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
Friday, March 29, 2019
Thursday, March 21, 2019
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 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
Wednesday, March 13, 2019
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
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
Tuesday, February 12, 2019
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
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
Tuesday, January 29, 2019
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
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
Thursday, January 3, 2019
Bye Bye Mic-key
When Brandon was born he did not have a suck or swallow reflex. For 1 year we fed Brandon through a tube we stuck down his throat. We had therapists coming to the house doing intensive therapy to help Brandon learn how to swallow. Swallowing is pretty darn important. If you have a weak or uncoordinated swallow you are at risk of aspiration pneumonia, scaring of the lungs, respiratory issues and lifelong challenges with food. Our goal in the first year was to try to get Brandon to swallow his own saliva. Pretty basic. But we also wanted Brandon to take in food through the mouth. The goal was to avoid inserting a permanent g-tube for feeding. This is a major struggle for families when making this decision. It feels like you are giving up on your dreams for your child to eat through the mouth just like every other kid. It turns out that sticking a tube down Brandon's throat 8 times a day was not the right decision and if I had to do it all over I would have inserted the g-tube much earlier. By age 1 Brandon weighed 18 pounds and received the diagnosis of "failure to thrive". It was a life changing (at the time) and tough decision for me to make for Brandon. But really there was no other choice and we went forward with placement of the g-tube. In those days 25 years ago, most children had a g-tube placement along with a "fundoplication."
- What is a fundoplication? Fundoplication is a type of surgery to prevent stomach contents from returning to the esophagus (food tube). This is achieved by wrapping the upper portion of the stomach (fundus) around the lower portion of the esophagus. This tightens the lower esophagus so that food and fluid can go down into the stomach but cannot return up to the esophagus to cause symptoms of gastroesophageal reflux disease (GERD).
- Why does my child need a fundoplication? Fundoplication is recommended for children who have complications or persistent symptoms related to GERD that are not improved with appropriate medical treatment. Symptoms or complications of GERD where fundoplication can be considered include inflammation of the esophagus (esophagitis), failure to grow, recurrent pneumonia or asthma related to GERD, anemia, and narrowing of the esophagus (esophageal stricture).
By the time Brandon had this surgery he had multiple pneumonias. I tell you this because having a fundoplication is a major operation and should not be taken lightly. Brandon took two weeks in the ICU to recover from the surgery. After getting the g-tube placed, he began to gain weight and was a different kid from all the nutrition he was receiving. His g-tube placement was around his first birthday. We changed from g-tube to a mic-key within the year. It is much easier to use.
At age, 4 Brandon and I began working on my property here in Dripping Springs on the weekends trying to prepare for building a house. We would pick an area to work and cut trees, move rocks, clean up trash and debris. My favorite place to work on the property was down by a natural swimming hole. Brandon would have a place to lie down or sit up with his toys. We stayed as long as Brandon would allow. One weekend I brought our food down by the swimming hole. I had my water in a bottle with a spout. I was sitting next to Brandon and he grabbed the water bottle and tried to drink. This happened several times. It was scary because he could choke and this was before cell phones. In a previous weekend I was on the other side of the swimming hole with my back to Brandon pulling weeds. I stopped hearing sounds, turned around and he was at the bottom of the swimming hole. I pulled him out and resuscitated him. He was fine and only on the bottom for less than a minute, but I had to take him into the ER to check for aspiration. These incidents made me realize that Brandon really wanted to eat or drink through the mouth. It also made me realize that Brandon is at high risk with any water whether through the mouth or if he is sitting in it and we needed to really work on developing a stronger swallow and how to protect the airway.
