Well it is hard to believe that more than 2 years have passed since we have posted regular updates. Looking back on the posts from 2008, there were so many changes going on with Christian's care. We were really experiencing daily trials while learning how to handle life with this new method of dialysis + the job loss post-Katrina and the endeavor of self employment.
A lot of water has passed under the bridge in 2009 and 2010 and I can tell you that it has been a tremendous experience of lows and highs. I'll go into more detail with posts to follow.
For Christian's care, there has been some miraculous advancements in the field of study for his disease. The short story is that the wonderful genetics team at the Univ of Iowa have run the protein chain and figured out 3 or 4 'triggers' that cause Atypical HUS. We know now why Christian's body does what it does. Wow.
And almost on divine queue, a new drug emerges, Soliris, that turns out to be a silver bullet for stopping the progression of Atypical HUS in it's tracks! Mega wow.
Soliris has been in clinical trial for about 18 months now and has what I believe is a 100% success rate in halting the bad part of the Atypical HUS progression. It does not stop Christian's body from initiating the progression of trying to fight infection, which is great, but it takes over the role of protecting his body, which happens normally in people without the deficiency of HUS.
In layman's terms I present it this way: It does not stop the team from taking the ball down the court on you (the body's immune system response), but it is like putting Shaq right in front of the goal and he swats away every single attempt of the opponent to slam dunk the ball (killer cells) into the basket (your healthy cells).
Of course, Soliris is the most expensive drug the world has ever seen (more than $400k per year at full dosing, google search Soliris and Forbes magazine for a neat article Forbes Article - World's Most Expensive Drugs) but we'll cross that path when we get there.
So, for 2011 we are working towards transplant + Soliris. And getting our son set up for a long, long run at life. THAT is answered prayer.