Friends and Family,
Thank you so much for thinking of Brandon today! Your prayers, good thoughts, and positive energy were well received. Brandon finished the gamma knife procedure today and is doing quite well. Brandon was a champ throughout the day! He was his usual personable self, being chatty with the doctors and nurses, but also making sure he knew what was going to happen every step of the way.
After completing the treatment planning Dr. Douglas showed us the target area and dosing information. The scans taken this morning showed an outcrop portion of the tumor had progressed towards the brain stem. Also the tumor was intruding on a cranial nerve canal. Both of these situations would have made the surgical option that much more difficult - this was a reassurance that we had made the right decision.
Brandon came out of recovery around 4:00 and was in good spirits. After being sedated for almost 6 hours he was ready for some food!
The entire gamma knife team at Harborview took excellent care to Brandon. A huge thank you to them, especially the anesthesiologists.
It'll be a few months minimum before we will know the outcome of the gamma knife procedure. We'll have a follow up at Children's in about 2 months. We also have our previously scheduled appointments at St. Jude on Jan 28 & 29th.
So for today, it is time to give thanks for Brandon coming through the procedure so well. Next we turn our attention to following up on the gamma knife results and consider proactive chemotherapy treatment options.
Thank you so much for all of your support throughout this difficult journey!!!
A happy and hope-filled new year,
After much research and several doctor meetings, phone calls, and e-mail messages we think we're coming to a treatment decision. We will likely move forward with gamma knife treatment this Friday in Seattle. It has been an excruciating process with our minds circling all over the place. Our 'preferred direction" has seemed to change after each meeting. But after having the weekend for things to settle we seem to keep coming back to gamma knife-only option. A very large thanks to all who have helped us in this process - friends, family, and especially the doctors. It is truly wonderful how supportive and caring Brandon's doctors are - objectively laying out the options, offering their honest opinions, and making themselves very available during the holidays.
On top of all of this discussion about treatment options is the bigger issue of what each option means to Brandon. We find ourselves in "business mode" when talking about the various treatment options with the associated risks and benefits. But then step back and take in the gravity of what each would mean for Brandon. Also coming to grips with the fact that we are most likely working to manager rather than cure the tumor makes it all the more difficult. BUT we are not loosing hope and are not getting down on our knees!
After Brandon has recovered from the gamma knife procedure we will continue to research the clinical trials for options for further treatment should another tumor recur we want to be ready with a short list of options which could again be Gamma Knife, surgery and or a chemotherapy regimen. We are still very hopeful that Brandon will not recur again, but, realistically his cancer is getting more and more aggressive and we will likely be facing more tumors in the future.
We have until Thursday to make the final decision, but it is likely that we will move forward with doing gamma knife this Friday at Harbor View with Dr. Douglas from Children's/UW Medical Center. He will be there just for the day and should be feeling better on Saturday. We had thought we would do a surgery prior to the GK but the risks appear too high at this point, especially considering that there isn't any significant demonstrated benefit to adding surgery. Brandon is doing very well now and it would be quite difficult to have him come out of surgery with feeding tubes or even a tracheotomy, even though these are not likely - they are certainly a possibility. Yesterday Brandon asked Kris verbatim, "Mom, on a scale of 1 to 10 how good is Gamma Knife and how good is Surgery and Gamma Knife?" How smart is he! She told him surgery and gamma knife is about a 9 and gamma knife alone is an 8 or a 9. So when weighing all of this we have to listen to him although he knows that this is ultimately his parent's decision. We could always go back with a surgery if necessary, but at this point we have to go with the best treatment that also preserves the best quality of life.
Thank you for your hope, prayers, and support. I wish everyone a wonderful holiday on this Christmas eve day.
Yesterday afternoon we heard the results of the tumor board discussions from Dr. Merchant at St. Jude and Cory (Hematology-Oncology nurse at Children's) at Children's. Both hospitals agree that the scan shows a local recurrence of tumor. They both agree that surgery followed by gamma knife treatment looks to be the best course of action. Both Dr. Avellino (neurosurgeon at Children's) and Dr. Boop (neurosurgeon at St. Jude) feel the tumor is resectable - what a relief! The recurrence is up against the 12th cranial nerve (tongue functions). The previous recurrence was up against the brain stem - a precarious location.
