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

Cancer still sucks

Yes Cancer still sucks. We are back from Houston.  I am tired, my brother Jim is tired and Brandon says he is not tired but he was a little droopy eyed on the drive back.  I am beginning to understand this cancer a little better and trying to piece together all the information everyone is throwing at us or not throwing at us.  I think both are relevant.  To all you cancer survivors and those of you who have loved ones who have been through this journey my heart goes out to you.  I have been in the world of disabilities, fighting for services for Brandon, trying to let him live the life he loves and hoping I have done everything in my power to help him be the best he can be.  But this cancer thang.  It is a whole different world.  And one that is so heartfelt, sad, joyous, inspiring and filled with hope.  I cant express how profound it is to walk around MD Anderson seeing 100's of patients fighting the fight and surviving after receiving treatment that has left them weak, underweight, without hair, in wheelchairs, surrounded by family or not, but there for more hope.  Some of these patients have been doing this for years.  I met a mother who was staying at our hotel with her son at the hospital at his end of life.  She was talking to the hotel to see if she could keep her room even though she did not know how long he would survive.  I then heard the hotel working on accommodating whatever she wanted and then told me that is the hardest conversation they have with people who stay at the hotel.   I saw a family - all of the adult kids there with they mom who was celebrating that she gained a pound and she is now 93 pounds instead of 92.  The kids were taking meticulous notes on all her vitals.  She seems at ease.  I saw a patient who told staff she has no family and was doing the same thing we were all day long going from appointment to appointment by herself.  But one of the nurses was trying to make the day easier.  It is hard for me to be sad when Brandon is sitting in his chair singing the Beatles and asking about the weekend, if there will be a TV in his room and if he will be in pain.  But I know cancer is serious and Brandon's in not the exception to this. I tried for the last to days to grasp everything that everyone was saying.  Some of it is what they are not saying and some of it is a lot of information coming at you very fast.  I am sure I still don't totally understand and I am positive that Brandon does not understand.  But I did get a great deal of information on Brandon's cancer, the current treatment plan, how long for recovery from this round and the follow-up.  

The diagnosis - Dr Merrick Ross (dermatology oncology) said that Brandon has "Marjolin's Ulcers" a form of Invasive Squamous Cell Carcinoma.  I didn't understand what he said and later found the description of the cancer that evening.  It makes total sense.  This cancer comes from old scar tissue, can live in the body for years and then turn into a cancerous tumor. I am including this link in case you want to read more.  Please note this link is going over examples in the lower limbs.  But this cancer can be anywhere in the body.  We did hear over and over that this cancer is rare, it sounded like they have never seen this cancer going down the g-tube site (I tell all you moms this so none of you with kids that have g-tubes get nervous) and I am not sure Dr. Ross has seen this cancer in the stomach previously.

     Marjolin's Ulcer 

The other thing I heard from Dr. Ross was that this is an aggressive cancer.  You can see that in the article.  The 5 years survival rate is between 40% to 69%.  But that is aligned with what stage of cancer the patient is in.  That is the big question here.  We will not know what stage Brandon has until after the surgery is completed and the pathology comes back.  

I know this sounds bleak, but the good news is the pathology so far is showing well differentiated or moderately differentiated cancer cells which is better than poor differentiated.  There is no indication that the cancer has gone into the lymph nodes and it is possible that this is in the early stages.  It is also possible it is fairly contained to the area that goes down the g-tube.  All possible good news and can make for a much better prognosis.  Trying to stay positive here.  

The plan for treatment is to surgically remove the cancer site with wide margins.  Based on our conversation they will check the margins with pathology during the surgery.  The excision will go all the way into the stomach through the abdominal wall muscle.  They will use the robotic method to remove the cancer in the stomach and will use a minimally invasive method leaving more of the stomach remaining and with much less incisions. This will allow Brandon to heal quicker.  They will close the wound by sewing the two open sections together including the stomach and will use mesh to hold in place.  They are predicting 5 days min to be in the hospital and it will really depend on how Brandon is doing at day 5.  They are predicting that Brandon will be recovering for 6 weeks.  

