It's good to be home

Brandon has been telling me he really wanted a vacation.  He really hasn't had one for 2 years since he started treatment for his back and bones.  We have been talking about it and Brandon decided he wanted to see a lot of shows and hear a lot of music for his vacation.  I searched around and found the perfect solution.  Branson Missouri. I looked through the listing of shows in Branson and there was a Beach Boys tribute, a Jimmy Buffett tribute and a Beatles band hand picked by Louise Harrison.  In addition, Peter Noome from the Herman's Hermits was playing and so was Elvis Presley's cousin Jerry.  Branson was made for Brandon.  I ordered tickets early but didn't pay too much attention to where I was ordering.  Brandon added a show every few days after looking at the listing of shows.  I had some miles and hotel credits which I used and we decided we needed a car.  The big question was will we need the wheelchair.  We decided to bring it because Brandon is a little more unstable while walking since the surgery.  Imagine losing a large part of your abdominal wall.  It takes time to rebuild.

I booked a very early flight thinking we would sleep on the way up but have time for a few shows on the first day.  So we left the house at 4:00 am, left Austin at 6:30 am and arrived in Branson at 10:30 am.  I reluctantly took American Airlines.  We have had some issues when traveling with Brandon on American but I thought surely they have fixed those.  The only major issue was that Brandon's wheelchair did not make it to the exit area outside the plane in Dallas.  They said they sent it to the connecting flight.  But we had assistance to make it to the connecting flight.  We flew into Springfield which is about 45 minutes from Branson, got our car and headed to Branson.  Everything was fine in Springfield.  We had enough time once we got to Branson to get our tickets.  Lessons learned here.  Every time Brandon added a show I ordered a ticket. I wasn't paying attention to the place I was buying a ticket.  So we ended driving all over Branson picking up tickets at various ticket centers who also tried to sell us time shares and other travel items.  AND not only was that torture but we had to wait in line at each one.  I wasn't too happy.

We then headed to Million Dollar Quartet at the Welk center.  I was so happy that they had food.  Brandon and I ate.  I noticed that Brandon barely ate.  He just wouldn't.  Our tickets were first row center for the show.  I was surprised but happy that Brandon would be able to see.  The show was really good and we opted to get pictures after the show with the cast.  Brandon seemed tired and very low energy.  So we went to check into the hotel.  Once again a 25 minute line.  Brandon looked worse and started complaining that he wanted to go home.  I had seen that there was a Jimmy Buffet restaurant within wheelchair pushing distance.  Brandon really wanted to eat at his Jimmy Buffet place, but once again be barely ate.  He was whining about leaving and looked really off.  We went to the Parrottville show and once again they sat us on the front row.  It was a lively show with lots of lights, movement, people coming down from the stage with the lights and singing.  That is when I started to notice Brandon closing one eye, squinting with the other one, rubbing his eyes and through out the performance Brandon seemed to have blank stares.  I put my hands in front of his eyes during one of the stares and Brandon didn't move.  He was having seizures. We left right after the show to go back the hotel and Brandon was complaining loudly that he needed to go home (to Austin) and I needed to call his doctor.  At that point I knew why he was saying this - he was pretty miserable.  I told him I would call in the morning and see if we could move the flight.  Brandon's pupils were pinpoint, he was still squinting and he said he couldn't see anything out of his right eye.  The next morning we got up and he was up for going to the 1st show - the beach boys tribute.  He wouldn't miss it even for seizures.  Once again they put us in the front row and the show was lively with lights, movement right in front of us and around us with video.  Brandon was closing one eye, squinting, rubbing his eyes and had blank stares again.  He was complaining he needed to go home.  After the show we went back to the hotel and I spent two hours on the phone trying to move our flight.  American Express went above and beyond and got us going back the next day.  We had two more shows.  Brandon wanted to go.  The next one was the hits of the 60s.  This one by far was the one with the most lights and strobe lights.  Brandon was miserable, but hanging in there closing one eye and squinting telling me he cant see out of the right eye.  When they got to the Beatles they introduced the most recorded song of all time - yesterday.  Trying to keep thing upbeat, I turned to Brandon and said one of our favorites and Brandon burst into tears.  For any of you who know Brandon that is not normal for him.  He was tearing up through the rest of he show.  We left immediately after and went back to the hotel.  He slept for about 1 hour and then wanted to go to the Jimmy Buffet restaurant.  They knew us there and were great about getting us in and getting mama her spicy margarita.  The last show was the Liverpool Legends.  I knew Brandon would not want to miss this.  But asked him if he was sure he wanted to go.  He said yes.  We were in the front row.  This show did not have the extreme lights and had some great video from Louise Harrison with video.  Brandon was a little better for this show but still squinting some.  He wanted to get a picture afterwards and he actually sang a little and talked a little.  So he was better but still having a hard time with the lights.

