Hi all,
I thought it was time that I stop back in and give an update on Annie since we're reaching our 6 month anniversary after being diagnosed. I thought I would share an update and possibly pass on a few things that we've learned since we began this journey.
Our beginning
www.pdsa.org/forum-sp-534/5-newly-diagnosed-a-frequently-asked-questions/27975-from-maui-to-the-hospital.html Six Months later:
We've been there and done that. No seriously this past 6 months has been chaos, however in hindsight the chaos what not necessarily caused by the ITP it was just life doing what it does and rolling forward. We've been down the road with most all of the "standard" therapy courses except a Spleenectomy which her doctor seems to favor but we are against so that one is out for now. We've gone thru Platelet Transfusions, IVIG, WinRho, Prednisone/ Prednisone taper, we were on the road to a Steroid Pulse, but some crazy stuff delayed that
www.krem.com/news/One-shot-at-Spokane-cancer-treatment-center--266245081.html On that day, two hours later, we'd have been in that room. My wife knew her and had talked with her several times per week as she was the one who had been doing the numerous blood draws. It was a horrible thing all the way around.
It was shortly after that incident that Annie came down with the early stages of Pneumonia which thankfully her doctor took very seriously and she was admitted for a few days to battle that. We fought with our insurance company to get authorization for Promacta that looked like it was going to take use into the court system to force their hand. Thankfully they saw the error in their ways and gave us authorization. Prior to starting Promacta if Annie had 11K we considered it a great day as double digit results had been rare to this point. Annie started the Promacta 4 weeks ago and things started slowly improving 8k, 21k, 31k 41k...then the latest was 21k :huh: from what I have been reading it seems that some drops w/ Promacta are to be had.
So that's the readers digest version of our last six months, it's been a ride so far but we just keep on going and roll with the punches.
What we've come to realize since the start:
You just have to roll with it. For us there is no "quick fix" though we wish there had been. ITP is not Annie and Annie is not ITP, it's just something we have to deal with, we force ourselves to not let the disease define us. Sure it's scary at first but we are learning to deal with it and all that it brings. Our boys are still growing and becoming young men and doing all the stupid things that teenage boys do. As for Annie and I, well we are already planning our return to Maui as a family because ITP wont stop us.
Sincerely
Jason