We will all wait for the final pathology report after surgery (it takes several days) to figure out next steps.  It is possible he may need radiation, it is possible he will not need any further treatment.  But what they did say is a definite.  Brandon will need to be aggressively monitored for any reoccurrence in the current site or another area of the body where the cancer has spread.  Dr. Ross said they will be watching the lungs closely and they will be monitoring for any changes.  So we will need to go back on a regular basis (2 to 3 months) to monitor and make sure there is no re-occurrence.  This reminds me of my many friends always on the look-out for returning cancer.  We will be joining those watching for any sign of reoccurrence of their cancer and hoping we can join those celebrating their cancer-free anniversaries.  

Brandon is in good spirits and is ready for his second surgery.  He did get his answers to his questions.  Both surgeons like the Beatles.  It looks like he will still be able to eat cheese.  He will have a TV in his room (Uggh 5 days of Disney).  The last question was will he be in pain.  MD Anderson does a few things to help with recovery and pain.  They are using the minimally invasive approach which has a quick healing time.  They also inject anesthesia in the area where the will cut.  This relieves pain for several days and that allows them to use less narcotics for overall anesthesia.  Brandon will have the surgery April 17th first thing in the morning and the 2nd surgeon said they will be done by 2:00.  It will be a long day waiting. 

My brother Jim went with us to this visit.  While we were heading to day 2, I received a call from the assisted living facility where my Aunt Sue lives.  She fell down, hit her head and had a large cut on her face.  They called EMS and they were on their way.  Normally one of us would be there but we were both in Houston.  I want to thank Lindsey Granger and Melissa Rowan for stepping in at a moments notice to meet Aunt Sue at the hospital, get her through treatment and back to the assistant living facility.  We are all anxiously awaiting her 98th birthday on Monday.  It really takes a village.  

More later

Leah

As we know it today

Brandon has been diagnosed with invasive squamous cell carcinoma which is considered rare.  Based on the CT scans we did at MD Anderson the cancer has gone into the abdominal wall and into the stomach.  We have finally heard back from MD Anderson on the plan for Brandon at this stage.

MD Anderson is recommending surgery to remove all or as much of the cancer as possible with the following details:
1.  There will be two surgeons performing surgery on Brandon at MD Anderson.  One is Dr. Merrick Ross and his team from the dermatology oncology dept and the other is Dr. Naruhiko Ikoma and his team which specializes in robotics and gastric surgeries.
2.  Dr Ross will perform additional clearing of the tumors between the skin and the stomach including the abdominal wall.  That means the area they already removed will need to be larger because they found more cancer remaining.
3.  Dr Ikoma will be performing a robotic partial gastrectomy.  This means that they will remove the cancer in the stomach using robotics and will have to remove a portion of the stomach.

Needless to say this is a big surgery and could have major lifestyle changes for Brandon.  Surgery is scheduled for April 17th.  We are going back to MD Anderson next Thursday and Friday to meet with both teams and to get a better understanding of how long Brandon will be in the hospital, how long to expect for recovery, possible complications, diet after surgery, impact on his osteoporosis and scoliosis, his muscle tone for the future in his trunk, any additional treatments needed, recurrence of this type of cancer and any other thing I can think of.

So I ask for your help with this blog.  I am trying to make a list of questions to ask both doctors next week and things to consider.  If you have had cancer treatment in the past or know of someone you think I should ask please let me know of anything you think we should consider or ask.  If you have experience with any stomach surgery including bariatric surgery please let me know anything you think I need to ask or anything to consider.  Or if you have any medical expertise and just want to throw a few questions or things to think about to me feel free.  I am taking all of them now before we head down this path.

I am in the learning mode stage so we can make the best decisions for Brandon and know the impact for the future.  Thank you everyone who has reached out to me and all your support.
Leah

Cancer Sucks

I think we can all agree.  Cancer sucks. Today I am trying to process this new foreign diagnosis for Brandon.  I have to admit this is a hard one.  Brandon received the results back from his cat scan with contrast from MD Anderson.  It appears that the cancer has spread to the abdominal wall and into the stomach.  We don't have a treatment plan yet.  Brandon's doctor at MD Anderson (Dr. Merrick Ross) is recommending a consult with a second surgeon.  They have asked us to come back to MD Anderson for a consult.  The normal treatment for this type of cancer is surgically removing the cancer.  We will want to weigh any quality of life concerns with the surgery options and hope we can come up with a good treatment plan.

