631 days

Braeden and I were at Duke today for what was to be his 6th & final IVIG infusion.   Braeden and I had "placed our bets" that we would be there till at least 5pm making it an 7 hour day.  We were wrong. We also wouldn't have guess that the Neuro-oncology team would end up singing Happy Birthday to Braeden a few days early.  They definitely don't need to quit their day jobs, LOL.

After speaking with the team it was decided that Braeden would skip the last infusion.  We all had hoped that the IVIG would have had a positive impact on his hand strength.  Typically, a patient will see results within weeks of the first treatment.  We definitely gave it the old college try and it proved not to be our "miracle".  

So what's next?   

• Appointment with Nephrology in January to try wean and discontinue blood pressure meds.
• Repeat MRI in 3 months. Yesterday's, MRI showed no new changes.
• Because of Braeden's inability to write legibly, he is going to have a  consult with Neuro-Psych. They will do an in depth evaluation of his capabilities and will be able to make the school aware of any new and updated accommodations that he will need. 
• Braeden will learn to navigate his new normal. The child has lost a lot because of this damn spinal cord tumor. (Lord knows, he has already lost a lot from his brain tumor.  He has managed those loses more gracefully than most.)  
• BUT, he is going to be ok! He will NOT lose his smile. He will NOT lose his sense of humor that never fails to make me laugh.
• It's also my hope that this will be the last post of this blog.  I wrote this blog to keep family and friends updated on "everything medical"  Braeden.  (No news is good news or in our case, no new blog is good news.)     
  
• Most importantly, he will ALWAYS have his family and friends that will there for him no matter what.

I use an app to keep up with important dates.  Hard to believe that Braeden has only had 631 short days of his life that have been "Duke Free".

Prayers that the days, months and years going forward will be kind to my sweet HERO.   

#BraedenBrave

#MrUnlucky

Just what the doctor ordered

I  have post it notes everywhere to remind me of things that I need to get done. 

For weeks, I have had a post it note with the word "Blog" on it.   I am finally getting around to blogging tonight.   I will blame our new addition, time flies when you have a new puppy!

I can only describe Braeden's health and symptoms as plateauing. They have not gotten exponentially better, but thankfully they haven't gotten worse.  

• tremors and twitches are the same
• hand weakness on both sides are the same. We had a meeting last week with the school to discuss accommodations he may need next semester.  He is unable to write legibly because of his hand weakness.  This is definitely going to present a problem in some of his upcoming classes.  Currently, he is "pecking" by with his laptop.

On November 16th, I heard from Mayo Clinic, and they decided against taking on his case.  They felt that Duke and CHOP had done  a complete work up and they wouldn't have anything to add to his clinical picture. 

On November 18th, we were at Duke and Braeden had IVIG #5.  One of our doctors at Duke suggested that we "give" Braeden a break before pursuing a 3rd opinion, considering that Mayo declined his case and they are no new symptoms.  

Braeden has had quite the two years of surgeries, appointments, radiation treatments, OT, PT, lab work, MRIs, infusions, steroids for MONTHS and feeling just plain crappy.  

Taking a break may be just what he needs, until we figure out our next steps.

Thank you all for the continued love and prayers. Merry December to you all!

#BraedenBrave

#MrUnlucky

Next up:

Dec 15th-MRI
Dec 16th-IVIG#6

Jan 6th-Appt with nephrology, to hopefully start weaning his BP meds since he is off of the Avastin.