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Finally some answers....

People have kept asking me for updates, but there wasn't anything to tell.  Well we finally have a little news and I am so excited to share it. Thanks for Linda and David Vitullo who got us in with Dr. Joseph Barrera, the Endocrinologist.  Actually so many of you sent the names of your doctors, but most all the doctors we called were booked out months or weren't taking new patients. 

Background: So months ago Dr. Carroll, our amazing Oncologist, ordered a lot of labs and the only the lab that came back funny in that batch was his FSH. It was crazy high - 400%.  This meant his body was telling the body to make more testosterone but it wasn't working.  Dr. Carroll said that was not his speciality and we should see an Endocrinologist.  I was anxious to get it checked out since we were told that his immunotherapy treatment would have a lot of life-long side effects AND most of his radiation was near his pituitary gland.  Remember that his cancer was called Neuroendocrine carcinoma of the paranasal near his pituitary gland, optic nerve, brain, and nose. 


We tried to get in with Dr. Barrera, Dr. #1, from the beginning, but his nurse was having no part of it.  She was very nice, but kept firm that he was not taking any new patients.  I was anxious to find out why Brace seemed to be getting more tired, couldn't gain weight, and had no endurance.  With absolutely no medical background I felt like it sounded most like a testosterone problem. 

We got an appointment with Dr. Nadeau, Dr. #1, within a week and Brace really liked him.  The doctor felt like his testerone looked OK and it was not below the acceptable range. He did a boat load of tests and the doctor felt like he was having a thyroid problem or adrenal insufficiency.  The second round of labs they gave Brace the cortisol test and ruled that out as the problem. Dr. Nadeau really felt like Brace had hypothyroidism, but we felt like that the thyroid medication he prescribed wasn't really doing anything. 

So while we were with doctor #1, Linda and David Vitullo were telling Dr. Barrera, doctor #2, "You have to meet with Brace."  She even said, "I will stop being your patient so you can see him."  WOW - that's a lot of love right there.  So after me sending doctor #2 all the tests and labs and then Linda and David bugging him, Dr. #2, agreed to see Brace.  

So last Monday August 24th we had our first meeting with Dr. Barrera.  The front office was so nice, but that made it clear that I wasn't going in.  I smiled and told them that I had test results on my phone and I was going.  They kept saying no, but they did let me in. :)

Well Dr. Barrera was young, smart, fit and very funny.  As you can imagine Brace and the doctor went together well.  He was concerned with FSH being so high and looked at the free testosterone and sure enough it was below the acceptable range.  I told the doctor that Brace's testosterone level might be in a normal range for most, but that this was a very macho man and I believed that being at the bottom was not a normal range for him.  He asked me joking if Brace slapped me around when he got angry....  Like I said, they were both irreverent.  LOL.  The great news is that they gave him a testosterone shot and he started to feel it almost instantly.  Unfortunately he took it pretty late in the day so he had trouble sleeping.  We are not really sure if those two things are connected, but it sure seemed to be.  Since Monday he has gone biking three times and even went to Whiting.  He still doesn't have any muscles, but he has his umpf back and he might be able to increase his endurance.  I am so happy for him.   Thank you for your prayers and keeping the faith. God is real and will help us find the answers - especially with friends like you. 
Requests:
1. Pray for our friend Serena who has surgery tomorrow at the Mayo Clinic.  Please pray that it is not cancer and that they can avoid the nerves that control her face. 
2. Pray for Carey Penrod - he still needs miracles.  He does impossible things every day.  We were blessed to finally talk to him last week.  He sounded just like Carey.  What an amazing journey.  We love all the Penrod family. 

P.S. I forgot to tell you he met with Dr. Luu the ENT Cancer Surgeon this Friday and he admitted to Brace that when he saw him at the first appointment he thought he would never see him again. He knew it was fatal. The non-believing doctor said, it is truly a miracle.




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