Wednesday, July 29, 2009
Tuesday, July 28, 2009
Monday, July 27, 2009
- begin with scratch testing to heated and unheated milk
- 4 servings of a muffin (contains dairy), wait 15 minutes between servings, check for symptoms
- 2 hours of observation
- 4 servings of pizza (cheese topping - it's Amy's Kitchen pizza!!), wait 15 minutes between servings, check for symptoms
- 2-3 hours of observation
- 5 servings of rice pudding (whole milk, milk powder), wait 15 minutes between servings, check for symptoms
- 2 hours of observation
- ??? servings of boiled milk
- 2-3 hours of observation
6.50 am: the Eldest is dressed, and patting my shoulder. I open my eyes, smile at him, and invite him in. He curls up under the sheet with me, my arm around him, his fingers kneading the skin over my knuckles. He grins at me briefly, his eyebrows arching like his grandmother’s, before settling back into comfort-mode.
I can hear the quiet sucking sound of his thumb in his mouth. Not holding that line today.
7.12 am: the Man and the Eldest slip out the door. Only one parent can go with the Eldest today, and he’s chosen his father. Yesterday, I was jealous. Right now, I’m still half-asleep, and I hug the kid goodbye, before going upstairs to curl up with his brother.
7.59 am: We are here. Where’s the coffee?
The Man will be sending me text messages throughout the day, and this is the first. I can imagine it: the two of them walking into the building, the Eldest holding his dad's hand, thumb firmly in his mouth. The Man, moving briskly, pleased to be on time and the Eldest clinging a bit, but ready to be delighted by this new space.
8.26 am: Weighing in!
I’m grinning now – this is old hat, and I wonder if the Eldest is asking to see his weight translated into kilos, his height into centimeters. He likes the different measurements, I know.
8.40 am: The room is good. It has a tray for pokemon and they are bringing in a DVD player.
The Toddles and I nod approval. Space for cards means also space for paper and pencils, and later, the jar of many-sided dice that I tossed into the bag. Work space is good. DVDs are good, the Toddles informs me. Can we watch one?
9.11 am: the Man calls. The clinic wants to take photos of the Eldest’s eczema. Are we okay with that? We discuss privacy issues a bit, and he says goodbye. I'm a little giddy with relief: this is the first little hurdle passed, since the clinic can't use kids whose eczema is flaring too much, or who show other signs of allergic reaction, which might muddy the data. The Eldest has had to be off his daily antihistamines for the past 7-10 days. Naturally, he's been scratching. Naturally, I worried that this would disqualify him. This is exciting, I thought. It's almost fun! I decide to laugh at myself for being so wound up in this trial, and to loosen up.
I round up the Toddles and introduce him to the unexpected lack of diaper situation, and we begin negotiations.
9.14 am: The Eldest instructs his father to tell us that, The skin pricks really hurt and I want to scratch. But, adds the Man, he’s not scratching….
We cheer, and the Toddles asks where the skin prickles are. I type this in dutifully, thinking about the ways we’re linking our family today. Tell him, the Toddles says, that I dripped applesauce on my pants and that I’m wearing pull-ups!
9.25 am: I think we left the prickles in the fridge J, says the Man. The Toddles and I grin at each other. They’re on his right forearm, the Man clarifies. Ah, says the Toddles. Can I have a pickle? We are, after all, in the land of Guss. Why not?
9.32 am: finished skin test, the Man writes. Boiled milk smudge a smidge smaller than unboiled. Both pretty small….
I can feel hope pressing into my chest, and I know the Man is trying not to let the possibilities pull his muscles taut, to stay relaxed for the kid. Look! says the Toddles, I have a jaywalking hockey stick!
He does, too.
10.42 am: Unable to place IV so far, the Man writes. Calling in IV team…
I'm hauling in extra air, inflating my chest to roar when I sit on myself, fighting an urge to stomp downtown and ask why on earth, are they having trouble placing an IV on a kid with fantastic veins? I could put that IV in. Who is screwing up?
