Calm before the Corona Storm

I have been working on posting this blog for days.  I have to admit I an conflicted in many ways.  Right now Tony and I should be on a beach in Mexico hanging out with my brother.  He is in Mexico right now and soon will fly back to Italy.

This is the year I decided that life is too short and quality time is a priority. So I booked some short trips to have a little quality time with family.  But quality time at least for the next few months may be at Casa Rummel by the pool.

When Brandon was born and in the ICU for over a month we followed strict sterile techniques to make sure he would not get an infection.  Brandon was so severely medically fragile.  I followed these guidelines for the first two years of his life.  Brandon still caught several pneumonias during this time, but we were able to jump on them and treat aggressively.  When Brandon was around 3 I needed more care for him during the day so I could work.  I decided to try a special day care for him.  I knew this would be great for socialization and it would be much more affordable during the day.  He was in day care for 2 weeks.  He was then in the hospital for 3 weeks.  He caught a severe bug from some of the kids in the daycare.  In the middle of the hospital stay, his doctor came to me and told me there was nothing else they could do for Brandon to treat his illness.  I of course said no way and called every specialist seeing Brandon at the time.  They all gathered at the hospital, called each other and adjusted his medication.  It was a close call but at the end of three weeks he fought off pneumonia and turned it around.  I changed doctors and took Brandon to Houston to a new specialist to treat his lungs.  Life changed for us.  We had a protocol, we knew Brandon was high risk if he caught anything and we knew how to be aggressive on treatment.  Brandon had other pneumonias in the last 27 years, but as he grew older they were fewer and further apart.  I knew Brandon needed to catch some of these illness to build up his immune system.  So when the H1N1 started to appear in Texas I wasn't too concerned.  I was watching to see if we again needed to be aggressive in treatment if he caught it.  He caught it and within 24 hours he had 104 temp and we landed in the  hospital.  As I have said before on this blog, Brandon was in ICU letting a breathing machine breath for him for 3 weeks.  It was real and it was scary.  And darn it - I wasn't going to let a flu change our lives.  Once again the physicians (all of his) checked on us regularly, worked with the ICU team at Dell and Brandon survived.  Others on the same floor as Brandon did not. It was scary.

I have always said to people who work with Brandon, people who see Brandon, parents of Brandon's friends, family and pretty much anyone having contact with Brandon to please stay home rather than expose Brandon to any horrible illness.  Since Brandon is no longer in school this has been much better.  From all those pneumonias and silent aspiration Brandon had in the past Brandon now has consolidation at the bottom of both lungs and one lung always looks like he has pneumonia.  Brandon does really well with this limited lung capacity and we try to avoid any illness.  Brandon also takes a ton of supplements and a great diet to help keep Brandon strong and healthy.

But here we are.  This new virus scares me. Why.  Because it attacks the lungs, there is no cure and no one is immune because this coronavirus has not been around previously.  True that 80% of people who catch it have mild or no symptoms.  But Brandon is in the 20% that might have more severe forms of this.  So what to do.

1. Please, please, please, do not hang around Brandon if you are experiencing any symptoms.  We need to be overly sensitive while this nasty coronavirus is a thing.  I hope for the sake of everyone it dies a quick death within a few months.
2.  As we see this virus continue to spread we will need to limit Brandon's exposure to crowds.  We will just have to take it day by day and event by event.
3.  I am working with Brandon on the thing he loves the most - don't hold people's hands.  Many of you love it but for now he just needs to not do it.
4.  Be flexible with us as we work through what is best for him.
5.  We made it past cancer so far, H1N1, and all the other illness for 27 years.  We will make it past this one.
6.  I also am watching this illness for everyone at Casa Rummel including me.  I have also limited myself to not traveling much right now and hanging out more at the house.
7.  We are washing clothes like crazy, washing hands much more, using alcohol and sanitizers to kills germs and cleaning more often.
8.  I am sure this list will grow before it gets shorter.

How is Brandon handling this corona storm.  Not that great.  He is very concerned because we cancelled our Beatles on the Beach festival trip.  He said that was okay as long as he could still see the Monkees and the Beach Boys when they come to Austin.  For now I said yes.  But I also said we need to keep monitoring.  He is the most concerned about our trip to London and Liverpool.  I told him that is 6 months away and not impacted by the coronavirus for now.  He is still concerned and calls me about it a couple of times a day.

I was also very conflicted this week when SXSW cancelled.  I played SXSW in the early days when it started and I know how much the city, the musicians, the restaurants and many businesses rely on the extra income coming from SXSW.  Brandon and I would not have gone.  But many other's would.  I am conflicted because if I was 20 and still playing I would be all in.  As Brandon's mom I don't want to see a quick spread of this virus in Austin putting those at highest risk of higher chances of catching this scary illness.  For now we are staying small and local and monitoring where this crazy corona lands.

Speaking of local, Brandon's band, The Eddie Ray band is playing this Saturday March 14th from 6:00 to 8:00 pm at Do-Rite BBQ at Graceland.  We will have a large band for this special gig with many of Brandon's friends and local musicians. Here is a link to the gig
Eddie Ray Band March 14th Do-Rite BBQ .