I write all of this because Brandon has never had photosensitive epilepsy (https://en.wikipedia.org/wiki/Photosensitive_epilepsy) .   He has been tested for over 25 years and never a positive response.  I realized finally that Brandon was having seizures from the stage and strobe lights that were very bright and we were in the front row getting the full effect.  It was concerning because I also realized probably too late that he was having seizures as a result with each show.  So he would slowly recover and it would start over again.  I am feeling bad that I didn't recognize why he was having seizures earlier.  I thought he was having small seizures and I upped his CBD which seemed to help, but it wouldn't help with the lights.

Lessons learned here and there are a lot of them.
1.   Brandon is still not 100%, maybe 85%.
2.   Leaving at 6:30 am was probably not the best idea and may have set up Brandon being more prone to having a seizure.  One of his triggers is lack of sleep.
3.   Immediately going to a show and picking up the tickets right after landing may have also been a trigger.  Perhaps it would have been better to rest the first day and shows after a good nights sleep.
4.  For Branson - only order tickets from the theaters and pick them up before the show.
5.   Brandon appears to have a new type of seizure trigger - stage and strobe lights.  It may have been better to sit further back for these shows or only one a day if at all.
6.  I didn't take Brandon's emergency seizure med with us.  He probably could have used it.  To be honest I have never used it but have it just in case.

The flight back was fine until we got back to Austin and this time Brandon's custom wheelchair did not make it back with him.  They lost it.  They finally found it and it was still in Dallas.  This was one of the few times we really needed it.  So we had to sit at the airport for an extra hour while they looked for it and then filed a claim.  We were both so ready to get out of there.  As I drove up to our house when we finally got home (did I mention there was a wreck and we sat in traffic for a while), Brandon looked at me and said "Mom it is good to be home".  I couldn't agree more.  Brandon headed to his room, got under the covers, turned on his TV and went to sleep.  It is good to be home watching the dogs chase each other, listening to the cat meow for no reason, hearing those hee haws in the background of the donkeys waiting to be fed and hearing the faint sound of guitar music from Tony playing in the other room in the background.  Its all good and Brandon is back to his normal happy self.  More later.

Finally!!!!

Yes - finally some good news.  I haven't posted for a few months.  This is mainly because I have been trying to gather more information on Brandon's cancer; taking the time to find more adult doctors for Brandon and moving completely out of pediatrics; and dealing with the end of Brandon's treatment building more bone through the drug Forteo.  The news has been pretty positive.

We have found a oncologist who specializes in skin cancers and trained at MD Anderson.  Brandon's doctor at MD Anderson trained him.  I really like him.  His name is Dr. Mathew Fox.  I decided Brandon needed to establish himself with an adult doctor.  He believes, as well as a few other of Brandon's physicians, that Brandon should not have any further issues with cancer, but agrees he needs to be followed closely for the rest of his like.  I hope that is true.

One area I have not been focusing on is Brandon's lungs.  Brandon appears to have consolidation in both lungs and what looks like pneumonia in one.  This could be nothing but every test in the last 6 months has indicated this.  So I found an adult pulmonologist who is working with us on a plan.  In addition, if Brandon's cancer spreads we have been told it would go next to the lungs.  So I want to have an established doctor that will help us with both.  We have met with him 3 times.

