Brandon's Updates - 2008 through 2019
Brandon's CaringBridge Page
(maintained by Kris)
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Brandon
passed away peacefully this morning at home, just before 8:30
AM. Kris and I were at his side with his best buddy Jet laying
on the bed and we we surrounded by love and compassion by loved
ones.
I am so very
sad Brandon is no longer with us, but I am grateful that he is
no longer suffering. Even though his quality of life kept
deteriorating these past few months, he still gave it all he had
up to the end. Last Sunday Brandon turned 11 and blew out the
candles on his birthday cheesecake. He enjoyed spending time
this past week with his cousin Ryan and took a trip to Whidbey
Island and shot off a model rocket on Thursday with Papa and his
good friend Marissa.
Without
question he has made me a better person. His life touched so
many, and so many of you touched his life. Saying "Thank You" doesn't begin to express to gratitude that
I feel for your love, friendship, support, and caring for
Brandon and his family on this long journey that began on
February 4, 2003.
A
Celebration of Brandon's life is tentatively scheduled for next
Saturday, March 27 in Bothell, Washington. More information
will follow.
love,
Jeff
Just a quick update,
Yesterday and today is the annual St Jude/KMPS radiothon. He's
down at the station right now with Kris. Listen in at 94.1 FM
or www.kmps.com
Give them a call and make a pledge in honor of Brandon's.
Brandon and I went down to the station yesterday afternoon along
with his friend Sam. He didn't last that long, but wanted to
help out. He put stamps on envelopes and then they surprised
him with birthday cupcakes and everyone sung happy birthday to
him on the air.
Here are pictures from yesterday.
Sunday is Brandon's 11th birthday! We're planning a low-key
celebration this year. Family and some of Brandon's friends
will have dinner at the Keg on Sunday.
Thank you,
Jeff
BRANDON FUNDRAISER UPDATE
SUNDAY MARCH 7TH
WE NEED YOUR HELP! PLEASE SPREAD THE WORD TO THOSE YOU KNOW! REGISTRATIO
$500 CASH PRIZE for the BUNCO WINNER
Our goal of this event is to keep a parent home full time with Brandon.
Kris' company, Skyhawks, has granted her a leave of absence but she can't do
this alone. In this tough economy we are hoping
ALL
of us can help just a LITTLE
to make a
BIG
difference for Brandon. Pl
1. THERE ARE NOW 3 WAYS YOU CAN HELP!
·
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TO HELP BRANDON BY DOING ANY OF THE ABOVE SIMPLY CALL 800-804-350
2.
FREE DAY CARE NOW AVAILABLE SUNDAY NIGHT DURING BUNCO - 5PM-9PM
Cany
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Locati
3305 Monte Villa Parkway
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(425) 486-4072
Ag
Time:
Fee:
Regist
Or go to
www.skyhawk
CUR
·
If you would like to donate an item for the auction please email Jeanne at
Jeanne.M
· Bring your favorite finger appetizer or dessert to share.
·
Than
Jea
Last week Brandon decided to discontinue
treatment. Kris and I completely support his decision. Earlier
in the week Brandon was frustrated when he was reminded about
the infusion appointment on Wednesday. He said he didn't want
to go. Kris then asked him if he knew what no going meant. He
said he didn't and Kris explained that it meant stopping
treatment. He understood and still did not want to go. Maureen
(Social Worker with Stepping Stones) was scheduled to see
Brandon that morning and talked about this with Brandon a little
more. She explained that the tumors would continue to
grow. After two cycles of the Avastin there didn't seem to be
any improvement or stabilization in his symptoms. So the
decision itself wasn't so hard as what it symbolized. It's a
decision/milestone we knew was coming.
Brandon came down with pneumonia last weekend. Thankfully the
antibiotics seemed to have taken care of it. It's the result of
him loosing some ability to control his partially-paralyzed
vocal cord. Hopefully this won't reoccur too soon. We are not
planning/wanting to consider the option of tube feeding (as a
means to prevent further pneumonia). Eating his "pink daddy
cookies" (iced circus animal cookies) and McDonald's milkshakes
are the few things he still enjoys.
Last week my parents were in town - he and I were scheduled to
visit them in Tucson but canceled since he isn't really able to
travel. It was great having them around to spend time with
Brandon. He enjoys doing crafts with Grandma. Also Brandon was
treated to a last-minute visit from his cousin Ashley. She
arrived on Friday from Akron and leaves tomorrow morning. She's
been great with Brandon - helping with his mosaics and sitting
with him. Saturday Ashley, Brandon and I went to see the Harlem
Globetrotters. They put on a good show - Brandon said he liked
it (he was mostly doing word searches or playing DS). The 3 of
us have been taking in the beautiful weather walking along Alki
on Saturday and hanging out at the Edmonds waterfront
yesterday.
All in all, things have been somewhat stable for the past couple
of weeks. Brandon's balance and stability get worse at times.
His legs and feet are quite swollen. He gets frustrated when I
ask him to put his feet up for a bit. It's hard to decide which
things to let go of and which to stay after...
Brandon's friends have been so supportive - he really enjoys
being with them. He's had a few sleepovers during the
mid-winter break. He and I went up to his class for lunch last
Friday before the break. All of his friends are so happy to see
him, it feels good that he has such an excellent group of
friends.
Thank you,
Jeff
Today is the day 7 years ago that we learned of
Brandon's first tumor. It has been a long seven year journey.
There have been devastating lows along with moments of intense
joy - a real rollercoaster of hope and emotions.
Yesterday Brandon was at Children's for labs, to begin his
second cycle of Temodar, and to receive the second infusion of
Avastin. He's been struggling quite a bit the past week. Based
on this, we decided to let he and Cory talk alone to discuss his
treatment. Brandon decided he did not want to continue with the
Temodar. We fully supported him - taking the 5 capsules for 5
days was just too much for him. He didn't really care about
taking the Avastin since his port was already accessed. We're
not sure if the first cycles of Temodar and Avastin did
anything.
Brandon's been sleeping at his mom's house for the past 2 weeks.
It makes Brandon more comfortable to be with her. It's hard to
leave him at the end of the night but I know it is what's best
for him. He is such an amazing little man - through all of his
struggles he still manages to give me his famous eye roll, a
conk on the head, or throw his stinky socks at me at bedtime.
My/our focus is on giving him the best possible quality of life.
Over the years I've written down the funny and toughing things
that Brandon has said. I'm going to include a quote with my
updates. Here's the first one:
August 30, 2003 (4 1/2 years old)
In the morning he said to me, “You need to get some sleep; I’ve got a lot of things planned for today”
Thank you for all of your support,
Jeff
Brandon had
his last day of radiation today!!! He did great as usual, but
is very glad to be done with this. He was joined by a troop of
supporters: Brian, Marissa, Jack and Ryan (friends and
classmates) along with Grammy & Papa, Jason Sanders, and Bob
Jones (Shelton View Principal). Brandon's surprise treat for
the last day was to ride to the hospital in a stretch limo!
Brandon sure enjoyed riding with all of his friends, but
admitted that they got a bit too crazy for him on the way back.
Brandon, Marissa and I celebrated with a juicy steak dinner at
the Keg. He's struggled the past couple of days, feeling angry
and moody. Hopefully being past this big milestone will help
him feel a bit happier.
Below are
photos from the last 4 days of treatment. I've also added more
photos to the
online gallery.
Day 7
Day 8
Day 9
Day 10
Tomorrow
Brandon has labs at Children's and also begins treatment with
Avastin,
a chemo given by IV-infusion. I talked about this with Brandon
this afternoon and explained how difficult for his mom and I to
decide what treatment to choose. I told him that we decided to
try the Avastin since it could be given when he already needs to
get accessed for labs and is expected to not cause and side
effects for him. He said "that's fine". I so much admire his
determination and willingness to go along with the treatment.
He hit a wall part way through the radiation, but has decided to
press on. I hope and pray that this new drug will provide him
with some benefit and give him some more quality time.
Last Friday
Brandon and I went to
Third Place Books
to pick out books for his school library. For Christmas Grandma
& Grandpa (Skip & Judi) told Brandon he could pick out a
selection of books he liked and wanted to have in the Shelton
View library. They also made book plates with Brandon's name
and the school mascot. They coordinated with Carol Johnson, the
Shelton View Librarian, to meet Brandon at the store and help
select he liked to have in the school library. Brandon was
pretty engaged looking through the books and picking out the
ones he wanted to see in the library. Thanks to Carol Johnson
and Third Place Books for your help in making this happen for
him.
Here are some pictures.
Carol Johnson is going to display Brandon's books in the library
in the next few days.
Thank you
for everything,
Jeff
www.brandonsgoal.org
Hi all,
Brandon has made
it past the half-way point in his radiation treatment! He
started last Tuesday. Today was day 6 of 10 - just 4 more
days! We were off to a rough start last week. The first 2 days
went fairly well, but on Thursday Brandon was adamant that he
didn't want to continue anymore. Kris was honest with him and
explained what would happen if he didn't continue - it would
cause his back pain to increase and make him not be able to
control himself. He changed his mind, but on the way to the
hospital he said he didn't want to go. I think Brandon is
really sick and tired of all of the treatment and wanted to put
his foot down. He's also very unhappy and sad about life. He
is sad and frustrated with his body and not being able to do the
things he could just a few months ago.
On Friday Brandon
was agreeable with going to treatment and was in a better mood.
Not sure what changed for him, but ever since he's been a bit
happier. Yesterday and today's treatment were pretty much the
same. He showed up willing and like a true fighter. Brandon
really enjoys having his friends with him for support - it
really helps. THANK YOU for all that have come down so far!!!
Here's a
link to photos from radiation treatment.
On Saturday I took
Brandon up to Vancouver, BC to ride the
Canada line, a
new subway in Vancouver. We had a great time and I really
enjoyed showing him around downtown. On Sunday morning we rode
the skyride up to
Grouse Mountain
and had lunch at the lodge.
Here's some photos of our trip.
Yesterday we met
an 8-year-old girl undergoing brain radiation. She also has an
ependymoma and was just diagnosed in October. She's pretty shy
but we had Brandon say Hi and gave her one of his SCORE cards.
Just 4 more days
of treatment remaining. Kris and I decided to postpone
Brandon's labs and the first infusion of Avastin until next
Wednesday. This will give him a bit of a break and not have to
be at two different hospitals on the same day.
Thanks for
everyone's help,
Jeff
www.brandonsgoal.org
Day 0
Day 1
Day 2
Day 3
Day 4
Day
5
Day 6
The last few
days have seemed to have flown by. I hope everyone had a good
Christmas! Brandon enjoyed his and had a pretty good
day.
Last
Wednesday I met with Dr. Douglas (radiation oncologist) and Dr.
Geyer to follow up on the previous week's discussions about
treatment options, specifically if we should consider gamma
knife. After first discussing the possible benefits of gamma
knife, we came to the conclusion that the potential benefits
didn't outweigh the more certain negative effects such as
high-dose steroids and accelerated symptoms from
treatment-induced swelling. In the end, Dr. Douglas didn't
recommend using gamma knife on any of Brandon's tumors. I was
somewhat relieved to hear this because it would have been a real
tough decision to have him go through another gamma knife
procedure again. We did find out however that the larger tumor
in his spine is a good candidate for conventional radiation
treatment. The reason is the severity of the symptoms it's
likely to cause - back pain and incontinence. He's already
experienced some back pain. We are hoping to prevent the 2nd
symptom as it would destroy his quality of life along with his
dignity. We're hoping to start this treatment this week. It'll
be either 5 or 10 days. Normally it's treated over 10 days. We
also consulted Dr. Merchant on this and he agreed that the
spinal tumor should be treated. We've got a clinic appointment
tomorrow with Dr. Douglas at 10:00 followed by a simulation (pre-treatment
planning).
We're not yet sure when the treatment will begin, probably on
Monday.
On the chemo
side, Brandon started back on Temodar on Monday. It's oral
capsules taken for 5 days once every 4 weeks. He also had labs
which looked real good. We're also looking to add
Bevacizumab
(Avastin) which is a drug that we have been following for quite
some time. It's an
angiogenesis inhibitor
drug which works to stop the growth of new blood vessels -
keeping the blood supply from the tumors. It shouldn't add any
side effects, but is only given by IV and entails a 60-minute
infusion every 2 weeks, so it would mean some additional time in
the hospital. We'd already have to be in every 2 to 3 weeks for
labs, so Brandon would already being getting his port accessed
for at these times; however it's things like how often Brandon
has to get his port accessed that weigh heavily on our decision
how to proceed.
Brandon is
still struggling with insomnia. The switch to a different
anti-seizure drug (Neurontin)
seemed to help, but to a fault. He started complaining about
being tired and lacking energy during the day so we've switched
back to the keppra for the time being. He's not having the
tiredness during the day anymore, but the insomnia has
returned. This is real hard to know what is best for him.
Makes you wonder if all the anti-seizure drugs are worth the
side effects. We're still trying new combinations at bedtime to
see what helps
Part of the
reason I haven't gotten this update out is that Brandon has been
pretty busy lately. First off was the hugely successful Lego
Party on the 19th. Kris' house was packed with guests who
enjoyed seeing Brandon's growing Lego collection. He was quite
proud to show them off to everyone. Thanks so much for stopping
by, for bringing your toy donations, and for making it such a
hit for him!
The next
afternoon, a group caravaned from Shelton View to Seattle
Children's to deliver the toys from Brandon's big toy drive.
Brandon let the group to the volunteer office and learned how
the nurses help Santa deliver the toys in the hospital. KOMO-TV
news was there to cover the event. Dr. Geyer and Cory along
with several of Brandon's teacher from school all came to
watch. Brandon really enjoyed being able to give back to the
kids at Children's. There were so many toys donated that a
bunch were also given to the Ronald McDonald House.
Today
Brandon, Brian Miller, and I took a trip to Tacoma for lunch.
Brandon's favorite restaurant is Chevy's. Unfortunately their
Lynnwood location closed last year and he's missed going to the
"tortilla restaurant". We made it to a Chevy's in September
when he and I were down in
San Francisco.
Turns out there's also a location in Tacoma that we haven't
visited. Brandon talks and talks about our trip to Portland by
bus and train, so I thought another mini-version would be fun.
We took 3 bus routes to get there and came home by 2 bus routes,
Tacoma Link light rail, and the Sounder commuter train. It was
an adventure, especially getting Brandon and his scooter on and
off all of the vehicles, but it was worth it! We all had a
great day and the food was as good as we remembered. Brandon
was very cute, after lunch he wrote me a note on a napkin that
said "Thank you for the food"
A request from Brandon:
Brandon asked if he can have a friend come with him to the
hospital for his radiation treatments. He would really enjoy
having a friend with him for support and to keep him company.
Kris is coordinating the schedule - Please let her know (kbrauns@skyhawks.com)
if your kids are able to make it during the next couple of
weeks. Thank you!!!
Links:
Lego Party & Toy Drive Photos
KOMO TV News segment on toy drive
NOTE:
Click the ="Video" tab to watch the segment
Christmas Pictures
Tacoma Bus Adventure Photos
Have a fun
and safe New Year. Thank you,
Jeff
Sorry for taking
a while to get another update out. We didn't meet with the
doctors until this Thursday as they were not able to discuss
Brandon's case at tumor board until this week. We're not going
to start any new treatment until after Christmas (to give
Brandon a break) so it was fine to wait a week. Most of the
discussion was centered around trying to maximize Brandon's
quality of life. Consequently we're not looking at any chemo
drugs that involve moderate or significant side effects.
Surprisingly the tumor board discussed Gamma Knife as a viable
option to the tumors that present more of an immediate threat.
For chemo, we are considering Temodar again, but taken daily at
a lower dose (the last time he was on Temodar it was given for 5
days on a 3-week cycle). The Temodar shouldn't produce any real
side effects for Brandon and it's a known medicine since he's
been on it before. The option of no treatment was talked about
a bit. We're not there yet and Brandon wants to continue to
fight. So we're focusing on a treatment that has some hope of
providing more time for him but that will not sacrifice
Brandon's quality of life.
Speaking of
quality of life, Brandon's been really struggling. He is having
increased difficulty getting around. He's pretty wobbly and
needs help maintaining his balance. He has fallen several times
and you can see the emotion in his eyes - frustration, anger,
sadness, despair. It just kills me to seem him have such a hard
time doing the things most all of us take for granted. Through
this feeling of overbearing despair Brandon manages to push
through at times. He and I had a good afternoon yesterday
Christmas shopping and then watched a movie he likes (Santa
Buddies). During the first 10 minutes he stopped the movie at
least a dozen times to tell me all about the characters. Then as
we were getting ready for bed he asked me when the Seattle Storm
were going to play again he then said, "You know what I’m dying
for – that red licorice”. So it's these moments that help save
the day. One other thing Brandon's dealing with that isn't
helping is that he's been having a hard time sleeping the past
week or so and also is experiencing pain in his back. He cannot
fall asleep and also wakes up during the night. Thankfully
tonight he fell asleep easily and is so far (1:00 AM) sleeping
well.
Last Sunday
Brandon and Kris were up at Whistler for a dog sledding event
they won on KIRO radio. Brandon had a great time on the dog
sled and exploring the village up at Whistler. On the way back
Brandon had a seizure. It started with a twitch in his right
eye and then he slowly lost vision in that eye. The seizure
itself lasted about 45 seconds. Thankfully he recovered quickly
(he was hungry within a half hour) and was able to come home
after an exam at a local hospital. We started him back on the
Keppra that night. We had finally stopped the Keppra just over
a week ago. We knew there was a slight risk of him having a
seizure but we wanted to see if the Keppra was responsible for
his low mood. Turns out that it was likely a contributing
factor as Brandon's mood seemed to improve after he was off of
the Keppra. We're now in the process of transitioning to
another anti-seizure drug, Neurontin, because it doesn't have
the side effect of affecting moods. The Neurontin apparently
also has a sedating effect, so it may help with his insomnia.
Brandon's toy
drive for Children's has been quite a success! The press came
to Shelton View (Brandon's school) on Wednesday to cover the
final day. Here's a
link to a Bothell Reporter news report.
KOMO TV aired a segment on their 6:00 PM news. I'll try to post
a copy on Brandon's website. On Monday afternoon Brandon and a
group from Shelton View will be delivering the toys to
Children's Hospital. KOMO TV is planning to be there to film a
story for the 6:00 PM news.
Last Tuesday
Brandon and I went up to Everett to watch the 787 Dreamliner
make its first flight. Brandon and I were excited to witness
this historic event. We went inside the Future of Flight to get
a snack and saw Roy, the center manager. He recognized Brandon
from the big birthday surprise and offered us to join him behind
the building for a closer viewing spot. It was so great to be
able to do this with Brandon. I found myself reflecting on the
morning and the joy it brought me.
