Prayers, good vibes, well wishes and positive thoughts. Pretty Please

Twenty days since my last post here.  I have started a paper journal documenting all this "Braeden stuff."  I don't want to blog every little thing that happens day to day.  Since May 13, I have written 14 pages in my journal.  This kid definitely keeps me on my toes trying to keep up with everything.  (Thank goodness, he is my favorite full time job.) 

I will give a quick update about the past 3 weeks.  Braeden was on vacation with his dad for two weeks, and got a much needed break from all this "Duke" stuff.  He  was on standby to return back home if CHOP accepted his case.   During vacation, Braeden recorded his two lowest hand strength numbers.  June 11 his strength was 14.9, and on June 16th his numbers went to 13.9.  The cause is likely due to him weaning his steroids and probably all of the beach activity he was not use to doing.

As Duke time goes, the pathology that CHOP requested did not arrive until last Friday the 19th.  Amy, the navigator from CHOP called me and told me that on that very same day she presented his case to the team of doctors.  She said I may get a call from Eva who is the scheduler to try and coordinate appointments sometime this week.  So far, I have not heard from Eva.  Amy said I should expect a call by the end of this week if the team decided to take his case.  We appreciate any prayers, good vibes, well wishes and positive thoughts that this will happen.  

Children's hospital of Atlanta, contacted Dr Fuchs, and suggested Braeden have a spinal tap done, to rule out MS.  Dr. Fuchs thinks this is highly unlikely the cause, and does not want to plan for him to have that test performed.

Monday he finished his second round of steroids.  The Neuro oncologist we saw today does not want to continue the steroids because of the overall side effects from taking them long term.  Even though his hand weakness is not better.  

Yesterday, he had the flexion MRI to rule out the Hirayama disease.  No results yet.

He had Avastin #8 today. 

Braeden reached out to his band director yesterday, and asked if he thought the trombone would be a good fit for him.  For now, he is not going to be able to play the trumpet.  He is unable to press the valves down.  Hopefully, the trombone will be a good fit for him.  Being able to rest the trombone on his shoulder and having to "slide" the trombone rather than press the valves should allow him to continue in the marching band.  (This is so important to us all.  He loves his band family.) His band director emailed him back and is allowing him to switch instruments.  Now Braeden has the fun part of learning a new instrument.  Braeden was joking yesterday that he was going to have to figure out his new spatial awareness with the trombone. He has been a trumpet player since the 6th grade. 

I ask again for all prayers, good vibes, well wishes and positive thoughts.   Mama really wants to take her baby boy (man-child) on a jet plane to Philadelphia.