It is a big relief that they are both consistent in their recommendations. To have differing opinions would certainly add stress to this already unbearable situation.
Here's what is next:
- Follow up by phone with Dr. Boop in the next few days
- Meeting with Dr. Geyer (Brandon's oncologist at Children's) on Friday morning
- Meet with Dr. Avellino at Children's next week, likely on Monday
- Meet with Dr. Douglas (radiation oncologist at UW Medical Center) next week to discuss Gamma Knife
The schedule beyond next week is dependant of what we hear from the doctors. Brandon will likely be in the hospital for a week for the surgery and then a shortly thereafter would be the Gamma Knife treatment which lasts just 1 day. We are thinking both will likely be sometime in January.
Brandon seems to be handling this news remarkably well - certainly better than me. Last night he said that he knows his tumor just keeps coming back every 2 years, he is so smart. Brandon was so brave last night. When Dr. Merchant called he was not wanting to be in the room and seemed frustrated. But after the call from Cory he asked what the doctors said. He is sad his tumor is back but is ready to do what he has to do to get rid of it again. His strength and ability to live in the moment is very admirable and serves as constant role model for me (and the rest of us adults). When I talked about the likely schedule with Brandon he asked if we would still have our scheduled appointments at St. Jude at the end of January. I said not likely and that we'd probably go back for a follow-up in March. He told me ok, but that he didn't want to be in Memphis during his birthday - another glimpse into the mind of an 8 year-old.
Several have asked how I am doing and how I get through the day. I thought of a good analogy - getting through the day is like walking along a narrow trail besides a high cliff, you focus on walking ahead and not looking down. It doesn't change anything, you know that the cliff is still there, but it keeps you from focusing on the drop. Another source of inspiration is the daily posts at the NPR My Cancer site. Monday's entry, "The Strength to Remain Standing" was particularly motivating.
I am so thankful for your prayers and positive thoughts. Please keep them coming. Thanks also for the messages of support and hope these past few days, it really helps the spirit.
Yesterday afternoon Brandon had an MRI at
Children's. The results were not good. The scan shows a new area of
enhancement, most likely a local recurrence.
We are devastated.
The Children's tumor board will be discussing Brandon's case tomorrow. We will then have a follow up appointment with Dr. Geyer on Friday morning. The scans are also on their way to Dr. Merchant at St Jude for use by the St Jude tumor board on Wednesday.
Brandon is good, and continues to be happy and excited for Christmas. Corey told him that something turned up on the MRI that we're concerned about.
Please send Brandon your prayers, hope, and positive energy.
Brandon will be officially 2 years off of treatment on December 15th! We're having a party this Friday to celebrate this milestone and to have an opportunity to see you all and to thank you for your support!
So please join us at your leisure that afternoon. Just bring yourself, your presence is all we need and want that day! Again, not only is this celebration about Brandon and his fight but it's about our chance to see and thank you for all you've done for him and us.
WHEN: Friday, December 14th
4:00 - 7:00 pm Open House
WHERE: 104 236th PL SW, Bothell
Jeff & Brandon
A Happy Thanksgiving to all.
Brandon will reach his "2 years off of treatment" on December 15th, YEAH!!! An awesome milestone! To celebrate we are going to throw a party on the 14th and would love it if you could join us!
SAVE THE DATE!!!!
Friday December 14th, 4:00pm-7:00pm
We'll send out another invite in December but just wanted to give you all a heads up so you could put it on your calendar!
Jeff & Brandon
It's been a while since the last update so I wanted to fill you in with what Brandon's been up to the past few months. The first week in August Brandon spent another fun week at Camp Goodtimes on Vashon Island. He was a bit apprehensive about being away from home for an entire week, but also wanted to get there early so that he was sure to get a top bunk. This year's his counselors were "Wasabi" & "Rudder". He saw Corrie from Children's along with "Bacon" one of his counselors from last year.
Over Labor Day weekend Brandon and I went camping with his buddies Jack and Ryan (and their dad Dan) at Twin Harbors State Park (on the coast near Westport). Brandon was super excited to use his new tent that he won it a contest Sylvan. Of course the weekend was centered around the fire pit - making smores and burning sticks. When we didn't have a fire going we were hiking and exploring the beach. The boys collected sand dollars and make a driftwood fort. All-in-all an excellent end to the summer! Here are some pictures.
