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Kitchen Angels | Letter |
Monday,
Sept. 8th:
He was given pain
medication and headed off to classes.
Returned later that day feeling much worse.
An MRI scan was done and
this showed 2 larger tumors and several small tumors on his brain.
Transported
to Cottage Hospital where they did a CAT scan and discovered several lesions on
his lungs and liver.
Tuesday
Sept 9th:
Met with the oncologist
Dr. Tom Woliver.
Blood work and ultrasound
were ordered to determine if this might be testicular cancer.
All testing for testicular
cancer comes back negative.
It is decided that
The support staff at
Cottage have been incredibly helpful and caring.
Kudos to the nurses on 4C.
Wednesday
Sept 10th:
51/2 hour surgery to
remove tumor.
Neurosurgeon, Dr. Scott
Conner has diagnosed the tumor as melanoma.
The primary site is from a melanoma that was removed from behind
Thursday
Sept. 11th
Friday
Sept. 12th
The doctors released
Saturday
Sept. 13th
Tuesday
Sept. 16th
Brandon and Susan have a
consultation with Dr. Henry Han, a Chinese herbalist and doctor of eastern
medicine.
They are amazed by his
knowledge of nutrition, disease, and treatment of the type of cancer
They are committed to
following Dr. Han’s diet recommendations and a special herbal tea is brewed
each day.
Thursday
Sept 17th
Friday
Sept 18th
Susan goes down to Cedar
Sinai to meet with Dr. Yu and discuss the immunotherapy clinical trial and
treatment plan. She also meets with Dr. Hakimian, the radiology oncologist.
He and Dr Yu, will head the team that will do the radiosurgery on the
remaining brain tumors. Raidiosurgery
is a type of radiation treatment.
Basic
Summary of Treatment Program
Radiosurgery treatment to
the apx. 4 remaining small brain
lesions.
Surgery
to remove the remaining 1cm. tumor from his brain.
This
will be used to make the vaccine that will be injected Into Brandon 3 times at
intervals 2 weeks apart. It will
take approximately one month to grow this vaccine.
During
the period of time that they are waiting for the vaccine to grow
Then a second session of
radiosurgery will be performed on the cavities of the two larger tumor sites
that were previously removed.
There will be another
short recovery period for
About this time the
vaccine should be ready to begin the immunotherapy treatments. They will take
about a month to complete.
The above treatments are
part of the clinical trial taking place at
Wednesday
Sept. 24th
Everyone
involved in
When he arrives in the
treatment room he finds that it has been decorated with balloons and “Happy
Birthday” banners.
One of the younger male
nurses, (formerly from
Another nurse gives Susan
a birthday cake for when
Life is sweet, even it’s
most bitter moments.
Tuesday
October 7th
Pre-op physical and blood
work with Dr. Hadsall,
All of the pre op
appts. go smoothly.
Oct
10th
Oct
11th
Oct
12th
Today they change pain
medications and
Oct
13th & 14th
Dr. Yu has released
Oct
15th
Friday, October 17, 2003
Brandon’s caravan left Santa Barbara at 5:45 am in dense fog heading for another day at Cedars Sinai.
He started off the day with a 9:30 am post op and staple removal appt. at Dr. Yu’s office. That staple removal wasn’t fun at all…those things were really glued in there with dried blood… and that was just the first of many needle sticks and pokes for the day. Dr. Yu reviewed the immunotherapy procedure and set up an approximate schedule. Another radiosurgery is scheduled for Monday, Oct. 27th. Approximately one week later they will begin giving the vaccine. He will go to Cedars once a week for 6 weeks.
One week he will undergo Leukapheresis to obtain blood cells that will be transformed into dendritic cells. Leukapheresis is the removal of white blood cells in blood taken from your vein.
The following week Brandon will receive the vaccination.
To make the vaccine brain tumor cells will be taken from the tumor that was removed during surgery. Parts of the brain tumor proteins (called peptides) will be removed from the tumor cells and mixed together with the dendritic cells in the blood taken from the vein during Leukapheresis. These cells will grow for about seven days. This combination of dendritic cells and brain tumor protein fragments will be used as the vaccination.