What I have dreaded is that Brandon is now at the end of the treatment with forteo.  Forteo is a drug that builds bone and Brandon has been injecting this drug for almost 2 years.  In addition, we have added supplements, changed Brandon's diet, added weight bearing exercises and general exercise.  Apparently this has paid off.  Brandon has gone from almost 4.0 osteoporosis score to right at 2.5 with some portions of his spine at 2.1.  He is on the in-between osteoporosis and osteopenia.  Really amazing news.  I am so proud of him putting up with all the daily injections, daily supplements, change in diet and the exercise.  He hasn't complained one time.  But it also leads to if and when he will have surgery.  

Today we are here in Dallas for Brandon's appointment with his spine surgeon.  The spine surgeon is also pleasantly surprised with Brandon's success.  He wanted to check Brandon scoliosis to see if there are changes.  More good news.  Brandon's spine is almost exactly the same as last year.  I have to think this is because of the bones getting stronger.  So the plan is for Brandon to try and get approval for a 3rd year of forteo or the alternative drug.  This will be beyond the norm, but he really wants the best opportunity for Brandon to have a successful surgery.  So we will go back to Austin and get a request in for a 3rd year. We also agreed that surgery is no imminent and if Brandon does not decline we wont go forward.

We also both agreed that Brandon needs to recovery from his cancer surgery. I have been watching him the last few weeks and he is more unstable, slower and weaker since the surgery.  We need to help Brandon build back muscle in his trunk in order for him to handle a major spine surgery.  Brandon started back on physical therapy last week.

And last - Brandon has been at 1/2 activity this summer and we have slowly added back exercise, working full hours, horseback riding, choir, band band band, and recreational therapy.  He is not back with all of his schedule.  He has been tired, but I think it is because he is not used to this level of activity.  I am hoping it will help him get back on a regular schedule.

I would like to leave everyone with Brandon's supplement and diet info.  You will note some supplements for brain health.  This is based on Brandon's specific gnome but some of the supplements everyone could probably benefit from for memory improvement.  Otherwise, we added supplements to help build bone and allow for absorption of vitamin D/calcium.  I also added two new supplements and changed the diet slightly for fighting cancer. I hope this helps someone.

All good here in Brandonland.  Come out and hear his band the Eddie Ray Band when you get a chance.  They are really good.

Medication	Dose	amount	Max	For
SEIZURES/BRAIN HEALTH
Briviact	10 mg	10 ml	10	Seizures
CBD Oil	43 mg	1 cc in morning 2 cc at night	3 cc per day	Seizures
Avmacol	60 mg	1 a day	(2)	Seizures, nerve
NAC	600 mg	2 x day	2	Seizures
Citicholine	250 mg	2 x day	4	Nerve, seizures
Enlyte (GoGo)		1 capsule per day		Brain health
L methylfolate	1000 mg	2 x day	2
BONE HEALTH
K-force	D5000 with K2 180 mcg	1 capsule	( do 2 caps for 2 weeks)	Bone Health
Probiotic (Vitamin Ultra)	18 strains	1 capsule per day		Helps with absorption
Green tea	1 bag add to smoothie	1 bag per day		Bone health/ansorption
MITOCHONDRIAL
UBQH 100		1 to 2 x day	3	Muscle, mitochondrial
Lions Mane	500-700	1 per day	Can increase to 3	Memory/Mitro
PRO S.O.D.	1600	2 per day	2	Mitochondrial
Albuterol		1 vial in morning 1 night		Lungs
acetyl L carniture	500	1 a day	2	Nerve, muscle, mitro
CANCER TREATMENT
Afaya Plud		1 a day		Cancer
Artemidinin plus Bioperine	100 mg	1 a day		Cancer