The next day after camping, Brandon started 3rd grade! He wasn't all that excited to go back to school, but was looking forward to his new teacher, Mrs. Ikeda-Yee. The first couple of weeks were a bit rough as he got used to the added responsibilities (and homework) that go along with being a 3rd grader, but now he's getting along fairly well. We're waiting for the IEP (Individualized Education Program) assessment to see what the school recommends for this school year. Currently he goes to the learning center twice/week for individualized instruction. He is also continuing to attend 2 sessions per week at Sylvan.
Brandon decided to join the cross country team at school. His first meet is tomorrow afternoon - he's quite excited and proud to be a member of the team. He's also showed an interest in golf. Last weekend he and I went out for a short twilight game. He had a blast (of course half the fun was riding in the golf cart).
Brandon's growing at a good rate, a few inches over 4 feet now. The growth hormone (Nutropin) shots are certainly working!
Also, some additional information about Brandon's last MRI back on August 2. Now there's a part of me that doesn't want to share this information for fear of "jinxing" things, but I thought it is more important to share it with all of you who have provided such endless support. In the radiology report the findings include, "...Of note, the previously seen small enhancing focus in the left brainstem is no longer evident...". This is incredible news and means that the last MRI showed no signs of the tumor!!!
I included some pictures below - enjoy.
Love and friendship to all,
(click below for a larger image)
Hi everyone, I wanted to give you a quick update on Brandon and let you know that he will be having an MRI at noon this Thursday at Children's. We're in the anxious time between one and two years out and are praying for another clean scan.
It's been a while since the last update. Rest assured that no news means good news! Brandon has been busy enjoying his summer - playing with his friends and not being in school! The week after school was out, Brandon and Jeff went down to Tucson to visit his parents and to see his sister's new baby, Kyleigh. Brandon kept himself busy with Grandma baking cookies and other projects not to mention the obligatory golf cart rides. We also went swimming and played boccie (once it cooled off below 100°!).
On 07-08-07 we went to the Future of Flight up in Everett to celebrate the rollout of the 787. Brandon wasn't that interested in the 747 testbed aircraft parked right outside, and spend a good amount of time in the 727 cockpit. As we were walking from the parking lot Brandon made me laugh when he said to me, "I wonder if Boeing will get an award, you know because they are putting the fun back into flying".
Two weekends ago we an annual party event at a friends. Brandon was really looking forward to "Rancho Relaxo" because of all of the kids - there must have been over two dozen. He was also excited to camp overnight in the tent. Brandon also got to learn how to ride "a real 4-wheeler" (as Brandon would say). He was thrilled (pictures coming soon).
Dr. Olson discussed the recent and highly promising discovery of tumor painting which will help surgeons distinguish between cancer cells and normal brain tissue hopefully allowing for more precise removal of the cancerous cells. The study published in the July 15, 2007 issue of Cancer Research received widespread coverage, including an article in Time magazine.
Dr. Ellenbogen shared with the group something that touched me deeply - Outside of his office he has the Wall of Heros. These Heros are not the children that have been saved, but are the children that didn't make it and serve as motivation to keep up the fight.Let's see, what else. Last week Brandon had fun attending soccer camp and he is still attending Sylvan, going 2x/week to keep his learning skills going strong during the summer break.
One more thing to share. I've been following the My Cancer blog at NPR.org. It is very honest and insightful. You may want to check it out.
Thank you for your support, love, and friendship,
Hi everyone, Jeff
Brandon had an MIR this morning at Children's and there is continued great news!!! To quote the radiologist's report, the tumor is "less conspicuous than prior". Brandon was a champ today! He'll have another scan at Children's in three months.
Between now and then we'll be looking forward to summer, Brandon graduating 2nd grade, and continuing to enjoy life to the fullest!
Love & friendship to all,
I wanted to let you know that Brandon's been helping out at the KMPS St. Jude Radiothon which runs Thursday and Friday. He and I went down this afternoon and (of course) he had a blast helping Taryn (ALSAC) and Flo (KMPS radio personality). We also got to see Sara Stark and family at the station. Sara is the same ago as Brandon and is also an Ependymoma survivor. Brandon and Kris will be at the station Friday afternoon. Listen in at 94.1 FM and you'll get a chance to hear Brandon on the air! (you can listen online as well). On Thursday they raised over $278,551 for St Jude! Brandon and Sara were helping Taryn update the tally board.