Here are some pictures.
Sunday is
Brandon's LEGO and SURVIVOR PARTY!!
When:
Open House, 5 to 8 PM
Where:
104 236th Pl SW, Bothell
Please come by to
see his amazing collection of Lego he has built over the years.
Brandon is very excited for this party and has been planning it
for weeks! If you are able to bring a gift for a Children's
Hospital child, please wrap it if possible. Attach a tag or
card that states if it is for a boy or a girl and the
appropriate age range. Brandon and his classmates have
collected so many gifts that some of the gifts are going to be
taken to the Ronald McDonald House where then need to be
wrapped. Thank you for your support in this great event.
While it seems
like this month has been filled with bad news and setbacks. I'm
looking forward to Sunday night and Christmas with the hope that
Brandon has a great time and is able to be happy. I hope all of
you have a safe and happy Christmas.
Jeff
I just don't know what to say. Brandon's MRI was not good.
There are many new tumors - about eight, plus some of the
existing ones have showed progression. None are in a position
to cause any immediate harm, but it's certainly evidence that
the notch inhibitor trial drug didn't work as we hoped.
So what we've told Brandon is that he finished his 2 months on
the trial and that we're going to take a break for a few weeks
over the holiday - he does not know about the new
tumors. He was happy to look forward to a few weeks off. Kris
and I are meeting with Dr. Geyer tomorrow afternoon following
tumor board. At this point it's really a matter of finding
something (or not) that will give him more quality time without
having side effects that significantly reduce his quality of
life.
He's having a good day today and the past week's been fairly
decent. He's looking forward to school tomorrow and the toy
drive for Children's.
Thank you for all of your thoughts, energy, and prayers today.
Jeff
Hi all,
It's been about another month since my last update. I've just
not been in the mood I think - the past few weeks have been hard
as Brandon has been sad and hasn't had much interest in
anything. The past few days have been pretty good though. He
and I had a good weekend decorating the tree and wrapping
presents. We stopped the
Keppra on Friday. We were planning to stop it in October
but the Dr's at Cincinnati didn't want to make any other changes
while he was starting the notch inhibitor trial. Since he did
so well after the first cycle they said it was ok to stop it.
We're hoping that the Keppra will improve his mood and quality
of life. He's been so down the past few months that we've
consulted the treatment team about considering an
anti-depressant. We'll first wait to see if there's any change
after the Keppra gets out of his system before considering any
other meds. Speaking of the notch inhibitor, Brandon finished
the 2nd cycle on Friday. He continues to tolerate the drug
quite well with no side effects other than some fatigue.
I'm happy that Brandon is continuing to enjoy going to school. A
few weeks ago he received a donated scooter from the Donor
Closet. This has really helped Brandon be more independent, he
loves taking it to school. Last week was able to use it to play
Piranha Island, his favorite game at PE. A couple of weeks ago
Cory attended a meeting with the Shelton View staff to discuss
Brandon's current situation and answer their questions. At the
meeting Brandon's Learning Center teachers came up with the idea
of having Brandon sponsor a toy drive for Children's Hospital.
He was very happy to take part! Next Monday, Dec.
21 [corrected
date], Brandon
and a group from the school will deliver the toys to Children's.
Brandon's MRI is Tuesday at 11:00 AM. This is a big one - we'll
find out if the trial medicine
is working. We are all very anxious about this scan and the
implications that follow. I'd like to ask you to please say a
prayer and/or have positive thoughts for a good result. We meet
with Dr. Dr. at 1:30 and will share the news after the
appointment.
Thank you so much for all of your hope and support,
Jeff
Wow, it's
been about a month since my last update. I've been meaning to
get one out for quite a while but just didn't get to it...
Lots has
gone on in the past 4 weeks. This week (Wednesday) Brandon
started his second course of the Notch Inhibitor trial drug here
in Seattle. Cincinnati is a great hospital, but we're certainly
glad to be back home for treatment. He continues to do quite
well on this new drug. We haven't seen any side effects other
than some increased fatigue. Now that it's the 2nd course he
only needs to have clinic visits monthly, however he still needs
labs taken each week. Brandon is sure glad to have less
appointments! Labs will be on Wednesday mornings for the next 3
weeks. He'll then have an MRI on Tuesday, December 8 following
the 2nd course. This'll be a big one.
Brandon and
I made 2 successful trips back to Cincinnati for the 2nd and 4th
week of the 1st course. He caught a cold in week 3 and didn't
have to go back for this visit, we were able to get the drugs
sent to us in Seattle. Our trips were both a quick out-and-back
with a few hours to spare. Both trips we headed straight for
Graeter's Ice Cream to get Brandon a milkshake. They are very
nice at the store. The manager recognized us and gave Brandon a
Graders t-shirt. We also made it to the Cincinnati Children's
museum and the Fire Museum. I'm very grateful to everyone who
helped Brandon and I with our travel expenses. It made a huge
difference to not have that added financial burden. Thank
you!!!
My parents
along with my sister and her 2 daughters came up to Seattle for
Halloween. It was great to see everyone! Brandon and the
girls looked forward to seeing each other. This year Brandon
decided to be a fighter jet pilot. He drove around the
neighborhood in his jet, a very cool customization of his 4
wheeler. He was excited for Halloween but wanted to go back in
after a dozen houses. When he got back to Kris' he wanted to
take the decorations down and tell trick or treaters that they
were closed. I felt real bad for him - I think he was really
feeling how he couldn't participate like in year's past.
Last Sunday
Brandon and I were treated to tickets to the Seahawk game.
Maureen with Stepping Stones was able to get the tickets for
us. The Seahawks provided us with club level seats, a #8 game
jersey for Brandon along with a "12th Man" flag autographed by
Matt Hasselbeck. Brandon was more involved with his word
searches than with the game, but we both had a great afternoon
together.
We were able
to get Brandon a H1-N1 flu shot and since then Brandon's been
going to school most days. I think he enjoys being in school -
it's a "normal" thing for him and I think it must feel good for
him to be there with all of his friends. We've had a lot of
help in the classroom. Each day Brandon has someone with him in
class. It makes him feel more comfortable to have the extra
assistance when needed. Thanks for donating your time!
The Walk of
Hope was such a great experience. The weather cleared up and we
were treated to a beautiful morning, complete with an appearance
by Captain Cougar!. This first annual event raised $220,000 for
brain tumor research!!! Thank you for your support and your
contributions! These donations will stay in Seattle for
research at Children's & Fred Hutch! Team Sammamish (my
coworkers) had a great showing, thanks to all of you for coming
out. Brandon won 3rd prize for the kids fund raising. He gets
to go to the Four Seasons and cook with their head pastry chef!
Brandon was really hoping for this prize and he loves to cook!
Here's links
to pictures:
Cincinnati
(updated)
Run of Hope
Fall (Halloween, family visit, Seahawks game)
Please
continue to think good thoughts and pray that the Notch
inhibitor drug is working for Brandon.
Thanks to
everyone...for everything. You've given me much hope and
relieved me of a lot of stress.
Jeff
www.brandonsgoal.org
Hi from Cincinnati,
Brandon is doing well. He's taken two of the three initial
doses of the Notch Inhibitor trial drug (MK-0752).
We've pleased that there's not been any side effects so far. As
usual, Brandon was a champ with everything. As a part of the
study, they took several blood and CSF samples yesterday
following the initial dose. The CSF samples were taken form his
Ommaya reservoir. This time it hurt when they accessed the
Ommaya. We didn't expect this as he didn't experience any pain
when it was last accessed last November. The neurosurgery doc
thought that there was no pain last time since it was placed
recently and the nerves had not yet recovered following the
placement surgery. Even though everyone was extremely nice and
helpful, Brandon got quite anxious to get out of the hospital
(he had to be inpatient for 24 hours as a safety precaution).
Last night he got pretty restless. He was discharged around
1:00 this afternoon and his mood improved dramatically. We then
went straight to
Graeter's to get a milkshake for him. He told Kris the
other day that he just can't help wanting to have a milkshake
every day. I had the best pumpkin pie ice cream that I've ever
had. We made a quick visit to the Cincinnati Children's museum
this afternoon and then back to the hotel. Brandon's very
homesick and can't wait to get back home to be with his
friends. He really misses Jet. We fly back to Seattle on
Thursday.
I'll be coming back with Brandon for Week 2 (October 20) and
Week 4 (November 3) of this first cycle. Kris will come back
with him on Week 3 (October 27). We heard good news today -
Seattle Children's contract issue is resolved so we'll be able
to continue with subsequent phases at home in Seattle!
Cincinnati Children's is an outstanding facility, but we're glad
that our travel is limited to only a few more trips. I've got
my flights booked next week and am working on the Nov. trip. A
huge thank you to all that have offered to donate your airline
miles. Your gratitude is very much appreciated.
On Monday we went to St Jude to visit. We got to see Dr.
Merchant, his nurse Christy, nurses Cassandra and Lee, and
Kristin from PT. Monday at St Jude was better for me than the
experience on Saturday. It still felt different with all of the
changes. Dr. Merchant mentioned that it still feels different -
and they've been in the new clinic for over a year. It's so
much quieter than before. there was much less space and it was
more chaotic.
The drive back to Cincinnati on Monday was nice, no rain this
time. Brandon's latest thing is word search books. He worked
on them pretty much the entire 8 hours we were driving from
Memphis.
Here are links to pictures I've taken during the past week:
St Jude Survivors Day and Memphis visit
Cincinnati Children's
We're looking forward to the big event on Sunday morning, the
first annual Run of
Hope. There's been a great response and the event is sold
out!
See you back in Seattle,
Jeff
Hi
everyone,
We made it to
Cincinnati on Wednesday (or actually on Thursday morning - we
had an overnight layover in Chicago). We were able to get the
flights changed to fly to Cincinnati. Alaska Airlines was
extremely helpful in making the last minutes changes and even
waived the fees. Thanks Alaska!
From the airport
we went to the hospital and explored a bit before our
appointment with Dr. Fouladi at 11:00 AM. Cincinnati Children's
is an outstanding facility! I was very impressed with their
level of care. Everyone is extremely friendly and very patient
focused - even their cafeteria is very good. Dr. Fouladi
examined Brandon than went over the study protocol and answered
our questions. We found out that Brandon'll be inpatient for 24
hours following the initial chemo dose (they're just being very
cautious that there are no unexpected side effects). Speaking
of side effects, she explained that they really haven't seen
much other than some fatigue. Most are not even needing to take
Zofran (anti-nausea wonder drug) - it was sure nice to hear that
Brandon should feel better under this new drug. The next 2 days
of meds will be just a quick clinic visit and then we fly home
on Thursday at noon. Each cycle is 4 weeks long. For the
remaining weeks of the first cycle we just need to be in town
for one day for an exam and pick up the meds. This was great to
hear as it will let Brandon keep as much of his regular schedule
as he can back home. The down side of learning more about the
study is hearing the actual results, many of the patients on
this study have experienced progression. Obviously this was not
encouraging to hear, but the first groups of kids were on lower
doses. Brandon will be on a higher dose - they are now using
the same dose to be given when the study advances to the Phase
II stage. We're hopeful that this increased dose will be more
effective in stopping the tumor growth.
Unfortunately
Brandon's first visit to Cincinnati had a few hiccups. On
Thursday the MRI took 2 hours! He's used to brain + spine scans
taking 45 minutes back in Seattle. The technician explained
that it took so long since they were taking a more comprehensive
set of scans. Brandon watched a movie during the brain scan but
hit his limit after 90 minutes in the scanner. He was crying
and very frustrated and just wanted to get out of there. It
took a little break and some coaching to get him calmed down for
the spinal scan. I felt bad that we didn't check on the scan
time ahead of time. We'll do the next scan sedated for sure.
Then he was in for a lumbar puncture. Brandon did great; he
woke up from the anesthesia very quickly and boy was he ready to
eat! They had him order breakfast before the procedure and his
food was ready for him when he work up! He woofed down his eggs
and sausage. Then the nurse was getting ready to de-access his
port. We were all talking with her about a
very good ice cream place in town
and she forgot to flush his port with heparin. She felt
terrible as soon as she realized it. Brandon was very upset that
he had to get re-accessed and another poke (the heparin is
needed to keep the port from clotting). She kept apologizing to
Brandon and said she'd get him a treat for her having to poke
him again. As we were getting ready to leave a child-life
specialist came in with a big Indiana Jones Lego set for him!
Truly over the top care!
We left the
hospital and hit the road for Memphis and Survivor's Day at St
Jude. It was a nice but long (500 miles) drive down through
Kentucky and Tennessee. Several strong rainstorms made the
drive challenging but we arrived safe around 5:00. We had
dinner with Julie and Mike along with Mac & Mary and Mimi and
Ginny (girls Brandon's age that he met during our stay back in
2003). It was so good to see these great friends again!
Today was
Survivors Day. Brandon has wanted to come back for this for
several years and I was really looking forward to this event -
mostly for Brandon but I was also looking forward to being back
at St Jude. As it turns out it was a bit of a letdown for me.
I think on several levels. First was that Brandon didn't seem
to enjoy or get as much out of it as I had hoped - or what I had
envisioned. Most of the events were geared towards older kids
and adults and Brandon lost interest after a couple of hours. I
guess I was expecting too much considering where Brandon's
currently at. I wanted so much for this to be a special day for
him...and maybe it was in a way, it's just hard to tell.
Another thing that felt off was that parts of the hospital are
different. A new building and cafeteria was built since we were
last here so it didn't feel the same. We walked down the hall
where the radiation oncology clinic and waiting area used to be
and there's a new wall there. We must've spent well over 100
hours sitting in those chairs. It's all for the better, the
clinic moved to a new building with a state of the art facility
but it just didn't feel the same. Then as I was eating lunch in
the new cafeteria and seeing all of the other survivors I was
sad thinking about Brandon's future and that this may not make
it back for another Survivor's Day. Shit! - sitting here typing
this is getting me sadder - I struggle at time with how much to
share in my updates. I want to give a balanced view of how
things are going - the good and the bad, so I try not to hold
back the bad feelings. Otherwise it feels more like reporting
and just talking about the good stuff.
Ok, back from a
break. Tomorrow (Sunday) we're planning a visit to the Memphis
Children's Museum and another visit with Mimi and Ginny, and Mac
& Mary. We don't need to be back in Cincinnati until Tuesday,
so on Monday morning we're going to go to St Jude so we can
visit everyone. We're planning to see Dr. Merchant along with
Brandon's favorite nurses and Amy from Child Life. We also hope
to get a meeting with
Dr. Gilbertson,
a St Jude researcher that is one of the leaders in studying
ependymomas. We're planning to head north by noon so we can
stop by one of the many caves in Kentucky for Brandon.
Brandon's been
having pretty good mornings - waking up in a great mood. Today
he woke me up by shooting a syringe of water on my back! I love
seeing him this way. Mos
Thank you so much
for everything you've said and done for Brandon these past few
days. I'm so grateful and appreciative for the offers to donate
airline miles!!! This will help make all of the travel so much
easier on us. Thank you, thank you!
I'll have another
update from Cincinnati.
Jeff
Well, we were dealt another blow this afternoon. There's a new tumor growing at the back of Brandon's head (HE DOES NOT KNOW THIS). The spot was visible in the last (8/31) scan as well, but wasn't known until today. What does this mean? There's no immediate threat from this new growth (about 7 mm in the upper back just right of midline). But it does tell us that the current chemo drugs are not working.
Let me back up a bit. The reason for today's scan is that Brandon was on a wait list for a Phase I trial that recently opened up. We've been following this NOTCH Inhibitor trial for a while and are hopeful (here's another summary of this trial). Dr. Olson at Fred Hutch is involved with the research. We got word yesterday that a spot was available for Brandon. We wanted to get another scan to help us decide what to do - stay the course with the current chemo (vincistrine, irinotecan, & temodar) or switch to the trial. So the results of today's scan helped make the decision for us. We're going to start Brandon on the NOTCH trial. Unfortunately both Children's and UCSF (the next closest Children's Oncology Group hospital) have yet to completely resolve the contracting issues associated with this trial. So can't do the study locally and we'll need to go to Cincinnati Children's for treatment. The study chair, Dr. Fouladi at Cincinnati, has been extremely helpful to us. She and Kris have been talking frequently these past few days trying to get everything worked out. As of tonight, they want us to be there on Thursday for registration including a baseline MRI, labs, and a physical (must be completed at the study hospital). The study protocol requires that you start within 7 days of being given a reservation. Next treatment would begin the following Monday or Tuesday (again in Cincinnati). The treatment is pretty simple - 1 oral tablet of MK-0752 each day for 3 days, repeated on a weekly cycle. (Take the Pill on days 1, 2, & 3 then nothing on days 4-7). After the first 4-week cycle we expect that the Seattle Children's contracting issue will be resolved so we can transfer to Seattle for continuing treatment on this trial. The most likely side effects with this drug are nausea, diarrhea, and vomiting and . We expect to be able to manage these with Zofran and other meds as needed. Overall, we don't expect the effects to be much different from his current chemo drugs.
We're not yet sure how we'll get to Cincinnati... We're still planning to go to Memphis for their Survivor's Day event on Saturday. Brandon is really looking forward to it and we don't want to take this away from him. Our flight leaves tomorrow (Wed) afternoon. It's 500 miles from Memphis to Cincinnati, so driving's the easiest option. Once we get further information from Cincinnati in the morning we'll might try to change our flights to go in and out of Cincinnati. At least I'm comfortable working the last minute travel logistics - that's the easy part compared to everything else...
We'll need to travel back to Cincinnati for treatment once each week for the next 4 weeks. If anyone is willing to help us with the travel and donate miles we'd be very appreciative! Kris and I will probably switch off on making the trips for expense and work reasons.
Please think positive thoughts that this new drug will be successful for Brandon as for our safe travels. I am so grateful for all of your prayers and support.
Jeff
Hi everyone,
This afternoon we had a
meeting with Dr. Geyer to ask questions and talk about our next steps.
Brandon's current chemo regimen (temodar, irinotecan, and vincristine)
appears to be at least slowing the tumor progression. However, we want
to be prepared to move to the next option should the next MRI scan show
additional tumor growth. We're looking into getting Brandon on a wait
list for a Phase I study. If a spot opens up we'll need to get a MRI
first both for eligibility with the study and for us to find out how
he's doing following the August 31 scan.
Last week Brandon and I
took a short trip to San Francisco. The motivation for the trip was to
let Brandon take a ride on a subway (no, the new Link light rail in
Seattle doesn't count). In addition to several trips on
BART, we visited the newly redone
California Academy of Sciences, took a tour of Alcatraz, rode the
cable cars, and took a very fun go-kart tour of the city. Brandon did
real well overall, but it was a challenge to keep the activity level to
a point where it wasn't too much for him. Just walking a block to catch
the cable car was rough for him at times. During the Alcatraz tour I
remembered taking the tour with my dad back when I was right around
Brandon's age.
