 80% which compares favorably to results previously
         reported using surgery and radiation therapy
         as administered in the past".

Wow, those were words I have wanted to hear but were too afraid to ask.  SO when we said last night we were in a way better place today versus April this is why!

Many of you have asked questions about how all of this began, so we will catch all up to date as many of you got on our e-mails mid way through.

In Dec of 2002 we began to notice Brandon had alot of headaches.  Then in Jan of 2003 he had a few weeks where he would get up with a headache and vomit in the morning.  This got worse as the month went on.  We took him to the pediatrician twice leaving with the thought he had a virus, and as I was leaving the second visit the doctor said "worse case this could be a tumor". It went in one and out the other because no way that could be. Then on 2/4/03 Brandon vomited most of the day.  We called his pediatrician and he sent us straight to Group Health ER.  A few hours later we were driving home knowing he had a mass at the back of his brain.  We were called that night at 9:30pm being told he had a tumor.  That night is crystal clear in my memory although I was in such shock it really didn't seem real.

The next day he got an MRI and we were told it was in a very hard part of the brain to operate and the surgery would be tricky.  Then on 2/10/03 they operated on him for 12 hours.  Longest day of my life.  Surrounded by 30 people that day we were held up waiting for Brandon to come to the ICU.  He did well and the doctors were happy because they got approx. 50% out.  The next day they met about B at tumor board and found out the tumor was an Ependymoma, a rare tumor for kids.  It was nasty and bloody and we did not feel hopeful.

The docs wanted to put Brandon on two 3-week cycles of chemotherapy to try and shrink the tumor or make it more amenable to resection for a 2nd surgery.  The chemo was very hard, he did ok but we were in the hospital alot with fevers since his immune system was knocked out. At the end of 6-weeks (beginning of April) the tumor did not shrink.  At this point we were told he would not survive without a second surgery but that the docs at children did not feel they could remove it without cutting the cranial nerves, this could leave Brandon devastated.  We love and trust the docs so much at children's that it was hard to hear this.  But at this point you will do anything to save your child.

So we researched the heck out of Epdnymomas and found out that St. Jude in TN had treated 88 Ependymomas since 1997 very successfully.  We had them review Brandon's MRI's and medical records.  They called and said "pretty straight-forward case and we can most likely get it out!!!!"  We were in shock to say the least!  We even asked my uncle Chuck to call to make sure we had heard this all right.  So off to Memphis we went on 4/28/03.  We headed out there without word back from Group Health for insurance but again you will do anything. On 5/2/03 they got out the rest!  The surgeon came in and said "Tumor's out".  Again in shock.  The next morning they did an MRI and it showed a piece 5mmx3mm big.  We were bummed they missed it but it was hidden next to a major artery.  But considering his original tumor was 39x38x30mm we feel so lucky.  They talked about going back in a third time but as this point it was considered a near total resection and that is still very good!!!! Brandon recovered very well, faster than the first time. He went through the 6 1/2 weeks of radiation and now we are home!!

We go back the last week in Sept for his first post-treatment MRI.  We will also get back on with the doctors at Children's.  Although all of these scans will put us through the ringer every 4 months for this first year we feel so blessed and lucky.  God answered our prayers with 2 very good hospitals and teams of Doctors.

Brandon still can't eat but he is getting closer.  They docs at St. Jude hope by Sept he will be able to start eating some limited foods!

So now that we finally have a breather for the next 3 months we are getting back to some normalcy.  Jeff is back to CH2 full time and I have eased back into my summer Skyhawks schedule, both of our companies continue to be so amazing and supportive.

So that is the update of the day!  I think we will get one out once a week and obviously the closer we get to September they will increase.  Also, we have had a website in the works for a while, the address is www.brandonsgoal.org  We hope to soon add some photos as well as all of the updates we have sent.

Hope you are all well and having a great summer!
We are planning a little party for August to celebrate Brandon!  Keep an eye out for a date! Love to you all, Kris, Jeff and Brandon

Hi all, it is Sunday evening and we just got home from the "Friends Helping Friends" golf event. We are so blown away! In 1 day we were shown more love, support and friendship to last a lifetime. We are so blessed to have the family and friends that we do, people that have been in our corner helping us to make it through this.

Today we were surrounded by our family, friends, new friends, and friends we have not seen in years. People that took time to support Brandon and our family. It is an amazing feeling to be a part of something like this, it is a feeling that will never go away.

Such a special thanks to everyone there today, support from afar and especially to Shell and Mark, Sunny and Mitch and Mike and Traci. When you have people do what those friends did for us you are filled up with love for life.

Love,
Kris, Jeff and Brandon

WE ARE HOME (my explanation point key broke in the box)

Feels so awesome. Mom and Dad and Don and Mo picked us up. We were so excited to get home and see Rudy. He was pretty excited and has not left our sides since we got here.

It was cute watching Brandon walk around the house like he had never seen any of his things. Another blessing in disguise because all of his toys will seem new.

We are headed to Dan and Shelly's for our annual 4th of July BBQ. Brandon is excited to see his buds.

On the plane he kept saying how he was going to miss Memphis, St. Judes and all of his new friends. Crazy enough they are all adults and Ryan Grannan. He was pretty sad, but he snapped out of it when the captain said welcome to Seattle, he grabbed my arm and with a big smile said "we're home". He got to go to the cockpit of the 757 we were on. He told them about Reid and FedEx.

Sunday we have a big party at mom and dads. Tomorrow I feel like nesting. Out house is a total cluttered mess. We left so fast that we realized when we got home we had left it in children's hospital mode.

I am sure we will be here all day Saturday and would love to see you if you have the time. Give us a holler.

Love to all,
Kris, Jeff and Brandon

Hi all, last transmission from Memphis!
We are so psyched to come home, can't wait to see everyone!

Last night while Jeff ran into the store Bandon was naming all of the people he wanted to see. Rudy our dog was #1 on the list!

Another cute Brandon quote: When we were talking tonight about who he was excited to see when we get home he said out of the blue "I bet Reid my FedEx friend is sleeping! The moon is out so I am sure he is in bed". To me that showed what an impression Reid made on Brandon. All of these folks did. We dealt with a few tears last night when we said goodbye to David and Julie, all 3 of us did!

We have had a great week! Last day of radiation, seeing all of our new friends before we go, last trip to the children's museum with Grammy and water fights with the St. Jude staff!

We had dinner last night over at David and Julies with Heidi, Mac and Mary and Mimi and Ginny. These are new friends of ours that we will dearly miss. Jeff and I commented about another one of the blessings we have found in all of this. We are all VERY busy people. We go about our lives and sometimes do not take the time to notice each other. Well in this situation you make friends very fast! Our new friends from St. Jude, David and Julie, Mac and Mary, Heidi, Dee and Reid and Lori. In a very short time we feel we have known these people for years. We knew time was short and didn't let that stand in the way. Our circumstances for meeting were not preferred but we feel so lucky to have met these folks.