I am, of course, much less angry about the kid getting stuck than I am worried. I’m tallying the kid’s stresses, and worry that this will tip his scales badly. If he’s scared or upset, I know, any mild allergic symptoms will loom larger. And then what? And then, I tell myself, I shut up. Because I know full well that I'm letting every wee scrap of information magnify itself, simply because I'm not there. I have no context.
Proportion. I need proportion. I close my eyes, feeling my breath fill me and nearly fall asleep.
11.24 am: The Man calls, with the Eldest on speakerphone. The Eldest is in tears. I don't want them to make my body lose the dairy allergy. I don't want to! Oh. So much for proportion. I curl up on the couch, and tell the Eldest the story of his inhibitors. Nobody can make your body do anything it doesn't want to do, I told him, ruefully. If they could, I'd have talked your body out of that sesame allergy, ages ago... The Eldest is quiet, and then wails again. I wonder if the Man sees what I see: that of the three of us, the Eldest is the only one admitting the sharpness and insidiousness of his fears.
This is his body, as he knows it. And it has defined his world - our world - as we know it. How much change are we prepared for? How little? We can embrace what comes, but the waiting cuts deep.
11.30 am: The Man calls back, having tried a phone-free therapeutic cuddle. My client wishes to offer a compromise, he suggests. He'll eat this bit of muffin, watch STOMP on the DVD player, and have some lunch. And then we'll see. Ah. Trigger identified: this was the Rubicon moment, from the kid's perspective, the moment of launch. I laugh, and agree that perhaps this is a good idea, and warn the kidlet not to enjoy the dairy deliciousness too much. I am, after all, his mother, and I have standards. It's an old joke, and it works well here, letting the Eldest rebel against his stern, anti-fun mom.
Deliciousness, I point out, comes really close to having fun. And there had better not be any of that in the lunch they're bringing! The Man grins into the phone, knowing full well that I'd discussed french fries with the staff, and the Eldest laughs, reminding me. French fries? I shriek in my best Evil Queen voice. FRENCH fries???!!
11.36 am: More muffins eaten (2nd of 4 doses). DVD on. Kid relaxed and healthy.
Inhale, exhale. Time to think about my own lunch, I suppose. And the Toddles', who is at the swimming pool with the Grandmere. I head off to the kitchen, ready to recapture some of the day's ordinariness.
12 pm: Third dose eaten.
I drop my knife, dump the tomatoes into the bowl (sunflower sprouts, olives, lettuce, basil, scallions - must add avocado, and peaches?) and proceed to text furiously, telling the Eldest that I'm proud of him for doing the hard thing, for trying, and telling the Man to be my proxy: hug the kid, high five him, and let him curl up in the lee of a parental lap, knowing himself to be brave, and feeling himself to be safe.
12.15pm: muffin finished
I dance around the room, grabbing the Toddles and Grandmere as they walk in the door. We're so close now, so close to being able to have a tolerizing regimen. Two hours to wait, but the next 30 minutes will tell. The Eldest has done the hard part, and now he can relax with the DVD player and wait. For french fries, he reminds me, and I grin.
Finish the muffin (a.k.a., Round One) without incident, and you can try tolerizing the kid, even if he doesn't make it through Round Two (pizza). Ambivalent about the pizza over here, the Man tells me. But looking forward to the fries...
1.45 pm: I'm clearly not good at waiting. The Man's not answering his phone, so I find an excuse to text them. What kind of data, I wrote, do you think the scientists are collecting today? There was a surprisingly short pause. Blood data, the Eldest wrote. Successful eating data. Dinosaur data. I checked 'maintain sense of humor' off the Eldest's status list, and mentally hugged my Man. Wonderful dad, he. Feelings data? I asked. Exactly right! they said. Nose data?
Suddenly, I remembered that I've been punchy on adrenaline for most of the day, and felt my muscles tingle. Nose data? I wrote, aiming for casual. Is the nose data-worthy? The Eldest barely blinked. Daddy's nose is more data worthy than mine, he wrote.