I posted pictures of the trip online.
Brandon's been happy to
be back at school this week. He was out for about a week due to a cold
and the flu going around his class. He's started back with the Learning
Center (IDP) and is really doing good at math.
Next Wednesday we head
back to Memphis to visit and for Brandon to participate in the St Jude
Survivor's Day event. Brandon has been wanting to go back for this
event for several years. We're really looking forward to seeing all of
the special friends we have back there. It's been almost 4 years since
we've been in Memphis.
Most days Brandon seems
to do ok, although there are frequent times were he gets frustrated
because he can't decide what he wants to do, or what he wants to eat.
Other times he's just in a down mood. It easy to feel so helpless in
these situations - I want so much for him to
at least
be able to enjoy most of his day and not be frustrated so often.
It's just a little over
two weeks until the inaugural
RUN of HOPE.
WHAT: 5k
run -or- 3k walk
WHEN:
Sunday, October 18
WHERE:
Seward Park, Seattle
Join the
"Brandon's Goal" team
and come out and run or walk with us! The proceeds from the Run of
Hope will be used to fund pediatric brain tumor research here at
Seattle Children’s Hospital and at Fred Hutchinson Cancer Research
Center.
Register for the event:
www.runofhopeseattle.org
Donate to Brandon's team is you can't participate:
www.firstgiving.com/jeffbrauns
One last
thing: This Friday, October 2, is
LIVESTRONG Day.
Help spread awareness by wearing yellow. There are also many LIVESTRONG
events located across the country to raise awareness about the fight
against cancer. Learn more at
www.livestrongaction.org
That's it for now.
Jeff
Hi all, I wanted to share the latest:
On Wednesday we were real discouraged to hear that
Brandon's HLA typing was not a match for the NYU vaccine trial. I
was hopeful that this study may have been a good treatment option
but I also thought it was somewhat of a long shot. At least we have
a plan we're continuing to move forward with; on Wednesday Brandon
started his 6th chemo cycle and he finished last night. He's doing
pretty will but struggling with diarrhea. I say struggle, but he
really doesn't say anything about it or complain. I just know he's
in the bathroom a lot (and yes, I'm certain he'd not be
happy knowing I shared this). I know I've said this before, but he
is so good about taking the chemo meds. He's told me how
much he dislikes the Keppra. I tasted it recently and have to agree
- it's pretty nasty. This week I asked him which was worse, the
Keppra or the Irinotecan. He told me that the Irinotecan was way
worse than the Keppra. All the more how impressive it is that he
just takes his meds with no complaints.
Yesterday Brandon participated for the 5th time in the
Ride
for Kids. It was a beautiful day riding through the farmlands
around Carnation and Duvall. Brandon was riding on the first bike
after the lead cycles. Kris and I rode behind in a Harley driven by
Ned, Kris in the sidecar and me in the back seat. It was a pleasure
to watch Brandon up close Brandon rode for the second time
with Brian Cassady, a Snohomish County motorcycle officer he met at
the
Chief for a Day last year (Brian is the 3rd from the left in the
photo). Brandon ride on the back of his Gold Wing - he likes this
much better then being in a sidecar. After the ride I asked Brandon
how it was for him - was he nervous riding on the back?. He said
that it was FUN (his emphasis). The program
following the ride was supportive and full of positive energy. It
felt like a real community. They had a group of Ride for Kids
"Stars" on stage for some questions. Brandon was pretty funny, when
Kim was being interviewed she was asked her favorite color. She
answered "purple" and Brandon gave a big thumbs down (to him all
things purple mean the UW Huskies). I'm so happy that Brandon had
such a great day! Thank you Brian!!
Here a link to pictures from the day.
Things are still going good at school for Brandon. He's have some
struggles but we have a team helping him out by having someone
volunteer in class each day. His teacher Mr. Johnson is very
helpful and understanding of Brandon's needs. This morning he wound
up staying home sick. He's got a bit of a cold and felt pretty
lousy. Last night he was fairly congested and said that he hoped he
felt better in the morning because he wanted to go to school. It is
great seeing him back in the classroom with his friends - doing
something "normal".
Next week I'm taking Brandon down to San Francisco for a few days of
fun. I'm looking forward to this trip - for years he's wanted to
ride in a subway, so a few rides on BART on first on the list.
We're also planning to visit Alcatraz, the Golden Gate Bridge, and
the Exploratorium. I'm going to try and do a good job keeping
things at his pace so that he has a good time.
Friends of ours are organizing the first annual
Seattle
Run for Hope on October 18. This event benefits the
Pediatric
Brain Tumor Research Fund, a local non-profit that funds
research at Seattle's Fred Hutchinson Cancer Research Center and
Children's Hospital. I'm participating in this event and would love
to have your support this extremely worthy cause. You can
donate online at my fundraising page.
Thank you so much for all of the messages of love and support.
Jeff
Yesterday afternoon the Tumor Board at
Children's discussed Brandon's MRI. Their recommendation is for Brandon
to continue with the chemo. The next cycle's scheduled to start next
Wednesday. The reason being is that the current regimen is clearly
slowing the pace of the tumor growth and it is really the only good
cocktail in their eyes at this time. The new tumor in the middle is
disc shaped sitting on top of the brain stem. After going back to the
previous MRI (June 3) this new growth is visible by comparing it to
Monday's image. The MRI also showed that the ventricles were quite a
bit larger. They don't know why this is happening and want to do a
follow-up CT in 2 weeks. There were also many areas of enhancement that
Dr. Douglas (radiation oncologist) is pretty certain is swelling and/or
necrosis from the February Gamma Knife treatment. However he thinks
that there is likely slow progression at the original (Feb 2003) tumor
site. Also, Dr. Geyer has contacted the NYU doctor to discuss the
vaccine study.
So this is a slice of encouragement from how I felt on Monday. We've
got a plan and will continue with the chemo. Thankfully the meds do not
have much of an affect on Brandon.
Despite this huge setback, we pressed on this week and Brandon had a
great first day of 5th grade yesterday. Brandon had a great day and
thought it went better than he thought it would. He was very anxious
since he was out of school so much towards the end of last year. We had
a meeting at the school on Tuesday to get things ready for his return
and do as much as we could to ensure he would be successful. Brandon
wanted to try a walker to give him more confidence when walking around
and also to allow him to get around more safely on his own.
Here are pictures from yesterday.
Last week we were down on the Oregon coast at Gleneden Beach (just south
of Lincoln City). Brandon, Christine, and I along with my parents had a
wonderful time relaxing. We had pretty good weather, did the outlet
stores, and visited the very cool
Evergreen Aviation
& Space Museum. Other than the day at the museum, Brandon played
solitaire on the DS pretty much all the time, but enjoyed himself.
Here's a bunch of photos.
Thank you for all of your words of encouragement and support. There's
for sure a very difficult road ahead and I couldn't make it without all
of you.
Gratefully,
Jeff
www.brandonsgoal.org
Not so good today
There's one new spot on the scan, right in the middle on top of the
brain stem. This means that the chemo is not working as we'd like it to.
They will discuss Brandon's case at tumor board on Wednesday then we'll
decide whether to stop the chemo. There's a phase 1 vaccine study at NYU
that we're looking in to, we're sending blood today to see if he's
eligible. Prayers that he's the right HLA type.
When we got the news I had this weird sensation, like my skin being
heated from the inside out and then that feeling after just missing
being in an accident (adrenaline?)
thank you your encouragement and support - it's going to be needed a lot
in these coming months as we face these extremely difficult times
love Jeff
He everyone, I started this update last
week and am now finally getting it finished.
Brandon finished his 5th chemo cycle on Friday. He was super
cooperative as usual. It amazes me how well he takes all of his
medicines and vitamins (almost 50 pills each day!). Even during the
chemo weeks he doesn't complain at all. This last cycle he didn't feel
that different but did have a bout with diarrhea. At the Dr.
appointment last Monday they bumped up his dose of
Concerta (extended release Ritalin). For several weeks it hasn't
had the same effect as it did back in June - apparently it's common to
have to adjust it after a while. So far the increased dose has made a
noticeable difference. He's more engaged and hasn't been as reliant of
the DS. We are also cutting the PM dose of steroid back from 2 mg to
1. A few weeks ago we had a follow-up with the Neuro clinic. They are
leaning towards stopping the Keppra the thought being that there likely
isn't a need for it and due to the potential effects it may be having on
his mood. Without trying this we wouldn't know if it's having an effect
on his mood. They think that the risk of seizure without the Keppra is
quite small. We can always start it again in the unlikely event that
should something happen. We agree with the docs and plan to stop it
once the Summer is over (and we are not out and about far away from the
hospital should something happen).
Brandon's next MRI is on August 31 at 9:30 AM - a week from Monday. It
seems like it's been so long since the last scan - 3 months and 3 rounds
of chemo. I try to not focus on the importance of this scan - it seems
repetitive to say how much I hope that there is nothing new on this
scan...
July and August have been busy for Brandon. In July he and Kris
attended Camp Agape for the second year. He had his same counselor
Aunika from last year and had a good time but was quiet and kept to
himself quite a bit. Christine and I went down for a visit during the
week when they were having a dock party. While at camp Brandon had
professional photos taken by
Lynette
Huffman Johnson with
Soulumination. The
photos are excellent, but are also filled with emotion. Also, on
the way down to camp Kris took Brandon in to Children's because his ears
were bothering him - turns out he had two ear infections, ugh! He's
been spending a lot of time playing solitaire on his DS - so much so
that he's etched the screen where he taps the deck for more cards. He's
gotten quite skilled at it, but I wonder about the reasons he plays so
much. Is it because he is bored, because he feels good focusing on
something he's good at, or because he just wants to stay busy? I've
tried talking with him about it but haven't received much insight.
In July Brandon's cousin Ashley came out for a visit and to coach at
Brandon's Kids Kickin' for Kids event. It was great to see Ashley
again. She and Brandon really hit it off last summer when we visited
them in New York. The KK4K event was a success. About 50+ kids
participated and $1300 was raised for for
Dr. Jim Olson with the
Fred
Hutchinson Cancer Research Center to benefit the Pediatric
Brain Tumor Research
Fund. Thanks for all of you that supported this event by
participating or helping. Here are
pictures from the event. Throughout the week Brandon and I gave
Ashley the complete tour of Seattle. We went to the Central Library,
rode the ferry to Bremerton for dinner, went to the Space Needle at
sunset, and rode the ducks. Here are
pictures from Ashley's visit. Here are more photos from the summer
including our
inaugural ride on the new Link light rail and
enjoying Seafair.
I want to finish with a tribute to a great man that we were fortunate
enough to have enter into our lives.
Reid Averill passed away recently after a year-long fight with a
brain tumor. We met Reid and Lori back in 2003 through our friends
David and Julie while in Memphis for treatment. Reid was a pilot for
FedEx and gave Brandon a very special tour of the Memphis hub (pictures
from the tour are here). During our next trip to Memphis in October
2003, Reid took Brandon up for a ride in his private plane. Reid was a
caring and compassionate man, a wonderful father, and a great friend who
will be deeply missed. It tore my heart to see Brandon's reaction when
Kris and I told him about Reid's passing. It's hard to know what the
best approach is for news like this. I feel that we owed it to him to
share with him this news, but at the same time I'm worried that hearing
this will cause Brandon to loose hope...
Thank you for all of your love and support, it's very much appreciated,
Jeff
www.brandonsgoal.org
Hi everyone,
It's been a while since my last update. Brandon's doing pretty good. Yesterday he started his 4th cycle of chemo. Cory gave Brandon an extra 2 weeks off to give Brandon some extra recovery time and let him enjoy his summer. We've really appreciated this extra time with him feeling good!
Sine the last update we've changed things quite
a bit on the medicine side. He started with the dexamethosone
(steroids to help control the swelling in his brain) about 4
weeks ago and seems to be tolerating them very well - there have
not been any of the severe emotions like the last time he was on
them last November. This sure makes it easier to give it to
him, plus his lack of appetite is gone, the dex makes him eat
like a storm! His favorite meal now is steak (they're starting
to recognize us at the Keg). The steroids have also caused his
cheeks to be very swollen and puffy.
We also started him on
Concerta. It's a stimulant (basically an extended-release
version of Ritalin) that has been used for brain-tumor kids to
help them feel better rather than going on an antidepressant.
It makes you feel better, gets you focused, and works right away
without many downsides, He's been on it for almost 3 weeks and
it's made a noticeable difference in his energy and interest
levels - he's quite a bit more engaged in his day. It's sure
nice to see him having a better quality of life! This has also
helped me quite a bit. Brandon's withdrawal and clinginess to
his mom was really starting to affect me.
We also started him on an aggressive vitamin
regimen a couple of weeks ago. They are to help control the
swelling and to increase the effectiveness of the chemo drugs.
He's such a trooper, this new plan involves taking a lot more
pills and 4x/day with no complaints. He just takes the pills
with no issue.
LiveStrong Challenge - My dad and I participated in the 45-mile
ride on June 21. It was such a rewarding experience! It felt
so good to cross the finish line with my dad and see Brandon
waiting for us on the finish line. Thank you for all of
your help in reaching my fundraising goal of $747! I'm looking
forward to next year's ride and hope to take on the 100-mile
course (we'll see...). The weekend started off with Brandon's
last day of school on Friday. He went in for the last day and
wanted to get his teacher some flowers. He's wanted to do this
for the past few years - his own idea :-). Friday night I took
Brandon and his friend Jamie to a Storm game.
Here are pictures from the event.
Last week Brandon and I went to
Silverwood (a theme park in Northern Idaho) with the
Moore's. We camped for 4 nights and had a great time. There
was a large group of families that make the trip every year.
Brandon did a great job with 2 days at the park. We both made a
few loops in the lazy river at the water park. I was glad he
wanted to give it a try. Cory advised him to avoid the
rollercoasters to prevent any head pain. We took on the log
ride and a few others, had lots of ice cream, and enjoyed the
time together. For the most part he kept to himself. Back at
camp he pretty much played solitaire on his DS. I'd expected
that we'd come back early. I was pleasantly surprised that
Brandon wanted to stay the full four nights.
Here are some pictures from our trip.
Saturday was the annual 4th of July parade in downtown Bothell. Brandon rode his battery-powered 4-wheeler in the kids parade. He was totally in his element, throwing candy to kids and feeling very confident behind the wheel. It was great to see him having so much fun!! Later in the day we joined the Moore's and their neighbors for the annual cookout and fireworks. Here are some pictures.
Brandon's been quite the TV star lately. He was on the local news 3 times in June. First was a report on therapy dogs where they featured Brandon visiting with Maureen from Stepping Stones (she is the social worker on Brandon's palliative care team) and her dog Dresden. The story ran on the KING 5 morning news on June 5. The other story was unfortunate. A few weeks ago Kris had some unwelcomed excitement - some vandals threw a couple of rocks through the front window. Thankfully it didn't wake them up and they didn't discover the damage until the next morning. The neighbor across the street called the KOMO problemsovers to report the incident. The story ran on the KOMO 4 11:00 PM news on June 14. They did a follow-up story a week later when a local glass company replaced the window for free.
Pediatric Cancer Fundraiser with Brandon - Brandon asked Kris when she was going to run another soccer clinic. She didn't have any scheduled and Brandon said to her, "Mom, we really need to do one". So she's doing one next week. Approximately 80% of each registration fee will be donated to the Fred Hutchinson Cancer Research Center!
That's about all for now. Tomorrow Brandon and I are going to a Seattle Storm game at noon and spending the day in downtown. Next week we have a neuro-clinic follow-up. We'll likely keep with the Keppra. He's doing pretty good and we don't want to do anything to change that.
Thanks for checking in with me and for your support,
Jeff
We received good news today,
Brandon's MRI was stable! There's no signs of progression which is
just excellent. There's a new spot on his spine that was fairly small
that we'll have to keep an eye on. The scan was discussed at today's
tumor board - it was reassuring that the team had already discussed
Brandon's case when we met with Dr. Geyer this afternoon. The scan is
consistent with what they expect to see following the Gamma Knife
treatment. They think he's doing pretty well, especially given the
amount of radiation he's received.
The scan shows noticeable signs of increased swelling. This is
consistent with the symptoms Brandon has experienced recently -
sleepiness, lack of energy, and increased wobbliness. It doesn't look
like the Pentoxifylline's had the
desired effect. We're going to try a short course of dexamethasone
(steroid) and see if there's any improvement. The dex will certainly
reduce the swelling, it's just a matter of how much is needed and how
bad the side effects will be. So we'll use the next 4 days to see how
he responds. We're planning to use oxycodone with the dexamethasone to
deal with the severe emotions that occur with the dex. Brandon knows
how the steroids affect him, but is willing to give it a try because he
is so strongly opposed to the Hyperbaric Oxygen Therapy. Also, from our
perspective, there's no assurance that the HBOT will work. We'll check
in with Dr. Geyer on Monday to report how things go and decide what to
do from there. In the past the dex has caused Brandon to eat like a
machine, hopefully this will happen again. He really needs to eat, he's
down to 62 pounds. We talked with the nutritionist briefly. We're
approaching the point where they want to use a feeding tube. Brandon's
certainly doesn't want this, so hopefully the steroids will help him
bulk up a bit.
Brandon was pretty flat today. He threw up this morning and was not in
a mood to talk with Dr. Geyer. He was very patient today and did great
in the MRI. He was either singing to the music or talking to himself -
it was funny. I can't imagine what goes through his head each time we
have another scan. I know how hard it is on us.
I hope you enjoy the beautiful weather today. Thank you for all of your
prayers and positive energy!
Jeff
Hi all,
Brandon finished his 4th round of chemo yesterday. He did ok with the
meds this time, still no nausea or stomach cramping, but his energy
level and appetite took a big hit. Next he'll have 3 weeks off and time
to recover.
Late weekend, Brandon, Christine and I spent the Memorial Day weekend in
Portland. We took the train down and had a very good time. Brandon did
quite well all weekend and had a decent appetite (although he didn't
want any steak - hot dogs were his favorite). We spent Saturday
exploring downtown. Brandon rode some rides at the Rose Festival
carnival and we found a favorite restaurant in the Peal District for
dinner. On Sunday we had brunch at my relatives house in Northeast
Portland. Later we went to Vancouver (WA) for a birthday cook-out for
Christine's nephew's birthday. Of course we took many bus, MAX (light
rail), and street car rides. Here are
photos from our trip.
This week Brandon and Kris went with Rich and Dianne for a quick
overnight camping trip up in Lynden.
