The TrialNet Phone Call

I struggled with the decision to enroll Livie in TrialNet

I mean, I already knew that she had an increased risk of getting T1D by the mere fact that she's related to someone who has it. Did I really want to know if she was in an even higher risk category? And if she did test positive, then what?

On the other hand, my work is clinical research. I belive in clinical research. And if participating in TrialNet could help figure out, down the road, how to predict and prevent this stupid disease, then how could we not participate?

And really, WHAT ARE THE STINKIN' ODDS?

So we did.

Mom

Dad

Livie

I didn't hear anything for a while. I kind of forgot about it. And then Monday morning I got the phone call.

I'm negative. Clay's negative.

Livie's positive for 3 out of 4 autoantibodies

They don't have the results on the 5th one yet, but really, does it even matter?

And she's not just positive, she's high for ICA, ICA512 and MIAA.

I guess MIAA's the big one. It automatically qualifes her to take part in an oral insulin study.

I emailed my endo and asked him to give it to me straight: Do I proceed with the A1C and Oral Glucose Tolerance Test thinking IF or WHEN?

And he responded back with a bunch of jargon...blah, blah, I don't know the exact percentages, blah, blah, but having multiple certainly increases your odds, blah, blah. And then, finally:

However, in straight talk, I'd say you should expect that, at some point, Livie will manifest IDDM.

I knew the answer before I even asked it. But I needed someone to just give it to me straight.

So how am I?

Honestly, my heart is breaking. Not for me, but for Livie.

I'm not quite back to where I was when Ella was diagnosed, but I felt the joy that had just returned to me leave a little bit. I don't smile as easily. I'm prone to tears. I don't really want to talk or make merry or laugh or make light conversation.

I know I'll get through this - we'll get through this. Whether she gets it or whether, by some miracle or twist or fate, she never does. We'll get through it. And I'll laugh again and the joy will return again. 

But in the meantime, pass the Lexapro.