I grinned, he sent happy electrons, and next to me, the Toddles decided that the world was too interesting to waste on a nap.
2.10pm: The Toddles was falling asleep, but buzz! went the phone. Pizza: "great, awesome, no other words that can explain it," said the message. Dad suggested 'fastrudizzliastic." I bounced out of bed, and went to find the Grandmere. Could she settle the Toddles down, while I wiggle a bit? I promised to eat lunch, and we had a deal.
2.24 pm: second dose, consumed!
My world is shifting around me. The kid is not supposed to be able to do this. He's not supposed to be able to touch the stuff. We've been told, over and over. Is the pizza still yummy? I asked. The Man nodded, electronically. Fuck me, I blurted, astonished. Hit send. Blushed. Maybe later? he suggested, and I laughed. This changes - oh, so much, you know, I wrote. And didn't need the Man to reply. He knew.
2.54 pm: working on dose number three!
But now I'm diverted, focusing on the Toddles, who has suddenly decided to drop his anti-toilet platform, and consider the possibilities of toilet use. Tell them that I'm wearing pull-ups! he instructs me, and then settles himself on the toilet, where he'll be silent, focussed (and effective). I do, but the Man cannot pause to consider this, because the kid's on TV! He's what - wait - what? The hospital has a call-in show for the kids there, at 3pm. He's on TV. Okay, I think, that's it. I slap the ground, and it's solid, cool tile. I look up - yes, up is up, down is down, cardinal directions: check. So what the? He just explained that TV only has three colors, the Man informs me. Red, blue and green.
Just then, the Toddles explains that he's finished his poop, hops down and begins cleaning himself up with a surprising degree of competence. My eyes narrow, suspiciously. We have moved beyond the unlikely, folks. Beyond improbable.
3.18 pm: pizza done. 2 hours of observation to go. Oh, and the kid volunteered the color thing on his own.
And the Toddles is dry, having used the toilet again. His idea, his execution. I'm borne along on the current of this day, my feet trailing behind me somewhere. So I ask, is the pizza finger-lickin' good? The Man's electrons are severe: he has a fork.
of course he does. Bring it home when you come, honey, and stick it in me: I'm done.
I am, as it happens, a great fan and a great skeptic where clinical trials are concerned.
I want clinical trials to happen, and I want lots and lots of people to sign up for them, so that we have mounds of data – swamps of the stuff, stuffed with mainstream, riddled with outliers galore - all the data we'd need to warn doctors of the ROUSes that may lurk, should a drug or treatment come to market.
Swamps, morasses, dancing mountain ranges of data. Not that I have any intention of contributing to it, myself. Or jumping on the results when they show up as headlines. Back when gene therapy was the Great New Hope, we were often asked, wouldn't it be wonderful, if they come up with a way to cure hemophilia?
Sure, I’d say. About oh, twenty or so years later. Once other people have field-tested it. A lot.
Because bodies, as we know well, are weird. And the dancing mountain ranges may not contain that wierdness, o Horatio. As much as we may know about them, bodies can nonetheless be unpredictable, unreliable, or just plain quirky. Imperfect bodies are especially good at this, and when the Imperfects quirk, their doctors have to admit just how much medicine relies on strong, date-fed guesswork, or on the lessons of experience – which are not always backed up by understanding. This works, although we don’t really know why, we are told, and I respect that. I often don't know why, either.*
But a trial and quirk and ‘don’t really know why?’ Too much unpredictability in one room.
Count us out.
Except sometimes, count us in.
The Eldest’s allergy whizzbangers are conducting some of the trials on these new, daring ideas about tolerizing children with allergies. And tomorrow, we’ll join the ranks of hopeful families, to see if the Eldest might be able to be tolerized to dairy. A bit. Not cured, mind you – just more tolerant. Immunologically open-minded, you might say.