BRANDON’S SMOOTHIE FORMULA

SMOOTHIE FORMULA –

·        Use real veggie and fruit (cocao/Alvacado) in cup by Daily Harvest

Included in cup:

o   Pumpkin Seed

o   Dark Chocolate

o   Greens

o   Dates

o   Alvacado

·        Use as a mixer - Flax, goat or Almond Milk for the mixer (Flax brand is Good Karma) with mix below: 

o   Coconut Water

o   ½ Banana

o   Nutritional yeast (1 tbl)

o   Matcha

o   Rosemary

o   Blueberries

o   1 tbl chia seeds

Free at Last

Eddie Ray Band with fans

At my last post Brandon was anxious to finally take his own bath and therefore be back to his own independence as he knows it.  This weekend his wound was finally declared closed.  Brandon was beyond excited and took his first independent bath since February.  For him life is closer to normal.  He has been restricted from having too much activity until the wound completely closes.  I am still going to have him take it easy for a few more weeks and then resume full work, horseback riding, physical therapy sometime in August.  So big celebration - this is the first time in 25 years that Brandon does not have a hole in his stomach for feeding.   Free at last with his more independence in eating and self care.  Brandon is beyond excited.

I am hoping that the rest of the summer is free of new medical conditions or treatments and Brandon can just enjoy being Brandon.  In Sept. we follow-up on scoliosis and osteoporosis with a new bone density test to check the effectiveness of the treatment of forteo, the change in diet and the supplements in hopes this has improved his scores.  I am anticipating they have improved.

In Nov. Brandon goes back for his first cancer check.  I am also anticipating Brandon will continue to be cancer free.

I think he is due for all good news.

In the meantime Brandon's band has been playing various gigs around town.  Brandon and all the band members are loving it.  For Brandon it is the highlight of his life right now.  You can check them at 3rd Thursdays at Belterra and playing events around town.

I had to take a break from interviews for Brandon's love of asking people who love the Beatles about how the Beatles music has impacted their lives since the diagnosis of cancer.  Brandon would have loved to just continue on but it just has not been possible to take the time for the interviews and production.  Brandon wants to start back up and has already picked two more people he wants to interview.  This summer we will finish up the ones we have in production.  This makes Brandon happy.  In case you haven't seen his blog here is the link.  https://brandonbeatsblog.com/

I like it when we are back to the routine and I hope it stays this way for a long time. Not much to say except lets all hope for all good news in the future for Brandon.  He deserves it.

More later
Leah

Life is better with a hot bath

I know many of you out there can relate.  For you "bath people" there is nothing like soaking or playing in a hot bathtub.  For me it is one of the few times in the day when I can a little alone time, relax and regenerate.   For Brandon it is his independence, his time to unwind and his time to swish around some water.  If Brandon had his way he would do baths all day long.  He just loves them.  I want that for him as well.  But we are not there yet with this cancer recovery.  He hasn't been able to take a bath since Feb when he had his first surgery.

Once again the healing is not a simple process.  Several weeks ago Brandon started developing an open wound in the area where the stitches are located on the stomach.  I jumped on this due to the issues we had with the first surgery.  Luckily, anticipating possible complications and from good advice of past MD Anderson patients, I had MD Anderson write an order for home health in the event we needed nursing during recovery.  I called the home health agency and they were here the next day to look over the opening and start wound care. We began wound care.  Within a week another hole opened in the site with drainage coming out.  We began treating this area as well.  But last weekend I have to admit "Dr Rummel" was out of her element.  I was changing the wound bandages, helping Brandon with a shower, and getting him cleaned up when Brandon turned towards me with blood everywhere.  I started screaming because I have never seen that much blood.  Brandon just stood there looking at me like I had gone crazy.  Ha.  He calmly walked to the bed and I tried to put pressure on the site to stop the bleeding. Last weekend was Memorial Day weekend so no one was around for me to call or go see.  After I managed to get the blood to stop I got the bandage back on him.  But the next two days his bandage was soaked with blood.  The home health agency came over on Memorial day after sending them pictures.  They wanted Brandon to go to the ER.  I had visions of someone opening up the whole site again and an even bigger mess, possible hospital stay and a longer recovery.  So I waited and was able to talk to MD Anderson first thing Tuesday morning.  By then his bandages where just wet and not bloody.  We agreed it needed to be looked at but could wait until this week.  We will be heading there Tuesday.  