All's well for Brandon and I. The big boy is turning 8 on Wednesday - can you believe it!! He's really looking forward to his party Saturday afternoon. On Thursday he has an appointment to get his new hearing aid fitted. He's excited for this to happen as the hearing loss is noticeable for him.
Last month we started Brandon at Sylvan Learning Center to get him some extra assistance with his reading and writing. So far he's doing well and his interest and enthusiasm towards school has increased. Speaking of school, Brandon is doing an act in the Shelton View Talent Show at the end of the month featuring his dog Jet. His act is sure to be quite entertaining.
Other than that, not much to report.
Take care, and thank you for your friendship, love, and support,
(click below for a larger image)
been blessed by more great news - Brandon's scan was
clean!!! Cancer free 1 year+ from treatment!
Dr. Merchant saw Brandon yesterday and said he looked great. PT, OT, & speech evaluations went very good as well. At the eye clinic appt. his vision was 20/20 in both eyes, an improvement over our last visit. At the audiology clinic they measured a decreased response in Brandon's right ear. The hearing loss is likely a side effect due to the radiation therapy. He'll be getting a hearing aid to restore the loss. They don't anticipate that the loss will continue to worsen. Brandon seems happy about it since he'll be able to hear better plus the fact that he was able to pick out the colors. He chose his school colors - dark blue.
The psychological testing revealed a decrease in scoring from the previous evaluations, again a likely (and common) result of the radiation. They weren't able to finish all of the testing because we started late (they had a challenging time getting Brandon's IV started this morning).
So, Brandon's going to have some challenges with his hearing and cognitive skills. BUT, no tumor progression is by far the best news and far outweighs all the other stuff. Thanks so much for all of your support!
With much appreciation,
Hi everyone - Happy New Year!
Brandon's back at school today after 3 snow days. He is doing well and had a good holiday. A big thanks to everyone who made it out for Brandon's celebration party last month. Brandon had an excellent time.
Brandon and I spent the week before Christmas down in Tucson visiting my parents and sister. We had fun playing and relaxing. Brandon helped bake (and eat) lots of cookies!
In December Brandon entered a National PTA "Reflections" contest at his school . The theme was "My Favorite Place". Brandon wanted to enter and chose St Jude as his favorite place. He created a really neat visual arts poster using several of his special photos from St Jude as well as the feathers from his Thanksgiving Turkey. We just found out that he won for his age group and category at his school! The District judging is taking place this week and we expect to learn the results by the weekend.
We're traveling to Memphis on Sunday for another checkup. Once again, I'd like to please ask for good thoughts, prayers and positive energy for this next scan. We return Wednesday morning and I will post the results as soon as I can.
Here's Brandon's appointment schedule:
Thank you for your support, love, and friendship.
Positive energy is a powerful thing.
Happy December everyone!
This Friday, will mark Brandon being off of treatment for one year!! Awesome! Brandon wanted to have a party to celebrate and share his excitement with all of you! We will have an open house this Friday, December 15, from 4:30 pm - 7:30 pm at the house in Bothell.
Please come if you can make it and help Brandon celebrate another huge milestone for him in his recovery! No gifts please, just your presence of support and friendship!!!
WHEN: Friday December 15th
4:30 pm - 7:30 pm (come any time)
WHERE: 104 236th PL SW, Bothell 98021
Thank you for your support, love, and friendship,
On this Thanksgiving day I wanted to share
with you something special written by Brandon. His class
made Thanksgiving turkeys and on each of the feathers wrote
the things they were thankful for. Brandon wrote that he was
...My loveable dog
...My janitor (explanation - Brandon left something in his classroom a few weeks
ago. He and I went back to the school late in the day and the Janitor let us in to get it)
...St Jude Children's Hospital - "St Judes Caeren Hospitol"
...I survived cancer - "I srfied kansr"
...I am still alive - "I am stil aliv"
These last two broke my heart... I certainly didn't realize the extent that he "understands" his situation and that he is a true survivor. It's something we didn't want to ask him specifically - what he really understands about things regarding his health.
