12/9/2003
Brandon Update - 12/9
Brandon's Updates - 2003
Brandon's 2004 Updates
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12/9/2003
Brandon Update - 12/9
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11/19/2003
Brandon update and MRI results! 11/19
11/15/2003
Brandon Update - we need your help
11/13/2003
Brandon update! 11/13 - GREAT NEWS!!!!
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10/26/2003
Brandon Update - 10/26
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10/3/2003
Brandon Update - October 3 - GOOD NEWS!!
Hi all, this e-mail is coming to you from Memphis!
GOOD NEWS ALL AROUND!!!!!
1. MRI showed that everything is stable!!! All looks the same from the last one! YEAH!!!!
2. BRANDON HAS BEEN CLEARED TO EAT!!! Oh my gosh! He is so excited as are we! He had his swallow test today at 2:30 pm and he did just great! He needs to stay away from thin liquids that move too fast but he ate spaghetti o's, watermelon and applesauce when we got home! It will be fun going to the grocery store and shopping! He will still eat out of the tube in his tummy but we will basically cut in half what he does through there and get the rest of what he needs through his mouth!
3. All of the docs and nurses were so happy with his improvement! They all said he looks soooooooo much better! And he does. It is hard for all of us that see him daily to notice the differences, but it is obvious how well he is doing. It is obvious that some of the cranial nerves are coming back and should continue to improve. So for now it is a wait and watch but he should continue to do well!
4. Physical Therapy, Occupational and speech are all so pleased with him. He does not need to continue with PT or OT. He is a normal little boy and doing well! One of them even said he looks sooooooooooooooo good that they will send other kids to our house to rehab!!!
One of the highlights was just being back at St. Jude. It was so comforting getting back to Children's when we returned to Seattle. Same thing here. When we walked back in you just feel so safe and at home! It was awesome seeing all of his Docs and especially his favorite nurses! He got the biggest hug from Michelle and we got teary seeing them together. Then we went down to the recovery room and all of the nurses cried when they saw him. It makes Jeff and I feel sooooooooo good! We travelled up to the second floor and saw Amy, Krisha, Sarah and Crystal; all of whom feel like family!!
When B found out he could eat today he went crazy!!! He was dancing and singing, we hugged Allison his speech therapist! He went to the nurses lounge and knocked on the door to try and find Michelle. She was not there but Cassandra his other favorite was there with all of the others. When he told them he could eat out of his mouth they cheered, clapped and cried! They all said this is why they work where they do! See the miracles that walk through there everyday!
We have been staying with David and Julie our family away from home! So good to be here with them. We were hoping to hook up with Dee and other friends but so tight on time! Brandon has been having a ball taking care of their dogs and playing! Brandon is so cute with the two of them, we need to get them out to Seattle! We have been able to visit with the Sterlings and Grannans. Both families are still in treatment with their kids but Kailee is starting a successful round of high does chemo and Bennett gets to go home and will start a successful chemo drug also!
Brandon played with his "Southern Bell Girlfriends" Mimi and Ginny and wants to go over there again tonight! They are the cutest kids! Brandon learned how to drive many vehicles last night and cruised around with Mac on the 4 wheeler! He wants to go over and play again tonight!
On Wednesday night Brandon had a real treat: He went flying with Reid (Fed Ex) in his private plane!! What a great time for all of us especially B! They were up for 30 minutes while we watched him and Reid buzz us 40 feet off of the ground! He told Reid he is going to be a pilot when he is older!
We are heading out to dinner with Julie and David and looking forward to a relaxing day tomorrow before we fly home! All in all we are on cloud 9, literally! I think Brandon has put us all on cloud 9! Even Dr. Merchant said we made his day! Man, I wish you could see our faces, this has been a day FILLED with good news and 5 days of fun and excitement while seeing all of those folks that took such good care of us while we were out here!
Well can't wait to get home, we miss you all and will be home Sunday around noon!
Love,
Kris, Jeff and the eating machine Brandon!
P.S. We have several pictures to share and will send them when we get home.
21 September 2003
Brandon Update - 9/21
What a fun day yesterday! We were so happy to get to see everyone, and for that matter, meet a lot of you for the first time! We appreciate you taking time to come over as it means a lot to us to have the chance to thank you in person for your love and support. For all of you who could not attend but were there equally in love and spirit another huge hug and thanks! BIG thanks to Bumpa and Grandma T from San Antonio for coming up!
Jeff had friends he worked with over 6 years ago come by. A special visit from Greg Gifford all the way from Portland! Kris had friends she has known since grade school! Many neighbors came by, and even ones we did not know but were on the updates, we are so touched and blessed!
Brandon had a ball "manning" the taco line. He made a "mean" taco for his guests and was able to sneak in some bites himself!! ON that note his next swallow test will be 10/3 when we are at St. Jude. We know he has made some strides, probably not full on eating yet but getting closer! His strength is greatly improving and even some of his cranial nerves are showing improvement in his face! And of course he has a full head of hair again!
Then his buddies arrived and it was "Grand Central" play time. Those kids went at it for hours then all crashed in front of Scooby-Doo. That was the quietest part of the day! B crashed at 9 and I don't think moved all night. Hope the rest of the kids did too!
Jeff and I had a ball ourselves! What a fun day to kick back with friends, family and neighbors. People ask if we are back to normal and yesterday was an example of that. We will always get anxious around MRI's to check if the tumor has started growing, those are not easy days. But compared to the last 8 months the 80 some odd days in-between the MRI's are to be like yesterday!!!
