Tuesday, August 21, 2012

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.  





14 comments:

  1. Your honesty and candor during this tough time will do wonders to support others. What can we do to support you and Clay?

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  2. My heart is hurting for your whole family. I haven't been able to stop thinking about little Livie. I know you've received another huge hit, but your joy will return. I know you well enough to know that you will not let this take it from you for long. Your girls are also learning from that strength and aren't going to let anything life throws at them keep them down. Our family will continue to pray for Livie because I believe that there is always room for miracles and twists of fate. Please let me know if there's anthing I can do for you, feel free to prank call me at 2am if you need to talk.

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  3. Just beyond words for you and the fam. I wish I could send Ubergeek down to make you laugh with balloon things and bring the girls to play with your girls to give you a break and then we'd sip cold beverages after taking a bit more Lexapro than we might should. ;)
    My heart is with you!!

    BTW, still no word on Bug. Honestly, I'm glad (obviously) we haven't heard anything yet, but with all the drama about me being passed over for not one, but TWO jobs at Bean's school in the past week, I don't think our house could handle anything else.
    But, like you said, the percentages go up for siblings, so my phone could be ringing, too....

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    Replies
    1. We would like that, too. Make mine with an extra shot!

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  4. Gosh, I am so sorry to read this. My heart is breaking for you. It is something we all worry about with our other kids. You have shown such resilience and strength in such a short amount of time. You will get through this. Your feelings are to be expected and we are all hear to listen to you vent and help you get through this. Thinking of your family!

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  5. I read this last night and haven't stopped thinking of your family since. My heart hurts for you and your family. Please please please let me know if there is anything we can do or anything you need. Even if you just want to call someone and cuss and scream at them...

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  6. I am so sorry to hear this. There is a community of families with more than one Type 1 kid that I hope you can reach out to. http://www.stickwithitsugar.com and http://www.ourdiabeticlife.com are my favorites. I know they will be there for you!

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  7. We are here for you! My heart hurts reading this. Please know you are not alone. I absolutely know that your daughter's resiliancy will inspire you daily.

    I wrote this letter for you, and my many friends that have faced, or fear facing another diagnosis. I mean every word. Much love to you!

    http://www.ourdiabeticlife.com/2010/09/open-letter-to-those-who-worry-about.html

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  8. I'm sorry. I feel your pain, fear, frustration, anger but most of all your hope. I pray your family doesn't join the multiples club but if you do there are others of us out here to support you when needed. My Middles will start the oral insulin study here in San Fran soon. Maybe delay onset, better yetsybe avoid onset. HOpe is a wonderful thing.
    Sara already shared my blog address but in this crazy time you may not be up to more reading. I am a mom of 3 kids. My youngest was dxd in 07, my oldest in 09 - my middles is positive for all antibodies.
    Contact me anytime. Hugs!

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  9. I'm so sorry. We're in week one of our six week wait for TrialNet results. The rep from Joslin said someone he works with--who tested positive for the antibodies--didn't manifest (he didn't use that particular word--it was some other term) T1D until she was in her 60's!

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  10. Replies
    1. It's fine - the stories of hope & encouragement are what keep me going. The clinical trial lady at Stanford told me about a girl who was positive for 4 autoantibodies and now she is only positive for one. I can't tell you how encouraging that is - to hear that there's still a lot of room for hope. Praying that your test results are all negative!

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