Mac and Mary have the sweetest little girls, Mimi and Ginny. Brandon is in love! They had a great time last night and he said he will miss them!

It was hard to say goodbye to our friends with kids at St. Jude. We have met many and will pray for them every night. If you can put them on your list too we would be grateful. Kaylie, Bennet, Matthew, Emmaline and many more. We learned a lot from Elizabeth and John, Christine and Sandy and Kurt, we are thankful.

Today was our last day of radiation. The staff had balloons and a "RADically Changed" T-shirt for him! He was pretty psyched! Rode his bike right in there while hooked up to his IV and hopped up on the table! We got to spend some extra time with his girlfriend, Nurse Michelle. I am getting teary just writing this. She is awesome! She has taken such great care of him and us. She remembers the details about our family and is so great with B. She had a gift for Brandon that he just loved. He said NUMEROUS times today through tears that he will really miss her, we all will. We were lucky to also get to see Cassandra his other favorite. St. Jude is an AMAZING and SPECIAL place. The reasons are attributed to people like Michelle and Cassandra, Sarah and Krisha, Dr. Merchant and Christy, the list goes on and on.

We will get back on with Dr. Geyer and Corrie when we get back. We already have an appt. set for when we get back. Group Health is still an issue. We are at our last appeal for coverage. If they deny for the third time we will be forced to hire an attorney.

We won't come back to St. Jude until late September for his 1st post MRI. Those MRI's will always be very stressful but we will pray for clean scans!

We finally feel like we can now get back to some normalcy. We have been living minute-by-minute and day-by-day since Feb. 4th. We can now breath a little bit and enjoy some time before Sept.

Well, gotta pack up the lap top!
Good night,
Kris, Jeff and Brandon

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Hi all, hope you are all well!

Brandon is great! We kept waiting for the tiredness to kick in from radiation but it has not. I'll tell ya if he is like this now during radiation I am nervous for when he is full strength again! He is feeling well, gaining weight and happy!

Brandon said the cutest thing the other day. We always say, "I love you, I love you the best, I love you the most, I love you the mostest of the bestest". He said yesterday "Mommy I can't help it that I love you so much". My heart melted!

We have a fun filled packed last week while we are here. Doctors appts. M-TH with visits and some last sight seeing to do before we head home!

Reminder: we fly home 7/4 so hold off on the mail here in TN. THANKS so much for all of the mail, it is a daily trip to the mailbox he looks forward to!

Grammy stayed home with B on Saturday night and Jeff and I got a night out. Went to David and Julies for drinks and then out to dinner. We had a really nice time, thanks to grammy!

Sunday we are headed to a Memphis Redbirds baseball game (AAA). We sat in a corporate box and had air conditioning! B had such a great time, the team mascot, Rocky, came up to visit and then the "Redhots" cheerleading squad came up and he was one happy little boy! He also met some new friends his age, Mimi and Ginny. They had a great time playing together at the game. They were curious about Brandon's mic-key and wanted to watch him have some food.

Today was a long day at the hospital but all is going very well. Dr. Merchant is very pleased at Brandon's progress following 6 weeks of radiation. If he had any more energy we would be hard pressed to keep up with him. He is happy and full of tricks. Jeff and Grammy dropped Brandon and I off Monday afternoon and ran some errands. When they got back they were 'ambushed' with squirt guns and syringes loaded and ready! Brandon & Kris had actually been using the walky-talky's to track Jeff & Dianne when they got here! Brandon's got a very accurate shot!

Other than that we can't wait to get home!
4 more days!
Love, us

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Hi all, wanted to send one out tonight as this has been a busy and fun week!

This week we had an MRI, throat scope to check Brandon's vocal cords, went to the FedEx St. Jude Classic Golf tournament, had Grandma T for 2 more days, had Grammy arrive, and had dinner with our friends Julie & David and B's new best buddy Reid from Fed Ex & his wife ! We have been so busy and are glad to be home tonight! Brandon is doing so well and we are getting very giddy about coming home but sad to leave St. Jude and our friends. We found out we will come back the week of September 21st for Brandon's 1st post treatment check up.

Tuesday Night - we went to Target House (housing for families here longer than 3 months). The PGA player's wives hosted a putt putt event and dinner for the kids. We got to meet some golfers, Phil Donohue was there, and Brandon got to play putt putt and play tag with his buddy Ryan. We hung out with the Sterlings and Christine and her family!

Wednesday - Brandon had an MRI and afterwards we went to the FedEx St. Jude Classic. A family with a home on the 18th green hosts St. Jude kids for lunch and to watch the players come in. B had a blast driving a golf cart and getting autographs. What a treat for him and us, pretty neat deal! Jeff and I will go back on Saturday to watch for a bit! The course (TPC Southwind) is only about 1 mile away form our apartment. After picking up Grammy (Dianne - Kris' mom) at the airport, we went to David and Julie's for dinner with Reid and his wife Lori. We had a great time and Brandon loved seeing Reid again. Brandon went out front with the adults and caught lightning bugs! We will really miss these new friends but know we will see them in September!

Thursday - Brandon had a throat scope to check for swallowing function. His right vocal cord is starting to compensate for the left one which is still not moving. But he DOES NOT aspirate into his lungs and has a nice strong cough to clear himself. The docs still feel confident he will be able to swallow again, just will take some time. BUT...On Wed at the golf tourney Brandon was sucking on a strawberry. He loves getting some taste in his mouth. He turned his back to me so he could hide something. When I asked him to turn around part of the strawberry was gone. I asked where it was and he pointed to his tummy with a great big grin on his face! I did not know if I should cry because I was so happy or worry. I stayed calm so I would not startle him and just watched him suck away! So we know he is getting something down to his stomach! Very exciting. Tomorrow he does the actual swallow study so it will be neat to see what he does!

MRI RESULT - I prayed for a good result and we got one! We saw Dr. Merchant in the cafeteria this morning while B was in radiation. I asked if he had reviewed the MRI and he said he hadn't yet. He came back and knew we were anxious so he went to review it and came back with the news that it looks like it shrunk a little bit. Mind you it is 5mm x 3mm. So shrinking is minute, but that is the right direction. He also mentioned that most all of the post-operative swelling is gone. Science told me that to pray for it to be gone was not logical. But I prayed for a good result and we got it. Dr. Merchant is an amazing doctor. He stayed and just talked with us for another 20 minutes. It was a great conversation. He feels good about Branson's prognosis. This next year we will have 3 or 4 MRI's and he is hopeful that this little piece will die off within this time.

Well as you can tell it has been a good and busy week!
Tomorrow we have the swallow study then a game of Candy Land with Ryan at Target House. Saturday Golf & Liberty Land are planned along with Jeff and I trying to get out one more time for a mommy and daddy date. Sunday a Memphis Redbirds (AAA Baseball) game with David and Julie. Packing and then 4 more days of hospital and we will be home!

