Thursday, February 16, 2012

Remicade is our new journey.

Dear God,

It's me again.  LOL.  This is how it feels sometimes when me and God have our talks.  I know he has a plan and I trust him and the path he has for me and my family.  Our path is just starting to look like Kansas during crop season.  Nothing but the same thing for miles and miles, never knowing if and when the scenery will change.  There's that part of me that doesn't want the scenery to change, because I know there could always be something worse up ahead.

Cooper took his last Remicade infusions on January 13th.  We then went for a follow up appointment with his Rheumatology doctor.  The appointment went great and the doctor said Cooper was doing really well.  The she said something that really caught me off guard.  She asked me "Have we registered Cooper for the Make a Wish Foundation, yet?"  I was shocked for 2 reasons, one I thought the appointment went really well and Cooper showed much improvement since the last time they saw him, and 2 I did not think his condition was a Make a Wish qualifying condition.  So of course I asked "I thought that was more for people with terminal illness."  To which the doctor replied "Cooper condition is considered incurable and life threatening."  This came as such a shock to me all I could answer was "OK".  So that kind of rocked my foundation a little bit.

Cooper was doing well until a two weeks ago, when Kirby and I noticed he was starting to walk with a limp again, his appetite began waning, and he started scratching at his face and arms leaving these scabs.  These are typical behaviors for when he is starting to have a "flare up".  So we saw his gastrointestinal doctor on February 8th and explained his stomach and bowels have been normal, but these CRMO problems had started showing again.  GI and Rheumatology have several patients together and often confer over them, so she spoke with our other doctors and rather than put Cooper on another medicine, we will just increase the frequency of his Remicade infusions.  So we went yesterday for another infusion.

Side note:  Bless Coopers heart, but every time we have the infusions, it is getting harder and harder for them to find a good vein.  They poked him 3 times yesterday before they finally used an ultrasound machine to help them find a good vein and guide the needle through it.

So we will see how he is doing with the Remicade and have another Rheumatology appointment on March 8th.  Remicade is an overwhelming drug, because although it does help with the inflammation, he is so much more susceptible to the common cold and the flu, and they are much harder on him, because his immune system is not strong enough to fight them off.

So please keep praying for Cooper and that he can stay healthy during the cold and flu season.  Also, pray that the doctors can think of another drug or return back to the Enbrel so Cooper does not have to have so many IV's in his little veins.

Thanks you and God Bless.
The Cannon Family

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