Brandon had been doing intensive speech therapy to work on the swallowing issues since birth. I met with his therapists - the school and our private therapist to determine how we can move to the next step and have Brandon begin to eat through the mouth. I realized that no one really wanted to take the risk of moving Brandon from 100% dependent on the g-tube for nutrition to a child who could maintain his weight from eating through the mouth. I talked to Brandon's doctor and asked for his help to find a solution on an inpatient basis where there would be less risk. Brandon spent 1 month in inpatient re-hab. IT WAS MISERABLE. I slept there every night with him in a single bed, worked at the hospital during the day while the therapists spent time trying to work on his skills for swallowing. On week 4 - SUCCESS. Brandon was eating a little pudding through the mouth. FYI the hardest food to swallow is water or liquids because they go down so fast that you cant control the swallow. Everything Brandon put in his mouth was a pudding consistency. We continued building Brandon's swallowing abilities. Around age 8 Brandon was almost eating enough food to sustain his weight and I was thinking in my mind - maybe we can remove the mic-key and Brandon can now eat everything through the mouth. Granted the diet was still limited to pudding like consistency but we had added more foods.
THEN I GOT THE CALL. Brandon's school called. They told me they called 911 and they were on their way. Brandon choked. Was unconscious. EMS beat me there and they pounded on Brandon's chest to revive him. When I arrived he was up and breathing (yea). I took him home and I knew something wasn't right. He had aspirated his food. For 1 year we had one major step backwards and we had to go back to having all nutrition through the g-tube. I had an honest conversation with Brandon's gastroenterologist about Brandon's future and whether he would ever be able to eat 100% through his mouth. He gently told me this was more about quality of life than whether Brandon eats through the mouth or not. Brandon would tell us what he wants to do. If he wants to eat more through the mouth then I would have to be okay with the fact that it is was risky. I could have made the safe decision but I did believe that Brandon should be able to have the food he loves - i.e. cheese and be should able to eat that through the mouth. The GI doctor was right. Since then we have alternated food through the g-tube and food in the mouth. There have been times when Brandon just didn't want to eat any food through the mouth and that was fine. And there were times when he only wanted to eat food through the mouth like everyone else.
By high school Brandon was eating everything through the mouth and medicines through the mic-key. AND THEN THERE WAS H1N1. Brandon lost a lot of weight, was in the hospital for a month and after he recovered he started having uncontrolled seizures. His senior year in high school the school nurse told me that it was too risky to have Brandon eat through the mouth at school. Once again we went for 1 more year eating through the mic-key. We concentrated on getting Brandon seizure free. We finally were able to get the seizures under control and everyone agreed to let Brandon eat through the mouth again.
Brandon is now 26 and hasn't choked and aspirated in many years. My goal was before I remove the mic-key, Brandon must go at least 1 year without using the mic-key. This time we have exceeded that by 1 year. I have been keeping the mic-key in because it would be helpful in the event Brandon has the spine surgery and refuses to eat. That is a possibility, but perhaps not a reason to keep the mic-key when the site surrounding it is infected, has been treated multiple times and Brandon seems to be unable to get rid of the infection.
THE VERDICT IS IN. Finally after 25 years we are removing the mic-key and will not replace it with another one. Brandon is beyond happy and I will be so glad to not have to deal with the mic-key site, training people how to use it, changing the mic-key out (it is considered a surgical procedure but many parents replace the mic-key themselves), worrying about it catching on something and popping out (it has happened), not having the right size, manufacturer supply issues, different types of g-tubes, making sure I have the right connectors, constant DME interaction, explaining why Brandon needs the g-tube and why we need the supplies and formula when he does take some food by the mouth and lastly the fear of getting use to the ease of using the g-tube versus making a meal that Brandon can eat with no hard solid foods or other difficult to swallow foods.
In the last two days I was able to get Brandon in to see his integrative medicine doctor, his gastroenterologist and now his new surgeon for his type of issue. The integrative medicine doctor is giving Brandon turmeric and probiotics in a powder form to help with swelling, pull out the infection as best we can and dry up the site. I will let you know how that works. After 10 days on antibiotics for the 3rd time, Brandon still has the infection. She swabbed the infection so we can decide if there will need to be additional treatment. The surgeon is hoping we can just pull the g-tube out of the site, but it preparing for the possibility there will have to be cleanup from the infection and the site. And if all goes as planned we can say goodbye to Mic-Key forever. It will probably take two weeks for all the preparation. Brandon and I are already saying good-bye to Mic-Key.