Love,
Kris, Jeff and Brandon

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Hi all,
10 days until we are home! We can't believe it. Feels like we've been here a week, but feels like we've been gone from home for years! We are all feeling a range of emotions. Psyched to be coming home but sad to say goodbye to the docs and nurses and the comfort of St. Jude. We have also made some fast friends out here. Very neat folks and hard to say goodbye too. Julie and David have been great and we hope to have them out our way soon!

Grandma T leaves today :( Grammy gets here tomorrow :)
Grandma T has been a blast and gets up with B so we can sleep a bit more. Grammy will stay with us until we leave!

Brandon has a MRI tomorrow. Not sure what we will see. I pray that the little piece of tumor will be gone. That is not expected with this type of tumor but God has been good to us so I always pray for the best!

Packing up will be a task! We have accumulated so much in such a short time. We will begin shipping boxes home this week. It will be nice flying commercially home so we can check more luggage!

We are going to the St. Jude FedEx Classic golf tourney tomorrow. A family on the 18th opens their home to St. Jude kids and parents. Kids have a ball and get to meet the players as they come off of the green! Mom and dad are pretty excited too!!!!

Attached are pictures of Brandon and Ryan, a new friend he met at Target House and Brandon driving his boat.

Can't wait to see all of you!
Love,
Kris, Jeff and Brandon

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Hey there, WOWWWWWWWWWW what a day we had on Wednesday!

Wednesday afternoon was Brandon's big "Tour of Fed Ex day".

Thank you so much to our new friends David and Julie for relaying B's love of planes to their friend Reid Averill. Reid, an Assistant Chief Pilot at FedEx scheduled the most awesome day for Brandon! He got to see where the pilots check in and plan their flights (the AOC), tour 2 FedEx planes out on the tarmac (a DC-10 and 727), go up into the control tower, go in a flight simulator for a 727-200 (both Jeff and I loved this as we got to take off and land the 727 with Brandon, No crashes!!!), and see the Global Operations Center - the nerve center of all FedEx operations worldwide, all very impressive! This was a highlight to say the least! Our tour lasted over 3 hours! A huge hug and big thanks to Reid! Attached are some photos from this great adventure.

God was watching us today!!!!
We had just walked in the door of the Air Operations Center and a man grabbed my arm and said "Is that your son?". I said "yes" and he asked if we could speak a moment outside. As his eyes filled with tears he told me he recognized the scar on Brandon's head. He said his son is now 25 but 20 years ago he went through the same thing. We exchanges stories and we were both very touched. As we continued to talk we realized we both lived in WA. They live in Kirkland, us in Bothell. WE LIVE 10 MINUTES FROM EACH OTHER!!! We exchanged info and will get together when we get home. I said "this is crazy" he replied that "this was God putting us in each others paths". I AGREE! He is a FedEx pilot based in Seattle and was only in Memphis for training. We have had so many instances like this since this all began that I am so thankful to be aware enough to recognize them as they have been so important and often life changing!

WE WILL BE HOME ON THE 4TH!
We got our tickets yesterday and will be home in the early afternoon on the 4th! We are so excited!

Gandma "T" arrived last night for another. The weekend forecast is for lost of sun and warner weather, so I am sure that another visit to LibertyLand is in the works for us.

love,
Kris, Jeff and Brandon

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Wow,
Time seems to be flying for us - we have started making our return arrangements! Brandon's final radiation treatment is scheduled for July 3rd and it looks like we will be able to fly back on the 4th!

Shelly Young (Otto) arrived Saturday afternoon. Brandon calls her only "Shelly-Otto" I think he thinks that is her first name. It is very funny to listen to him talk to her.

I had a very nice Father's Day. Brandon made me his breakfast specialty - a one eyed jack. We then spent a few hours at Libertyland and headed over to Julie and David's for dinner!

Shelly had a play date with Brandon this afternoon to give Kris & I some time together. We went to see Bruce Almighty and had a relaxing dinner afterwards. She is also sleeping in Brandon's room so we both get the night off tonight!

Julie & David, our new friends in Memphis, have a contact at FedEx that was able to arrange a special tour of the FedEx Memphis hub. We are scheduled for a 2-hour tour this Wednesday afternoon! I can't wait to see Brandon's face, he will be so excited!

Attached are pictures of Brandon's recovery nurse Michele, the tye-dye shirts he made, and from this Sunday at Libertyland.

Well better head to bed!
Love,
Jeff

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Hi there,
just a quick hello with all is well!

We have officially reached the 1/2 way mark of radiation. His last day will be around 7/3/03. Still doing well and getting to be an old pro. I can start to tell he is going to miss St. Jude when we leave.

We had a good time when Jeff was gone but happy he is home. We just got home from a "Scooby Doo" movie party at Julie and David's. They are the couple we just met but they feel like old friends. Nice to have friends to hang out with here!

Once we go back home from here we will come back to Memphis in September and December for MRI's and tests to see what the little piece of tumor and the tumor site are doing. HOPEFULLY NOTHING! That is what he hope and pray for every day! If you want something specific to pray for it is that "the radiation is zapping any remaining live tumor cells that are left and killing them off".

We will get back with our docs from Children's that we miss so much as well to take care of any check ups and rehab he will need to continue with.

Other than that all is well and Brandon is still feeling pretty good!

Love to you all,
Kris, Jeff and Brandon

Hi everyone,

We had a good week and a real fun weekend. On Friday Brandon completed his 13th radiation treatment. He is doing very well. We should start seeing him a bit more tired in the coming days, but in the mean time he is feeling great!

This weekend we enjoyed the mild weather (it was actually cooler in Memphis than it was in the Northwest - highs in the mid 80's) and had a great time. On Saturday we went to Libertyland, a fun amusement park in Memphis. Brandon had a ball and didn't want to leave. He rode several almost all of the kids rides and even went for a ride on the "big kids" wooden rollercoaster! He was excited to ride it, but afterwards thought that the ride was "bad". For all of you that know Jeff you will get a kick out of this: There was the typical "go around in a circle on a vehicle" ride. You could choose between fire truck, very cool motorcycles, racing cars, and a bus.....Brandon choose the bus!!! We also made some new friends, Julie and David. Two extremely nice people and fun to hang with. They have a couple of dogs and a pool. SO we hung with them and Brandon had a great time with their dogs! (Julies' folks live in AZ by Jeff's so the parents hooked us up).

Today we went with them to see Finding Nemo, great flick. B was a bit scared but enjoyed if for the most part. Then we ran some errands and came back to chill at the apt.

A friend of ours passed away in her sleep this last week. Jeff and she and her husband were good friends. Very unexpected and sad. Jeff is going to fly up tomorrow to Portland for the funeral and will back on Wed. night. B and I will chill and have some good Mommy and Brandon time. Julie and David invited us over for Wed. evening. Brandon is going to bring his Scooby Doo movie for them to watch with him.