At 11am we headed over to outpatient surgery for the removal of a lump (another melanoma) in is leg. This was the surgery we were waiting on last Monday and finally had to give up on at 9pm after multiple emergencies delayed the procedure. This outpatient procedure went smoothly and Brandon was ready to leave by 1pm. We did celebrate with some lunch for all before heading home.
Brandon is looking forward to a whole week and two weekends in Santa Barbara before having to head back down to Cedars Sinai.
This coming week he has an appointment with Dr. Woliver, his oncologist here in Santa Barbara and Dr. Han, his doctor of eastern medicine has been prescribing a special blend of Chinese herbs and guiding Brandon’s diet among other things.
Thanks to all for your loving thoughts, deeds, emotional and financial support, and prayers.
Monday,
October 27th.
Well, Brandon made it through another long, gnarly (Brandon’s description) day at Cedars Sinai. The final raidosurgery is over and Brandon is doing well. Once again, he arrived at the hospital at 7am for the placement of the halo and a cat scan and then settled in for the LONG wait. We were hoping they would take him earlier this time, but once again it was almost 4pm before they came for him. We finally headed out on the road for home about 7pm….but, as Brandon pointed out; it was perfect timing for missing LA traffic! Brandon saw Dr. Yu early in the morning and he says everything is on track for beginning the immunotherapy procedures next week. I’ll keep you posted when he is informed of the exact dates.
Wed.
November 5th
Today is the first Leukapheresis session at Cedars. Brandon goes to the Blood Donor department where he is admitted to a room with 6 hospital beds and 6 huge machines that process the blood that is removed from your body. In Brandon’s case they remove the white blood cells in the blood taken from his vein and the remaining blood is returned to his body via another vein. This process takes about 2 to 3 hours and requires having both arms on arm boards with IV needles in them. Of course, at this point there is no scratching your nose, changing television channels, or even going to the bathroom. (takes some careful early morning monitoring of your liquid intake!) This was a very slow, uncomfortable process for Brandon as his veins are naturally small and becoming a little abused from all the blood work and IV’s he has had over the past 2 months. Brandon summed up the experience by stating, “Each new treatment sucks in its own unique way!” They may possibly use the big vein in his groin at the next Leukapheresis session. This would require going to a “Procedure” room first and having the skin numbed with Lidocaine and then inserting the IV’s. He would also have to wait around about 1 hour after they remove the needles to watch for bleeding. It would be a little bit more to go through, but the trade off is he would be more comfortable, he would have use of his hands, and the process should go more quickly. Brandon’s attitude remains positive through all …. Even when he gets a little down or irritated it is quickly followed by his great sense of humor. This is so much to deal with on a 24/7 basis. He and Susan are both amazing and are admired by many.
Brandon was given a schedule for the rest of the immunotherapy procedures. He will go to Cedars every Wed. thru Dec. 10th. Next week he will receive his first vaccine. He will have to wait approximately 2 hours after the injection to be observed for any signs of adverse reactions. This injection is given under the skin much the same way as a TB test only this is given in the arm pit area to encourage the lymph nodes to recognize the vaccine. There will be a series of 3 vaccinations with alternating Leukapheresis sessions. At the end of this time Brandon will be ready to begin his chemotherapy treatments here in Santa Barbara. There will also be a final 4th Leukapheresis and vaccination (a “booster”) that will occur in Feb. Interspersed with the above treatments there will on- going blood tests, MRI’s and physical evaluations. As you can tell there is constantly something going on…most of the time not very pleasant. Brandon spends time mediating, is starting yoga (as soon as his shoulder injury is healed), rests, and is eating fantastically healthily. He has recently set up a 50 gallon aquarium in his room and has adopted an 8 week old kitten. (Supplied, with all the proper kitty equipment, by his brother Justin) Warren was down last Sunday and showed Brandon how to download a program on his computer that allows him to do editing, etc. with the video camera his mom gave him for his birthday. He reads a lot and focuses on healing and staying as positive as he can be. He and Susan are so appreciative of everyone’s support, wonderful meals, and prayers.
Wed.
November
12th
Yahoo! The first vaccination is over and everything went very smoothly. Brandon says it is the first thing he has been through that wasn’t too uncomfortable and was uneventful. The doctor injected the vaccine under the skin at the outer area of his arm pit. The nurse then monitored his temperature, blood pressure, and checked for any local skin reaction every 15 minutes for the next 2 hours. There was no adverse reaction at all. Brandon is very excited to have finally reached this point in his treatment. He is feeling good, his shoulder has healed, and he is on his way up to his brother, Justin’s home for another visit. He is free until next Wednesday’s Leukapheresis appointment.