We are so lucky to have had this day to celebrate. It is uncertain if you ever get "out of the woods" with this disease so we figured we are pretty darn lucky today to be doing as good as we are, so why not party! "Live Large" because you are not given a guarantee!
We will head to St. Jude on 9/30-10/5. We will certainly e-mail everyone with a report once we know from the docs. As we learned last time we need to be patient for them to properly review everything!
Love to all,
Kris, Jeff and Brandon
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9/15/03
Brandon Update - Please join us this Saturday, September 20th!
9/8/03
Brandon Update! - September 8
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8/29/03
Brandon Update - August 30 and 9/20 Party reminder!
Well we received EVEN MORE GOOD NEWS in the form
of an e-mail last night from St. Jude. It confirms what Children's said
but it is so nice to hear it again! I have included the e-mail below!
I reviewed the scans. The radiologists here have yet to see them
but they are on the list. In my opinion this represents "condensing gliosis"
or "scar tissue sandwich" - whichever term you prefer. You will see in the
attached slides that in May there was a space next to the brainstem and that
by August this space had already collapsed condensing two walls (yellow and
green arrows) of scar tissue and perhaps a small amount of residual tumor
(aspect on wall of brainstem only - green arrow). I have seen this before
and in any case the residual tumor and or scar tissue can get a bit inflamed
from RT and look like progression early on. Experience tells us to sit tight.
I have never had someone progress at this point. Additionally, the small area
in front of the brainstem where the tumor was wrapped around the basilar artery
appears smaller or stable at the very least! (red arrow). This is another
key finding which helps one to see that everything is fine at this point.
We will see what the radiologists say and get back to you. Hope everyone is
well. TM
We are so pumped!
Open House Thank you and Party for Brandon on Saturday September 20th
from 12pm to 9pm! We want to take the time to personally thank ALL OF YOU that
have supported Brandon during the last 6 months. We also want to celebrate
his bravery and just hang out and have a good time! So, PLEASE mark your
calendar! Come for the whole day or just stop by!! Can't wait to see you
and in some cases meet you!
Brauns
104 236th PL SW
Bothell WA 98021
We will be gone for the next week down in Oregon on vacation!
Love,
Kris, Jeff and Brandon
Hi there, sorry to keep you all out of touch this week. We have not had the chance to talk to St. Jude yet and wanted to wait until we had. But I no longer could put off the e-mail.
We met with Children's yesterday and will hopefully talk to St. Jude tomorrow.
Children's says:
1. The MRI imaging shows the little tumor piece left after the 2nd surgery
to be stable and the same size................YEAH! The imaging around it
appears to be post radiation swelling. They can't be 100% certain but they
are as close to certain as that comes.
2. Dr. Geyer our oncologist in Seattle said, "it would be very unusual for an Ependymoma like Brandon's to grow at this stage".......................YEAH!
We spent a lot of time with Dr. Geyer asking questions and discussing brain tumors in general. He said that although Ependymomas typically come back, sometimes as late as 6 years later, he would put Brandon in the category of hopefully not coming back. That may mean 60-70% chance no recurrence and with pediatric brain tumors we will take that! He also said that today they fight tumors with surgeries, chemo and radiation. Very crude tools that come in and hammer away at the disease hoping not to hammer the patient. He hopes they are 5 years out or so from finding a way to stop them growing all together at the cellular level. Very exciting!
So, we feel better. Still want to wait for the St. Jude report to unwind a bit but I knew you all were waiting to hear.
Monday was scary to say the least. The words we initially heard "that it was bigger" just kick you in the teeth. My heart sank and I faced some thoughts I had not faced since his surgeries. BUT, we were so impressed with the response from both teams of docs. Our favorite nurse from Children's sent a fax with better news even before we arrived home. St. Jude and Children's Fed EXed the MRI's overnight so the review could happen faster. These folks know what we go through and in the midst of their very busy days they treat you like your kid is their only patient.
Through all of this my blessing I found was: "We can't live in the future or we will miss the present". Being scared of the future when I can't control it wipes me out. I decided to take the today I have and enjoy it. I had a friend ask how I was not freaking out while waiting for the results? Although it was a tense time I did not want to ruin the day I was having by stressing about the future and the what if's! The what if's I want to worry about are: What if it rains on our vacation? I better bring alternate activities! What if Brandon does not like sports like Jeff and I? We better get him involved in other things! Dwelling on "What if his tumor comes back" does not allow me to prepare for life. It only depresses me and stalls life. We still are very vigulent in keeping up with science, treatments and brain tumors and being aggressive with his follow up treatment, but after a long 6 months it is time to get on with life!
Other than this week the past few have been great! Jeff and I got away to the "Heaven Can Wait" lodge with friends last weekend, what a blast! We had a tour of Safeco field with Brandon (pictures attached) and his buddies! I had a chance to catch up with old college friends last night for dinner!
Thanks for the calls and e-mails to see how it was going. I hated not sending an e-mail but we were waiting for all of the facts.
If you don't get another e-mail this week it is that St. Jude confirmed that it is just swelling and there are no worries! Please continue to pray and have good thoughts for Brandon as we wait for the next MRI on October 3rd. Please pray for those that are in more dire situations than us. We have so many new friends with sick children that there can never be enough prayers and good thoughts! Luke, Bennett, Kaley, Ashley, Katherine and Megan.
Love,
Kris, Jeff and Brandon
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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
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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!!
Here is the breakout of how the $38,000 was raised!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. Th