Dumb and Dumber

I've been feeling pretty dumb lately.  Just tired I guess and nothing seems to make sense and we have more questions than answers but then, the phone rings.  It's Seattle.  Bone marrow biopsy results are back.  "We have good news and bad news." the nurse says.  She didn't give me the option of which news I wanted first, as is customary, she scrambled it all up in one big serving of delightful confusion!  

It's not very often you hang up the phone with a several less brain cells than when you cheerfully answered the call! Yes, I was dumber when I said goodbye than when I said hello!

Here is the brief synopsis.  I'm sure I will have more to say when I get the written report from pathology.  The boys did not have stable marrow.  Their cellularity was considerably lower than last year's biopsy.  They have to start having more frequent blood counts done and if those don't improve, then we have to have another biopsy in 6 months!  Stinks.  

Shelbie's marrow however, was stable from last year.  Yippee.  The bad news on Shelbie is that the doctor is even more convinced that Shelbie has Dyskeratosis Congenita because of her abnormally short telomeres and an increase in symptoms but, she doesn't want to test for that quite yet which I totally don't understand but whatever!  They just got consent from our insurance company to go ahead with the B800 Genetic testing.  Don't even ask me what that is...I didn't even know about that testing until the phone call.  FYI- Dyskeratosis Congenita is even more rare than Shwachmans.  Last I heard, there were 59 children in the United States with DC...59!! That's not very many.  Lucky for us, one of the experts in that field is our great doc in Seattle who is also an expert in SDS.  So, that's great. 

Now, here's where my mind blew up.  This time, they tested Samuel's telomeres but not Spencer's.  Guess what?  Sam has normal telomeres!!!  What the heck?  Could that mean that these kids of mine were all born with something different?  Is that even possible?  How could that be, seriously!!  I have never felt so ill equipped to handle a situation as I have this one, in this moment!  Blows my mind. 

The thought crossed my mind that there is no way Spencer is going to be able to have his blood drawn every month while he is on his mission let alone having a bone marrow biopsy in 6 months if that is the way things go.  I don't know a soul in Colorado from a medical standpoint.  I'm sure our local docs would help facilitate that but it adds a freakish dimension to letting him leave.  I just have to put it out of my mind and have faith that it will all work out!  I kind of had a feeling that Spencer would go down hill just before he leaves.  I think God is just testing me to see how much faith I have.  So, that's fine...onward and upward.  

Wednesday was the longest day in all of creation.  Thursday, we left at 5 am to drive to Salt Lake where the kids spent the better part of the day at Primary Children's Medical Center Riverton, with our new Neurologist...It was not fun but more on that later.