So we are still talking about this cancer thing.  Brandon really wants to take a bath and for several weeks that was all he talked about.  But now he is just going with the flow, not complaining, asking about the details of his next gig.  We have cut back on Brandon's activity level for the last week with all the drainage and I am hoping this week they can drain the site so we can continue with wound care without the drainage and the tunneling.  I know.  Just what you wanted to hear in the blog today.  So on to the good news.  Brandon played today with the Tenacious Tuesday group of young adults who connect through music.  Today was the monthly student showcase at Hudsons on Mercer.  It was a small group today but Brandon had fun.

 Tenacious Tuesday

The other topic of discussion is Paul McCartney.  At Christmas I bought Brandon tickets for Paul McCartney's concert in Arlington.  Brandon is talking non-stop Paul McCartney.  Not quite the same as seeing it from the side stage, but I do think Brandon is going to love seeing all the effects during the show and I know he will love hearing the full set.  He is pretty excited about our trip to Arlington.  Of course I cant travel to north Texas without booking a doctor's appointment.  I haven't forgotten that Brandon really needs the back surgery, so we are visiting with the scoliosis doctor while we are there.  

Our big goal for the next month is to get the wound completely healed, no nursing  and letting Brandon finally get back to his own independence.  Because life is better with a nice hot bath.  

All for now

Leah

Brandon's cancer update

Thank you to everyone for your love, prayers and support the last few weeks.  Brandon has made an amazing recovery considering this was a major surgery involving his stomach and they removed a very large portion of his abdomen.  In fact he is acting like he feels better than he has in a long time.  I am trying to keep him from doing too much and not to damage the surgery site.  We have three more weeks before he will be all clear for normal activity.  He is taking no pain medicine and the site itself is healing very well.  Today Brandon's only question was when are you taking out the sutures which they did today.  The other question was when can I take a bath again.  For Brandon that means he is back to being independent and not having his mom help him every night in the shower.

Today we went back to MD Anderson for our second post operative visit, this one with Dr Ross Brandon's main surgeon.  We received the final pathology report back from MD Anderson and as expected, good news from the report.

• The report confirmed removal of the cancerous tumor with the main tumor the size of 4.3 cm.  That is a large squamous cell carcinoma tumor.  
• The report also confirmed that the tumor spread to the abdominal wall and into the stomach.
• The report confirmed that the tumor is well to moderately differentiated so it hasn't spread too far from the original tumor.  
• The report also stated that all margins were clear of cancer.  Therefore they removed all cancer they were able to identify and had clear edges all around the cancer. 
• They did not find perineural invasion.  Therefore they are not seeing cancer in the nerves. 
• They did not find cancer in the lymph nodes.
•  The cancer was very deep.

At the visit today Dr. Ross confirmed the diagnosis of Marjolin's ulcer.  A form of squamous cell carcinoma.   I have been trying to do as much reading in my spare time to learn about this type of cancer.  A few things I have found.  No one seems to know why this kind of cancer forms.  It is 3 times more likely to impact males rather than females.  This type of squamous cell carcinoma accounts for .05% of all squamous cell carcinoma so therefore it is fairly rare. It likes to attach to scars, burns, sites that have chronic infections and can form over 1 to 30 years before someone diagnoses the cancer.  The description of the cancer matches perfectly with Brandon's such as excessive granulation tissue, bleeding, rapid increase in size, foul smell and crusting over. I realized after cleaning out the medicine cabinet that there was a tube of an antibiotic prescribed over 10 years ago.  So I can say that Brandon has had an infection for over 10 years on and off.  I also found that the rate of return within the first year is around 30% for Brandon's severity and prognosis is much higher if Brandon does not have a reoccurrence within 2 to 3 years.  The treatment for Marjolin's ulcer is exactly what MD Anderson did - surgery. 