I too am extremely thankful for St Jude Children's Research Hospital. I'm also so very thankful for all of you - for everything you have done for us over this long and rough trip since February 2003. You have contributed so much - your email messages, cards, gifts for Brandon, donations, and most of all your encouragement, prayers, and hope. Getting through this would have been so much more difficult without your support.
I hope you all are having a wonderful Thanksgiving holiday today.
Hi everyone, I wanted to give you a quick update on Brandon and let you know that he will be having an MRI this Friday morning at Children's.
The past couple of months have gone pretty well. Brandon has been feeling quite good and is enjoying himself. At school he is in the chess club and serves as the student council representative for his class. Brandon has recently began one-on-one instruction 4x/week with a Special Ed teacher as part of an IEP (Individual Education Plan). He spends about 40 minutes each day outside of class with her to help him catch up. Reading and writing are specific areas where he is receiving assistance. So far, Brandon's been receptive to the individual support. He has told us that it makes him mad that he cannot do his work as quickly as his classmates. We're thankful for the wonderful support and caring the goes out towards Brandon at his school!
This year for Halloween Brandon decided he wanted to be Darth Vader. He was very excited to go trick or treating and made it a contest to see how much candy he could collect. He also wanted to be sure to get back to the house to be able to hand out candy to the other kids as well. Next year he said he wants to be R2-D2. Brandon has been quite interested in everything Star Wars since he and I watched Episode IV for the first time last month - it sure makes me feel old to think it was almost 30 years ago when I first saw Star Wars in the theater!
Speaking of Halloween, here are some recent pictures: http://www.brauns.smugmug.com/gallery/2078352
Thank you for your support, love, and friendship,
from Memphis, Brandon's MRI was clean!!! We reviewed
the scans with Dr. Merchant this afternoon and the spot of
concern was no longer visible! YES! - this is
the best news possible! I was just praying that it would
remain stable, but this is so much better than that. No
surgery to worry about, no more appointments this year.
We'll come back in January for Brandon's next scan.
Thanks so much for all of your special thoughts and prayers for Brandon today - it worked!
With much appreciation,
We're heading back to Memphis on Tuesday for a MRI as well as our regular set of follow-up appointments. Most important with this scan is checking to see if there is any activity with the "spot" that's been the focus of our attention the past several months. Please send good thoughts and prayers that the spot is stable or even smaller.
Brandon finished up his third week of school last week and seems to be doing well - he even told me that it was "a little fun" the other day. He's got a great teacher - Miss Siccardi - who used to work at Children's for 25 years! (pictures from the first day)
Over the Labor Day weekend Brandon and I took a trip to Portland to hang out and ride the light rail. We took the entire trip by public transportation - bus from my condo to the train station in downtown Seattle, the Amtrak Cascades train to Portland and then another bus to our hotel. Brandon enjoyed the train ride and made several trips up to the snack car to get straws for a "project" he made. While in Portland we had dinner with my mom's cousin, rode MAX to the end of the line, did some laps at Malibu Grand Prix, explored Powell's Books and hung out downtown. We both had a great trip! (pictures from our trip)
On Saturday we went to the Puyallup Fair for some rides and good food. Brandon liked the aerial cable car ride and the a kiddie canoe ride the best. No rides for Jeff, wanted to keep my stomach in good shape for eating! (pictures from the fair)
Here's Brandon's appointment schedule for Wednesday:
Thank you for your support,
love, and friendship,
A quick update to share the results of this morning's scan.
Nothing on the spine - it's clean!
The MRI at Children's couldn't detect the new "spot" that's been our concern the past few months. It's likely still there, just not able to be seen in this scan. The past couple of scans at St Jude have been done with their new T3 MRI (higher resolution).
This scan detected some enhancement at the piece of residual by the basilar artery. It looks stable but enhanced more then previously. This is residual from his second surgery (May 2003). They are calling it a stable scan but has some suspicious qualities.
Thanks so much for your prayers and positive thoughts today,
I wanted to let you know that Brandon is having an MRI on Thursday of this week. He started with some symptoms again in the past few weeks - wiggly legs and also a burning feeling in his arms. The wiggly legs came last September after he recurred. Hopefully this is nothing but these symptoms can certainly be indicative of growth or swelling somewhere. The scan is at Children's and is first thing in the morning on Thursday.