All is good other than that! We get Shelley Young (Otto) next week, then Grandma T, then Grammy then HOME!!!!!

Attached are pictures from Libertyland, Brandon riding the trike at St. Jude, and also a picture with Brandon and Dr. Merchant.

Love you all,
Jeff, Kris and Brandon

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Hi there, sorry for the delay in an update. ALL IS FINE! We sure do appreciate the e-mails to check in to make sure Brandon is ok!!! Updates might be once a week or more! It is we the parents that are a bit tired and getting lazy about the updates when all is well! Brandon is doing great! 10 days into radiation and he is a trooper! Nurses love him and he has taken to a couple of them as well! At night we have to get up several times for meds, food, or to help him cough and clear himself due to the swallowing challenge. So needless to say Mom and Dad are tired!!! We are being reminded of the newborn days and feeling like you can't catch up on your sleep! Shelly Moore is in town (Jack-o and Ry-Guys Mommy!) so she is letting us sleep in a bit to catch up since the little dude is up at the crack-o-6am ready to go! We had Bumpa (Kris' dad) for a good visit and are looking forward to Shelley Young (Otto) next week!

Other than that he is getting stronger every day. Still not getting the weight back up but at least he is not losing anymore. The radiation makes his tummy a little funky so getting the food in is a challenge, plus he can't eat for 8 hours prior to radiation so it makes it hard to catch up.

Before we leave to come home, again around July 7th, we will do MRI's, swallowing test, PET scan (to see what the tiny piece of tumor is doing), eye tests and a few more to give us some piece of mind. Then we will come back in Sept and December for follow up MRI's.

All for now. Daddy and B took of to the Post Office so I need to take advantage of the free time. Then Shell and I are off for Margaritas!

Love,
Kris

PS Again, we try to send thank you cards out the best we can but you all have been so great about sending B cards and gifts, so THANK YOU!!!

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Hi all, hope you all had a good long weekend. We did! Nice having a break from the hospital for 3 days!!!

All is going pretty good. B got through his first 3 days of radiation. He was pretty nervous and scared but seemed to do a bit better each day. We had a great time with Grandma T, and Bumpa gets here this week then Shelly Moore on Sunday! The visitors are great as I think we can all drive each other crazy being around each other 24/7!!!! But, on the other hand how many times to you get to spend that much time with your family?? Although we miss the normalcy of home, work and school for B we see this as an opportunity to spend A LOT of quality time together without the worries of vacuuming the house, mowing the lawn etc. At home I would often multi-task, meaning I would be spending time with B while trying to do the dishes or clean, not too worries about that here!

Many of you have asked what our days are like here and how the schedule works:

9am arrive at the hospital, check in and get an arm band for B

9:30am Physical Therapy. B has lost 10 lbs and has some balance challenges. So he and Mary banter back and forth about how much walking and bending he should do!!!

10am Speech Therapy. B is pretty weak here. You have to listen closely as his voice is quiet and horse, all of this will come back though. He likes his speech therapist from Children's so much that he is making this one work for his affection!

11am Radiation appointment. Some days he goes right in and some days we meet with the docs first to see how he is. Side effects of possible nausea, fatigue and head and throat discomfort come around week 3 if they do. The actual radiation takes only 10 minutes, but since they sedate him we do not see him for about an hour.

12pm-1pm Chill time and lunch. It is easy to feed him as we just pump it in his tube!

1:30pm Occupational Therapy. This will help with upper body strength. He is doing well in the area!

2pm-4pm usually a variety of appts.
He will continue to have psych consults during radiation. He did his baseline IQ test and the kid is SMART! Almost off the chart smart!! Mommy will need to attend classes so I can help with homework! He gets his smarts from Daddy! He will do another swallow test soon and they will continue to check his eyes and hearing. They will do MRI's during all of this to make sure the tumor is not coming back and the radiation is doing what it should be!

4pm HOME! We are all ready to head out.

Weekends are nice to relax and site see around Memphis.

We think we will be home by July 8th or so. We are excited to be able to go to the golf event. What a great way to celebrate with all of our friends and family!

Love,
Kris, Jeff, & Brandon

We are all home tonight! Brandon was discharged around 8:00 PM tonight. His feeds are going well - he was hungry several times today (a good sign). Today Brandon had a busy day. We started with PT (physical therapy), and later had an OT (occupational therapy session). In the afternoon he walked quite a bit and had fun painting flower pots after painting 3 pots he 'rode' back to the room (see attached pictures - that's paint on his face). Also Teresa (Grandma T) arrived tonight - we are happy to have her.

We have a full day tomorrow, we start at 9:00 AM and have various appointments scheduled through 4:30 PM. Not the least of which - his radiation treatment begins tomorrow!

We are very happy that all of us are one again sleeping under the same roof. Have a great day tomorrow.

Love,
Jeff, Kris & Brandon

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Well, we are back here at St. Jude.
G-tube is in. B is pretty sore but hanging in.
They will try to start clear liquids tomorrow night or Sunday morning then if he does well onto his food again. Some kids have trouble but I am sure he will do fine.

We will be here through the weekend!
Love,
Kris, Jeff, & Brandon

Hi there, it is Thursday night.
We had a busy day again today with appointments, MRI's etc. B is not feeling too good due to some swelling at the back of his head. They did a lumbar puncture today that should reduce some of the swelling. By doing one it takes away some spinal fluid which releases pressure for cranial fluid to drain from his head down his spine. He was seen by a Neuro Doc who said he looked good and expects most of Brandon's lost functions to come back with time!

We go to the hospital tomorrow to have a G-tube put in. It is a 1-hour surgery but about 2-4 days of recovery. He should do well it will take some time for his tummy and body to get used to it!

Met a little gal today, Elizabeth. She is 6 and was diagnosed with an Ependymoma tumor when she was 2. She is 4 years tumor and cancer free! Great little gal to meet to continue to give us hope!

We will be at St. Jude through the weekend!
Love,
Kris, Jeff and Brandon

Hi all, we came home today! Well at least to our apartment in Memphis but at least we are out of the hospital. All of the docs said he was doing too well for us to be there! Brandon was VERY excited. He is in his room sleeping and seems very peaceful! He had a CT Scan today to start planning for the radiation to start next Monday. We still have a busy week at the hospital but at least we will be sleeping at home! He has some swelling still on the back of his head. The surgeons want to see him tomorrow to check it out. Should be ok though.

Not much more than that!
Love,
Kris

Hi there,
we are now officially over at St. Jude. Had a good first night. Brandon is a bit nervous with the change but warmed up to it all as the day went on. He had a busy day with PT/OT appts., hearing test, eye check, nutrition appt and surgery consult for his G-Tube. He did lose the hearing in his left ear as we expected. But he has already begun compensating well on his own. His eyes are fine although we have to keep lubing up his left eye since the lid does not close all of the way. For his PT/OT they were very impressed with his coordination and intelligence!

