Cellcept here we come!

"Christian" is starting Cellcept tomorrow.  He was on it for a brief time with no problems, but the issue was that the doctor who started him on the treatment left the HTC and we never were able to see the result of a full run of the medication.

We are hoping that this helps his inhibitor come down.  It's currently at 28.  It sure would be nice to start Immune Tolerance. 

When I started to think about all that my Christian has gone through with his inhibitor, it's kind of overwhelming.  He was diagnosed at 11 months and he is now 6 1/2 years old.  The disheartening part is that I have heard of people living with an active inhibitor for years upon years.  You just never know how long it will take to tolerize (or even get to the point where you can try to tolerize).

I am just so grateful that things have been calm for these past couple of months.  It's been quite a respite for the entire family.

More about Cellcept to come.

Argh!

Our trip last week to the Denver HTC was great.  They really do it right over there.  Dr. Manco-Johnson and her team are absolutely top notch.

Yesterday I received the call....inhibitor results.  It's 28.  ARGH!  I had a feeling it was lower....not sure why, but I really thought it was down. 

I know, it's not about the number. but the treatment and most importantly the person being treated.  But still...I wanted that number down so we could begin Immune Tolerance. 

We are getting closer.  The reality is that this inhibitor may be around for quite some time.  "Christian" was diagnosed with his inhibitor when he was 11 months old and he is now 6.  It's been a long, difficult time, but I am grateful that things are going as well as they are right now. 

You never know what the next day will hold....bleeding disorder or not.

HTC this week!

My "Christian" did a super job infusing Friday!  He sat still and did not cry and wiggle :)  He was so proud of himself.

I am looking forward to our trip to the Denver HTC this week.  We'll have a great check up, get his inhibitor level tested and get his brace adjusted. 

I'll be back with more.

Hope you are finding ways to incorporate your bleeding disorder into your life and not let it control you.  Easier said than done....but very possible.

Inhibitor Summit - San Diego 2012

We just returned from the Inhibitor Summit in San Diego, California.  We had a great time :)  We made some new friends, heard a few very useful nuggets of information regarding hemophilia and inhibitors and even had an "ah-ha" moment regarding "Christian's bad ankle.  Arthritis maybe…..?  I have a long list of questions/comments to take to our next HTC visit in a couple of weeks.

"Christian" loved "hotel school" (the childcare program) and "Lance" was able to network with young men and women his own age and talk openly about hemophilia.

It was time well spent (and we even had some time to play).

If your family is affected, or ever has been affected, by an inhibitor, check out the Inhibitor Summits.  They are fantastic events.  I am already looking forward to next summer :)

More to come after our HTC visit....

He Did It!

I hope it wasn't a fluke, but my "Christian" sat completely still during his infusion on Monday!  We had the iPad set up, he was playing, the Emla had been on for an hour and he was completely distracted.  He said, "It didn't hurt!"

I sure hope this means he is getting over his fear of needles.  I am not sure what the next infusion will hold (we access his port once a week and infuse daily), but it looks promising :)