After surgery, there are several options.  If the cancer has spread, gone into the lymph nodes or other organs or is large then radiation and chemotherapy  may be recommended.  But only based on the level of risk.  In Brandon's case we were referred for radiation therapy.  The reason is because of the size of the tumor which was large and because of the depth of the tumor which went into the abdominal wall and the stomach.  But Brandon has other risks unrelated to the cancer.  If he were to have radiation therapy they would want to do external radiation therapy for 6 weeks every day for 15 minutes.  Brandon would have to be sedated for each treatment.  Because he is only 26 there is also some risk for cancer in the future from the radiation.  There is also some risk for the area where radiation is targeted within the abdominal wall.  The other important fact I found in the literature and the doctors confirmed is that use of radiation doesn't necessarily improve prognosis for this type of cancer.  After discussion with both doctors we agree today to NOT move forward with radiation treatment.  Rather we will wait until the next cancer check.  If the cancer has reoccurred in 6 months they will remove the area and we can discuss radiation options again at that time.  

I have been reading with extreme interest concerning the book I posted on the last blog "Anti Cancer."  During this 6 month period I will change Brandon's diet to closely align with recommendations in the book.  This is fairly easy for Brandon because most of his nutrition comes from smoothies.  If you add chocolate to the smoothie he is good with it.  If you haven't had a chance to read this I would say it is a must read for any cancer patient and survivor.  

Brandon's integral medicine doctor found a good supplement with 10 years of research that has a positive impact on this kind of cancer.  We will be adding Afaya.  We recevied the okay to begin using this today.  The positive outcomes from using turmeric is not new.  Afaya combines with other supplements. Here is a link to an article on Afaya.   (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6093880/pdf/41598_2018_Article_29683.pdf) 

So for now, all is good.  Brandon is feeling great and within a week he will be independent again.  A sigh of relief for now.  Going to let go of this cancer thang for now and have some quality time.  Brandon taught me a lesson, he focused on his band, his gig and getting his independence back.  He told me that I can make the decisions on the rest of it.  I continue to be wowed at how amazingly well Brandon handles each major life event focused on those things important to him. On the way home all he talked about is what songs he wants the band to play, hearing the details of his next "gig" with the band (and for Phil) and the listing of all the songs (Beatles) he wants to learn during a 3 hour drive home.  Glad to be home.

More later.

Leah 

Cancer Surgery and the MD Anderson experience

Tonight I am at our hotel room as I have a night off while my brother Jim is staying with Brandon.  I learned a long time ago that if Brandon is in the hospital it is better to have time off for everyone involved.  It gets overwhelming, tiring, emotionally draining and it always includes sleep deprivation.  This hospital stay has not been any different.  But I am always amazed at how well Brandon does even under the most difficult of circumstances.  He is very strong and determined to get better.

Before we went to Houston Brandon's friend Roger and his family put together a fabulous book for him and me on pain.  Roger made these great signs for him to use to let us know about pain.  He has used them.  I want to thank them for the valuable information and the fabulous and thoughtful Beatle signs.  All was great.

This week began with the drive to Houston and checking into our hotel close to the hospital. Knowing that Brandon may not be able to eat solid food for awhile letting Brandon to eat the food he loves has been our goal prior to surgery.  I told him all weekend that whatever he wanted to eat and however much he wanted to eat was up to him.  He went with me to the grocery store and he picked everything he loved.  He ate all weekend. When we arrived in Houston I found a restaurant that only served mac and cheese and we went there for dinner.  He was in mac and cheese heaven.

Brandon had to be at the hospital for surgery at 6:30 am.  I was a little amazed at how the process worked.  We checked in, we waited, they called Brandon's number with others and they have an assigned room for him to prep for surgery.  It was a little weird.  But when we arrived at his assigned room, Dr Ross's interns were there waiting for him.  They asked questions, the nurses participating in the surgery met with us, the anesthesiologist met with us (oh and she was form England - a plus), both teams met with us.  When they felt confident with the answers Brandon happily agreed to go back with them.  It was an agonizing waiting game.  Every two hours we received updates from the nurses in the surgery areas and we were waiting along with at least 30 others to hear the results.  Finally they called for us to meet Brandon in recovery around 2:30.  We were there as he woke up.  He looked good.  They moved him within the hour to a room.  I have been in many hospitals over the years and I was so happy when I saw the room with my own area for sleeping and with my own small TV.  I know that sounds selfish, but after listening to Disney for 24 hours a day for days you just have to have something else in your head.  