Thursday, December 6, 2018
The Mayo - A week of learning
In my last post I told you that we have decided to go to the Mayo Clinic in Rochester Minnesota to get help making a decision on the best treatment for Brandon's scoliosis and osteoporosis. We have two very different recommendations for surgery, both of which are major surgeries for Brandon to repair his scoliosis.
Since my last post the Mayo has been incredibly helpful. They called and gave me options for dates to come to Rochester Minnesota and I was a little shocked that the dates offered were so soon. I was also surprised that we will be in Minnesota for at least 1 week for assessments. The Mayo has called almost daily since the United medical director called and made the referral. The best call was the Friday before we left when a patient relations representative checked to see when we are arriving, what hotel we are staying in and then told us she would meet us in the lobby and take us to our first appointment. I have to say that was a big relief and one less thing I have to deal with - finding the office for the first appointment at 6:45 am in this mass of building called the Mayo Clinic. Two weeks ago I drove all over Austin getting medical records and Cd's with radiology films. I finished sending medical records to the Mayo. But I had another conversation with the Mayo before we left about records I didn't include. They asked for me to bring them. I am not packing another 15 pounds of records so I scanned more documents. There really isn't anything left that is not now in a PDF file. When we got to the Mayo they still asked me to walk around with some of the records in hard copy just to make sure everyone had what they needed. We are a long way to go in this country to have electronic medical records. It makes it much harder for people like me and Brandon trying to have as much info available for better health decisions and better outcomes.
Brandon and I left Sunday evening for the direct flight to Minneapolis. Minneapolis is about 1 1/2 hours from the Mayo which is located in Rochester. Luckily my friend Carrie Coleman just happened to be on the same flight and we booked our seats together. She helped us make it to our shuttle to Rochester. We didn't get to our hotel (Grand Kahler) until 1:00 am and then to bed by 1:30 am. This was good because Brandon was only supposed to get 4 hours of sleep for the EEG they wanted to perform the next morning. That also meant I only had 4 hours of sleep. Rochester just had is first major snow and we came in while it was snowing. Really it hasn't stopped since we have been here and it hasn't been above 32 so the snow is staying. The Grand Kahler has an underground walkway so we don't have to walk out in the cold and all the buildings connect. The hotel is a great location but probably could use a little upgrading. There are new hotels being build all around the Mayo.
Monday we met Brandon's new best friend Christel (Mayo assigned us a patient representative from the UHG Spine Program) in the lobby of our hotel at 6:45 am. The first day was a day of meeting with our lead internal medicine physician who will put an entire plan together for Brandon concerning his spine surgery, scoliosis and genetics. Then Brandon had a bone density test, spine imaging and an EEG. Brandon has developed an infection at his gtube site so there was a little extra time figuring out treatment. It was a long day but ended around 3:00. Brandon and I went to eat and then to bed early.
Brandon getting ready for the EEG and with his new BFF Christel our patient representative
who took us to all the visits.
THE BONES
Tuesday was all about the bones. But first we had blood tests and Brandon was on a strict diet for the blood tests the night before. After the blood tests we had breakfast and then met with the endocrinologist to go over the results of the done density tests. The good news is the highest number for Brandon's bone density went down to -2.8 (the high previously began was -3.7). Still osteoporosis, but much better results. The other good news is the lumbar spine overall score is 1.8. Major progress. The doctor would like Brandon's highest score to be below 2 before having surgery. The other news is that there is no treatment approved for men, especially men below age 50 for bone growth beyond 2 years total. That means once we have completed forteo we will have to move to different stabilizing treatment. The doctor recommends prolia 60 mg subcutaneous injection twice a year after forteo. Prolia will help him gain further bone density slowly over time more than Reclast. If Brandon doesn't have surgery within the period of Brandon using forteo (which is preferred), then surgery cannot be performed until after 6 month from an injection of Prolia. They are also watching new drugs soon to be approved, but have not seen a change in allowing more than 2 years of treatment.