On the lighter side, Brandon's continuing to enjoy himself this summer. This week he's going to flight camp at the Museum of Flight in Seattle. This week's theme is the Blue Angels (they arrive in Seattle this week for their annual Seafair performance). Brandon's been wearing his Blue Angels shirt each day so far. He's also continuing with gymnastics on Monday afternoons.
Last weekend Brandon was the honorary captain at the Seattle Storm (WNBA) game. He went out to center court before the game to meet the captains from both teams and get autographs from the Storm captains - #10 Sue Bird and #15 Lauren Jackson. Then on Saturday was the Storm season ticket holder party. Brandon and Jeff got me meet several of the players including LJ, Brandon's favorite. Also last week Brandon came in to work with Jeff to help with the office move to the new Sammamish City Hall. He was busy all day helping pack boxes and hook up computers. I added pictures from last weekend in addition to these below.
The scan is at Children's and is first thing in the morning on Thursday. I'll send an update as soon as we get the results but wanted you all to start the good thoughts and prayers now.
Thank you for your friendship, love, and
Hi everyone, sorry for the lateness in this update, I've been meaning to get it out since we got back from Memphis.
First off - the PET scan results. The scan did not show any tumor activity at the new spot of concern. This means that it was either too small to catch, not tumor, or inconclusive because ependymomas are hard to read with a PET scan. So for now we sit tight and concentrate on letting Brandon have a wonderful summer. Brandon's next MRI at St Jude is scheduled for September 20.
Only a few days after we got home Brandon was off for a week at Camp Goodtimes where he had an absolute blast! The first night away from home was rough but after that he was a champ. In his cabin (the "Space Hogs" ) he bunked under his buddy Nick from Tacoma who he met at the 2004 Ride for Kids. His counselors were Bacon and RockStar. Brandon especially liked RockStar, who himself is a cancer survivor and this was his third year volunteering at Camp Goodtimes. They fished, hiked, played, went on a cruise and just flat out had fun! We're so proud of him! I know that this experience built up his confidence and independence. I'm confident he will never forget his week at camp.
Since we've been back Brandon's been enjoying his summer playing with his friends. Last weekend Brandon and I went camping with his buds Jack & Ryan and their dad Dan. Yesterday Brandon and I joined friends on Camano Island for an annual party - Rancho Relaxo. There were lots of kids there and Brandon really enjoyed himself.
Brandon's been closely following the current space shuttle mission, STS-121 - his astronaut friend Piers Sellers (Bio, Interview) is aboard this flight as a Mission Specialist! Brandon met Piers during his Wish Trip to the Johnson Space Center last April. Piers has been quoted many times (and here) during this flight as he has conducted several successful spacewalks. Accompanying Piers on the spacewalks for this mission was Mission Specialist Mike Fossum who Brandon also met during his Wish Trip!
Other than that, I'm quite busy at work juggling several things. Brandon is starting another session of gymnastics tomorrow and is going to meet with a tutor for help with reading and writing. I'm just keeping focused on the here and now and enjoying spending time and having fun with Brandon. I've posted new pictures from the last few months, including Camp Goodtimes.
Thank you for all of your messages, love and support, especially during our last trip to St Jude,
Brandon is finished with the PET scan and we hope to hear some information on the results later this afternoon.
Yesterday afternoon we met with Dr. Boop (Brandon's neurosurgeon) and Dr. Merchant to hear about their discussions at tumor board. They are quite certain that it is either tumor or radiation necrosis. They said that this spot is not on the brain but is just under the surface and in the tissue. With this in mind, in addition to all of the scar tissue in this location, Dr. Boop thinks that it is too small to go after. He and Dr. Merchant recommend waiting for now and returning in September for another scan. We were comforted to hear that Dr. Boop thought that the spot was located in an area of the brain that he felt comfortable going in if and when that is the recommended course of action. We were relieved that Brandon can have a normal summer and simply enjoy himself.