A little light on the results is that the cancer has not spread to other areas.  However, we wont know if it has spread to any lymph nodes until there is biopsy or if/when he has surgery.  

This is not going to be a long blog today because I really don't have anything else I can say.  Except Cancer Sucks.  Thank you everyone for your outreach and support.  It means a lot to us.

Hug your loved ones when you can and all you can.
Leah

A Blessing in Disguise

I have to say the last few weeks have been a shock for me and Brandon and one that completely came unexpected.  We are going through the motions of dealing with the new diagnosis, but I don't think it has completely sunk in.

So here it is as I know it for now.  Brandon has been having problems with his g-tube site for several years.  Thinking back about the g-tube site and infections, his site has not been the same for at least 2 -3 years and perhaps longer.  We have been to many doctors complaining about the redness of the site, the fact that nothing seemed to work to completely heal the site and one infection after another.  I think at least 10 to 15 doctors have seen it, including the Mayo.  All of them have said it looks like a normal infection, superficial and then would tell us medication should be used to treat the site.    But prior to the redness of the site, Brandon was always the poster child for a perfect g-tube site on his stomach.  It was always looking like normal skin, no issues and easy to change the g-tube/mic-key.  Several years ago the site started to have issues leading to removing the mic-key to help heal the infection in Janurary.  The site continued to get worse even after the g-tube was removed, more tissue continued to grow outside the outer skin.  It became so bad that before surgery just to touch it would result in blood or infection shooting out if the site.  In February we had surgery to remove the infection and clean up the site.  Brandon was left with a very large and deep hole in his abdomen and we began using a wound vac to begin the healing process.  While we were in the hospital the surgeon came to our room to inform us that portions of the infected area that he removed had come back as invasive squamous cell carcinoma.  The cancer was in the abdominal wall and went down the g-tube site from the skin down to the stomach.  The tumor thickness is at least 16.5 mm which is very large.  They also found carcinoma in the deep margins that lead down to the stomach.  We know that not all the cancer was removed from this very deep section of the wound and stopped short of the stomach.  It is possible the cancer continued into the stomach.

Squamous cell carcinoma runs in our family mainly due to exposure to the sun.  I have had it, both my brothers have had it, my father had it, my aunt had it.  I have had it more than once.  I know what it looks like.  Brandon's red areas did not look like this.  The skin cancers my family has had all stayed in the top layers of the skin and were well contained to the area of exposure.  I think most people with this type of cancer believe that is typical for this cancer.  It is.  Brandon's cancer is rare.  It is rare to go into the deeper tissue and even more rare to possibly go into an organ.  We know we did not get all the cancer removed when he had the surgery because we didn't know it was cancer.  The surgeons all said that this type of cancer likes to attach infected open sites and areas where there is scar tissue.

Luckily through a friend (thank you) I sent the pathology report to MD Anderson and they responded quickly with they want to review the actual sample.  I was a little surprised because they normally don't do this type of cancer unless it is invasive.  I am glad we did.  They received the lab samples from Seton.  Yesterday they confirmed that this was indeed invasive squamous cell carcinoma.  They stated they want to see where it has spread and if the cancer is now in the lymph nodes, abdominal muscle and/or stomach.  I also asked them to check a previous surgical site that has been inflamed for a few months.

We really don't know too much about this cancer's impact on Brandon's health at this point until we know how far it has spread.  We are hoping that it is contained similar to what you would see with a regular skin cancer and that the next surgery will be relatively simple.  But we are also prepared that it may be a much more extensive surgery. If the cancer has spread in the deeper tissue, the lymph nodes or an organ this type of cancer can be more difficult to treat.  I feel like that is down the road and I am concentrating on what we know right now.  

Next Monday we head back to MD Anderson and on Tuesday Brandon will have a comprehensive CT scan of the abdomen under sedation.  After they review the CT scan and talk to the Austin surgeon, MD Anderson will develop a surgical plan for Brandon.  I was feeling a little guilty about taking Brandon to MD Anderson as this could be fairly simple, but I talked to his integral medicine doctor today about the plan from MD Anderson and she told me there really isn't the expertise for this kind of cancer and for Brandon's multiple complications here in Austin and MD Anderson was the best place for treatment.  Brandon and I are both feeling good about our decisions.  MD Anderson wants to do this surgery within 1 month.