Our second visit was with an integral medicine doctor specializing in eastern medicine. We both really liked her. She wanted to check for drug interactions with some of the medications and supplements Brandon is using. The main recommendation for Brandon is to stop using Vega his supplement we use as a base and change to active probiotics. Here are her recommendations:
I recommend switching to whole foods, whenever possible.
In 2018 the Clean Label Project, a nonprofit organization that examines labeling safety issues, tested 134 protein powders from 52 top-selling brands. They found that virtually all of the 134 products tested contained detectable levels of at least one heavy metal and 55 percent tested positive for BPA. Overall, plant based products fared worse than whey based products. This included the Vega brand, which was ranked poorly and was listed amongst the 5 worst brands. A 2010 study by Consumer Reports of 15 products found arsenic, cadmium, lead and/or mercury in samples of all the 15 powders tested, a few in excess of the maximum USP acceptable intake.
Regarding Multivitamin Supplements - The worst brands and products in the Clean Label study: Garden of Life, Organic Shake & Meal Replacement Chocolate Cacao Raw Organic Meal; Nature’s Best, Isopure Creamy Vanilla Zero Carb; Quest, Chocolate Milkshake Protein Powder;
360Cut, Performance Supplements 360PRO Whey Chocolate Silk Premium Whey Protein; Vega, Sport Plant-Based Vanilla Performance Protein.
Best overall (but still tested positive for contaminants):
Pure Protein Vanilla Cream 100% WheyPerformix Pro Whey Sabor Vanilla Protein with Amino BeadsBodyFortress Super Advanced Vanilla 100% Whey Protein
BioChem Vanilla 100% Whey ProteinPuori PW1 Vanilla Pure Whey Protein
Regarding probiotics: Overall, I highly recommend probiotics obtained form whole foods, such as kefir (Nancy's kefir is one example), pickles, sauerkraut, kimchi, kombucha tea, or miso.
There can be substantial variability between probiotic supplement products based on manufacturing methods, storage, and species-related or strain-related differences. Generally, look for active or live cultures on a label, with colonies in the 10-20 billions. The best supporting evidence, generally speaking, is for Saccharomyces boulardii or Lactobacillus GG. For functional constipation Lactobacillus reuteri DSM 17938 () - 200 million colony-forming units daily for adults can be considered. For irritable bowel syndrome, Bifidobacterium infantis 100 million live bacteria daily can be considered.
I hope that helps anyone on supplements or probiotics.
Brandon in the spine clinic
THE SPINE
Wednesday was all about the spine. We saw the spine surgeon first. Some new information. The surgeon compared spine xrays from 2007, 2014 and to the current xray done Monday. When you look at these comparisons it appears that the 2007 and 2018 xrays are similar (49 and 51%). The 2014 xray may have been in a different position than the others. Basically it is very hard to confirm that Brandon has had significant decline. In addition, the surgeon here believes it is possible Brandon has had a fracture at the upper portion of the spine and probably due to osteoporosis. It is hard to see on the film, but two physicians here believe it is possible. They are recommending that an MRI be performed on the entire spine so we can clearly see if there is a fracture in this area or any other fractures. If there is a fracture Brandon's surgery will need to have a rod placed in Brandon's spine above the fracture and all the way to the pelvis if or when we move forward with surgery. The surgeon here believes that the plan from Dr Viere in Dallas is the better or the two options. He did not agree with the surgeon in Houston's recommendation. Here is what I gathered from the conversations:
- Dr Viere's (the Dallas surgeon) approach for surgery more closely aligns with the Mayo's recommendation. He was the one with the more extensive surgery. However, if Brandon does have a fracture at the upper part of the spine a rod may need to go down almost the entire spine and fused to the pelvis. Even more extensive than the one recommended by Dr Viere.
