Frank.

The scariest part: could you be plunking quarters into the Diet Coke machine, sense someone waiting behind you, turn around and it's...

Perhaps the scariest part: you could be plunking quarters into the Diet Coke machine; you hear someone behind you breathing with maybe a little emphysemic nose whistle. You turn around and it’s…

TrialNet news, at last.

Jack positive 3 of 5 autoantibodies (not news); OGTT not normal, not abnormal: “indeterminate” (not news); eligible for ACD3 study @Yale (news.)

Joslin doctor says imperative decide quickly, because Jack high risk but not yet “frank diabetes.” September 19th deadline. After pre-9/19 Yale** debut, return New Haven (when?) & live in Ronald McDonald House** for two week drug trial.

Joslin doctor say something like…They used to only run this trial on the recently diagnosed, and it was working, but it wasn’t working well enough, so they have expanded it to include the very high risk group, to catch them before they develop frank diabetes.

Question: possibility delay/prevent Type 1 diabetes outweigh 2 weeks inconvenience, maybe pain, maybe Ronald McDonald nose-breathing down back of neck, travel longest stretch of highway in world at least twice?

Other benefits: camaraderie with families of actual ill people; Yale = near Ikea; science.

Seems like answer obvious: yes. Worth it.

Drawbacks: so inconvenient! Maybe infusion hurts? Maybe nauseated? Maybe rashy? Maybe lymphopenic? Maybe placebo? Missing school, eat in restaurants very hard on carbs and wallet, tedium.

Could also: avoid Yale/ACD3 trial, just visit Joslin every 6 months as planned.

**Confusing but answer is no

Was I accepted into Yale retroactively, and did I basically just win a two week vacation to a fabulous resort?

Wait, but my twelve-year-old son has been accepted to Yale? Answer also no.

A map describing the difficulty of this proposition.

A map describing the difficulty of this proposition. Joslin feels close by. Yale is all the way across a huge state. Apologies to southern Massachusetts for forgetting your lands.

 

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15 responses to “Frank.

  1. I have never personally stayed in a RM House, but some friends recently stayed at one in Kansas City and posted pictures and I did not see any creepy Ronald McDonald’s around. Also, it had a huge kitchen and they had nightly family cooking things that did not require expensive (and carby) restaurant food. Plus, IKEA! I love Ikea. Was just there on Monday and bought some fab lamps for $15!!!

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  2. We stayed in a RM house once – it was awesome. There’s food there for breakfast, lunch and dinner plus someone is always making cookies plus there are people donating food so kitchen is stocked. Room is nice. I loved it. We made a quick vacation out of it and took the kids to visit some amusement parts around the area after we were done with the medical part.

    What was his 2 hour BG?

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  3. I wish I didn’t have “frank diabetes”. This study sounds so cool! I really hope you guys can make it work!! Think of everyone you’d be helping. <—guilt trip

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  4. No insight. Just more hugs. I live in Texas. We hug a lot.

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  5. Kim

    I like to call my diabetes Fred.

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  6. Katy

    I can’t figure out which is crazier: leaving school/work for a whisper of potential help, or considering NOT taking the potential help in order to preserve the work/school schedule.

    ?

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  7. Wait a second – there’s a Shake Shack in Boston?! Let’s go.

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  8. It’s a tough call. You want to do what’s best, but at the same time you want to maintain status quo and not disrupt the routine even further. Plus, like you said — you could end up in the placebo group, which means the whole effort is for naught (except science).

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  9. That pic of Ronald McDonald gave me nightmares last night. I don’t care if he’s a “friendly” clown – they freak me out.

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  10. Ronald McDonald is truly terrifying, as is the Hamburglar (Hey kids! Look, a thief!) BUT maybe you’ll see the Fry Guys. They seemed alright although I heard they changed the name to Fry Kids. I heard, like it’s the word on the street. Anyway, good luck with all of this and hey it’s cool to say you were accepted at Yale right?

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  11. Linda

    I second the placebo concern mentioned by Scott. I’d want a contract ensuring that if my kid got the placebo, he could get the real thing after… Pro: Placebo and Real Thing tested in exact same test tube! You can sell this!

    Like

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