Wed.
November 19th
Check off one more trip down to Cedars Sinai for Brandon. He just completed his second Leukapheresis procedure. Today went more smoothly, as far as the Leukapheresis itself, but was more time consuming for Brandon as they did decide to put a catheter into the main artery in his groin to make the procedure more comfortable for him. It was definitely more comfortable, but the day was longer as he had to be at Cedars by 8 am so they could numb the area and insert the catheter.
The biggest down side was the waiting time after the actual Leukapheresis….they needed to wait about 1 ½ hrs. before removing the catheter. This allowed time for all the blood thinning medication to leave his system so there wouldn’t be any bleeding after the catheter was removed. Once that finally happened he was feeling great. He is looking forward to his 2nd vaccine next Wednesday.
Wed.
November 26th
Today Brandon received his second vaccine. He is now two thirds of the
way through his immunotherapy treatment. Brandon also had a follow up
MRI in the morning to track how his brain tumors are responding to the
radiosurgery treatments. Dr. Yu told Brandon that he was happy with the
all the original tumor sites. They look good and none of them appear to
be growing. With radiosurgery treatments the tumors don't just get
zapped and disappear it takes a period of time for them to resolve. The
downside is the MRI also showed two very small new tumors. Dr. Yu has
ordered another radiosurgery to treat these new tumors. Brandon is
forging ahead; ready to do whatever it takes to fight this cancer.
Wed. December
3rd
Another week has passed and we just returned from Cedars Sinai. Brandon
had his 3rd Leukapheresis procedure today and everything went extremely
smoothly. We left for Santa Barbara about 3pm. Brandon was feeling
well enough to drive home this afternoon. We dropped him off at his
Dad's in Encino where he hopped in his truck and headed home. We all
arrived home around 5pm. Right now Brandon is scheduled for another
MRI, with contrast, (meaning a dye is injected into his veins to better
show the tumor sites) on Friday. He then has an appointment for a
consultation with Dr. Hakimian, the radiology oncologist. He will be
scheduled for the radiosurgery early next week. His final vaccine is
scheduled for Wed., Dec. 10th. They will then monitor his immunological
response with periodic blood work and he will have regular brain MRI's
to follow up on the brain tumor sites.
Friday. December 5th
Bill will be
talking to Dr. Barton Goldsmith about Brandon and BrandonsWave.
Station is KCLU FM (PBS) 102.3.
Wednesday. December 10th
Brandon is celebrating!! He received the final vaccine in the series of three. He
will now only go to Cedars for monitoring of his blood work and his booster
vaccine in February. His follow up MRI’s should happen here in Santa Barbara.
There is new information on the treatment plan for his small new brain tumors.
After the new MRI with contrast was done on Friday, Dec. 5th, Dr. Hakimian decided
Brandon would benefit from whole brain radiation as opposed to another radiosurgery.
Whole brain radiation will treat the two small new tumors and any tumors not yet
visible with MRI. Brandon is schedule to have radiation everyday for the next two weeks.
He will be under the care of Dr. Weisenberger and will be able to receive all of his
treatments here in SB at the Cancer Center. On Tuesday, Dec. 16th, Brandon has an
appointment with his oncologist, Dr. Woliver. The plan right now is for him to begin
his chemotherapy treatments at that time. He will take two different medications on a
daily
basis; one is Temodor and the other is Thalidomide. Both of these are oral
medications.
Some of the side effects Brandon may experience with the radiation treatments are fatigue,
dry mouth, and hair loss. The side effects of the chemotherapy treatments may include
nausea, fatigue and headache. The drug Thalidomide, can make you fatigued, but also acts
as an anti nausea medication. Brandon is ready to start the next phase of his battle and, as
usual, has a great, positive attitude. So much so, that in his “spare” time he is planning on
volunteering in his friend, Shana Lewis’ 2nd grade classroom.
Dec. 9th thru Jan. 17th
To all of
Brandon’s support group, my apologies for the delay in updates. Our web angel
moved into a new home in Dec. and with the holidays and us learning how to add
the updates
ourselves, we find ourselves a month down the line. I will attempt to get you
caught up now.