I have to say through all of this Brandon once again came through as the hero in this picture.  People have poked in the wound area which is so large, stuffed materials in the wound, pulled hairs, removed surgical tape from around the site and talked about surgeries and treatments.  Through all of that Brandon is going with the flow and asking when is the next gig for his band.  Even though we were so tired after our visit on Tuesday he sang a little on the way home.  He did stay up all night Monday and therefore I stayed up all night Monday night because he said he was worried.  But he still handled the day like a pro and when he was totally bored he took a nap.

So we ask you all to say a little prayer, think positive thoughts and/or cross your fingers whatever your choice.  We will take it all in hopes the tests they run next week don't show too much spread.  A few of you have asked how I am doing.  I admit it.  I am stressed, but trying to take a little Leah time and rest as much as I can.  Brandon is home each night for the next few weeks while he is attached to the wound vac machine, as we go through these tests and the next treatment.  I have asked for a little extra help from a few friends to keep up with it all.  Thank you all for your words of encouragement and keeping up with Brandon as we go through the latest.  Life really does take twists and turns along the way.  Our road has taken another big curve but all worth it for Brandon's health.  If we hadn't done this surgery we would not have found this cancer and now seek treatment. A blessing in disguise.  

We leave you with pictures from "Off the Beatle Path" on KOOP Radio.  Brandon was able to go to the show on Monday before we headed to MD Anderson.  We won a quilt made by one of the employees of KOOP radio and auctioned off during their fundraiser.  Brandon was so happy.  He wants it on his bed.  Great timing.  More later.
Leah

The good and the bad - A Brandon and Leah health update

GOOD NEWS - Several of you have asked about the results of my heart tests.  Good news - the additional tests all came out normal.  I will of course monitor myself and if I have any other issues go for further testing. But for now all is well.  It is a wake up call and I have been concentrating on better health for the future.  

NOT SO GOOD NEWS - I mentioned that Brandon's g-tube site where we removed his Mr. Mic-Key (g-tube) is infected.  It has been for months.  It has continued to get worse everyday.  Brandon has completed his 7th antibiotic and we are all concerned that he shouldn't have anymore antibiotic treatment for fear that he will become resistant to future treatments.  Even after 7 rounds of treatment we are still seeing signs of a major infection.  This weekend the site began bleeding and has continued to bleed.  Because of this, how bad the site looks and the fact that no antibiotics are working, Brandon will have surgery next week to try and clean out the infection.

BAD NEWS - While meeting with Brandon's surgeon (Dr. Meynig) today, we went over possible surgery options that may happen while the surgeon is trying to clean up the site.  It is possible the source of the infections is in the stomach or somewhere internal that may require repair.  It is also possible that Brandon may have a fistula that has the stomach lining attached to the area of the gtube opening.  In the event he has a fistula this will also require surgical repair and is a more extensive operation.  AND we wont know the extent of the surgery until the surgeon can open up the area.  We discussed the options and agreed we just need to try to repair the site as best possible,  It is possible Brandon may require a second surgery if this does not correct his infection.  Brandon is excited to have the surgery because I think he is in pain right now.  I am glad we are finally taking a more aggressive approach to get this healed as I am getting more concerned about the infection.  After the surgery Brandon will require wound care to help the site heal.  He will need to stay in the hospital for a few days.

This was not something we had on the plan but if you have read my blogs the last few years changes happen frequently.  Through all of this I cant say enough great things about Brandon.  He has been so positive and has rarely complained.  I am proud of him for hanging in there through everyone poking, cleaning, applying medication and my crazy "just found a new treatment" attempts.  I want to thank all of my other "tubie" parents, nurse friends and doctor friends for your advice through all of this from all those lovely pictures Brandon let me take.  We could not have made it this far without you.  

I am thinking good thoughts for next week and praying for the best possible outcome. We will keep everyone updated.

More later.
Leah

We have a plan!!!!!

Brandon and I have decided on a plan for his care.