If you don't have anything to do and still want a little local unique music, come to support the band.

We have other great news coming this week so look for another post from me soon.  Brandon is in great spirits otherwise and is always excited about music.

That's all for now.  Everyone stay healthy out there. (Added note below from Brandon's Integral Medicine Physician)
Leah

From Brandon's Integral Medical Physician.  
Given the recent spread of Coronavirus from China to other countries including western Europe and the United States, we have been receiving many questions about the virus and what precautions can be taken to help prevent infection and/or limit severity of the disease.   The following provides information from both the World Health Organization and the Centers for Disease Control.  We have also included information regarding natural anti-viral supplements that can help to boost the immune system and theoretically limit the severity of the disease for those who become exposed and/or infected.  

***********************************************************************************************************

Coronarivus (COVID-19) is a respiratory illness that can cause symptoms such as fever, fatigue, dry cough, body aches, runny nose, sore throat, and/or diarrhea.   Most people who contract the virus will be asymptomatic or experience very mild symptoms and recover from the disease on their own.    Some may experience more severe symptoms such as difficulty breathing that may require hospitalization and/or result in death.  (The World Health Organization notes that deaths have occurred in approx 2% of the people infected with the virus.  You can go to https://www.who.int/news-room/q-a-detail/q-a-coronaviruses for a WHO Q&A section that provides more information regarding the virus.) 

According to the CDC, symptoms of coronavirus may appear in as few as 2 days or as long as 14 days after exposure.   Coronavirus is spread via respiratory droplets from an infected person who coughs or sneezes to another person who is in close contact.   A person can also contract the virus by touching an infected surface or object and then touching their own mouth, nose, or eyes.

To help prevent the spread of this virus, the CDC recommends the following:

--Avoid close contact with people who are sick.

--Avoid touching your eyes, nose, and mouth.

--Stay home when you are sick.

--Cover your cough or sneeze with a tissue, then throw the tissue in the trash.  You can go to https://www.cdc.gov/healthywater/hygiene/etiquette/coughing_sneezing.html for additional cough etiquette tips.

--Clean and disinfect frequently touched objects and surfaces using a regular household cleaning spray or wipe.

--Follow CDC’s recommendations for using a facemask.

--CDC does not recommend that people who are well wear a facemask to protect themselves  from respiratory diseases, including COVID-19.

--Facemasks should be used by people who show symptoms of COVID-19 to help prevent the spread of the disease to others. The use of facemasks is also crucial for health workers and people who are taking care of someone in close settings (at home or in a health care facility).

--Wash your hands often with soap and water for at least 20 seconds, especially after going to the bathroom; before eating; and after blowing your nose, coughing, or sneezing.  If soap and water are not readily available, use an alcohol-based hand sanitizer with at least 60% alcohol. Always wash hands with soap and water if hands are visibly dirty.  You can go to https://www.cdc.gov/handwashing/  for more information.

SOME INTEGRATIVE PREVENTIVE OPTIONS:

Although there is currently no vaccine available to prevent Coronavirus, there are several natural anti-virals and other immune boosting options that you can keep at home and take with exposure to/ first sign of any viral type illness.

1.  Sambucus 1-2 lozenges daily for exposure, increasing to 1-2 lozenges three times a day for signs of viral illness.  Sambucus also comes in liquid (2-3 tsp daily for exposure, increasing to three times a day for illness) and gummies (the gummies may contain zinc, so we do not recommend the gummies for long term use). Gummies are also lower in concentration (2 gummies contain 50 mg of Sambucus; 2 lozenges contain 200 mg; 10 ml (2 tsp) contain 100 mg)

Here is a research article showing the link between Sambucus nigra and coronavirus: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3899428/

2.  Viracid -- contains Sambucus as well as Andrographis and Astragalus which further boost the immune system against both bacteria and viruses.   Recommended dosing:  2 capsules once daily for exposure;  2 capsules 3x/day for illness. Do not take Viracid longer than one week. 

Viracid, if taken close to bed, can affect sleep in some individuals.  You also have the option of taking the Viracid 2 capsule twice a day (morning and early afternoon) and Sambucus at night. 

If you are going to travel, we recommend you take either Sambucus or Viracid the day of your flight prior to getting on the plane. 

3.  Allqlear -- made from Quail eggs and is a natural protease inhibitor.  Was developed to help with dust, mold, and pollen allergies -- theoretically may be beneficial in decreasing Coronavirus's ability to enter the nose as a protease inhibitor, but has not been tested.  

4.  Beta Glucan -- helps to boost the immune system.  Recommended dosing: 1-2 capules twice a day 

5. Avmacol Extra Strength (formerly known as Avmacol Immune; sulforaphane with beta glucans from maitake mushroom extract) -- helps to boost the immune system.  Study showed decreased risk of serious illness and death from flu in animal studies.  Recommended dosing: one tablet daily 

Dosing recommendations may be different for children <100 lbs.="" nbsp="" span="">

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