1.09.2014. The day that it was made official.

Yesterday Kyin and Max had an appointment with Dr. Kurt at DeVos.  I love her and I'm so happy that she is Kyin's hematologist.  It was made official. Kyin does have Congenital TTP.  They ran his labs, along with Max's.  Max's came back great. Platelets and hemoglobin were both where they should be.  She sent out a sample for the test to determine if Max also has TTP.  Now, Kyin's labs were less than desirable.  Pretty much everything was lower yesterday than it was on Friday.  Hemoglobin, platelets, whole RBCs..everything.  So the decision was made to give Kyin his first fresh frozen plasma infusion.  Because his platelets were back down to 20,000 they also gave him a platelet infusion.  He has to have labs drawn on Tuesday, and he goes back to DeVos for more plasma in 2 weeks. 

Game Plan:
Kyin will be monitored via his weekly blood draws, Dr. Kurt has requested to be paged when his results are in to DeVos.  That way she is fully monitoring the situation.  He will be going back in 2 weeks for more plasma.  She is hoping that will kick him into remission.  They'll gage when he goes into remission by his platelets being his and his LDH being low, on it's own.  When that happens he'll be in remission.  Once in remission she's going to administer plasma once a month, and see if that will keep him in remission.  There is a more invasive procedure called Plasma Exchange that involves a central line being place and it would work almost like dialysis, as the blood comes out, gets filtered (plasma out) and then is put back in with new plasma.  We would like to avoid that treatment if at all possible.  I would rather him not have a central line, and I'm sure he wouldn't like to have one either.  Once in remission, he can live his life like a normal 7 year old boy.

One of the first questions I get asked when I talk to people about what Kyin has been diagnosed with is "how are you handling this?" or "how are you?".  I'm okay.  Kyin's okay.  Obviously this isn't something Jerrad and I would ever wish for.  But it's the hand we were dealt.  I am, however, grateful that he has been diagnosed with something treatable.  I'm grateful that it was caught early and he didn't sustain any neurological or kidney damage.  I joined a TTP group on facebook, and to read their stories...it's scary.  Most of these people were diagnosed with the acquired form.  Their prognosis and sometimes treatment is a little different than Congenital TTP.  But, diagnosis is still the same.  Some of these people it took them days, if not weeks for a doctor to take them seriously and to dig deeper.  Because this is such a rare diagnosis many people go in a flair up too long and sustain more permanent damage.  The key to this disorder is to obtain treatment ASAP for a flair up.  This diagnosis is deadly, if not treated.  Even when treated there still is a 20% mortality rate.  Now, that is not something I focus on or dwell over.  Kyin will live his life as much like a normal kid as possible. 
He doesn't know the extent of what's going on, and I don't plan on telling him until he can actually comprehend it.  For now, he knows that he's sick and that he has to go in frequently and get pokes.  He absolutely hates getting poked, but I tell him it's the only way to make him better.

Until next week...