OK, TrialNet. Why information surprise Bigfoot every time?
Only information not surprise would be We are so sorry. We had your results all wrong. You and your son are absolutely fine.
Mental sift through information swirls while driving not wise. Pull over before cause accident. Look, it windblown farm stand; farmer stand up so hopeful make sale. Bigfoot just sit. Sit. think. Farmer stand at attention. Sit, think. Then buy million vegetables from guilt. Ratatouille.
Yesterday, speak w. TrialNet anti-CD3 study director. Thinks Jack must come soon, because if wait, will already have diabetes + not be eligible for study. That too dramatic this brain.
This is not an actual transcript of the conversation, but a re-enactment, pieced together from my notes, which were taken on many small slips of paper with a broad-point Sharpie and without pagination.
BIGFOOT: Wait, so you mean you think he will definitely have diabetes, or you think it is likely?
YALE: Well, he’s definitely in the highest risk category, because of his multiple auto-antibodies and abnormal OGTT result. I mean, usually we describe high risk as a 75% chance within five years, but with your son…
BFOOT: Higher? Lower?
YALE: It’s really much higher. Because he already has that abnormal OGTT, and the 75 in 5 figure is more just for kids with multiple autoantbodies who haven’t even had an abnormal OGTT screen yet. That’s why we don’t want to wait too long. As it is, about a third of the high risk participants identified for this study have developed diabetes by the time they come for the initial screening
BFOOT: But maybe he will be more like me
YALE: Yeah, It could be more like a LADA situation, but from what I’ve seen, it happens faster than that with kids, and with your son it’s really just a matter of time**
**this chilling phrase actually used. Pretty sure also said he’s in the group of people we know will get diabetes, but maybe just include that sentence in phone call notes for randoms.
Ineligibility bad not only for study, but also for Jack, obvsly. (Bc miss opportunity block autoantibodies from more wreck pancreas.) Deep breath.
Today speak w. Study Coordinator about nuts and bolts and schedules and forms.
Mention kind of was hoping we could come in the summertime, not miss school. That too far off. Offer up Well, in February we have one week off, that way, he’d only miss one week; how about February? No, too far future. Should be this fall.
BIGFOOT: I’m just trying to wrap my head around, what I don’t understand is, who are the people who can drop everything suddenly for two weeks? I mean, how do they not have to go to work?
YALE2: Most jobs offer family medical leave of some kind, and they utilize that
BFOOT: I know we could use that if one of our kids needed treatment for…an illness
YALE2: Uh huh
BF: And so I guess this is like that? Like we should think of ourselves as having an actual sick child? I just don’t think of him as sick. I mean I don’t think of us as a family with a sick child; it’s not like he has…
YALE2: I know it’s hard
This fall? Fall = RIGHT NOW PRETTY MUCH. But Bigfoot anatomy class; automatic F if miss two cat dissection days. Then deep breath, realize of course ok postpone school; probably can even apply tuition to same class next semester, and Bigfoot already super-old for community college, no diff add on few more months. Middle school teachers can send Jack’s work online; already so much middle school online anyway. Also Yale, science experiment, very education. Like elaborate field trip. Maybe Ira Glass offer come along, increase literary factor. Okay. All set—then remember Bubs.
Who can care for Bubs in morning/after school? Maybe bring Bubs Yale too? Two weeks so boring! Too tedious! How keep boys happy hotel room/medical zone of rather uninteresting city/every day Ikea? Try think what would a normal family do with two children requiring medical treatment in distinct locations?
Aha! JOE! Yale2 mention Family and Medical Leave Act, dawn on Bigfoot use this for Joe paternity leave @babytimes. Call Joe. Yes. Uh-huh. Important. Medical treatment. Yes. Ok. Joe’s school Principal agree. Gotta do whatcha gotta do. So now think:
End of September: visit Yale TrialNet for initial screening (repeat OGTT, also blood tests for health, also maybe repeat Ab tests). If no T1D yet: begin 2 consecutive weeks infusions sometime October, Joe & Jack live New Haven; Bigfoot & Bubs stay home, maybe rendezvous New Haven weekends. So sorry for this vile and untimely thought: I have always wanted to go to Frank Pepe.
Next skim consent form. HOLY SHIT. Skin peels off, shaking, fever, nauseated. And if skin not peeling off, probably placebo, and whole thing waste of time. But not waste of time because science. Valuable for science. Seriously willing torture child for science? But torture part only kick in if not placebo. In which case maybe stop diabetes. Round and round and round it goes.
Glad not need concern this, perhaps worst, bit. Imagine this slab o’heartache: Parents signing a consent form for a daughter over the age of 13 years will not be told of the results of the pregnancy test. Only your daughter will be told the results. We will, of course, counsel your daughter to seek appropriate healthcare and the support of an adult if she were found to be pregnant. A positive pregnancy test means that your daughter cannot participate in this study. Because she will be asked to leave the study, you may find out that she is pregnant. If you or your daughter is uncomfortable with pregnancy testing, then we would recommend that she not participate. If she is under 13, you will be told and we will be required to report this to the Department of Children and Families (DCF).
Meanwhile, try explain Jack some risks, benefits. Jack sad. Interested study for stop diabetes, but Bigfoot not describe skin falling off yet. Just wants Pastiche chocolate cake and The Stack** before shit hits fan.
**three separate beef, Chourico, and thick cut Bacon piled tall with melted cheddar, American, and jalapeno cheeses layered between toast, lettuce, tomato, onion jam, mayo and mustard.