On Dec. 9th Brandon had a consultation with his radiology
oncologist here in SB, Dr. Weisenberger,
and he started his whole brain radiation treatments on Thurs.Dec. 14th . The
following Monday he
saw Dr. Woliver, his oncologist, here in SB. They reviewed the type of
chemotherapy drugs he was
going to receive and he started the chemotherapy treatments the following
day. The first night was
pretty rough with nausea and vomiting as the Thalidomide he was suppose to
take along with the
Temodar was not available until Wed. From Wed. on he has been handling
the combination of the
drugs quite well. Dec. 11th thru Dec. 31st he was receiving both
radiation and chemotherapy .
The radiation, especially, really wiped him out. He was extremely
tired/exhausted all the time and
had headaches. These symptoms had a cumulative effect as the treatments
went on …. His headaches
became much worse and he was more and more fatigued. Though his last
radiation treatment was on
Dec. 31st. and he had a celebration dinner with his mom, Aunt Stephanie
and cousin Ashley, he really
wasn’t feeling all that celebratory. His headaches went from worse to
barely tolerable. On Wed. Jan.
7th he had an appointment for a blood workup at Cedars Sinai and while he
was there Brandon
contacted Dr. Hakimian, his radiology oncologist at Cedars to discuss
his headaches with him. Dr.
Hakimian felt that they were probably caused by swelling in the brain from
the radiation treatment and
prescribed Decadron, a type of steroid, to reduce the swelling. He had
been on this drug previously for
short periods of time after brain surgery and brain radiation. Dr. H.
also ordered a MRI that afternoon
to rule out any other possible tumor activity. Dr. Hakimian and Dr. Yu
conferred, and after reviewing
the new MRI said everything was on track. Brandon’s headaches are
essentially gone and he has
switched to a tapering dose of the Decadron. He is feeling so much
better….. so much better, in fact,
that he entered a surf contest this weekend. Family and friends showed
up with picnics and cameras
and a good time was had by all. Is this guy amazing or what?!!!
Sunday, Jan. 25th
Brandon has had a good week. He is feeling stronger and stronger and is very grateful for every day of feeling good. He started a yoga class this past week and is signed up to begin a class in meditation. He has been hanging out with his cousin Ashley before she left for three months in Italy on a study abroad program. Over the weekend he headed up to his brother Justin’s again and they worked and raced their mini bikes…They love those things. This coming week he his going to try to schedule some time to volunteer in Shana Lewis’ 2nd grade classroom. It is great to see him feeling so good!
Sunday Feb. 1st
This week Brandon is working in Shana's 2nd grade classroom and the kids are loving him. He is continuing with his yoga class and finalizing a trip to Hawaii with his mom on Feb. 13th. Thursday, February 5th he will have a follow up MRI and CAT Scan. He will have an appointment with Dr. Woliver to review all of the results on Monday, Feb. 9th. Then the countdown for Hawaii....a well earned vacation and much needed rest for both Brandon and Susan They will have a great time surfing, kayaking, snorkeling and exploring Kauai.
Tuesday Feb. 10th
Brandon's appointment with Dr. Woliver brought good news....no new tumor activity!
Monday Feb. 23rd
Brandon and Susan returned from Hawaii last Friday night. They looked more rested than they felt. Each day was crammed with as much activity as they could fit in. They did everything from surfing, to snorkeling to horseback riding and tried to see all of Kauai they could in their rental car. They had a wonderful time.
On Saturday evening they went to a surf movie benefit at Santa Barbara Junior High. The proceeds were to go to the SB Jr. High surf team, Heal the Ocean, Healthy Lunch Program, and Brandon's Wave. Brandon was honored by their support. Speaking of support and benefits; hold the date of March 19th for a benefit put on by "805 Goods & Apparel". It will be held at The Sandbar (formerly Calypso), ........ 514 State St. There will be great raffle prizes, and a live auction that includes dinner and surf lessons with some of Santa Barbara's best (looking) surfers. It will also include the musical guest, Incahoots. Hors d' oeuvres and wine will be served. Tickets are $35 presale, $40 at the door. .... 100% of the proceeds will be directed to Brandon's Wave Fund!!! If you are interested in receiving an invitation to the event or making a donation, please send name and mailing address to:
yatesbenefit@hotmail.com
Please specify whether you would like to receive an invitation or donation form in you email.