- They do not believe we should move forward with surgery unless we can confirm that Brandon's scoliosis is declining. Based on various x-rays it is unclear. They recommend following his back using the same machines for x-rays and the same approach to take the x-rays (i.e. hands to the side, hands above, standing straight, etc).
- Surgery is not imminent unless we see a decline (that would include any fractures).
- They recommend that Brandon get an MRI of the spine (also Dr Vere's recommendation) but different from Dr. Viere they want the MRI for the complete spine and determine if there is fracture at the upper part of the spine or any other part of the spine. They are suggesting the MRI be done within 1 month of this appointment. I will ask Dr. Viere to do these in Dallas.
- Brandon has scattered degenerative arthritis throughout the spine and abnormalities in the hips. This appears to be normal for Brandon due to his osteoporosis, but not normal for a healthy young man of his age. I will ask them to continue to monitor the hips.
- Brandon then saw an OT and a physical medicine doctor who recommended Brandon have physical therapy to work with Brandon's lower extremities which will support the spine after surgery. Brandon's legs, feet, etc are spastic and need more flexibility. They have recommended no more than 10 pounds for lifting, fall prevention since it appears Brandon has had multiple fractures, and a few other precautions for him to remember. In addition, they recommend light weight lifting and walking 30 to 40 minutes 3 days a week.
That evening we had to have some better food - gluten free, almond milk etc. So we ventured out thanks to Uber and went to the local People's Food Co-op. Loved it. It is similar to a small Whole Foods. When we left it was snowing again.
Neurology
Thursday was all about neurology and genetics. Brandon was fortunate enough to meet with neurology for this visit and go over his medicines and diagnosis. The neurologist agreed to Brandon's medicine but also made a suggestion of a new medicine to consider in the event we decide to move. In addition, he ordered a new more defined MRI of the brain. We will do this Friday morning before we leave here.
Genetics
This was the longest appointment because we have so many tests already done for review. I think it is the consensus from all the doctors that Brandon has an underlying genetic condition impacting the bones and vitamin D absorption. But none of the obvious ones identified in his chart can explain his condition. They are running 1 additional genetic test, but they are also going to contact Baylor and download Brandon's complete genome report. In addition, Brandon signed up for a research study for patients like Brandon who have not found a diagnosis through any other method (genetic, metabolic, etc). The study is looking for more ways to diagnose patients through whole genome sequencing. They will continue to work on Brandon's case until they find a diagnosis. This is paid through the Mayo research funding and could last for years.
Ready to Come Home and Brandon's Birthday
Brandon is a little homesick and ready to come home, but the only thing keeping him from really complaining loudly is that we have scheduled to meet with another Beatles fan we connected with who has met 3 of the Beatles. He is looking forward to that tomorrow night in Minneapolis. We come back to Texas on Saturday staying with Carrie tomorrow night. Then Brandon turns 26 on Sunday. Happy Birthday Buddy.
This says it all for the week.
The Mayo
Lastly, I cant thank the Mayo team here enough for all the help they have provided this week. Squeezing appointments in for the week, meeting us and taking us to each appointment, finding the right physicians to meet with during our time here so we can make better decisions. Everyone has been very helpful, know their stuff, made sure we don't have any holdups and going that extra mile. I feel like we have a good plan. I am much less stressed than I was before I came. I also feel like I have a team here to help in case we get stuck again. All round great customer experience.
It was a memorable this week as the nation celebrates the life of George Bush. George Bush and Barbara Bush were major supporters of the Mayo Clinic. In fact, Barbara Bush was on their board. Many great stories about them this week here and a small memorial on one of the floors where Brandon had many visits. This added to the fact that George Bush signed the bill allowing people with disabilities equal rights so people with disabilities could have the same education and work at jobs equal to their peers. He was a man who devoted his life to public service and Brandon has benefited from his efforts.
That is all for now. Thanks everyone for supporting us as we stayed here at the Mayo. Looking forward to being back in warm Texas.
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