Osteoporosis - We talked to his surgeon Dr. Viere in Dallas, Tx today.  Our main goal at this point is to try and get Brandon's overall osteoporosis level below 2.0. Our integral medicine doctor, the MD Anderson doctor and Dr. Viere all feel that Brandon would benefit from a total of three years on forteo medication.  Normally forteo is only approved for 2 years, but the physicians all believe they can get a third year approved for Brandon based on his severity and the need for surgery.  This is really our one time shot to get Brandon's bones in the best shape possible.  We are also seeing great progress on Brandon's bone density and I will also attribute that to the other things we are doing to build bone including the supplements, the exercise and we will soon be adding physical therapy to help build strength for Brandon's legs/ankles/feet.  Hopefully this will help him recover faster when he will be relying on the legs during recovery.

Scoliosis Surgery - I am feeling very confident in choosing Dr. Viere for the surgery.  Because we are going to try for a third year on forteo, we are planning to do the surgery between 6 to 3 months prior to getting off forteo.  The goal is to have Brandon continue on forteo while recovering.  It will help build bone quicker leading to a faster and more successful surgery.  The surgeon agrees that Brandon is not declining as fast as some x-rays have shown.  But like all the other surgeons believes Brandon will decline as he ages.  Having surgery while Brandon is younger also will allow for a more successful surgery and recovery.  The plan -surgery the summer of 2020.

G-tube - We said goodbye to Mr. Mic-Key (g-tube).  But Brandon is now on his 6th round of antibiotics.  He is absolutely the best patient and much better than I ever would be based on what he has been through the last 4 months with his g-tube infection.  The site looks better.  The surgeon (for the g-tube) said it may take up to a year for it to completely heal.  We are cleaning it everyday, putting medicine on the site (turmeric and probiotic) and he is taking oral antibiotics.  I have handed over the care of the site to the integral medicine doctor because I cant find any other doctors who understand how to treat it.  She has been invaluable in trying to get this healed.  Hopefully the 6th time (medicine) is the charm.

Genetics - The Mayo coordinated with Baylor.  Basically no new genetic issues have been found.  That also means that we really don't have a diagnosis.  Brandon will stay on the Mayo clinic's research project for people who are undiagnosed.  The study will continue to search for a diagnosis until there is a diagnosis. This tells us enough information for the surgery.  Brandon probably has some kind of genetic condition that impacted his osteoporosis.  But they have been unable to identify the condition and therefore it has no impact on whether to proceed with surgery.

I am feeling relieved because we are at the end of major doctor visits needed to make a plan for Brandon's spine.  I am ready for a break from doctors.  Brandon does have two more issues identified in the MRIs, but the conditions are not urgent and we will continue to monitor.  

Through all of this Brandon has remained focused on the things he loves.  Last weekend his band played at the Barn.  All 12 of members.  He just loves saying he is in a band and he loves singing on some Beatles songs.  I am grateful to a very patient Phil Montford for turning time with Brandon into helping Brandon and his friends form a band, learn how to play instruments, learn how to play together and helping the band book gigs (along with Brandon's roommate Nathan).  These are all things that make Brandon happy.  So glad he has this experience.

A little on me.  While Brandon was being taken back to have his double MRIs under anesthesia the nurses were talking to me about what they were going to do during the exam.  But I was feeling pretty awful and just wanted to sit down.  In fact, I felt like I was going to faint. I didn't say anything to anyone.  It has not been the first time in the last year I have had this feeling. This felt like something related to the heart.  I have been wearing my iWatch for months tracking my steps (going for 10,000 a day).  I looked up the heart feature on the iWatch and saw at the time I felt faint that my heart rate was 43.  Too low.  This can happen with someone stressed from having their kid in the hospital.  When I looked closer it looked that the low heart rate has been happening a lot.  I just  happened to have a check up doctor appointment a few weeks ago.  The doctor decided to do an EKG in the office.  Sure enough it shows bradycardia (low heart rate drop).  It may be nothing but they referred me to a heart specialist who also said it might be nothing but better safe than sorry.  So here I go for tests this week. I am telling you this because I see many of my mom friends going through their own health crisis in the last year.  Cancer, heart issues, surgeries, the list goes on.  For moms, nothing can be worse.  We still want and perhaps need to care for our adult children even if our kids are living in their own homes. But worse, it brings to reality that I may not outlive my son.  That is my biggest fear and one I often hear from other families.  I am trying very hard to set up a forever plan for Brandon, but the plan always runs better with help from me.  Always a work in progress and desire for Brandon to live a good life - forever.  More later.

Leah