Brandon's Updates - 2008 through 2011
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
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.
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.
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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.
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,
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,
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,
Day 0 Day 1 Day 2
Day 3 Day 4 Day 5
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
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 (email@example.com) if your kids are able to make it during the next couple of weeks. Thank you!!!
Lego Party & Toy Drive Photos
KOMO TV News segment on toy drive NOTE: Click the ="Video" tab to watch the segment
Tacoma Bus Adventure Photos
Have a fun and safe New Year. Thank you,
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.
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.
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,
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:
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.
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
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,
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.
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.
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.
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
thing: This Friday, October 2, is
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
That's it for now.
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.
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
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.
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
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,
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,
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!
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.
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
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.
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.
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.
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
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!
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.
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.
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,
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
Brauns party moves to Aviation Center theater with other members of the public for start of the 10 AM Boeing public tour.
Boeing tour guide provides welcoming remarks from stage, dims lights, and begins showing 7-minute Boeing film.
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.
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.
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.
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
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,
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
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.
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.
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
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
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.
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
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
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
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.
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.
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.
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.
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,
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.
Brandon and Santa Brandon on quad
happy to report that Brandon's scan was pretty good! We were
relieved when Dr.
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.
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.
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,
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.
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!
I wanted to send a quick update to let you now where things are this
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,
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.
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.
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!
Discharge Day Care Package Salmon Days
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!
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,
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.
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
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,
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 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!
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
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.
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,
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.
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,
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,
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,
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.
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.
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.
Click for Brandon's 2006 & 2007 Updates
Click here for Brandon's 2005 Updates
Click here for Brandon's 2004 Updates
Click here for Brandon's 2003 Updates