Tomorrow they begin the mapping of his brain for radiation. They should begin that towards the end of the week or early next. It will be 5 days a week for 6 weeks. The radiation appt. should take about 1 hour or so and then we will have rehab appts each day as well. From the start date it will be 6 weeks then we get to come home. Brandon asks about when we can go home to "Bothell" and he really misses his dog, Rudy.

We should only be "IN" St. Jude until the weekend then will be at the apartment the remainder of the 6 weeks. Other than that all is well!

Love,
Kris

A bed opened up at St Jude today, so we were transferred there around 6:00 PM tonight. Brandon was very excited to ride in the ambulance! We will miss the outstanding care that we received at Le Bonheur, the nurses there are very good and really make a difference. However, we are eager to get over to St Jude and move on with Brandon's treatment. He already has a full day scheduled for Monday: consults with PT, OT, nutrition, and neurology, as well as ear & eye exams. We also hope to find out when his G-tube surgery will be scheduled.

St. Jude is truly a wonderful place with wall murals, play areas, and bright colors throughout. Even thought it was rather quiet when we arrived on Sunday evening, the place provides an tremendous feeling of caring gives you a sense just beams with a overall positive feeling.

It was a beautiful Mother's Day in Memphis; clear blue skies and a high in the upper 70's made for a wonderful day. A very happy Mother's Day to all.

Love,

Jeff, Kris & Brandon

Brandon is continuing to improve and had another GREAT day. He really LOVES opening all of the cards he gets from everyone. Today he was thrilled to receive a big get well card along with a box of presents from my coworkers at CH. He is tolerating his feeds better and is needing less pain medication. We are still at Le Bonheur and probably will not move to St Jude until Monday as they are no beds available. We met with the St. Jude radiologist this afternoon; it looks like we will begin preparing for radiation therapy late next week with the actual treatment beginning early on the week of May 18.

I've attached a few pictures showing Brandon enjoying the day. I also wanted to share Kris' message with each of you. Her words are truly wonderful.

Love Jeff

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From Kris' mom Dianne:

Brandon is even better today, laughing and joking around, all in all much more active. The only issue at the moment is his tummy and head pain. When his head hurts (which isn't all the time) he get's nauseated and vomits. He does bounce back pretty quickly, this is just one of those side effects that will wear off. He had the same issue after the first surgery.

At last word he is being transferred to St.Judes tomorrow. They will put the G tube in his stomach there for feeding. Will be so much better than having the tube down his nose and taped to his face! I don't know how long he will be there but will fill you all in when we learn the schedule.

Rich and I had dinner with Kris and Jeff tonight, NOT AT THE HOSPITAL! Believe you me, the care and medical expertise are phenomenal, but the cafeteria is pretty awful. Makes Children's food look like gourmet fare. But the hospitality and friendly atmosphere is pure southern wonderful. I already find myself with a bit of an accent.

Rich and I leave tomorrow for Nashville then have an early flight home on Saturday. You won't hear from me till then so don't worry.

Thank you ALL for your notes of love, encouragement and pure joy. I hear the shouts of triumph all the way here.

Till next time, keep praying and know I love you all
Dianne

Brandon had a great day today! He was up and about quite a bit. In the morning he went to the physical therapy room, but wasn't much in the mood for it. He was in the mood for some crafts when Grandma (Jeff's mom) got there. Grandma, Aunt Jen and Brandon had all sorts of fun with glitter glue and other projects. This afternoon he went to check out the playroom for the 1st time. He walked all the way back to the room (about 30 yards)! He is smiling more, joking more and now wants to make a concoction tomorrow!

Last night the doctors told us that there was a possibility that they would want to go back for an additional surgery to remove a very small piece of tumor that was remaining. This afternoon the tumor board doctors decided against further surgery. They feel confident that radiation is a better method since what remains is in a very delicate area and is so small. Although we were getting set mentally and emotionally for another operation tomorrow it is nice knowing all the progress he has made this past 5 days will now continue. Tonight Kris is at the hospital with Brandon, hopefully she is sleeping now, getting much needed rest.

Yesterday was also a good day:
First thing in the morning he had an upper GI x-ray to check for the placement of his G-tube (Gastrostomy) (yuk - had to fill his tummy with barium; for more info: www.radiologyinfo.org/content/upper_gi.htm) The G-tube will replace the NG-tube that goes in his nose! This will be less intrusive for Brandon and also more convenient - no more Tegaderm on the face! Greyhounds visited the hospital in the afternoon so we took him down to the lobby to meet them. He then goofed around with Grandma and made crafts! I spent last night at the hospital and Brandon had a fairly good night and got some much needed rest.

Also, Please see below for information on the Friends Helping Friends Golf Tournament/Auction.

Love to all,

Jeff, Kris, and Brandon

Hi there,
I came home from the hospital today to sleep and shower as the nights there are not really restful. Thought I would send my own update today!

We are all so thrilled out here at how Brandon is doing. He has taken about 10 steps out of bed, sits up quite a bit, stood up to go potty twice and took a wagon ride down to the gift shop today. This is all JUST 3-days out of surgery which is 3 times as much as after the lst surgery.

ENT and the swallow docs feel good to say he will not need a trach! Very great news! He will most likely get a G-Tube into his tummy for feeding. This could be a long road of up to a year before he can fully eat out of his mouth again.

I think it is sinking in for Jeff and I each day at how great this all is. Brandon's team of Neurosurge and Oncology docs at Children's did a GREAT job on the 1st half of the tumor. The docs here said the tumor was MUCH less bloody than they thought it would be. They said it was easier to get out. We are blessed to have Brandon treated by 2 such great teams and hospitals.

Radiation will start in the next week or 10 days. From then it will be 6 weeks until we come home. We wish you were all here to share in our elation over this outcome. This last 2 1/2 months seems like such a long journey. We still have some hills to battle with this type of tumor but we are confident that we were led down this path so we are in the hands of doctors that know how to remove it and then control it for a long future for Brandon!

We will keep you updated on how it all goes out here!

Love,
Kris

As I write this message, we are under a tornado watch here in Memphis...but hey that's only the weather. The GOOD news of the day is that Brandon has continued to improve and was transferred out of the ICU late this morning! He is now in a private room on the neurosurgery floor.

Last night, Brandon's breathing got fairly congested so a chest x-ray was taken early this morning to check if he was aspirating. The results were favorable with no indications of pneumonia. As the day progressed, he was better able to manage and clear his airway. While it is still a possibility, we feel a bit better after today that he will not need a tracheotomy. Much of the day was spent resting and napping as he had a restless night last night and didn't get much sleep. However he sat up in bed several times throughout the day to swish apple juice and milk. In the afternoon he got out of bed and went for a short wagon ride around the floor (picture attached).