This Tuesday Brandon goes down to Cedar's for a big blood draw and lots of routine testing. On Wednesday he will undergo another Leukapheresis to prepare for his booster vaccine that he will receive on Wednesday March 3rd. On Thursday, Brandon will fly to Alaska with his dad for a few days together. His dad has a cabin that Brandon, his brothers and he helped to build. Let's hope for good weather!!
Brandon has continued to be a classroom volunteer and is enjoying the kids (even though they gave a stomach bug right before his trip to Hawaii!) I am trying to get more pictures on the web site...that's my next lesson! Thanks for your patience.
Updates to follow
Saturday, March 20th
Everything has been going smoothly and according to the above information right up to last weekend. At that point there was a major pendulum swing in the opposite direction. Brandon had a regular check up with Dr. Woliver on Mar. 11th. At that time Dr. Woliver felt that the chemo and immunotherapy were not working up to our hoped expectations and he suggested Brandon look into some other promising treatments that are available at UCLA. He scheduled an appointment for Brandon for the following Monday, Mar. 16th. Brandon wasn't feeling real well on Thursday, the 12th, but left anyway for LA as he had a trip planned to go snowboarding up in Big Bear at his dad's cabin. He continued to feel awful and was only able to snowboard for a very brief amount of time. He met his mom and I in LA on Monday morning and we headed to UCLA for his appointment with Dr. Atoni Ribas. The appointment was very informative and Dr. Ribas had some promising new options to try. (I will go into these next time) Tuesday, Brandon was still not feeling well and had a major seizure that evening. We immediately took him to the emergency room where they did a cat scan of his brain. The nuerosurgeon read the scan and saw that Brandon was having a significant brain bleed. At that time they thought there might be new tumor growth also. The doctors said the situation was very grave and told Susan to gather the family.
Brandon was transferred to ICU and put on IV medications to reduce the swelling and inflammation and prevent further seizures. The following morning Dr. Woliver ordered another cat scan of his brain, this time with contrast (dye). This scan showed that there was no new tumor activity and the bleeding had stopped. They decided at that point that he would not need surgery to relieve any brain swelling. By Thursday morning when Dr. Woliver came by and talked with and evaluated Brandon he pronounced, "HE'S BACK!" He has recovered by leaps and bounds since that point. He was moved to a regular room on Thursday morning and released from the hospital Friday morning.
If you were fortunate enough to be able to attend the fundraiser put on by 805 Clothing and Apparel Friday night you saw him there, a walking, talking miracle!! He has won another battle in his war against cancer.
The fundraiser, Friday night, at The Sandbar was fantanistic. A million thank you's to all of you involved. What a incredible tribute to the close net community of Santa Barbara, coming together once again for one of their own. Brandon has tremendous team of angels supporting him.
At this point Brandon will rest and recuperate at home. He has a follow up cat scan of his brain in two weeks and they will evaluate his progress. I forgot to mention that Brandon had a body cat scan while he was still hospitalized and it showed there was no significant growth to his other tumors. When he sees Dr. Woliver for his follow up appointment they will decide the new battle plan.
Monday, March, 29th
Well, it has been another week full of surprises. Brandon's blood clot had been slowly soaking up fluid from the brain and growing in size until it began to cause obvious problems. Susan took him into the emergency room once again Friday afternoon. The neurosurgeon ordered another cat scan and after seeing the growth of the blood clot decided it was best to go in and remove it, along with the extra fluid, to relive the pressure on his brain. They were able to get him in for surgery at 7pm Friday evening. The surgery went very well. He stayed in ICU Friday night and was moved into a regular room on Saturday morning and was released to go home Sunday morning. He is now recuperating at home and having to put up with all of his other "moms" smothering him while Susan tries to work. Tuesday, his brother, Warren, is coming to pick Brandon up and take him down to LA. His dad has tickets to the Laker's game, 4th row, center court for Tuesday night that Brandon is really looking forward to.
Right now the medical plan is to get Brandon healed and strong enough to get back to UCLA to try one of their treatment options....to be decided by Dr. Ribas.
Brandon is really enjoying all of his messages on the web site....it is definitely boring sitting around and "healing"!