The surgery was successful.  While in surgery the two surgeons checked margins to make sure their wide margins did not have cancer on the edges.  They were all successful.  Dr Ross removed a large portion of the abdomen down through the abdominal wall including muscle.  At the skin level the area removed is very large but as Dr Ross continued to remove cancer cells and take a wide margin he narrowed the excision closer to the gtube hole.  In addition, I was concerned about a secondary site where Brandon had a fundoplication at age 1.  The area had scar tissue.  Dr Ross agreed once he opened up Brandon that this area seemed suspicious and cleared up the site and removed the entire area.  They took tissue from this area as well.  Dr Ikoma used robotics to cut out the cancer in the stomach, make a small incision where they removed the cancer and repaired the stomach.  The repair and the area removed was about 10 centimeters in a circle.  Therefore, they were able to remove a minimal amount. Long term after this heals Brandon should be able to eat his favorite cheese again.  

All the tissue was sent to pathology for further testing and review.  We should be able to tell us the stage of the cancer and then determine if more treatment is needed.  But we will not have these results until next week.  

Brandon went to his hospital room.  He was doing well with recovery.  He has a tube that was inserted in the site for drainage, he is under strong pain medication and he has medicine to avoid blood clots.  He also has drugs for Brandon's other chronic issues. Before surgery we received the results back from the CT scan from Scottish rite.  One of the things they found was Brandon has poor aeration of the lower lobes (lungs) with some bronchiectasis and consolidation in the right lower lobe to be correlated with any signs or symptoms of pneumonia.  This is not a new diagnosis.  Brandon had something similar on the MRI we did in Feb.  I called MD Anderson before the surgery to determine if we needed to do any treatments or anything special before surgery.  They basically said that we will be aggressive to treat the lungs after surgery.  We would probably have been fine, but yesterday Brandon started to loudly complain that he was about to have a seizure.  We began watching Brandon at 10:50 for seizure activity.  He really started with an aura, Brandon had a seizure, then it continued with the inability to respond, eyes rolling, and obvious activity.  MD Anderson was on it with their crisis unit in the room within 5 minutes after we alerted the nurses, then Dr Ross's interns, then they called their neurology department.  They gave Brandon adavin to stop the seizure at 11:15.  By 11:30 the activity stopped.  But poor Brandon was so sleep deprived, still unable to really communicate leaving MD Anderson staff a little on edge and watching his monitors.  Dr Ross arrived and so did the head of neurology.  I think we all agreed that the shock to Brandon's body with this major surgery, the fact that he was so sleep deprived, the fact that his lungs were starting to sound bad and lastly use of tramadol for pain all contributed to this seizure.  For Brandon this seizure was major and I think it really scared him.  The neurologist called Brandon's neurologist in Austin and they agreed to treatment to get him stable.  Brandon finally slept late in the afternoon and throughout the night.  It was pretty awful to watch.  

Because we were unable to get Brandon up yesterday Brandon's lungs got much worse.  He complained all night and most of today about his chest and his inability to breath.  MD Anderson did get aggressive, changed his medication, brought in inhalation therapy and percussive therapy to help clear the lungs. When I left tonight Brandon has was up and walking and even smiling some.  He still has labored breathing and after the walk went back to bed and fell asleep.  But he is much better than yesterday.  

We think we may be able to go home tomorrow or Monday as long as Brandon improves.  We will be back next week for the results of the pathology and to meet with Dr Ikoma and hopefully to remove the drainage tube.  

Many people reached out to me before we headed to MD Anderson with lots of great information.  I have read most of the things people sent.  But I have to say I find this book intriguing.  As I walk around MD Anderson and I think back to my school days I am slightly shocked at how many people are being treated for cancer.  I have to think about my school days and I didn't know that many people with cancer.  I could count them on my hand.  Today I know many many people with cancer and I have to wonder what is the cause for what appears to me as a major increase.  I think you have to put many factors together but I find this book very informed with solid information and recommendations on treatment that is not through conventional means.  I am considering changing Brandon's regiment and diet to more closely mirror some of these recommendations.  I share this with you in case you may be interested.  

and now goodnight.  

Leah