I think that Kris and I are now finally recovered from our bout of strep throat. I had a fluke fever last night and went to bet at 6:00, but woke up this morning feeling fine. Now that Brandon is in a regular room, only one of us is spending the night at the hospital. Tonight Kris is with Brandon and I am at the apartment.

We are so very thankful for everyone's prayers, support, and hopeful thoughts.
Until tomorrow,
Love Jeff, Kris, & Brandon

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Hi all, Brandon has had a busy day, they took out his intubations tube from surgery and he is breathing on his own! The ENT doc came in and looked at his throat and is encouraged that he might not need a tracheotomy. We are not out of the woods yet, but this is a good sign. They did the post op MRI this morning and it came back clean except for a little blip next to his brain stem that is either a little residual tumor or post operative swelling. In either case they know they got 99% of the tumor and the rest can be taken care of with radiation.

He is talking and has asked for a lollipop (and even pulled out his own catheter, his nurse said this was a first for her!) The next day will be consumed with his breathing and hopefully avoiding a tracheotomy.

We are at LeBonheur Hospital in Memphis, will be here for about another 6 days then to St.Judes, then our apartment. By the way if you send anything to our apt. please put 'Bldg.2" before the apt #202.

Love to you all
Jeff, Kris and Brandon

The first meeting with the Doctor yesterday went real well and we were reassured of our decision to come here after meeting with him.

Today we are still unknown on the insurance coverage, so there have been delays at hospital on admitting Brandon, for now we are proceeding on a self-pay basis.  Also, Kris wasn't feeling too good last night.  This morning she went to see a Dr. and turns out that she has strep throat - ugh...She is sleeping now, but should be good to go in a day or so.

We have found a place to stay on the east side of town.  We be transitioning to there over the weekend.  Here is the contact info:
        3943 Tamarron Dr  #202
        Memphis, TN  38125
        901-756-7564

Jeff, Kris, and Brandon

We are here!
We are settled in and getting used to the Memphis heat and humidity! Not too bad but can only get hotter!

We had some great phone calls and visits yesterday. Hard to say goodbye to all of you! Grammy brought us to the airport, luckily we will see her in a few days so not too sad saying goodbye today. Pilots were great, very nice men. Pretty easy flight, just 3 two hour stints across the country. Brandon had a blast! He tinkered, learned how to operate everything and made cards for the pilots!

We are staying in an extended stay hotel. (901) 685-7575 x7628 (room #211) We will only be here a few days until we find a permanent place to stay. Once we get settled we will forward all of that info to you!

Tomorrow we will look for a home for the 2 months we will be here. Wed and Thur doctors appts. Thur night we will stay at the hospital and Friday is surgery.

Love,
Kris, Jeff and Brandon

Well we are off!
A lot of emotions leaving filled with anticipation and hope for our son! We will update you all as to our contact info once we get settled this week. Surgery is Friday so major thoughts and prayers that day sent to Brandon as the surgeons work to make him well.

We know some of you receive this that have never met us so here is a pic!

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Hi all,
well we will be leaving at 8am Monday morning the 28th for Memphis. We found a flight through the Corporate Angel Network that will take us and one other family out on a private jet. THANK YOU to everyone that worked so hard to make this happen. We know so many of you went to bat for us and we have a feeling that with all of the calls and e-mails this organization realized how important this was to us, so thanks for making it happen! (thanks Mike M and Deanna!) You all have come through for us in some capacity! We can't thank you enough! We will do that though at a future party where we can celebrate Brandon's recovery and your friendship! This will be one big event as there have been hundreds of you in Brandon's corner!

We feel sad leaving the team of Doctors and nurses here at Children's. They have done such a great job of taking care of Brandon, and us! They have us half way there now we need to get over this last hump! We thank them from the bottom of our hearts!

Brandon's surgery will be on the 2nd of May. We will be in the hospital a week or so and then who knows. It will depend on his recovery and how soon we will start radiation. We anticipate we will be back in Seattle in early July. So if anyone is up for a visit to Memphis let us know as we will be there for a few months.

If you know anyone out there in Memphis that can be a contact for us let us know! We would love to make some friends out that way.

We will still be corresponding by e-mail and will get you all of our contact information once we have it! We love you all and will miss being home but can't wait to return with a healthy child!

Kris and I decided not to travel to TN tomorrow. We feel confident that doing Brandon's second surgery out there is what we need to do. So instead of spending 3 days gone this week, coming home for 4 then turning around again to travel back there we are just going to get it all done next week. So we will be here this week and looking to head out on the 29th. They told us to be prepared for ups and downs and changes along the way, they were right!

We found out today that his surgery will be on Friday May 2nd. We will leave on Tuesday the 29th so we can be there for pre-op appts.

E-mails flooded in today with help on private flights, thank you so much. Those of you working on it we now need to be there early next week!

Well, it looks like we are going to do the surgery on or around the 9th of May at St. Judes. Jeff and I will still travel to TN this week to meet the docs, Brandon will hang with Grammy and Papa. Since we have decided to do this (pretty much 95% sure) we do not want to risk flying with Brandon as he is so susceptible to catching a cold and we can't afford him to be sick while we are trying to get him healthy for surgery.

This all brings up a question and ask for assistance.
We are trying to find a private flight out to TN on or around the 5th of May for the surgery on the 9th. This will be a much safer way to travel. If Brandon got sick a few days before we might have to postpone it until he gets better, we can't risk that time. So...if anyone has a contact for us that we could make in regards to getting out there on a private plane we would GREATLY appreciate it. What a crazy request to make but this is a crazy time. Just shoot us an e-mail if you have any leads for us.

We will update you all when we get back as to our final decision although I think we have made it already!

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Hi all,
we have decided to fly to St. Jude's next week to meet the doctors and fly home to make our decision. Our heads are just reeling with information and we feel much better if we go there but then come home to ultimately decide. My uncle Chuck is helping by talking to all of the docs too. Thanks Aunt Rhea for helping us get there!

Brandon is doing great! His blood counts are up, his weight is starting to come back up too. All in all he has more energy and feels better. Heather came over today and they went on a VERY long walk collecting "treasures". Another sitter Lynne, from before all of this came yesterday and they had a ball. So great to see him getting back to some old routines.

Brandon became an honorary team member of the Edmonds-Woodway and Jackson High School Soccer teams. What an Awesome Event. We all loved it. See the attached pictures! Thanks to Tony Gilman, Mike Bartley, and the girls and boys soccer teams!

Regardless of where we do treatment we will probably do a second surgery in the next few weeks and then straight to radiation therapy. This next surgery will be in the hopes to get the rest of the tumor. Pretty heavy risks but for a possible cure this is the best shot we have. Radiotherapy will take about 6 weeks. So hopefully by July we will be done with treatment and on the mend!

Love to you all! All of the card senders that are driving our mailperson crazy, THANK YOU! The lollipop senders, thank you, he looks forward to that everyday! Everyone supporting us through the golf event, Brandon's cards and in ALL of the other ways, thank you. We are touched everyday by your generosity and support and now that we are getting down to crunch time this once again helps more than we could every convey to ALL OF YOU!