On June 21 my Dad and I are riding in the
LiveStrong
Challenge, a fundraising event by the
Lance Armstrong
Foundation. I'm really looking forward to participating in this
event. The ride is on Father's Day so I think it will be a special day
to get to ride with my dad! This is the first time it's being help in
Seattle. In prior years I've wanted to ride in the Portland event, but
things didn't come together. I'm riding the 45-mile course and I'd love
to have you sponsor me for this event. You can pledge online by going
to my fundraising page:
Thank you for helping raise funds for this great
organization - and most importantly, for a great cause.
On Wednesday Brandon is having his MRI. The scan is at 11:45 AM and
will be of the brain and spine. It goes without saying that I'm quite
nervous about this one. It's so hard just waiting in anticipation,
knowing that there's nothing that can be done to affect the results.
Please send hope-filled energy and prayers his way on Wednesday.
Thank you for all of your messages of support and hope.
Jeff
Yesterday afternoon we had a meeting with Brandon's care team to
discuss, among other things, the decision making tool. It was a
difficult meeting - I was pretty anxious yesterday in anticipation. We
had Kris and I, Rich & Dianne (Kris' parents), my parents (via phone),
Christine, Kris' friend Jeanne, the team from Children's (Cory, Dr.
Geyer, Mandy [Cory's right hand], and Julie [hemog social worker]), Dr.
Oderberg, and Anne (nurse) & Maureen (social worker) from Stepping
Stones.
Julie led us off by asking about Brandon - how he's doing, what he
enjoys doing, etc. Dr. Geyer helped frame the meeting by explaining that
we were there to address the things we can do something about.
We talked about the change in Brandon since having the seizure on March
16 and the possible causes including the medicines he is taking. Dr.
Geyer offered that he's also had quite a deal of radiation and that
could be the cause. He also explained that these changes (lack of
appetite, being tired/lack of energy, and lack of interest is common
with kids in similar circumstances - meaning it may not be the medicine.
I didn't necessarily want to ear this because I have been hoping -
holding on to - that these "changes" could be reversed or at least
lessened by adjusting or altering the meds Brandon is taking. We also
talked about antidepressants. But first we will give the Pentoxifylline
some more time and then look at stopping the Keppra before starting him
on an antidepressant.
Dr. Oderberg offered that she thinks that Brandon is trying to keep
things together. She also pointed out the need to allow for quiet time -
down time where we can just "be" with Brandon.
A difficult part of the meeting was when Dr. Geyer described how things
would occur if/when Brandon's disease progresses. He said that over time
Brandon would get progressively more withdrawn and sleep more. Some
physical functions may be affected such as having a weak arm. What he
described was a peaceful process that he assured us would involve no
pain. He said that kids most often want to be assured that their parents
will be with them, that there will be no pain, and where they will be
(i.e. not in the hospital). Hearing all of this I was on the brink of
loosing it, but wanted...needed to stay focused. Dr. Geyer said that it
was important for all of us to respect where Brandon is physiologically
and physically.
We talked a bit about the next MRI on June 3. If there are no new tumors
we will press on with the current treatment. If there are new tumors we
will obviously talk about the next steps. Gamma Knife will probably not
be an option. As Dr. Geyer said, the question would be What are we
trying to accomplish? I knew that this was the "right" answer. It's hard
to begin to accept defeat and to to not keep fighting this battle, but
it is important to keep the big picture in prospective - Brandon's
quality of life.
Cory asked how they could help us (Kris and I). I explained that all
through this long journey we as parents have had to make most of the
decisions regarding Brandon's healthcare. I asked her to tell us when
they disagreed with a decision we might make in the future...and to say
when it's time to discontinue treatment.
This has been a difficult update to write. Typing out the words feels
like another notch towards acceptance - or toward what seems more and
more like an inevitable conclusion. I'm not giving up yet and
continue to remain standing.
I ask for everyone to please have good thoughts and/or offer prayers
that the chemo is working - that we can pull out a miracle for Brandon.
jeff
Hi all, It's been a while since I updated everyone.
Brandon's been doing ok. He's still often seems withdrawn and
uninterested in things and isn't eating that much. It's pretty hard to
keep seeing him this way and at the same time frustrating not knowing
what's causing it. He'll have bursts where he'll be up for something -
building a Lego model or a trip to the library, but usually for a short
duration. Lately I've struggled with trying to find an activity he'll
enjoy and also feeling like no mater what I do, I can't make him feel
better or get him happy - it's like walking on egg shells. It really
hurts.
Since the last update, the relative panic over the brain swelling has
eased off quite a bit. It's still an issue - but not critical. We
assume that the swelling is responsible in some part for Brandon's being
disengaged and loss of appetite. He's been taking vitamin E and started
yesterday on Pentoxifylline, both of which are hoped to help reduce the
swelling. We'll hopefully know in a few weeks if this new medicine is
making an improvement. If this doesn't work we'll likely consider
starting Brandon on hyperbaric oxygen therapy at Virginia Mason.
Thankfully we received insurance approval for this costly treatment.
On Tuesday we had the Neuro clinic visit following the EEG on April 24.
The docs said that they didn't really gain any new information from the
EEG. It didn't show any signs of increased risk or susceptibility for
seizures. They recorded some areas of slowing, possible form the tumors
or the gamma knife radiation. She was very helpful and we asked a lot
of questions about his future risk of another seizure and how long we
should continue the Keppra. We don't know if the Keppra is contributing
to Brandon's mood and loss of appetite. He's on a fairly low dose, but
there's no way to know. We agreed that we'd wait a while to give the
Pentoxifylline time to work before making any changes to the Keppra. We
want to be sure we only change one thing at a time.
Monday Brandon spiked a fever and wound up having to spend the night in
the hospital as a precaution. His counts were fine but he had an
elevated heart rate and low BP, possibly from not drinking enough
fluids. They gave him lots of fluid along with some antibiotics in
case. They kept him in for part of Tuesday as well, getting discharged
a few hours before the Neuro appointment. Brandon was very frustrated
to have to be admitted but he and Kris made the best of it on Tuesday
and roamed the hospital.
He finished his 3rd round of chemo last Friday. All went fairly well -
no problems this time, he had no nausea or stomach cramping. The extra
doses of Suprax (cefixime) seem to be doing the trick. By the end of
the week he wasn't feeling that great. Brandon does so well taking
these meds, I still find myself feeling added emotion as I'm giving them
to him. The next round will start on May 27.
This past weekend I took Brandon to
Gilda's Club
for a family brunch. Christine and I attended an orientation a few
months back and I've been wanting to attend a program. After the brunch
the kids have "Small Talk", a time to talk and participate in an
activity (they painted pots and planted flowers this time) led by a
social worker while the parents have a group session. It felt
comfortable being in this group where we were all struggling with
similar issues. I was glad that I made the effort and had the chance to
join this group and look forward to attending again soon.
Brandon's continuing to see Dr. Oderberg. We hope this will help with
the emotional side as we're pretty sure that he's dealing with feelings
of depression.
Also last month Brandon was seen by an Encronologist at Children's.
They suspected that his thyroid has been impacted by all of the
radiation treatments. The blood work showed that he was producing lower
levels of thyroid hormone and could benefit from a supplement. He
started on Levothyroxine just before going on the cruise. We've noticed
a bit of an improvement in Brandon's energy level.
What else?
Brandon and Kris had a very good time on their Disney cruise. He had a
lot of fun vacationing with his cousin Ryan. He "discovered" steak and
had some each day.
Last month Christine and I took Brandon to see Cats at the Paramount
Theater. It was a wonderful night! We had dinner downtown and then
went to the show. I was a bit anxious if Brandon would make it through,
but he did great and really had a good time. At times he seemed
memorized by all of the action on stage. He looking kept looking back
and watching the spotlight operators (...something I would have done at
his age). I made sure I took in the moment as I watched him engaged and
enjoying the show. I'm so happy that I decided to do this!
What's coming up?
Next week we are meeting with the Palliative care team to discuss
Brandon's
decision making tool. Neither Kris or I are looking forward to
this. It's a time to talk - while not in crisis mode - about how we
want things to be handled in the future. The medical team is only one
part of the team. Family and close friends will also participate.
The next MRI, both brain and spine, will be on June 3.
Thank you for your continued support. This ride is rough.
A Happy Mother's Day to all of Moms. I'm heading down to Tucson this
weekend for a quick trip and Mother's Day visit.
Jeff
Hi everyone. Things have changed since Wednesday. I've been intending
to send an update for the past few days and just haven't been in the
mood.
Thursday morning following the MRI we received a phone call from Dr.
Geyer and Cory. They explained that they were very concerned about the
swelling in Brandon's brain (resulting from the Gamma Knife). This was
quite different from the previous afternoon's call following the tumor
board. This news was both confusing and frustrating - what had changed
overnight? We tried to get in touch with Dr. Douglas and moved up the
consultation with the hyperbaric oxygen clinic and tried to make sense
of this emotional rollercoaster.
Yesterday we had a Hemog clinic appointment along with a ENT follow-up.
After seeing how Brandon was doing Cory was not as concerned about the
swelling. We still need to decide on a plan to address it - and soon -
but the urgency was a bit eased. Phew! They are planning to have the
next MRI in early June. Next Friday (4/24) Brandon has an EEG for the
neuro clinic to evaluate Brandon's brain activity following the
seizure. The next round of chemo is set to begin on Monday, April 27.
The only slam dunk to treat the brain edema (swelling) is dexamethasone
(steroid). For now this options is off the table because of the severe
negative effects on Brandon's emotions. Along with the Children's team,
Dr. Merchant (St Jude) and Dr. Kieran (Dana Farber) have been helpful in
suggest possible treatments. The options we are/have been considering
are 1)
hyperbaric oxygen therapy, 2) vitamin E combined with Pentoxifylline
(Trental), and 3)
bevacizumab (Avastin). Unfortunately none of these are a slam dunk
and each has definite pros and cons/side effects. For now we're giving
Brandon vitamin E along with an herbal supplement. We hope and pray
that he can manage as long as he can while we try to sort this out.
Signs we'd be looking for indicating increased pressure from the
swelling include continued headaches and/or vomiting. Kris will have
dex with her next week when she and Brandon are in Florida for their
Disney cruise in the event that the symptoms progress.
We'll be at Children's again tomorrow afternoon for labs and an
appointment with an endocrinologist. The labs from last week indicated
low thyroid levels. This may be (yet another) cause for Brandon's
lethargy. It sure will be nice if we can find something that will
brighten his mood and make him less tired and withdrawn.
On Friday we had an appointment with the doctors at Virginia Mason's
hyperbaric oxygen center. A large majority of their patients are
being treated for effects following radiation therapy, however nearly
all are for treating areas other than the brain and they have few
pediatric patients. The risks are low but include the potential for
another seizure. There's also the fact that HBOT causes the growth of
new blood vessels - similar to new tumor growth. The Doctors assure us
that this isn't the case and there are numerous studies that back this
up, but it still makes you wonder.
We had Brandon see Dr. Oderberg yesterday afternoon to "catch up". We
are concerned about his withdrawal and emotional health and the fact
that he's not really talking about how he is feeling. They had a good
visit. Afterwards she explained to Kris and I that she thinks Brandon
keeping it together by not talking about things - that part of his
coping mechanism is to keep it to him self. I am going to try harder to
communicate with him; to let him know that I want to have the hard
discussions with him. This will be hard for me as well. He's got
another appointment with Dr. Oderberg on Friday so he can talk with her
again before being out of town next week.
That's all for now. Tomorrow night I'm taking Brandon and Christine to
the opening night of Cats!
Take care,
Jeff
The good news holds!
The Tumor Board confirmed that they did not see any new tumors!!! It
feels like an understatement to just say that what a relief this is.
Thank you so much for taking the time to send your positive energy and
prayers today! The doctors also confirmed that the swelling is
consistent with what is expected given the amount of radiation he
received from the gamma knife. They also reported that the swelling is
balanced across the top of Brandon's brain, allowing the swelling
pressure to be evenly distributed. It is hoped that this even
distribution will lessen the side effects from the large amount of
swelling. All in all an excellent report from the tumor board team!
The best treatment to reduce the effects of swelling is dexamethosone
(steroid), but we know how severely this affects Brandon's emotions.
For now we don't need to use this approach. They also suggested that
we start him on Vitamin E and Pentoxophyline for the swelling. We are
also looking into
hyperbaric oxygen therapy
The chemo drugs will continue to be in Brandon's system for a few more
days. After that he will hopefully begin to feel better each day.
He'll continue with this chemo regimen, the next cycle will begin on
April 27. We think the next MRI will be in about 3 months.
Thanks again for everything.
love, Jeff
We met with Dr. Geyer & Cory this morning - The initial look is
positive, but we're going to have to wait some more for the final
results. Brandon's most recent scan is not on the system at Children's
(it was done at Harborview), so they will work to get it transferred and
discuss the findings this afternoon at tumor board. The radiology report
from this morning's scan could only compare to the prior scan at
Children's on February 6. In looking at today's scan they did not see
any new spots - this is what we were most concerned about!!! The rest of
the scan was dramatically different following the February 24 gamma
knife treatment with a lot of swelling following the gamma knife
radiation. So we hope to hear more information later today.
Brandon's feeling a bit better today and is in better spirits. His
friend Jamie had a sleep over last night and came to the hospital with
us. Brandon was definitely thankful for his support. He and Jamie are
now on their way to look at motorhomes with Grammie & Pappa.
Thank you so much for giving your prayers, etc. to Brandon today. We
hope and pray that this initial news will hold true.
Jeff
Hi all,
Brandon finished his second round of chemo on Friday. He seems to
handle it a bit better this time - no nausea or vomiting. Also only one
unscheduled trip to the ER due to a fever, counts were good so it was
just a precaution. We'll see how this week goes with the stomach pain
and diarrhea (it started the week after last time). Hopefully the
changes we've made will keep these issues away. Many have asked me how
Brandon's been doing. The honest answer is that I don't really know.
He's been pretty low and slow these past weeks, spending much of his
time laying on the couch. He said he's doing good when I ask, but
doesn't seem to be engaged in anything. It's hard not knowing what to
do. I don't know if it's physical (the chemo & anti-seizure meds) or
emotional - or a combination. I can only imagine what must be going
through Brandon's head. Not sure if he's tired, down because of how he
feels, still recovering from the seizure, struggling with the memory
loss...
On Sunday we got out for a bit and enjoyed the beautiful day by going to
the Ballard locks to watch the boats go by. He seemed to enjoy it. We
also had Jet come over for a sleepover Saturday night. This helped
raise Brandon's spirits quite a bit.
Brandon's MRI is at 7:45 AM on Wednesday. At times I feel myself
getting overwhelmed thinking about it. Please give Brandon everything
you've got on Wednesday morning.
Thanks for supporting Brandon,
Jeff
Hi
all,
Brandon's sleeping peacefully tonight. I wanted to share how's he's been
doing since leaving the hospital on Wednesday. The seizure recovery is
a slow process - each day has shown incremental improvement. By
yesterday he seemed close to normal mentally. It's hard to say for sure
where he's at now because of the Keppra (anti-seizure); it can cause
tiredness and moodiness. He's been particularly tired today. He wanted
to go to school but had to come home after an hour or so because he was
so sleepy. He came home and rested for a bit but wanted to go back for
PE. Such a trooper. He seems like he's been sad most of the day -
maybe he is processing what has happened over the past week. I cannot
imagine how it must be for him...
This weekend was pretty good. We mostly hung low, built some Lego and
went out for dinner w/ Christine on Saturday. On Sunday he wanted to
visit Grammy & Papa (Rich & Dianne) and baked a cake w/ Dianne. He was
low and slow most of the time, but was pretty engaged when making the
cake. He gave us some smiles and an occasional laugh which was so good
to see! Over the weekend we watched a slideshow of the Boeing photos
from Brandon's birthday surprise (link below). Brandon said he didn't
remember anything from that day and appeared sad afterwards -
heartbreaking to see him feel this way and also to think that he doesn't
remember his special day. I'm hopeful that the memory will return over
time.
On Friday evening Kris and I we were talking to Brandon and asked how he
was doing. He asked why he was feeling dizzy. We asked if he wanted to
know why he was in the hospital. He asked, "Why did the chemo make this
happen?" We explained that he had a seizure (he didn't know what this
was) and it wasn't necessarily due to the chemo drugs. We explained
that his brain brain got tired from everything going on - the tumors,
the gamma knife, the chemo all of the activity the days leading up to
it. I explained that it was like when Daddy's computer locked up and
needed to reboot. We explained that it would take some time while he
body/brain rested and recuperated.
We had a clinic appointment with Cory yesterday. They said Brandon
looked good. The labs were excellent and his lungs sounded great, the
left side (the location of the supposed pneumonia) was all clear. He
will start the next round of chemo Monday afternoon. Cory is having us
change things a bit in an effort to get ahead of the intestinal
irritation caused by the Irinotecan. Hopefully he won't have the
considerable pain and diarrhea as he had following the first round.
Upcoming appointments are an EEG on 4/24, a neuro clinic follow-up on
5/5 and the MRI on April 8.
I realized that I haven't shared about Brandon's special
birthday. The day was so spectacular, I am extremely thankful that
Brandon was able to have this experience - it's a bit overshadowed by
the fact that he doesn't remember anything. I'd been keeping a tight
lid on the details to make sure it was a big surprise. As far as
Brandon (and all of his friends) knew they were going to the Future of
Flight for a birthday celebration and to take the Boeing factory tour.
The surprise was a tour of a new 747 freighter and a 777-200! The 777
was a ultra luxurious Emirates aircraft. Gary Konop, Boeing's
Director of VIP
Visitor Relations, scripted an excellent way to bring Brandon
into the surprise. I've pasted below from Gary's detailed schedule for
the day:
|
9:45 a.m.
|
Brauns party moves to Aviation Center theater with other members of the public for start of the 10 AM Boeing public tour. |
|
10:00 a.m. |
Boeing tour guide provides welcoming remarks from stage, dims lights, and begins showing 7-minute Boeing film.
|
|
10:10 a.m. |
Film ends. Boeing tour guide returns to stage. Just as the tour guide is about to instruct everyone to board the tour bus outside of the theater, he suddenly receives a loud call on his cell phone. (CALL IS FROM A HIGH-LEVEL BOEING EXECUTIVE INSTRUCTING THE TOUR GUIDE TO PUT BRANDON, HIS FAMILY, AND FRIENDS ON A DIFFERENT BUS FROM THE REGULAR TOUR BUS, A BUS GOING TO AN UNDISCLOSED LOCATION).