Yesterday morning after Dr. Merchant examined Brandon we reviewed the scans to see the spot in question. It's somewhat small, about 5 mm by 7 mm. Dr. Merchant said he hopes it is necrosis and he is not sure if the PET scan will provide us with any additional information. Either way he feels a surgery is needed to resect the spot and determine what this is. If it is necrosis Dr. Boop would resect it and then Brandon would do hyperbaric oxygen therapy. If it is tumor, then he would still resect but we don't know what to do from there. We pray it is not tumor because that would mean that all of the therapy we have done so far has not worked.
This morning Brandon had an eye clinic appointment to look into his "flip-flop" vision. Their thought was that it is certainly not a issue with his eyes and that the mechanics appear to be working correctly, but rather a processing issue with how his brain is processing the images. This is the same information we received last month in Seattle.
Thanks for all of your love and support,
Hello from Memphis.
I wish so hard that I was typing a different message to you now, but we've
been dealt another blow. The MRI results show progression of the
tumor/necrosis (still undetermined which it is). That's about all I know at
this point. We're looking to the PET scan on Thursday for possible
additional information. I'll let you know when we have more.
Brandon does not know any of this is happening and had a great day today at the fire fighter's museum and at Mud Island.
I can't say enough for everyone's support during this very long journey,
Hi everyone, I hope all
is well with you.
We're heading back to Memphis on Monday to follow up on Dr. Merchant's concerns from the last appointment in May. The anxiety is increasing for me as the next scan is only a few days away. We're praying that the scan will not show anything and that we'll just be back in three months for another check-up - if only it could be that easy. Please have prayers and good thoughts for a positive trip.
Brandon's enjoying his last few days as a first grader. His last day is on Monday where he'll have a real short day and then head off to the airport. Since our last update he's been busy going for trailer-bike rides with me and has made three(!) trips to the new Future of Flight museum.
Our appointments are over three days this trip:
7:15 AM MRI with sedation
8:30 AM Sedation recovery
9:30 AM Assessment
9:00 AM Clinic follow-up w/ Dr. Merchant
10:30 AM Physical Therapy consult
11:30 AM Occupational Therapy consult
1:00 PM Speech Therapy consult
9:00 AM Eye Clinic consult
10:15 AM PET presedate assessment
10:45 AM PET brain scan injection
11:30 AM PET brain scan
12:15 PM Sedation recovery
Brandon and I return to Seattle late Thursday evening. We'll
plan to get an update out from Memphis to keep you posted.
The flip-flop vision, as Brandon calls it, is still a struggle for him. He's had very little interest in reading and writing which has increasingly become an issue for these last few months of first grade. Brandon is being evaluated for special education assistance during next school year for reading and writing. Brandon's teacher Mr. Creager continues to be very supportive and we are extremely thankful for this. He was seen by an Ophthalmologist at Children's last month and is scheduled for additional follow-up in mid-July. One of the observations the Dr. made was that the surface of his left eye was too dry, causing blurred vision in this eye. This is due to the eyelid not closing completely and often enough - a result of the surgeries. We're applying lubricating gel several times throughout the day to hopefully fix this.
This summer Brandon is looking forward to spending a week to Camp Goodtimes on Vashon Island. He'll be there June 25 - July 1. He is also looking forward to July 14th when he'll be an honorary captain at the Seattle Storm game against New York.
Thank you for your support, love, and friendship,
Hi everyone, we are
back from Memphis after a quick trip.
Brandon's MRI results are a bit mixed. The GOOD news is the the residual tumor (from 2003) continues to be stable, we are very thankful for this. The unsettling news is that there is a new spot of enhancement, on/near the cerebellum. The radiologist thought it was a new tumor, however Dr. Merchant thinks that it may be radiation necrosis. We are scared, shocked and deflated at this news. We don't know what it all means at this time. We would normally take Brandon back in another 12 weeks for his next scan but Dr. Merchant is worried enough that he wants Brandon back in 6-8 weeks. This scan was done on a new T3 MRI unit with a stronger magnet, which produces higher resolution scans - you can see more detail.
Brandon continues to have challenges with his reversed-vision. The occupational therapist noticed it while conducting her evaluation yesterday. The optometrist (here locally) thinks that this is the result of the disturbance to the brain stem from the recent surgery. However radiation necrosis could also cause these symptoms. We are in the process of scheduling vision therapy appointments to address the "flip-flop" vision as Brandon calls it.
