Chinese proverb

"An invisible red thread connects those who are destined to meet, regardless of time, place or circumstances. The thread may stretch or tangle but will never break."
(ancient Chinese proverb)


Monday, July 31, 2017

Rituximab #1

Finally, after weeks of phone calls and paperwork to get insurance approval...
 
Audra was scheduled to get her first infusion of Rituximab today !!
 
Praying that there is a miracle for sweet Audra in that bag.
 
Rituximab will deplete all the B-cells in Audra's immune system.  The B-cells are where the bad antibodies are.  Those nasty antibodies have mistakenly identified her brain as "foreign cells" that need to be attacked and destroyed.  Antibodies are a good and necessary thing when they do the right thing, like attack and destroy bacteria and virus cells.  But sometimes they get confused and attack healthy, normal cells.  Audra's brain is being attacked by those nasty antibodies, and that's where all her awful symptoms come from:
Agitation, aggression, developmental regression, incontinence, hypertension, facial twitching
 
Rituximab is not a quick fix. 
After her infusion today, she will get another one in 2 weeks.  Then we wait.  She can't get anymore Rituximab for 6 months.  So, if it works we pray that it keeps her symptoms controlled until January.  And if it doesn't work, then we pray for another treatment option.  Because living like she has for the past 5 months should not be her only option. 
 
The first step was to get an IV. 
Here she is all hot packed up hoping those little veins of hers will cooperate.
 
A fabulous nurse got the IV in on the first try with just a bit of ginger coaxing.
Then she got pre-medicated with Tylenol and Benedryl to prevent a reaction to the Rituximab.
The Benedryl on top of her morning seizure and blood pressure meds knocked her right out!
 
She slept and slept...
 

 
From about 8am to noon.
 


Then she woke up to snacks.  Girl loves her doritos!
 
The infusion took about 8 hours to complete.  It was a long day.  But one that we had been looking forward to for many weeks. 
She did really well until the last 2 hours.  Which is about when all of her morning meds usually wear off and the behaviors start showing up again.
We are praying so hard that this is the answer to getting our Audra back.
I am anxious to see if we notice a difference any time soon. 
And we'll go back in 2 weeks for infusion #2.


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