Boeing tour guide acts surprised and a little nervous. Says “Yes, Sir, I’ll take care of it!” and hangs up his cell phone. Tour guide then says to the audience, “Ah, folks is there a Brandon Brauns in the audience today? Gee, this is highly unusual, but I’ve just been instructed to put you, your family, and your friends on a separate bus for the plant tour today. Sorry for the inconvenience everyone.” Tour guide then instructs everyone--except the Brauns party--to board the large bus for the plant tour using the stage-left door. Brauns party is told to go out the stage-right door, where Tour Center 20-passenger mini-bus is waiting outside.
|
It was so cute,
when they asked if there was a Brandon Brauns in the audience, Brandon's
arm shot straight up. After boarding the bus they didn't tell Brandon
where they were going and just said that they had top-level orders to
take him to “the EDC.” The EDC being the Everett Delivery Center where
the airlines come to receive delivery of their new airplanes. At the
EDC Brandon was greeted by a group of Boeing managers. They presented
him with a flight cap and jacket and told him that since it was his
birthday they had arranged a special tour for him aboard a new 747
freighter and a new 777 passenger jet. The look on Brandon's face was
priceless when he heard this - a look of disbelief. We re-boarded the
shuttle bus from the EDC and drove towards the Cathay Pacific 747
freighter. Standing in formation at the bottom of the stairway were two
lines of Boeing employees. All were all wearing white jumpsuits. I teared up seeing this
magnificent sight. The entire tour aboard the two planes was filled
with gracious Boeing employees along with representatives from Cathay
Pacific and Emirates. Together they made Brandon and his friends feel
like true VIP's! Everyone welcomed us so warmly and with an open
heart. It was priceless!
How did this happen you may ask? When we first had the idea to surprise
Brandon and try to get him aboard a 747 we reached out to our many
friends who work at Boeing. After many attempts with no success I
decided to e-mail
Alan
Mulally. (Shortly after his first recurrence in 2005 and just
before leaving for treatment at St Jude, Brandon
received a care package and personal letter from Alan Mulally. Jody
Marino, his mom’s cousin, works at Boeing and helped make this happen.)
I asking for his assistance in giving Brandon an extraordinary surprise
for his tenth birthday. To my amazement I heard back from Mr. Mulally
in less than an hour! He remembered Brandon and forwarded my request to
Scott Carson, the current President and CEO of Boeing Commercial
Airlines. He also sent Brandon a birthday letter and gifts from Ford.
A
huge
thank you to
Scott Carson, Commercial Airplanes President and Chief Executive
Officer, and Gary Konop, Director of VIP Visitor Relations for making
this day happen and for making it so special for Brandon. There are many
more to thank including all those at Boeing including David Reese, Paul
Nuyen, Jeff Klemann, Gary McCulley, Tanjer Gillard, Carrie Dernier,
David Rowntree, Pat Chruszch, Mike James, Roy Henslee, Marian Lockhart.
Also Abdulla Shams with Emirates Airlines and John Dugaro with Cathay
Pacific Airlines. I can easily say that I will remember this day
forever.
I uploaded a bunch of photos. Links are below or just start out at
brauns.smugmug.com.
A big thanks to Marian at Boeing for doing such excellent work and
preserving this most special day.
Brandon's Special Birthday Surprise (Boeing tour)
KMPS St Jude Radiothon
Boeing Flight Simulator
Letter from Alan Mulally, Pullman Trip, and hospital
Thank you for everything - the cards, the calls, the messages, asking
how he's doing, and asking how I am doing. It really makes a difference.
Jeff
We're out of the hospital! It's been an understatement to say that
Brandon's been eager to leave. Obsessed would be more accurate. Dr
Geyer led rounds this morning and confirmed that he looked ready to be
discharged. Brandon is on his way home now, I'm waiting for
his discharge meds (keppra and antibiotic). Waiting for the
pharmacy can be a exercise in patience - at times it seems like it'd be
quicker to get an appropriations bill passed.
Things continued to go well last night. He slept well and got a
lot of rest. This morning he slept quite a bit but was awake and
alert also. His mood is improved. Still agitated but to a
lesser degree.
Brandon still has quite a bit of rest a head of him as part of his
recovery, it will likely take several more days to get back to normal.
He's made great progress - such an amazing little boy! We have a
follow-up appointment with Cory on Monday morning. the Florida
trip is postponed for now. Hopefully the cruise will be
rescheduled for later this spring.
More in the next few days. I attached a picture of Brandon taken
about 2 hours ago. Brandon was sitting in a chair since he wanted
to be out of the bed and ready to go. He fell asleep while
waiting. Thanks so much for everything while in the hospital - the
visits, offers to stay at houses nearby, the meals, and the get well
gifts. Brandon loves his new WSU blanket, it's so soft.
Jeff
Brandon's doing a bit better this morning. We just got transferred
out of the ICU and to a regular room. We all agreed that another night
in the ICU was a good idea since he was still since he was sill pretty
groggy and not completely keeping the gunk cleared from his throat.
He slept pretty well all night. This morning he woke up pretty
agitated and kept saying how much he wants to "get out of here".
The irritability is likely due to the Keppra or after effects of the dex
(He's acting similar to when he was on the dex last fall). He also
asked why he was in the hospital and didn't remember anything from the
past 2 days. We told him just that he was pretty sick and needed
to rest.
He' making progress, but still sleeping most of the time. His
speech is becoming more clear and he sat up in a chair for about 20
minutes this morning. He rode in a wheelchair when we transferred
rooms. It's hard to know what he is thinking about all of this.
Right now he is sleeping. He woke up a few minutes and was crying
that he wanted to go home. Very hard - for him and for me.
We're so used to the happy Brandon that it's heartbreaking to see him so
frustrated and sad.
Basically his brain still needs time to recover. He sipped some
juice but basically hasn't had anything to eat since Saturday.
Hopefully he'll get some food in later today. If all goes well tonight
and he tolerates the food well he might be able to go home tomorrow.
Thank for all of your continued prayers and messages of support and
encouragement,
Jeff
Hello everyone, Brandon is doing better this morning, wanted to let all
of you know. Thanks for the prayers and well wishes. We are still in the
PICU so our cell phones are off so keep looking for updates via e-mail.
You can also check his
CaringBridge site.
Brandon woke up this morning several times - a great step in the right
direction!!! He is still pretty out of it but doing better than
yesterday. By far the most scariest situation in our lives. Brandon
likely did have a seizure. During or after the seizure he had vomited a
little, was drooling and had lost his bladder. For several hours my mind
was swirling around - what had happened to him? Would I have my son
back? Once they told us it was likely a seizure and he would likely
recover we got our legs back under us. Earlier this morning he was quite
expressive and asked emphatically "when can I get out of here?" Good
words to hear from him! For now he needs to let his brain rewire and
recover from the event. They have started him on anti seizure meds (Keppra)
which will hopefully keep him in check, but the likely hood of future
seizures is there. A lot of expert eyes have seem him already today.
First the ICU and Hemog doctors came by on their rounds. Cory stopped by
next and then the Neuro team saw him. All were encouraged to see things
heading the right direction. It's looking like he'll be transferred out
of the ICU later today to a regular room and then remain inpatient until
probably Wednesday.
Thanks again for all of your support and prayers.
love, Jeff
Today I was looking forward to sending you an update about Brandon's
incredible birthday surprise on Saturday and his 2-days helping at the
KMPS St Jude Radiothon. Unfortunately Brandon has given us quite a
scare today. This morning Brandon slept in extra long. Kris
was not able to wake him up and he was unresponsive. She called
911 and the medics rushed him to the Children's ER. They think
that Brandon had a seizure some time this morning. He was in the
ER all afternoon and is spending the night in the PICU. They did a CT
scan and found no bleeding - huge relief! His vital signs have
been stable all afternoon, however he isn't easily woken up. He
was somewhat more responsive later in the day, but not much. Right
now he is sleeping comfortably. They have him on supplemental oxygen
since he isn't coughing on his own to clear the gunk in his throat.
They took a chest x-ray and determined that he has a pneumonia.
He's on two antibiotics to clear this up. They also put him on
Dexamethosone (steroid) in the event that there is any swelling around
the brain stem. They will do an MRI hopefully tomorrow - once he
is better able to remain awake. This will let them get a better
idea about the conditions around the brain stem area (this area doesn't
show well on a CT scan). They also took a CSF sample to check for
meningitis. They were able to take the ample from him Ommaya port
so a spinal tab was avoided. The first results were negative.
We're still scared, but more calmer knowing that there wasn't tumor
bleed (a stroke). Hopefully tomorrow he will wake up and be more
responsive.
Please send Brandon your hopeful and positive thoughts and prayers
tomorrow. I'll keep you posted on his condition.
I'll tell you later all about Brandon's birthday surprise at Boeing.
It was fabulous.
Thank you,
Jeff
We've successfully gotten
through the first round of Chemo. Brandon finished on Friday
night. He tolerated the meds ok, but he definitely wasn't
feeling that great. Mid week there were a few runs to
Children's as Brandon spiked a fever. His counts were ok each
time, but had fallen significantly since Monday. Brandon's
mood the past week has been pretty much low and slow. He
missed school most of last week but is looking forward to going
tomorrow. He's not had too much nausea, but quite a bit of
stomach pain.
It's a uneasy feeling when I was giving the chemo drugs to Brandon.
On the one hand I was trying to be calm and low-key with Brandon but
on the other hand you're holding on to these pills with all of the
world's hope that they will work to stop the tumors from growing.
The next round of chemo is set for the 1st week in April after
Brandon & Kris return from their Florida vacation.
Last Friday Brandon accepted an invitation from June Daugherty to
come over and watch the WSU Women's Basketball team play the UW
Huskies in Pullman. Brandon was quite excited for this and
really wanted to go. Thursday night I was thinking it was
50-50. Then on Friday morning I was thinking we shouldn't go -
I certainly didn't want Brandon to be traveling and not feeling
well. But Brandon woke up rearing to go. He was perking
up and really wanted to go...so off we went. We got into town
in time for their afternoon practice. The team was excited to
see Brandon and let him run the 30-second clock during drills.
June got us excellent seats right behind the WSU bench. They
played a great game, but unfortunately didn't beat the dawgs.
A big thanks to June and the Team for giving Brandon such a nice
visit. It was a tough call deciding whether or not to go -
wanting Brandon to get the opportunity while at the same time being
concerned how he'll do over there. Luckily things things
worked out well and Brandon had a great time.
This week's going to be action packed for Brandon.
Tomorrow he's celebrating his birthday with his class.
Cupcakes all around! Then tomorrow night's a special treat.
Don & Mo (Rich/Pappa & Dianne/Grammy's friends) made arrangements to
get Brandon in to the Boeing flight simulator in Renton.
Brandon is very excited to check it out. Thanks Don & Mo!
Big thanks to Don's friend Buddy the Boeing Flight Crew Training
Instructor.
Then on Thursday and Friday is the event Brandon's been waiting
months to arrive - the
KMPS
St Jude Radiothon! This will be Brandon's 5th year helping
out at the radiothon which runs this Thursday and Friday.
Listen for Brandon on the air - 94.1 FM. Brandon likes hanging
with Flo and updating the toteboard. Let's raise a lot of $
for St Jude! Pictures from last year's event are
here
(KMPS) and
here (Smugmug). Brandon's also featured on the
KMPS
website.
Saturday is Brandon's
10th birthday! He and 5 of his friends are spending the day at the
Future of Flight (Boeing Factory
Tour) up in Everett. There's more to this day, but it's TOP SECRET
for now. I'll have a ton of pictures to share after this week.
Brandon's next MRI is on April 8th.
Thank you very much for all of the
mail you've sent to Brandon. Have a great week.
Jeff
www.brandonsgoal.org
Today's spinal MRI was stable for the most part. The prior lesion is
pretty much the same at about 6 mm - this is good! There is also a new
spot that is quite small (2mm). So this is better news than we had
expected.
Tuesday's Gamma Knife treatment went good, but it was a very long day.
Dr. Douglas was able to treat all of the tumor sites, 7 in total (4
known + 2 new + 1 recurrence). His treatment time set a record 212
minutes and he didn't finish until after 7 PM. He recovered quite well
after being sedated for about 11 hours! They strongly advised we spend
the night due to such a long time under anesthesia. Once again the Kamma
Knife team provided us with exceptional care. The night in Harborview
was a long one - Brandon didn't sleep a wink since he was "sleeping" all
day. After a dose of pain meds around 10 he was being pretty funny and
cracking us up. Nurse Debbie was a champ and got us out early so Brandon
could go with me to take Aunt Jen to the airport for her morning flight.
Brandon was sore yesterday and the pin sites hurt off and on.
Tuesday's update was an unfiltered expression of our feelings after
learning of the new tumors. Now that some time has passed we are doing a
bit better and building back some normalcy (our version of normalcy that
is). Hope is still alive and full, but with some more dents. Thank you
for all of your supportive messages, your words are very helpful to us.
Rich and Dianne (aka Grammy & Pappa) took Brandon to the gift shop so
Kris and I could discuss chemo options with Cory. Cory also brought in a
social worker to begin to discuss palliative care issues. This is
obviously a conversation that was quite difficult but we both knew it
was necessary. We talked about how to discuss things with Brandon as he
does not know about the new tumors. That fact that there are new tumors
isn't necessary something that he needs to know now - it doesn't change
our treatment plan. We were all in agreement that the focus is and will
be for now to keep Brandon focused on being happy and living life to the
fullest. He is looking forward and experiencing life and this shouldn't
be disrupted. This being said we ask all of you to please keep this in
mind when talking to or e-mailing him. Kris and I will bring Brandon up
to speed by normalizing it on his terms.
On Monday we will start Brandon on Temodar, Irinotecan and Vincristine.
Temodar & Irinotecan are given orally for 5 days. The Vincristine is
given by IV infusion once every 3 weeks. We'll do labs weekly to check
on his counts. The next MRI will be in 6 weeks (early April). This
treatment should not have significant side effects - this was an
important consideration. Diarrhea is the most likely and can be
mitigated with Cefixime that is given concurrently.
This is has been a very trying and difficult week. We are in a place we
somehow deep down knew we might get to but never let ourselves believe
we would. Now that we are here we want to do what is best for Brandon.
We will share with him what is happening as he asks and as we feel is
appropriate. We know this is all so very hard on all of you as well.
But, please keep on a happy face for B as you always have. As he asks
more questions or we tell him more we will certainly let you all know.
Jeff & Kris
I wish
like the world that I wasn't sending this message to you.
We just reviewed the scans with Dr. Douglas and there are 2 new tumors.
Also the tumor near the brain stem (the area treated in Dec 07) also
shows new growth. The GK planning scans are more accurate (tighter slice
interval) so we don' know if these areas are new or just couldn't be
seen on the Feb 6 scans. Hearing those words "buy more time" is the
worst thought to process.
We are so devastated.
We need to focus hope that the chemo drugs can put a stop to this beast.
Please oh please make it stop. We are hoping to start on them this week
I hold myself together by thinking of how good and completely he is
living his life now - his beautiful smiling face, his making a glove
balloon this morning and writing on it "I am bord", him playing with Jet
on Sunday. He is such a happy and loving child.
He might have to stay in the hospital tonight as he was sedated with a
cold and the doctors wanted to be able to keep an eye on him over night
to make sure his lungs and breathing are ok. I also forgot to let you
know that he is having a spine MRI on Thursday. This was already planned
since it's been a while since they looked at this area.
Jeff and Kris
Hi all,
I wanted to give an update to let you know that Brandon will have the
Gamma Knife treatment tomorrow at Harborview. We are very hopeful that
this treatment will control each of the four new tumor areas. As it's
been with previous treatments, Brandon should have little to no
restrictions following the gamma knife. We'll arrive at 7:00 AM and be
there pretty much all day. Christine is out of town this week and very
sweet by arranging for my sister to come up to Seattle to support
Brandon (and me) tomorrow.
We're still consulting with St Jude, Cincinnati Children's, Dana Farber,
& Children's to determine to the next chemo drugs we'll use. We are
looking to travel to Boston to meet with
Dr. Kieran at Dana-Farber as he is one of the leading experts on
angiogenesis inhibitor chemo agents such as Avastin (bevacizumab),
one of the drugs we are considering. The concern with using Avastin is
tumor bleeding - this is the main item we want to discuss with Dr.
Kieran.
Brandon and I have returned from a nice & relaxing week visiting with my
parents & sister in Tucson. While in Arizona Brandon was busy. He made
cookies, donuts, muffins, sewed a t-shirt, picked grapefruit, played
with his cousins, and helped put on a breakfast for 60+ bike riders. He
also rode a horse (thanks McDee!), a Harley, and the golf cart (many
times). We also watched a University of Arizona softball game, a U of A
gymnastics meet, and toured a
Titan missile museum. Phew, what a good time!
I uploaded some
pictures from our trip.
Please include Brandon in your thoughts and prayers tomorrow as he
undergoes this critical treatment. I'll let you know how it goes.
Thank you,
Jeff
This afternoon we had a productive meeting with Dr. Geyer and Dr.
Douglas to discuss the next steps for Brandon's treatment. We met
for about 2 hours and really appreciate not only their time, but the
open and honest discussion. We talked about Gamma Knife options
first and then spent a good deal of time discussing the various chemo
treatments that are available.
At tumor board they determined
that there are 4 new tumors we're dealing with. We knew about two
of them, but just learned that there were 2 more today. It was
upsetting to hear this. The 1st is the one we saw back in December
in the
left frontal horn (upper
left ventricle). It measures about
22 x 14.6 mm.
The other one we saw on Friday is small - about 5mm and located in the
3rd ventricle. The two new ones are in the
right frontal horn (upper right ventricle
near his ommaya
reservoir. They actually saw this in the December scan but thought
it was blood due near the tip of the ommaya. Also it didn't
enhance like all of his previous tumors. After further review
today they determined that it is in fact tumor. These two new ones
are above each other,
the larger one is 16.2 x 8.9 mm, the smaller one measures 4.3 mm.
Thankfully
Dr. Douglas said he can treat all four lesions with a single Gamma Knife
treatment. He recommended doing so in the next 2 to 3 weeks as the
two new tumors are close to critical structures that control
motor function. There's sufficient space now for treatment, but of
the tumor encroaches too close he would have to reduce the dose.
As it stands now, Brandon will most likely have Gamma Knife treatment on
Tuesday, Feb. 24. Time is not critical, but Dr. Douglas doesn't
want to wait too long.
So the Gamma Knife will hopefully be successful in treating these new
tumors. However we still need something to treat the new tumors
that will more than likely be appearing soon. The chemo discussion
was good, however it was difficult in that there is no known drug that
is effective against Ependymomas. So it's a matter of choosing
something that might work, while balancing the side effects - those 3
words that rip at you, quality of life. There are a handful of
chemo options that have a fairly low side effect profile. We'll
decide soon which to go with, but are leaning to a combination of
Temodar,
irinotecan, and
vincristine. Temodar and irinotecan are given orally.