We will not tell Brandon about any of this at this time. We could not answer any of his questions and we want him to enjoy his last 6 weeks of school. We will keep you updated.
Love and Friendship,
Good morning all, hope
you're having a good spring.
Brandon's next MRI will be on Monday the 8th of May at St Jude. He will just have 1-day of appointments along with his MRI and our meeting with Dr. Merchant. The pre-MRI jitters have set in. Please have prayers and good thoughts for a successful trip and a clean MRI!!!
Here's our schedule of appointments:
8:00 AM Assessment
8:30 AM MRI with sedation
10:30 AM (recovery from sedation)
1:00 PM Occupational Therapy consult
1:30 PM Speech Therapy consult
2:00 PM Physical Therapy consult
2:30 PM Clinic follow-up w/ Dr. Merchant
A quick trip this time, Brandon and I fly out on Sunday and return back to Seattle on Tuesday.
Brandon just started back with gymnastics and loves it! It makes me so happy to see him completely enjoying himself in an activity that is all him. He is also signed up for a week of day camp with the Museum of Flight (Blue Angels week!). In June he'll go to "Camp Goodtimes", a camp for children with cancer. At the age of 7 he has "outgrown" some of the Skyhawks camps and now wants to "work" for mom.
Brandon is still experiencing challenges at school, we believe due to his vision issues ("flip-flow" vision as Brandon calls it). He has shown a loss of interest in the classroom. We're coordinating with the Vision Therapist to begin weekly appointments to work on this. Brandon's teacher has been very supportive of him and us as we work through this.
Also, I posted some new pictures:
Brandon's 7th Birthday
Easter & Spring 2006
Look for an update when we return.
Thank you for your support, love, and friendship,
Hi everyone, thanks for
all of your positive thoughts, prayers, positive energy, and good 'ol mojo.
Brandon's MRI was clean - ALL IS STABLE! Brandon did great this morning and
we're very proud of him. His arm was sore for a while today from the IV but
is all better now.
Next up is a follow-up with an optometrist on Monday. Brandon has been experiencing reversed vision when reading items horizontally, possibly an effect of the radiation. We're not quite sure what to make of this right now and are looking forward to hearing from the eye Dr.
Brandon's next scan will be on May 8 at St Jude.
Thanks again for all of your support!
Hi all, Brandon will
have his next MRI at Seattle Children's this Friday at 7:30 am. We will then
meet with Dr. Geyer at 9:00 am. We'd like to please ask for prayers and good
thoughts for positive results.
Love and friendship,
Hi all, we had a
successful but quick trip to St. Jude!
MRI - Dr. Merchant showed us the scans and said he is pleased. The tiny residual pieces are stable. This is what he would expect at just less than 2 months out from radiation. He said that the radiation could have caused some stress on the main arteries that supply blood to Brandon's brain. At this time there is nothing to worry about but he will keep his eye on it.
Psych Evaluation - Brandon will do this once per year to see if the radiation has any effect on his cognitive skills. At this time he did great, results were the same as the previous test and they will not test again until next February.
PT/OT/Speech - All signs were good here too! Brandon is such a trooper!!!
We had dinner with David and Julie on Tuesday night, so great seeing them again! Nurse Michelle came and hung out with us on Wednesday as she had the day off. Always great to see her, Brandon absolutely adores her!! Jeff and Brandon fit in a quick visit to the Firefighter's Museum before his appointments on Wednesday.
We will be back for our next check-up in May. Thanks for all of your support, it is very much appreciated!!!
Love and friendship,
HI all, B had
his MRI and all looks good!
Dr. Merchant called even before B was off of the table and said the scan looked stable from his initial look.
We will get to review it with him tomorrow.
Psych test this morning showed him to still be quite smart, on track or above average for his age and no signs of slowing down, we were very proud!!
Occupational therapy also said the same. Everyone is very impressed with how he is doing and how he looks!
We will update more when we get home!
Hi all, we head back
to St. Jude tomorrow for Brandon's first post treatment MRI. Feeling like we
are back at square one and doing this all over again. We got to the point
where we were going back only twice a year to "hear good news" and now we
are back to 4 times a year and feeling so anxious.
We are praying for shrinking of the residual or stable residual. Brandon is doing great in school and has really adjusted well being back in his normal routine again.
We will be back on Thursday and will send out an update!