Love, Kris, Jeff and Brandon

Hi all, well not too much news other than Brandon is recovering well from the chemo and getting stronger each day. He has taught Papa and Daddy how to play "52 Card Pick-up" and is constantly squirting me and Grammy with water syringes! (neat trick they taught him in the hospital!)

We are waiting for Children's to meet this week to let us know what they propose we should do. We spoke to the surgeon at St. Jude's last night and he confirmed for us that they feel strongly they can get the rest of the tumor out, although not a guarantee. St. Jude's is the leader in the country in treating this type of tumor and their numbers for survival are down right amazing!!! Stressful but exciting time because we have a lot of hope in what the docs at St. Jude's can do.

Many of you have asked how you can help! All of you already have in so many different ways that it is humbling to accept the help and even ask for it. We are so lucky to have the family and friends that we do that I know we would not be managing without all of you! Both Skyhawks and CH2M Hill have been amazing employers and friends during this time as well so that we can focus on Brandon!

There have been 2 events set up to assist us in this journey. There will be a golf tournament this summer (see details below). Paula Horne has also established a fundraiser called "Brandon's Cards". Shelly Young hosted the first "card making" party, it was a ton of fun and a great success! Please contact Paula at Paula_Horne@everett.wednet.edu for more information. These events will help support our family's fight to cure Brandon.

Love, Kris, Jeff and Brandon

Hi there,
well we heard from the docs at St. Judes and it was an encouraging phone call! The surgeons and Radiologist met today and feel that Brandon's case is: "Pretty Straight forward" and "We (the surgeons) feel good about doing the second surgery and have no hesitation about it".

That is the news we have been wanting and needing! They have done so many more surgeries of this type out there that they have so much more experience.

NOW, we have to slow down and really do our homework when making the decision to go out there or not. If we do go it would be in the next 2 weeks to a month.

We feel so lucky to have found these guys. If we had not done our homework and made some calls this would not have happened!

Well, pretty tiring evening so we are off to bed! We will know more in the next few days to a week.

Hi all,
a few new items this week.

UW had him in to do a CT and MRI to start mapping his head for Radiation. Since they did the MRI they are going to talk about Brandon at Tumor Board tomorrow at Children's. We should hear from them this week or next.

We are now done with Chemo. We had 4 more days to go but Brandon's little body took the drugs too hard again so they had us stop. Not too big a deal for his treatment to stop 4 days short.

We sent his films off to St. Judes in TN. They are going to review his case and call us Wed. night.

So now that chemo is done we have some BIG news to hear from the docs here and in TN. Very scary as we keep moving down the road of treatment. OUR HOPES are that the chemo shrunk the tumor so they can go back in for a second surgery and get the rest. The docs here don't think they can that is why we sent his info to TN, top notch docs out there at St. Judes.

We pray every day that they can go back in for a second surgery as the chances to beat this are good if they can and get all of it. If they can't it will be tough. I have tried to be so positive through all of this for all of you but we are really facing a potentially challenging month. A few kids have made it without all of the tumor taken out but we know that your chances increase dramatically with it all out. BUT...I prayed tonight that God would touch Brandon and insure his tumor did shrink and that the docs can and WILL go in for a second surgery, get ALL of the tumor and then let the radiation kill off the rest. So if you want something specific to pray for or think about that is it!

We are hanging in and always appreciate the outpouring of love and thoughts you all send via the various ways!

Love, Kris, Jeff and Brandon

Pretty good week this week. Brandon is feeling much better this time around with the chemo. His Aunt Jen and Grandma and Grandpa are here this week having a ball! We are off to UW today for an MRI and Cat scan so the radiologist can begin getting ready for Bandon's radiation. Probably will not start until Mid May, but all is dependent on the MRI at the end of this month and if we do a second surgery or not. This MRI today will not be reviewed for the tumor just used for mapping his head for the radiation.

We sent his films to St. Judes out in Memphis, great docs out there with lots of experience treating kids like Brandon. We will see what they think!

Hi all,
just got back home from another little hospital stay. Brandon ended up getting Rota Virus (Bad diarrhea) so we were in to make sure he was hydrated and doing ok. Totally unrelated to the chemo. He is actually doing pretty good. Feeling a bit better compared to last week. Hopefully we are on the upswing from chemo and he will continue to do well. We are still giving him home chemo but that will be over in 11 days. Then at the end of the month we will do another MRI which will really be a huge decision making time. Based on tumor response or no response to the chemo which the MRI will show, we will have some big decisions to make. My hopes and prayers are that "The tumor shrinks up so much that they can get the rest with a second surgery and then onto radiation with no visible tumor left" I pray for that everyday!!!

He had another swallow study today and unfortunately he is still not ready. But...he left with the ok to taste a sucker 3 times a day, so at least he can get some taste back in his mouth. So if anyone has some really creative suckers out there let us know. His request to me today was for one that tastes like french fries and hamburgers.

His left vocal cord is still not functioning properly and his swallowing ability is still pretty weak. But, we will keep plugging along to get him stronger until the next swallow test is scheduled, probably another month from now.

We are up for visitors as he is getting fairly tired of our constant mugs for the past month! Give us a call would love to see you! 425-486-3104

Love, Kris, Jeff and Brandon

Well, we just finished a great week at home! Brandon felt the best this past week during his break from chemo. We start again tomorrow for another 3-week course. Then another MRI at the end of April. That will be the second biggest hurdle and we hope to pass that one with even better results than the surgery. The way we looked at the surgery is that they got more than 50%, wished it had been more. The tumor is malignant but not super aggressive. So we took the good with the bad. Now with the chemo we need to see it shrink, keep praying and sending good thoughts that tomorrow and for the next 3-weeks that those chemo drugs will infiltrate the tumor and shrink it daily!!

If this does not work we will still have him do the radiation and see what comes next. The further we get down the road the scarier it gets because you can only do so many things to a tumor. But we remain hopeful that Brandon will be a miracle story we will all be telling years from now!

We are all well here. Gary and Theresa are in from TX (Bumpa and Grandma T) so he has had fun harassing them! Jeff is back at work and I have been tackling a few projects for Skyhawks. Our companies have been more than amazingly supportive through this and we thank them every day in our thoughts and prayers.

Rich and Dianne (Kris' parents) are almost done with their house but we have been keeping a short leash on them as it is great to have their support here at our home.

We get to Skip, Judi (Jeff's parents) and Aunt Jen here in April (Grandma and Grandpa from AZ and Aunt Jen from CA), we are so lucky to have such great and supportive family.

If for some reason we can't start chemo tomorrow due to low counts then we will start early next week. We will let you all know as if we are free from it this weekend we would love visitors as his counts are well enough for that.