The vincristine is given by infusion 1x every 3 weeks. There are
some investigational options as well, with either no real promising
results and/or more impactful side effects. Brandon is doing
so very good now, we don't want to take that away from him. But
the hard truth is that a chemo drug may only buy more time. This
kept coming up this afternoon - not new news, but quite difficult to
hear...and digest. Throughout this discussion I had to keep my
self focused on the treatment options discussion and not let myself
think about this fact.
Kris has worked super hard in researching the various chemo drugs and
discussing with different Drs. and other Ependymoma patient families.
We're sending out Brandon's scans for 2nd opinions to St Jude,
Dana-Farber, and Cincinnati Children's.
It was funny, we asked Dr. Geyer if he consults with other doctors for
their opinions. He said that we've already talked to most of them.
Brandon and I are still planning to spend next week visiting my family
in Tucson. It's important to remember that right now Brandon is
living life to the fullest and felling great. I can't wait for our
trip.
Jeff
Hi all,
I quick note to let you know that the CT scan this morning was stable.
This was very good news as they did not detect any more bleeding at the
tumor site. We had a productive conversation with Dr. Geyer after
the scan about our next steps. Since the MRI results are fairly
complex we're going to wait until after Wednesday's tumor board to
discuss our treatment options. We're meeting with Dr. Geyer and
Dr. Douglas (radiation oncologist aka Gamma Knife Dr.) Wednesday at 2:45
PM.
It's going to be a difficult decision what to do next because of how
well Brandon is doing. Pretty much any of the options are educated
guesses. Plus the fact that he is doing so very well right
now - for which I am so so thankful. Today he was in a great mood
and was playing jokes at the hospital this morning. He had this
little pocket speaker that made a cat-call whistle sound. He made
it sound as the nurse was taking us back to the CT scan this morning -
Brandon thought it was pretty funny. So it's that much harder to
think about treatment options that will seriously degrade his quality of
life. It'd be one thing if we knew that it was going to work for
sure, but that isn't that case. The
Topotecan
really made him miserable and back in 2003 we were in the hospital most
of the time he was on the old line chemo drugs.
Thank you very much for the kind messages over the weekend. I'll
be in touch after the meeting on Wednesday.
Jeff
Kinda of a mixed bag today. The good news is that all of the
previously-treated tumors are stable - very good news! The area of
progression (new tumor) shown in the December scan showed quite a bit of
enhancement; actually it was very very bright - I was felt sick when I
saw it. Turns out that there was some recent bleeding at this
location and this was the reason for the extreme enhancement. They
estimate that it was between 1 to 2 weeks ago. Tumors are known to
bleed on their own, or it could have been caused by the Celebrex -
there's no way to know. Dr. Geyer consulted with Dr. Avellino
(Brandon's neurosurgeon) to be sure there was no immediate concern.
There wasn't, but they want to get a CT scan on Monday to follow-up on
this. The final radiologist report wasn't in when we left so we
don't know how much growth there was with this tumor. It may be
difficult for them to distinguish between tumor growth and the bleeding.
If there's growth, then it's likely that the Etoposide isn't working and
we'll treat soon with Gamma Knife. If there's little or no growth
then Dr. Douglas may want to hold off some more and check again in
another 6 weeks. Because of the bleeding we are stopping the
Celebrex. We are also holding off on the Etoposide for now until
the dust settles and we hear the result of the tumor board discussions.
They did not scan the
spine with this MRI.
So what's next?
They want to do a CT scan on Monday to verify that there is no more
bleeding. Then they will discuss next steps at tumor board on
Wednesday. They will discuss treating this tumor site with Gamma
Knife and whether or not to continue the Etoposide.
Thanks for all of your
support today. I'll keep you updated when we hear next week after
the tumor board.
love Jeff
Hi everyone,
I wanted to let you know how Brandon's been doing and also that he's
having an MRI this Friday at 10:45 AM.
Brandon has been feeling quite good and is doing great! He's
currently mid-way through his 4th course of Etoposide and tolerating it
exceptionally well. His counts are holding well enough and he's
been healthy. We started him on Celebrex 2 weeks ago. There
was some delay in getting it started as the insurance company initially
denied it. Thanks to Cory for unloading a bunch of reports on
Regence and getting them to cover it - indefinitely! The Celebrex
is taking orally like the Etoposide but is given twice a day every day
of the month. Other than being a little more tired, he's
thankfully had no side effects from this additional drug.
As soon as the snow melted, Brandon's taken every chance he can get to
ride his 4 wheeler. He's taken multiple friends up to his Uncle
Troy's place to go riding and has had a blast sharing the riding with
them.
This past weekend Kris & Brandon were back in Redding, CA for another
visit the healing room at the
Bethel Church. It was an engaging trip for both of them.
(Bethel Church have an incredible record of many documented healings and
miracles; Kris and Brandon went there in November following the Gamma
Knife treatment)
Brandon and I are looking forward to his mid-winter break. We
headed down to Tucson to visit my parents and sister. This will be
our 3rd February trek down to the warm weather in Arizona. Now
that they are getting older, Brandon really enjoys playing with his
cousins Kaitlyn and Kyleigh. In March Kris and Brandon are headed
to Florida for fun vacation - they're going to Disney World and then
meeting old friends from Austin on a Disney cruise. Brandon will
then need to rest up for the summer!
I can't remember if I've mentioned how fortunate I am to be working with
such a supportive group at the City of Sammamish. I just had my 5
year anniversary and have been thinking back at everything they've done
for Brandon and I throughout this long journey. During these tough
times I am so very thankful to know that my job, and most importantly my
health insurance, is secure.
This week please pray and/or think good thoughts for the Brandon's MRI
results and that the Etoposide and Celebrex are doing their work.
Thank you so much,
Jeff
www.brandonsgoal.org
www.caringbridge.org/visit/
Happy New Year everyone,
Now that 2008 is behind us, I take a moment to thank you for all of the
support you've given to us during this difficult journey. It makes
a
huge difference knowing there is such a large group following
Brandon and his battle. Your prayers, positive energy, e-mail
messages of encouragement, letters, postcards, hospital visits and
everything else you do for Brandon are appreciated so very much.
We had a great Christmas this year. For me it started on the 17th
after getting the positive MRI results! We were fortunate to have
a white Christmas in Seattle (although not as much after having to put
on chains to get out of the driveway). We had over a foot at my
place. We wound up getting Brandon a "big" gift this year - a quad
(4-wheel ATV). He's wanted one for a while, but Kris and I were
not on board with this idea. He got another opportunity to ride
one this fall when visiting Christine's brother. He rode not-stop
around a loop for a long time and just loved it! Brandon doesn't
play an sport - partly the result of being sick and falling behind - and
he really wants and can use his "own thing". So Kris and I decided
to go ahead and get him one. It was a group effort with Kris and
I, Kris' folks and Brandon's uncle and aunt going in on the gift
together. He was very surprised when we called him outside
and he saw it! His uncle Troy gave him some safety tips and
he was off zooming around in the snow. Brandon's uncle Troy has
graciously offered to maintain it and let us store it at his place near
Snohomish. He's got property with great riding trails.
Brandon will have a ball riding with his cousins and friends.
Thanks Troy!
Last Friday, Brandon started the 3rd cycle of Etoposide.
Thankfully his counts, while a bit lower, are still good enough to
continue with the treatment. He continues to do quite well and
feel really good. We'll also be adding Celebrex soon. This
drug was included in a multi-drug protocol studied by
Dr. Kieran at Dana-Farber and was recommended to add to Brandon's
current treatment plan. Kris spoke to a doctor who now works at a
Children's Hospital in Ohio that used to be at St. Jude. She's
treated many kids with ependymoma's with a chemo regimen that includes
Celebrex. While known as a treatment for arthritis, it also acts
as an antiangiogenic, starving the tumors of blood vessels.
At Children's tumor board last Wednesday they reviewed Brandon's latest
scans. They were in agreement that the area of concern from the
last scan was indeed new tumor growth. Dr. Douglas (radiation
oncologist) wants to wait to see if the Etoposide will work and check
again with another scan in 6 to 8 weeks. He feels comfortable
treating this new tumor with Gamma Knife even if it continues to grow.
So we'll continue with the Etoposide and take another look in early
February.
I'm looking forward to a new year full of hope, clean scans, fun, and
good health.
Jeff
Brandon and Santa
Brandon on quad
I am
so
happy to report that Brandon's scan was pretty good! We were
relieved when Dr.
Geyer
gave us a thumbs-up as he was coming down the hall! This news is
such a relief! All but one of the tumors in his head are smaller!
This was the first scan
following the Gamma Knife on November 4. The two areas that were
treated with Gamma Knife are notably smaller. The lower area (the
original tumor site) treated by Gamma Knife in 2007 is a bit
smaller. Also the small enhancements in the lower spine are
stable. There's an area up in the ventricles that shows
progression from the last scan. Dr.
Geyer
said he's moderately concerned and wants to discuss it at the next tumor
board. Nothing that requires immediate action however. We'll
wait to hear what the Doctors think and monitor it closely with a
follow-up scan in no more than 2 months.
We will stick with the
Etoposide.
Brandon is tolerating is quite well and his counts are still good.
It seems to be having positive results and we sure don't want to mess
with this apparent success.
Thank you so very much for your
words of hope and encouragement and for all of your prayers for this big
scan today. I am so glad to be celebrating Christmas with this
sigh of relief. Time to sit back, take a deep breath, give thanks,
and enjoy the moment.
love, Jeff
Happy December everyone,
Seems like just yesterday it was Halloween, this fall has been racing
by. Brandon is doing quite good, tolerating the Etoposite very well. He
finishes his 2nd course on Wednesday. The Zofran has kept his tummy
happy as he's had no nausea issues to speak of for the past month -
yeah!. His hair's been completely gone for several weeks now. Thankfully
it doesn't bother him, other than his needing to wear a stocking cap to
stay warm. It's a real blessing that his being bald isn't a big deal for
him - this can be so devastating for other kids undergoing treatment.
We've got a big day coming up, Brandon's next scan. The MRI is Wednesday
at 12:30 PM. This is the first scan since the Gamma Knife treatment and
his first since starting the Etoposite so there's an amount of extra
anxiety. I am so hopeful that this scan will be positive - it would be
the best Christmas present ever! Please include Brandon in your prayers
and special thoughts this week and especially on Wednesday.
A cold spell hit Seattle with a bit of snow! I took Brandon and his
friends Jack & Ryan sledding Sunday morning. They had a blast and used
up every bit of the 1" on the ground to make a snowman.
Thanksgiving was a good one this year. My parents came up from Tucson
and we all feasted on a great meal hosted by Rich and Dianne. Brandon
had a great time helping in the Kitchen. On Saturday Brandon wanted to
take a trip downtown with Grandma & Grandpa - by bus of course. Aunika,
Brandon's counselor from Camp Agape, was in town for the holiday so we
met them for brunch while downtown. We then took Grandma & Grandpa for a
tour of the Central library and then went shopping. I uploaded
pictures from Thanksgiving as well as other fall photos.
Brandon's back to a regular schedule at school, making it pretty much
every day until 1:30 or 2:00. He's doing very good, but gets exhausted
by early afternoon. His teachers and the entire Shelton View team are
providing him with such excellent support - THANK YOU!. This week Kris
and I met with his teacher and the Learning Center team. They are going
to give him an extra time in the Learning Center to give him extra help
with Math. The pace has really accelerated in 4th grade and Brandon
often struggles when in his regular class.
Earlier this month Kris and I had a good appointment with Dr. Geyer. We
wanted to take the time now to discuss other treatment options should we
need to make a change from the Etoposide. He was very helpful and took
his time going over the pros and cons of a list of trials we had put
together. It is much easier to have this type of constructive discussion
now while things are relatively calm.
Thank you again for all of your support, love, and messages of
encouragement. We could not do this without you. Brandon really likes
getting your cards in the mail, thanks again! I'll let you know as soon
as I can about Wednesday's results.
Love, Jeff
www.brandonsgoal.org
Hi everyone,
Brandon's been having a good week. It's
so
good to have him in his usual happy and joking mood! He finished
his first 3-week course of oral Etoposide yesterday. After the
first week or so we got into a good schedule with the meds and were able
to prevent any more issues with nausea. He's also needing the pain
meds only infrequently.
He and Kris are headed to Pullman this weekend for the Apple Cup (for
those of you not in the Northwest, this is the end of the year football
revelry between Washington State University and the University of
Washington). They are attending the game as guests of June
Daugherty, the new Cougar Women's basketball coach (Kris coached June's
daughter in soccer a few years ago). Brandon will be performing
the coin toss before the game! The game is being shown on FSN (Fox
Sports Northwest) at 3:00 PM. Brandon is super excited for this
trip. He'll be all decked out in Cougar attire! Go Cougs!
Two weeks ago Gary (Brandon's Bumpa) and Teresa visited from Texas.
Gary, Brandon, Uncle Matt (Kris' brother) and I had a guys night.
We had a great time, starting at Funtasia where Brandon was most
interested in the games where you could win tickets. So all of the
adults tried to win a bunch of tickets for Brandon. After several
jackpots, we wound up with over 1100 tickets! Then out to dinner
and finished up at the bowling alley.
Last Wednesday Brandon had a
PET scan
to see if there was any activity at the original tumor site (the one
that was Gamma Knifed in December). The test results came back
inconclusive. This often happens with PET scans as they rely so much on
the the tumors uptaking the glucose. But, the good news is that
everything was the same size! Cory was also very encouraged by how
well Brandon is feeling. they did labs and his counts are a bit
lower, but still holding strong. His next appointment is on Monday
the 24th where he will have labs. We'll also meet with Dr. Geyer
to discuss other treatment options we've been researching. We want
to be prepared in the event we need to jump to another drug. The
next MRI is on December 17th.
This week Brandon's hair began to fall out - a side effect of the
Etoposide. Thankfully this doesn't really bother him that much,
however he wanted to get a buz cut so that it wouldn't stand out as
much. Also on Wednesday morning after putting in his hearing aid,
Brandon said he couldn't hear as well. Children's audiology got
him in that afternoon for a check. They detected a loss in hearing
response. He seems to be taking this well, but we know that he's
very frustrated and upset by this. At times I get very sad
thinking of how much this disease has impacted his everyday life.
He longs so much just to have a normal life and I wish so badly that he
could have that again.
I'm looking forward to Thanksgiving next week. My parents are
coming up from Tucson for the weekend. When she heard they were
coming up, Kris spearheaded plans to get everyone together for the
holiday. We want to do this for Brandon and make it a wonderful
holiday for him.
Thanks for all of your continued e-mail messages and jokes.
Brandon enjoys reading your notes of encouragement. He also loves
getting your cards and care packages - Thank You! Not sure when
the next update will be, so I want to wish each of you a very happy
Thanksgiving.
With great thanks,
Jeff
Hi all,
Tomorrow's the big day; Brandon will have the Gamma Knife procedure at
Harborview . This is critical - we need this to stop the tumor growth.
It is an outpatient procedure. We will be there from 7:00 until likely
late afternoon. Based on last December, this is how the day will go:
We'll arrive and get examined by all of the teams (anesthesia,
neurosurgery, and Dr. Douglas). Then Brandon will be sedated, first with
gas and then using his port. Next the neurosurgeon will attach the frame
used to ensure accurate treatment. Next Brandon will have an MRI. This
scan will have more closely-spaced slices to allow for sub-millimeter
accuracy. With this scan Dr. Douglas will develop the treatment plan.
Dr. Douglas is planning to treat both of the larger tumors in a single
treatment session. Once the plan is complete, Brandon will begin the
gamma knife treatment. We won't know the treatment time until the plan
is developed, but it will likely be close to an hour. After the
treatment is completed the neurosurgeon will remove the head frame and
then transport Brandon to the recovery room to wake up after being
sedated. Brandon will be kept asleep throughout the day. Adults are not
sedated, but it is much better to have Brandon sedated so he doesn't get
panicked with everything going on, not the least of which having the
frame bolted to his head. At the end of the day, he should have only 3
or 4 band aides covering the mounting points from the frame. As was the
case last time, we expect it'll be a while before it is known if the
treatment was successful. Brandon's next MRI at Children's is on
December 17.
Brandon started oral etoposide last Wednesday. It's 3-weeks on and
1-week off. We're working to find a good medication plan to follow the
chemo. He's still throwing up several times a day and have increased the
Zofran to try and minimize the nausea. He does and feel pretty good when
he has pain meds. It's a struggle trying to get the dose & timing so
that he's feeling good, but not over medicated.
Brandon was so looking forward to Halloween. He had fun trick or
treating with his friends around Kris' neighborhood. He went as a
Snohomish County Sheriff (using his custom uniform from Chief for a
Day). He and I build a "Jet jail" so he could take his dog Jet along as
a prisoner. Jet was so good, being a well-behaved prisoner while he was
wheeled around the neighborhood.
Brandon's cousin Ashley's soccer team won the sectional championship
game on Saturday. They all were playing to win for Brandon and wore
t-shirts with Brandon's picture under their uniforms. They want to win
the State Championship for Brandon. Go Aquinas!
Thank you for everyone's love and support. Please send your positive
energy and prayers tomorrow for a successful treatment.
love Jeff
Jet Jail
Halloween
Ashley's Team
YEAH!!!
The Gamma Knife treatment is ON for next Tuesday (November 4)! Christine
(my girlfriend) worked her magic and got Dr. Douglas excused from jury
duty next week, and likely indefinitely. Thank you for everyone that
made calls and sent suggestions. This was easier than I'd thought and
had visions of me visiting a judge downtown later this week. So on the
day we elect a new direction for the country, let's pray that the Gamma
Knife creates a new direction for Brandon - to RECOVERY!
Jeff
I wanted to send a quick update to let you now where things are this
week.
Brandon will begin
etoposide tomorrow; we'll be at Children's first thing in the
morning to get the first dose. This drug is given orally so it can
be taken at home. The course is 3 weeks on and 1 week off.
We don't anticipate anything much in terms of side effects. Dr.
Geyer (as well as Kris and I) wanted to get him on something now while
we are planning the next steps. We heard additional details from
Friday's scan. The volumetric results are back. The larger
tumor in his head grew by about 50%, the other by a little, the 2 on his
spine are stable and the new one on the spine is too small to tell yet.
The original tumor site by his brain stem is bigger but that could be
necrosis (dead tissue). We are very sick over this as we did not
expect that much growth. I just do not want to believe these
results, Brandon is doing so well.