I'm sitting on my inner cynic here, but I think it's worth it. Unlike those gene therapy trials, this is a risk we can measure:
- the risk of exposing him to an allergen, and having his offended immune system crank the allergy up a few notches. Stasis vs manufactured change? Or, stasis despite our attempts to create change?
- The risk of a reaction – and he will have one, given the structure of the trial. He knows this, but chose to sign up regardless. It's okay to be nervous, I told him tonight. He nodded, looking down. Breathed for a moment. And then looked up. I know. I'm glad he knows, but there's a frozen knot in my stomach. Because my job is to protect him, and maybe at this moment, protecting him means also putting him in harm's way. It's true on the playground, when he climbs to the top of the rope webbing. But is it true here? I don't know. So, risk of a reaction, risk of responsibility, risk of - well,
- The risk of the psychological impact of that reaction, because he’s not had a reaction in long enough that this will shake him.
- The risk of hope.
So, the trial. Where they will feed the Eldest dairy until he reacts. If he reacts too early in the trial, then we're out. But if he makes it far enough before reacting, he'll eat measured amounts of dairy - only - daily, for a measured amount of time. The reaction is a given, because he's still allergic to the stuff. Think about it: he's allergic. We're feeding it to him anyway. And the good news would be getting to feed it to him daily. Maybe, possibly, perhaps this might help his body adjust to the allergen over time. Maybe.***
How the hell could we want to do this?
Dairy is a big pain in our Imperfect ass: it lacks the PR of peanuts, and frankly, it’s an easy protein that folks find hard to replace in school lunches. And birthday celebrations. Skip the eggs? No problem. But the pizza-n-icecream? Well, you’ve got me there. A little more PR, and folks would understand that dairy really can be scary, just like the Peanut ‘o’ Doom, but hey, if we can’t fix the PR, could we maybe tinker with the kid?
Ask the question, of course, and you then have to wait for the reply. Stomach clenched, waiting for the inevitable reaction and please don’t let it be too bad because I’m why he’s here, and damnit, cold fist in the stomach, clogging harsh lump in the throat, swallowing past it and – oh, fuck me– hoping.
*see here, especially the last two 'grafs for more on this.
**at the initial visit to this clinic, both boys were diagnosed with environmental allergies. Exposure to an allergen can raise the immune system from Defcon 3 to 4, 5, or 17. And drag the lab results upwards, as the immune defenses crank into gear. If the kids are exposed to their allergen, say, like a dust mite's poop, for oh, 8-10 hours at a time, that'll wreak merry havoc with their immune systems. Get rid of the allergen, and the body will settle back to normal. Or whatever it thinks normal oughter be. Personally, I'm not knocking it.
*** Tolerizing is a protocol known pretty well to folks in the bleeding disorder community, especially those in the lightning-struck, punch-drunk inhibitor circles. Those lucky folks are people who typically don't make any of a certain clotting protein naturally. As a result, their bodies are making antibodies to their clotting meds, in an honest but oooh, cripes attempt to protect them against a foreign protein. The standard protocol is to
- hope that the poor guy's antibody, or inhibitor levels are low enough so that you can
- do 12-18 months of daily infusions of massive, expensive amounts of clotting protein. While
- hoping that the guy doesn't bleed much, because the clotting protein is going to get infused into him, but not work, thanks to the antibodies. Which means that you'll need lots of infusions of another, even more expensive clotting med - oh, every 2-3 hours while a bleed is going. And that stuff won't work as well, because it's so short-lived. Ow. Oh, and did I mention that
- success does not mean that the antibody is gone. As the Eldest proved. He got mostly over his inhibitor, after 18 months of some pretty intense needle-work. Mostly. But, keeping an eye on this post's original topic, we learned then that we're very willing to measure success by whether something gets easier to live with. Or, just plain better.
Monday, July 20, 2009
And, lest you think that the Eldest is the only one who can nerve himself to stick a needle in his arm, I should note here: he's not. With a box of my very own factor in the fridge, I had to admit to the pharmacist that yes, my infusion plan included waiting for the seven year old to come home from school.
(like hell. I was scared poopless.)