Love to you all,
Kris, Jeff and Brandon

P.S. Attached are two recent pictures of Brandon. The picture of him 'syringe' painting (a new skill he learned at the hospital) with friends was taken this Monday, March 17. The picture with Jeff & Brandon was taken on March 2.

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Well, this has been one hard day, it felt harder than the actual surgery day. But..the tumor has not grown! That has to be one of the best feelings we've had hearing that. Both Jeff and I were elated to say the least. His ventricles are bigger so he may need a permanent internal shunt but we had expected that anyways.

All of your thoughts and prayers have been so helpful, and once again please keep kicking them into high gear and continue asking your friends and whoever to continue sending good thoughts and prayers our way. Brandon still has a long battle ahead with more ups and downs we are sure, but we went through 36 hours of a pretty big downer but came through today with a HUGE up!

We don't know when we will get home from this stay and they start the 2nd round of chemo on the 21st, but we will keep you posted.

Love, Kris, Jeff and Brandon

Hi all,

well this time around with the 0 counts something is happening. Not sure what? They started an antibiotic tonight to treat meningitis, not sure if it is that but they feel it could be. They can't do a lumbar puncture to check because he is going in for an MRI tomorrow due to some sever headaches. The crappy thing about this is we hope to God it is not the tumor causing the headaches, but certainly don't want him to have meningitis, but that today is the lesser of two evils. They don't think it is the tumor, but since the headaches are so bad they want to do the MRI to check. They think the headaches and fever are due to meningitis, or something like it but again can't check because of doing the MRI tomorrow. Scary and stressful but Jeff, Rich and I are all there with him making sure he is never alone and making sure each of us gets some time away too. Mom is still sick so it is very hard on her not to be there. He got transfused with platelets and red blood cells today so that should help his counts, we are praying it does. We will keep you posted,

Love, Kris, Jeff and Brandon

We just arrived home Sunday afternoon from a 5-day hospital stay.  During that time Brandon had an internal port-o-cath put in (internal IV to avoid being "poked" a lot) he had a lumbar puncture to check for cancer cells in his spine and he had his surgery stitches taken out. All went fine. Lumbar puncture came back negative, great news!  Stitches are out and it is nice not having IV's put into his hands all of the time.

He started his first rounds of chemo on the 28th. He did great (better than we did), but when we got home on Sunday the nausea started, but they have excellent drugs to control that so we are on the mend as far as his tummy is concerned. With this chemo the docs are hoping that it will shrink or change the composition of his remaining tumor (about 50%). There is no guarantee as it could grow during this time but they have had good results with this and we are always praying and very hopeful it will work. The road ahead in April-June will be more chemo, possible second surgery and then radiation. We will start a lot of therapy this week to work on his speech, swallowing, and walking skills.  All of those took a hit during surgery but we can already see him bouncing back!  We go in again Friday of this week for another chemo treatment and then will have a break until the 21st of this month when we start another 3-week cycle. Brandon is pretty frustrated with all of this.  Most comes from not being able to eat as he is eating through a tube until his swallowing skills improve.  He got pretty angry at having to be hospitalized again but we try our best to keep him distracted.  But, he is very smart and often sees through our distraction techniques and doesn't budge an inch.  We have to remember he is only 4 and what 4-year old really comprehends what is going on or even should.  We have been lucky to have hooked up with great "Child Life Specialists" at the hospital who try to make this easier for him.  We have a ton of family that visit and that helps.  Grandparents have been up from AZ an TX, now he wants to go see them!  Grammy and Papa have been with us every day and that has been so comforting and helpful to all of us.  He had great visits this week from friends and family that brightened his spirits.

Kris and I are doing well.  We take care of the day to day which has been constipation and nausea.  We have Brandon at the best hospital with the best docs so we know he will make it through this.  We know that God would not give us more than we can handle. What we have discovered is that we feel pretty close to the edge, but with the support from all of you we will handle this, so thank you.

Once again thanks for the e-mails, calls, gifts, visits and support.  We know that Brandon is in a lot your thoughts and prayers.  Our specific prayer this next few weeks is that God continues to give us the peace we need to make good decisions and to stay strong for Brandon and that he makes sure the chemo is reaching his tumor and that it is shrinking it daily.

Love to you all,

Kris, Jeff, and Brandon Brauns

Dear Family, friends and new friends,

Kris and I wanted to update you on Brandon's condition and to thank all of you for your love, support, and comforting thoughts and prayers during this difficult time. Kris, myself and our family have been moved beyond words by all of you. This has been a trying 18 days to say the least, but having all of you in our lives has given us much needed comfort, strength, peace, and most importantly, hope.

Brandon had his surgery on the 10th. The surgeons were with him for about 12 hours and he did amazingly well. They were able to remove about 50% of the tumor. It is unfortunately a very nasty tumor in a very sensitive part of his brain. It is called an Ependymoma, it only occurs in 3-6% of the 2200 tumors diagnosed in children each year in the US. He has done great in his post-op recovery. We were able to come home on the 20th and that has been the best medicine for all of our spirits!

He will begin a 6-week course of chemotherapy this Friday, March 1st. It will be done at Children's on an outpatient status, for which we are so glad. The hopes are that this treatment will shrink the tumor making it possible to perform a second surgery to remove more tumor and hopefully all of it. He will then proceed to radiation therapy at UW in hopes to destroy the remaining ependymoma cells. While the statistics are not on our side, we have enormous hope that Brandon's treatment will be successful. This is going to be a long and challenging journey, but we are so blessed that Brandon is being treated by one of the best Neurosurgery and Oncology teams in the world!

All of you have been sending your thoughts and prayers to Brandon, and we will tell you it has helped, so NOW is the time to continue kicking those thoughts and prayers into high gear!!! PLEASE keep sending those positive thoughts our way, keep the prayer chains going, continue to ask your churches to include him in their prayers and, as always, keep him in yours.

There is no way we would have made it through this thus far without your support. Your words of hope and support in cards, by phone, by e-mail, and in person have been very helpful and encouraging. The gifts have been so great for Brandon as his mobility has changed. He doesn't let his stickers out of sight and he is quite the card shark at Go Fish! Thank you for all of the gifts and cards.

Again, all of our thanks and love to all of you,

Brandon, Kris, and Jeff Brauns

(Please forward this message to all those that have kept us in their thoughts and prayers and/or had have sent items of comfort, we want to thank everyone and are sure we missed a few on this e-mail so your help is appreciated)

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Hi,

this e-mail is being sent to you with some bad news from our family. I am sending it because you are someone important to me and my family but under the circumstances I have been finding it hard to make all of the calls.

Our son Brandon was diagnosed with a brain tumor on Tuesday. We will take him into surgery Monday morning. This will be a long haul for our family but we are praying and keeping our strength up for Brandon.

Please pray for him, especially Monday. We would love your support and to hear from you. I again apologize for this informal nature but we are a bit overwhelmed.

We can be reached at 425-486-3104 and will be at children's hospital in Seattle next week.

Kris