We met with Dr. Douglas (radiation oncologist) this afternoon to discuss
Gamma Knife treatment. He thinks that this is a reasonable option
to treat the two tumors in the ventricles. There is not a sense of
urgency, but he advised doing the procedure soon. Gamma Knife
treatment is performed on Tuesdays so we were hoping to be able to get
it done next Tuesday. Problem is the Dr. Douglas has a summons for
jury duty that day. The following Tuesday is Vetrans' Day. They
are trying to work something out. In the mean time I'm going to
try and get Dr. Douglas excused from jury duty. He said that his
Chief was not able to get him excused. Please let me know if
anyone has any influence in the King County court system.
The Children's team will review Brandon's case tomorrow afternoon at
tumor board. In addition to Gamma Knife treatment, the
neurosurgeons will weigh in on the surgical option. We're also
looking for options to treat the spinal tumors. We are also
looking at a few other chemo options. We are hopeful that we will
have a next step in place by the end of the week.
Yesterday Brandon went to school and had a good day. At the end of
the day he started not feeling that great and got a bit of a fever.
He's also been experiencing strong pain in his side past several days.
The pain meds only make it marginally better. Ugh! Brandon
stayed home today but perked up in the afternoon and is looking forward
to going to school tomorrow.
I'll update later in the week,
Jeff
www.brandonsgoal.org
www.caringbridge.org/visit/
DAMMIT
It doesn't look like the topotecan is working. The MRI showed that the
tumors in Brandon's head have grown larger. One just a bit, the other
about a 25% bigger. The spots in his spine are slightly more pronounced
and there may be a new area of enhancement. Based on this result we'll
most likely stop the topotecan. His next infusion is scheduled for
Wednesday. We are looking at gamma knife as the likely next step, at
least for the two larger tumors. Gamma knife will not be an option of
they grow much larger.
We shared this news with Brandon - in an indirect way. Cory shared with
him that the scan didn't turn out the way that we'd hoped. She told him
that there wasn't anything scary on the MRI but that it didn't look like
the chemo was working. She said that we know that he doesn't like the
chemo and how it makes him feel. He agreed. We told him we would
probably stop the topotecan and would consider gamma knife. He was happy
about stopping the chemo and said "yeah, gamma knife".
Brandon is feeling pretty good today. He had some headaches but went to
school until 11:00 when he had to leave for the scan. As we left the
hospital he was tickling me and trying to rub purell on my shirt.
The team at Children's will hit the ground running on Monday. Options
include Gamma Knife, oral etoposide, and some other chemo trials. We
will spend the weekend considering what to do next and what is best for
Brandon. On Monday we'll talk with Cory and Dr. Geyer to hear their
latest thoughts. We've got multiple treatment options available - that
is a good thing.
Thank you for continuing to support Brandon (and us). Obviously I wish
more than anything to have been writing a different message right now.
love Jeff
Hi all.
I've intended to write an update for a while but just for some reason
haven't been able to bring myself to do it. I know many of you are
receiving updates from Kris'
caringbridge page.
He's had a difficult week. The second course of chemo began on
Wednesday and ended today. The treatment itself has been fine and
mostly uneventful. We decided to consent to an added component of
the study for Wednesday's infusion. They administered the drug
through the lower spine (intralumbar) rather than through his Ommaya
port (intraventricular). The rest of the treatments this week were
done through the Ommaya. Giving a done to the lower spine makes
sense since we know there are tumors located down there. We also
want to help them gain the added knowledge that may result from this
alternate delivery. For Saturday's treatment, Brandon asked his
friends Brian, Zach, and Kurt to come along. We sure appreciated
them being there so Brandon could share this with them. He really
misses spending time with his friends.
The
dexamethasone (steroid) continues to wreak havoc with Brandon's
emotions. In addition to making him depressed and sad, there are
times where he struggles to maintain composure. He tells us that
it is too hard and that he can't do this anymore. Obviously this
is incredibly hard for Kris and I to handle let alone know how to
respond. He'll be in an ok mood one minute and then sobbing the
next.
This afternoon went fairly well. He invited his buds Jack & Ryan
to go on a hike. We hiked for about an hour and a half exploring
the trails at Cougar Mountain. He had a great time spending the
afternoon with Jack and Ryan. Thanks guys!
After this second week of treatment comes the "evaluation phase" meaning
Brandon will have an MRI on Friday. I'm already quite anxious
about this next scan as it will determine if the topotecan is working.
Please begin the prayers early for this crucial benchmark.
Thank you for all of your mail. Brandon sure enjoys reading your
cards and messages of encouragement.
Love, Jeff
Hi everyone,
I wanted
to share with you how Brandon is doing this week. Brandon's
been laying low and pretty slow these past few days after finishing
the first course of chemo on Sunday. He's got this week off
and will start the next 5-day course on Tuesday. He will go to
school tomorrow for the first time since beginning his treatment.
He's not necessarily looking forward to going back yet.
The end of last week was a
struggle. The infusions went fine, but Brandon was having a
real difficult time. He was mad and frustrated and is pretty
scared. On Friday we realized that the steroids were causing
his emotions to be enhanced. He would be ok one minute and
then be overwhelmed a moment later. We skipped the evening
doses Friday and Saturday and now he is off the steroid until the
next course begins. Thankfully this seems to have abated the
emotional extremes. We also substituted benadryl for the
lorazepam. The steroid (dexamethasone) is part of the protocol
to control headaches. Fortunately Brandon hasn't really
experience any headaches. We are looking to have the steroid
dose reduced but need to get approval from the study chair.
Dr. Geyer is meeting with Dr. Blaney (the study chair) this week at
a PBTC conference.
Friday night I was able to
enjoy a quick treat: Brandon wanted to go to Bellevue Square
to visit the Lego store. He had been very upset earlier in the
afternoon and had calmed down when we set out for the mall. At
the mall, two elevators were side by side. Brandon told me he
wanted to race in the elevators and raced off in that direction.
It was one of the few glimpses of normalcy that I'd seen in a while
and was so nice to see!
Thank you for all of the
mail, your thoughtfulness is appreciated!
Jeff
Discharge Day
Care Package
Salmon
Days
Party for Brandon
Hi all,
I wanted to let you know how Brandon's doing. He successfully
completed his first day of treatment today. It was a long day, we
were at the hospital from 6:45 AM to 5:00 PM. Brandon was really
scared going into today, but he did quite well. He was very
apprehensive about the idea of a needle going into his head. After
the initial access of his Ommaya Reservoir (his intraventricular port),
he was a bit more comfortable having seen what all the procedure
entailed. A dose of Ativan (anti-anxiety med) certainly helped as
well. Initially the Ativan made him a bit amped up - he and Cory
were being a bit silly this morning. Then it made him sleepy and
Brandon snoozed for a few hours in between watching some movies.
For the first day of infusion there are also a series of CSF draws that
are a part of the trial. CSF draws were taken following the
infusion at 15 minutes, 30 minutes, 1 hour, 3 hours and 6 hours.
Each draw meant another quick access for his intraventricular port.
Brandon did great at this - one time he remained sleeping as Cory
obtained the sample. On the way home form the hospital Brandon
started to feel quite bad. He received some benadryl along with
pain meds and Zofran. We're not sure what is causing the
discomfort, hopefully he'll be able to get a good nights rest.
Tomorrow is the second infusion, starting at 8:00 AM. We should be
done in an hour or so as there are no CSF draws. We also have a
neurosurgery follow up later in the morning to check on the recovery
from last Friday's procedures. We'll finish up the first 5 days of
infusion on Sunday. Next week will hopefully be a quiet week.
To catch you up on what's happened since Friday:
Thank you for all of the visitors at the hospital. Brandon lit up
when his friends Jack and Ryan stopped by on Friday evening!
Brandon was discharged around 1:00 Saturday afternoon. He was
excited to see the medevac helicopter outside and wanted to get a
picture. That afternoon Brandon was treated to a great party by
Kris' good friends Stacy and Wes from Montana. Several of his
friends came over to share in cake and ice cream (for dinner). It
was a real treat for us to see Brandon have a great time with his
friends!
On Monday Brandon made it school for a half day. He was very
excited to see his friends and received a warm welcome back from his
classmates. He wore a hat to class, but wasn't shy about the large
incision on his forehead and stopped to show it to several teachers on
the way to his classroom. Tuesday Brandon was very tired and slept
until 11:00 AM! He woke up feeling bad and wound up staying home
from school. He didn't feel much better for the rest of the day.
Brandon is having a tough time with all of this and has told us he is
scared and worries about the chemo not working. This is incredibly
hard to know how to respond. It breaks my heart to see him
struggling with this. As he's gotten older he certainly has a more
in depth understanding of his situation. He's told us that this is
too hard and that sometimes it seems easier just to give up. :-(
He's agreed that he will not do that and we will all be right there with
him working as hard as we can too.
Thank you for all of your cards, Brandon loves reading your messages!
Jeff
Hi everyone,
Both procedures went smoothly this morning, Brandon did great! The
Ommaya reservoir placement was first and was then follow by a
port surgery. We were pleased that they were able to fit this
in today so Brandon didn't have to have an additional procedure (thanks
Dr. Geyer for making this happen). Both of his surgeons were very nice
and took excellent care of Brandon. Thank you Dr. Browd and Dr.
Healey! They were also able to complete the nuclear medicine flow
study. Two additional measurements were needed to assess the flow
rate when utilizing the new Ommaya reservoir. Brandon will be
inpatient tonight for observation which is typical for all Ommaya/port
surgeries. But is necessary now because of they found a hemorrhage
in his right ventricle in the post-op CT. Likely just from the
procedure, but they want to be sure it is not something critical with
the tumor. Brandon is already eagerly awaiting the Dr's approval
to be discharged.
Brandon is resting peacefully right now. He's got pain at the incision
sites and some head pain as well. His nurse is taking great care
of us and managing his pain. Brandon wasn't too happy with the
nurse in the recovery area. Kris asked him if they gave him
anything to drink. He replied, "No, nothing - not even a goodbye"
He told us this while in the middle of the gamma camera testing (flow
study) - I had to bite my lip not to bust out laughing. That's our
Brandon!
Cory stopped by to see how Brandon was doing. She said it looks
like we will start the Topotecan treatment on Wednesday. All of
the treatment is outpatient with the medicine given in 5-day cycles.
The first day is 8 hours, the remainder only an hour or so. They
thought he'd still be able to go to school and will try to schedule
early appointments.
So with the hope that all goes well and we are discharged tomorrow.
We are really looking forward to a few days of quiet and no hospital
visits.
Have a great weekend,
Jeff
www.brandonsgoal.org
Hi everyone,
I sat down to write this
update, trying to include enough details while wanting to share the
feelings I've been going through as well, then saw Kris' post on
CaringBridge. It captured everything so well I decided to just
past her update (with links added of course). Afterwords I added
information about yesterday - I was exhausted by the end of the day
yesterday and just wasn't up for sending an update.
Hi all, I hope you're well. The day started for Brandon with the last scan of the flow study this morning. It went well and they think all looks fine! We then headed back down to Children's at 3:30 so Dr. Geyer could check out Brandon. He was pleased he was doing better after the spinal tap yesterday.
Then Jeff and I met with Dr. Geyer, Cory, and the neurosurgery team. After 2 hours with an amazing group of people we came to a decision on treatment.
First of all they have some concerns about the pressure in Brandon's head. The best way to cure that is to put in a shunt that helps to drain the excess fluid. It is simply pulled off of his ventricle and drained thru a tube into his belly. But if B has a shunt he can't be on the Topotecan study. So.....they are hopeful that by putting in the Ommaya Resevoir into his head that will be used to give him the Topotecan they can also use it to drain off the excess fluid. If this works and he can remain comfortable then we are good.
Next was deciding if Brandon should get surgery or gamma knife to better control the 2 big tumors in his head. If they did either of those to him now he could not start the Topotecan right away. It is very likely that there are millions of cells floating around in his cerebral-spinal fluid so it is best to start attacking those now so no other tumors grow.
Then we were able to get all of our questions answered about the Topotecan study. This is so scary because it is a Phase I study that has never been done on children before. But...this is really his best shot at this time. Brandon's prognosis is not good, but we have not lost hope and neither has he. Brandon told me today that the alternative of just giving up is not acceptable to him, he is amazing! This drug and how it is delivered directly into his head makes the most sense. It is a good drug and it gets right to the tumors without attacking the rest of his body. Makes a lot of sense if you think about it! So we signed and consented today to start Brandon on this study next week. Friday morning he will have the Ommaya Resevoir put in. It is about a 1 hour surgery and it is inserted into his head just under the skin with a tube going down into the ventricle.
Lastly we had to decide what to do along with the Topotecan. None of us feel we can just rely on the Topotecan. We could have gone for some big time chemo or another investigational drug but we decided on Etoposide. Pretty standard, ependys have responded to it in the past and it is tolerable.
So with all of this if he does not do well on the study or it does not attack the tumors then we can pull him off immediately and start him on something else. Likely it would be to put in a shunt, do gamma knife and try another drug.
So tomorrow there is actually nothing! B is excited to go to school and I am excited to get caught back up on work. Work has been great for both Jeff and I. Both of our companies are still so amazing and supportive. At the same time we both like working and it is also a great distraction to be engrossed in a project for work to take our minds off of all of this.
Thank you for all of your prayers and posts. Thank you to Cory and Dr. Geyer. Cory has been holding our hands all week and has been so great. Dr. Geyer was so methodical and caring in the meeting today.
Yesterday we spend most
of the day at the hospital. Brandon had a LP (lumbar puncture, or
spinal tap) to assess his CSF pressure. It was quite high.
Normal pressure is around 9 - his was 33! No wonder his head hurt
so much. They withdrew around 10cc of fluid and it gave him
immediate relief. They also injected radioactive dye to check the
flow rate of his CSF - one of the eligibility factors for the Topotecan
study. He had to lay flat with his feet slightly elevated for most
of the day. He didn't like this and threw up a few times as a
result. By the end of the day he was felling much better an
Brandon and I went to the Storm playoff game. I cherished this
time with him as he was having such a fun time at the game.
Afterwards when we got home he wanted to watch a movie and build K'nex.
Love, Jeff
www.brandonsgoal.org
www.caringbridge.org/visit/
We were dealt another blow again this morning. There are two new tumors
in Brandon's spine. They are both fairly small and are in the lower
portion of his spine. This felt like another kick in the stomach. We sat
down with Cory and talked about what this means. In short it doesn't
change the big picture - there is no change to the treatment options
under consideration and no change to the urgency. Luckily these new
tumors in the spine are not producing any symptoms for Brandon (likely
symptoms would be sharp pain in the legs). They also did a quick CT scan
to check his ventricles. They are slightly enlarged, but thankfully no
signs of
hydrocephalus. We did not tell Brandon about this latest news. He
said again today that he is scared his tumor is back so Kris and I
agreed there is no need to worry him more right now.
We're still having the LP tomorrow. Cory will be performing the
procedure. They will be looking at the initial pressure. If it's above
normal she will draw out additional fluid with the goal being to reduce
the pressure that is likely the source of his head pain. In addition
they will be injecting a dye to determine the flow rate of the spinal
fluid. He will have a series of CT scans to assess the flow rate. This
is a necessary parameter for one of the chemo protocols we are
considering.
Late Wednesday afternoon, following tumor board we will meet with the
treatment team to discuss the various treatment options and hopefully
narrow it down. The plan will likely be one or two chemo protocols. One
being a Phase I trial. Surgery may be too risky at this point due to a
concern of bleeding. Gamma knife treatment may be an alternative.
His head pain seems to be a little better. He told Cory today that it
was a 5. Also he's not been asking for pain meds during the day. Over
the weekend Brandon did pretty well, but was tired often. This weekend
he and I went to a birthday party for Christine's niece in Vancouver
(WA). At the party we made fresh apple cider with a fruit press. Brandon
got a work out manning the press. Then on Sunday we went to Christine's
brother's house so Brandon could ride a quad (4-wheel ATV). Brandon has
such a great time! He rode for about an hour - until the gas ran out. He
was mud covered when he was done and told me, "that was wicked".
Along with a few pictures from the weekend, Brandon's wanted to send out
pictures from his MRI and CT scan this morning for his friends to see.
Many of you have asked what you can do. Brandon loves going to the
mailbox and getting mail. So if you have time to drop a note or postcard
it sure does make him happy!
14449 124th Ave NE #23
Kirkland, WA 98034
Thank you so much for all of your prayers and support,
Jeff
Making apple juice
racing down the straightaway
MRI
Hi everyone, we
talked to Children's today following the tumor board. All options
are still being considered - chemo, surgery, and gamma knife. We
are actively consulting with the doctors at Children's as well as at St
Jude, and a few others. Chemo is a logical choice since it treats
the (assumed) tumor cells present but not visible, but we also are
concerned about debulking the large tumor - soon. But we need to
see if any of the possible trials require a waiting period following
surgery. We hope to be narrowing down our treatment options early
next week.
Next up is a spinal MRI
at 7:45 Monday morning. He was scheduled for a lumbar puncture
tomorrow but they want to wait until they can review the results of the
spinal MRI. Since the new tumors in his brain are metastatic
disease (spread of cancer - as opposed to a recurrence at the
original tumor site) they want to first check his spine since the CSF
flows from the ventricles down to the spinal cord. If the spine is
clear (please, please be clear) they will go ahead with the LP.
Brandon has been lying
low most of the day. The pain is still there and he's got a little
cold on top of that. He's scared and has been asking many
questions. Kris and I can only wonder what thoughts must be going
through his head. The pain is most likely due to increased
pressure in the ventricles due to the tumors displacing the CSF.
If not before, I'll update you again on Monday. I am so
grateful for all of the support and encouraging words from all of you.
Thank you!
love, Jeff
www.brandonsgoal.org
Thank you for all of your support and prayers today. The news is
not good. We met with Brandon's doctor this afternoon and there
are 3 new separate tumors. I felt absolutely sick when Cory showed
us the scan. They are all located higher up in the brain than the
previous tumor site. They are in and along the
ventricles, the lateral ventricles I believe. One of these is
fairly large (about 24mm in the largest dimension) and has grown pretty
quickly. The gamma knife treatment site still appears stable.
We are waiting for the doctors to discuss Brandon's case before any
decisions are made regarding treatment. We trust that they will
carefully weigh all of the available options and present us with a solid
recommendation. Children's has their tumor board Wednesday
afternoon. We will also consult with the team at at St Jude.
At this point I ask each of you to pray for Brandon and for our
strength. I can feel a part of me pulling towards that lost hope
feeling and we can use all of your support to carry us through.
After the meeting with Cory, Kris and I asked Brandon if he knew why he
was having the pain in his head. He kind of shrugged his
shoulders. I told him his tumor had come back. His eyes got
big when he heard this, obviously it was unexpected. I nearly lost
it when I saw his reaction. In his eyes I saw shock and fear.
It was absolutely heart breaking. Later in the day he told me a
few times, "I can't believe that my tumor came back".
The pain in his head is still "an 11". The docs are somewhat
stumped as to the cause. The pain meds (oxycodone) have not been
working. We tried an IV boost of steroid this afternoon but it
didn't seem to have an effect either. His pain tolerance is
amazing - he wanted to build Lego tonight and was at it for 90 minutes
straight without any complaints about the pain. On Thursday
afternoon Brandon will have a lumbar puncture and spinal MRI to check
these areas for tumor cells.
I'll send another update when we have more information
Jeff
P.S. Kris has started a CaringBridge page for Brandon. The
address is
www.caringbridge.org/visit/
I need to make a request for your positive energy and prayers of hope
for Brandon. It looks like he's had another recurrence.
We took him in to Children's tonight because of strong pain he's been
experiencing the past few days on the back of his head, around the
incision site. Tylenol wasn't doing it and Brandon wanted to go to
the ER it hurt so bad. They got us right in and a mass was visible
on the CT scan. We will be back in the morning for an MRI and
consultation with Cory and Dr. Geyer.
I'll keep you updated but wanted to get this out right away.
Thank you,
Jeff
Brandon's scan looked good!!!
We just saw Dr. Geyer and he showed us the scan. There is increased
enhancement at the gamma knife treatment location, but he is pretty sure
that this is the expected swelling from the gamma knife ("enhancement"
are bright areas on the MRI where the contrast agent is visible in the
blood vessels of the brain. Both tumor cells and swelling show up as
enhanced areas on the scan.) The size of the enhanced area is about
doubled since the April scan (to about 20 mm). The rest of the scan was
normal - yeah!
Thanks you so much for your positive thoughts and prayers today!!!
Have a great weekend,
Jeff
Hi everyone,
I hope you are having a fun and safe summer. First up, I wanted to
let you know that Brandon's having his next MRI on Friday afternoon at
1:00. He is doing very good - as full of energy as ever!
Over the past month or two Brandon has shown some signs of increased
cranial swelling. His facial palsy is increased and at times his
speech is more difficult to understand. I am telling myself that
this only the expected swelling from the gamma knife, but this isn't
working to make the anxiety go away leading up to Friday's scan.
The gamma knife swelling can last a year or more following treatment.
Brandon's hearing continues to remain stable. He had another
follow a few weeks ago and his otolaryngology Drs remain pleased he is
doing so well. He had another hearing evaluation which showed an
increased response for the lower frequencies. I am very grateful
that his hearing aid is working so well. However I get upset with
myself for being frustrated by having to repeat myself multiple times.
Brandon is having a great summer so far! He's been quite busy.
Here's a rundown of what he's been up to the past few months:
Track & Field
Brandon was on his school's track team for the first time. He
participated in the 50 yard dash, relay, long jump, ball throw, and ball
kick. He liked the relay the best. He raced the 50 yard dash
at the first meet and was very discouraged. He was quite a bit
slower than the other kids and Brandon wanted to go home. After a
talk and much needed encouragement he stuck it out and participated in
other events. I was really proud of him!
Here are some track photos
Ferry ride to Bremerton
Back in May Brandon and I took a ferry to
Bremerton for lunch. It was a beautiful day. We had
lunch on the waterfront and then went for a tour of the
USS Turner Joy,
a retired Naval Destroyer open for tours. Of course Brandon
loved exploring every part of the ship.
End of the School Year
Wow, Brandon is now a 4th grader! Funny how just thinking of what
grade he's in makes him seem so much older. Before finishing up
the year Brandon's class took a field trip to the International District
in Seattle for a fortune cookie factory tour. But Brandon and his
classmates preferred checking out one of
Seattle's embroiled automatic toilets. Other end of the year
events included a harbor cruise on Elliott Bay and the annual Hukilau
performance. Thanks for a great year Mrs. Ikeda-Yee!
Bremerton, Harbour tour, and other spring photos
St Jude Events & Lemonade stands
Brandon's been able to help out at a handful of events for St Jude
including Up 'till Dawns at Seattle U and UW, and a
powder puff game at Newport High School. A recent development
is Brandon beginning to "notice" the other sex. It's quite cute
and also funny. At the UW Up 'till down he enjoyed
getting pictures with all of the Tri-Delt women. Brandon also
held some more lemonade stand sales to raise money for St Jude and for
Children's.
Southern California Vacation
A week after school got out, I took Brandon down to California for a
whirlwind theme park tour. First up was Sea World where Brandon
loved the pet show so much we saw it twice. Feeding the dolphins
was another highlight. Next was a return trip to Knott's Berry
Farm. For as long as I can remember Brandon has been wanting to go
back to Knott's for the Huff & Puff, a ride at Camp Snoop where you push
and pump a mini mining car around a track. He rode it at least a
dozen times during the day! He just made it under the 52" height
restriction. And speaking of height restrictions, Brandon is now
above the big 48" which meant he could go on the "big boy" rides.
He decided to give
Montezuma's Revenge a try and loved it!...I think we've got the
beginnings of a rollercoster fanatic on our hands. Yes!
Legoland was next, what a great park! When I was Brandon's ago I
dreamed of going to Legoland (then only in Denmark). Of course
there are amazing Lego buildings all around, but the rides are very fun
and unique. Brandon's clear favorite was the Fun Town Driving
School. This ride is a mini street grid complete with traffic signals.
The cars run completely free and it's up to the kids to follow the rules
of the road. The following day we took a train ride to San Diego
and I surprised Brandon by taking him to the
USS Midway Museum for a tour. The ship was so interesting we
were there for almost 5 hours! After he was so interested in
visiting the USS Turner Joy I was quite excited to surprise Brandon with
the USS Midway tour.
Last, and of course not least, was Disneyland. Before the trip I
wondered if Brandon would go on Space Mountain. After the day at
Knott's there was no question. He liked SM, but the strong breeze
was a problem. (A side effect of his surgeries, Brandon has a
difficult time breathing when it is windy out). His favorite rides
were Thunder Mountain, Splash Mountain (but of course he didn't want to
get a drop of water on him), and Star Tours. At California
Adventures Brandon absolutely loved
California Screamin'. He (honest his idea) wanted to ride in
the front seat. Another sign of Brandon getting older was his
reaction after riding Pooh (a big thumbs down) and Peter Pan ("it was
all right"). Up until the last day or so, he was GO-GO-GO. I
couldn't believe how he kept going and going. Each day he wanted
to stay until the park closed. Disneyland was open until midnight
and Brandon was determined to make it. A bit after 11:00 he hit
the wall. As we were leaving the park I literally had to hold his
hand to keep him from falling over.
Vacation Photos
A Sad Goodbye
On June 5 we had to to say goodbye to our greyhound Rudy. He was
almost 14 and his back legs and hips failed him. Rich (Kris' dad),
Brandon and I (Brandon wanted to go) took him into the vet and he was
quite a bit worse off than we were aware. After talking with the
doctor and emphasizing what was best for Rudy, the grueling decision was
made to let him go and end his suffering. Brandon really wanted to
go with me to the vet to say goodbye. As sad as it was to say
goodbye to Rudy, it was heart-wrenching to see Brandon so sad and in so
much grief. Thankfully his playmate Jet is still as young and
energetic as ever. There have been several occasions were
Brandon's gotten sad when thinking of Rudy or seeing another greyhound.
Here are some pictures of Rudy.
Help for a dear friend
We were quite saddened to hear that a good friend of ours, Reid Averill,
was recently diagnosed with a grade 4 glioblastoma. We met Reid
while in Memphis for Brandon's treatment in 2003. He gave Brandon
a gift he'll never forget - a
VIP behind-the-scenes tour of FedEx! He took Brandon all
around the FedEx hub and for a ride in one of the FedEx cockpit
simulators (Reid is a pilot for FedEx). Later he even took
Brandon up for ride in his own plane.
After a successful resection at MD Anderson in Houston, Reid is
currently undergoing chemo and radiation treatment. It's a small
world - before transferring to MD Anderson in Houston for treatment,
Reid was seen by Dr. Boop, Brandon's neurosurgeon. Please send your
prayers of support Reid's way.
Whew, I'm tired after remembering all that we've been up to lately.
Next week Brandon and Kris are off to
Camp Agape, a
cancer camp for kids and their families.
I will keep you updated on Friday after the MRI. Please include
Brandon in your thoughts and prayers.
With love and friendship,
Jeff
www.brandonsgoal.org
Brandon's scan was stable!!!!!!!!!!!!!
Thank you for all of your prayers and positive thoughts this
afternoon!!!
The gamma knife treatment area shows increased enhancement. This is
expected and is most likely progression of swelling from the gamma knife
radiation.
Thank you for helping us get through the scan today,
Jeff
Happy spring everyone!
It's been too long since my last update.
First off, Brandon has his next MRI on Monday, April 21 (tomorrow) at 1:15 PM. I've been counting the days until this scan and will be quite anxious on Monday. Your extra "help" on this day will be very much appreciated. I will send out the results as soon as I can Monday afternoon.
Speaking of MRI results, I wanted to add some clarification to the last update. When I had said that the last scan (in February) was "clean" I meant that nothing new was seen. The recurrence area from December still shows up as an enhanced area, although it was different following the gamma knife treatment. It could be a while until this area stabilizes and we have a good indication on the effectiveness of the gamma knife.
It's been a busy last few months, here's what Brandon's been up to:
Back in February during his mid-winter break, Brandon and I went to Tucson to visit my parents and my sister's family. Brandon wasted no time after we arrived. The first day he and grandma baked cookies, started making a new quilt, and of course went for a trip in the golf cart. We took in a parade and many more golf cart trips. Not quite warm enough for swimming but we still had a great time. As usual I took a ton of pictures.
In mid-March Brandon helped out the gang at KMPS for the annual St Jude KMPS radiothon. This was Brandon's fourth year and was really excited to be down at the station. The initial plan was for Brandon to be down at the station on Thursday since Friday was his birthday. But after having so much fun Thursday, he wanted to go back again on Friday. So after a 1/2 day at school (to share birthday treats with his class) I took him down to the station after lunch. Along with his KMPS friends Flo, Tony, and Tall Paul, he had a great time hanging with Taryn and Lacy from St Jude and with Sara Stark. Sara is also an Ependymoma survivor. She is 9 years old and lives near Vancouver, WA. Here are pictures from the radiothon.
The day after the KMPS radiothon, Brandon and a bunch of his friends celebrated his 9th birthday at Jump Planet. Brandon had a great time running around with so many friends. I really enjoyed watching him have so much fun and enjoying himself. I made sure I "took it in"! It was a special treat to have his Bumpa visiting from Texas as well as Aunt Gina and cousin Ryan in from Boise. This year Kris and I decided to do things a bit different. We love to let Brandon have this kind of party, but since 20+ kids can be invited to Jump Planet we didn't think it was appropriate for his to receive that many gifts. Brandon was asked how he wanted to handle this. He remembered that he was inpatient at Children's on his 4th birthday and someone brought some presents to his room when he could not have a party. So he decided to ask all of his friends to bring an unwrapped gift to the party. The kids then wrapped them and made cards. It was great to see so much positive energy as everyone decorated their cards and thought of the kids that would be receiving the presents - very cool! Birthday party photos
In late March Brandon and Kris attended two other St Jude fund raisers, an Up 'till dawn at Seattle University and a dinner auction at Sip wine bar and restaurant in Issaquah. A few weeks ago Brandon decided to have a lemonade stand to raise money for Children's. His friends around the neighborhood helped out while Brandon and his friend Danielle canvased the neighborhood for pre-sale orders! The neighbors game out in force and Brandon raised over $200!!! Brandon asked if they would actually give the $$ to a family that was in patient at Children's. After consulting with his nurse Cory, Brandon and Kris went down to Children's and gave 2 teenage girls on chemo each $100. Both girls are away from their homes and Cory said they would appreciate the gift from Brandon. They were very surprised and thankful, it was really sweet! When they were done Brandon said to Kris "Mom, that felt nice".
On Friday, Brandon participated in the talent show at his school. He and Jet performed several dog tricks. Brandon (and Jet) performed very well. After the show were were surprised by the crazy weather, 1" of snow was on the ground! Here's a link to some pictures from the talent show plus others from this year.
Back on March 3rd Brandon had an Audiology follow up to check on his hearing and see how his ears were healing from an infection he got back in January. The infection appeared to have resolved itself. Dr. Sie was able to remove a lot of wax (this is a chronic problem for kids who have received radiation). This was quite painful and it was hard to watch Brandon undergo this procedure. Brandon is so cooperative and has a high pain tolerance but it was difficult to watch him cry because it hurt so bad. They then took another hearing test and there was no improvement. This was not the result we were looking for. We were hoping that the hearing would return once the infection cleared. We discussed the results with Dr. Sie who is one of the best in her field - we are very fortunate to have her here at Children's. She was surprised how well he was doing with the considerable loss and said that due to the full brain and spine radiation, in addition to the other radiation treatments, we could be seeing Brandon slowly losing his hearing. It may not come to that but she told us today about Cochlear Implants if it gets to that. Without his hearing aid he can barely hear, but with it in he is still doing pretty well. After this appointment I was sad. I felt that the writing was on the wall that Brandon would eventually loose his hearing. With all that Brandon has gone through and what he is still facing, it would sure be nice if he could catch a break with the hearing.
At the last follow-up with Brandon's Endocrine Dr.
she said that the growth hormone is doing its job and that he is
holding steady around the 20th percentile. He's certainly
growing - to the point where I can't pick him up so easily.
I want to thank you again for all of your support. Please have
Brandon in your thoughts and prayers on Monday. I'm keeping
myself distracted until then so I don't have that free time where my
mind starts thinking about things I'd rather not think about.
Brandon continues to do well. He's a very happy and funny kid
most of the time. He wakes up each day with a smile and a
positive attitude (at least until I ask if he finished his homework)
and ready to get out there and do it.
Love and friendship,
Jeff
www.brandonsgoal.org
Happy Friday everyone!
Just a quick note to let
you know that Brandon will be helping out at the
KMPS St Jude Radiothon
this afternoon. This is his 4th year participating. He has
such a blast helping Flo and hanging with Tony. Brandon will likely be
on the air, so listen for him if you can, 94.1 FM (for those of you not
in Seattle, you can listen online at
www.kmps.com).
More important, today is
also Brandon's 9th birthday! This morning over birthday breakfast
at Denny's he told he that he did feel older. :-) I'm so
thankful to be celebrating another birthday with this special boy.
I'll send another update with pictures from Brandon's birthday party and
the radiothon.
Thank you for everyone's
positive thoughts and prayers of support.
Jeff
Hi all,
Brandon's MRI is clean!!!!! Thank you for all of your prayers and
positive thoughts!!
The Gamma Knife treatment area shows a little enhancement - likely
swelling, but from looking at the scans, the recurrent tumor appears
noticeably smaller!
love Jeff
Hi all,
I wanted to let you know that Brandon will an MRI tomorrow at 12:30 PM.
It was going to be next week, but they had a last minute cancellation.
This will be his first follow-up scan since the Gamma Knife and I admit
that I'll be quite anxious waiting on the results. We don't necessarily
expect to see conclusive results from the Gamma Knife procedure yet -
it's the other areas that make me nervous. There will likely be swelling
in the gamma knife treatment area which will make it difficult to
determine if there have been any changes to the recurrent tumor. Both
swelling and tumor tissue appear similar on a MRI scan. We have an
appointment at 2:00 following the scan and will get an update out later
in the day.
Brandon continues to do good and seems to be adjusting well to his
hearing aid. He received a new ear plug last week at Children's. This
one fits better and has eliminated the feedback problem he was having
with the old plug. they also enabled the program button so that Brandon
can change the sensitivity of the hearing aid for noisy situations (like
PE and music class). He's been skipping music class and going to the
library ever since he received the new hearing aid. Today he was going
back to music class for the first time and told me that he thought his
music teacher would be surprised to see him!
As Brandon is getting older he is thinking about his situation more. On
several occasions (typically out of the blue) he has asked both Kris and
I when we will know if the Gamma Knife worked. It's hard to answer,
especially since we don't have a good idea either - it could be many
more months before we know.
We consulted with doctors regarding a next phase of treatment. They want
to wait and see how Brandon responds to the Gamma Knife, so we will not
start any type of chemo at this time. We trust the doctors but at the
same time feel some anxiety around the thought that we need to try and
stay ahead of his cancer.
Some if you have asked about our trip to St Jude. We did not go back to
Memphis this week as was previously planned (before the recurrence).
Since he is now being treated in Seattle, Brandon's treatment team
thought it was best that his primary follow-up be done in Seattle. Dr.
Merchant will always be available to us when needed, however for now
will no longer be going back to Memphis for follow-up appointments.
A friend wrote that "Life is precious and should not be taken advantage
of". I cannot agree more. I'd like to ask all of you for a minute of
positive thoughts and/or prayers for a clean scan tomorrow. I am very
appreciative and thank you in advance.
Jeff
Hi all, I wanted to wish you all a happy new year and give a quick
update about Brandon.
He is doing great! You'd never guess he had Gamma Knife 6 days ago. He
has been playing and doing well!! Since Friday, however, there have been
a few more bumps to deal with.
Going into the surgery Brandon had a cold that caused an ear infection.
We took him to his pediatrician on Saturday and they prescribed an
antibiotic. On Sunday morning he woke up scared and in a state of panic
- he could not hear! (he is deaf in his left ear from the surgeries in
2003). He asked me, "Am I deaf!?!" This was heartbreaking and at the
time time traumatizing for me as I struggled to communicate with him. I
wrote messages to him to communicate and told him I thought it was the
ear wax causing the hearing loss. We called the radiation oncologist and
he felt it was attributed to the ear infection. He suggested waiting it
out for the day and see what happens. On Sunday night it was not any
better so we called Children's on Monday morning. They had us come into
ENT.
They cleaned out his ear, quite a bit of wax. They also had us do a
hearing test on his hearing as well they conducted a test to check the
strength of the nerve. Well, to our dismay his nerve function has
dropped considerably. He had lost some of the hearing in his right ear
as it was due to the radiation. (he is completely deaf in his left) So
on top of the ear infection he has lost more hearing in his left, down
to 80db. We are so bummed for Brandon. We want him to just catch a break
in all of this and it seems that since his recurrence it has been
anything but that. But we are so thankful he is doing well and we will
get this worked out!
So, school shall be interesting! His school district is awesome so we
know we will get this all figured out but it takes time. So everyone is
talking VERY loudly and there is lots of repeating! We have a follow-up
appointment with Children's this afternoon to see if they can re-program
his hearing aid to assist him with this diminished hearing loss.
Jeff
