Say what?

I got an interesting phone call the other day, that didn't seem like it was going to be interesting at all. It seemed like it was going to be a huge pain in my ass, to be honest.

We've been sending back what's left of our homebound medical equipment over the past few weeks (months?) because Ike-a-saurus doesn't need it anymore, and because keeping it here for emergencies is something our new health insurance has deemed a Very Expensive And Unnecessary Idea. So… fine. It was most difficult for me to relinquish the pulse ox, but I did it. And I didn't even cry (well, until later).

So, anyway, there have been a lot of annoying phone calls lately from various service providers and doctors offices and agencies, etc. while we sort out ways to cancel all of the lingering orders. (Formula, nursing, etc.) The phone has been ringing a lot, and while I'm thrilled it's ringing because we're getting rid of things, it's still a hassle.

A couple of days ago, the phone rang for the millionth time and the Caller ID said Cincinnati Children's and I was all, "WTF. What do they have to do with anything?" Then I wondered if maybe one of the lingering orders had come from them and I just didn't know. Like, maybe the Cincy docs had set everything up for the monthly formula deliveries.

But lo, it had nothing to do with any of this. The person on the other end was a doctor in charge of a medical study we'd signed up for years ago. Because Cincinnati Children's is a teaching hospital there are always a ton of studies and things going on. Some of them just ask for your consent to use samples taken during biopsies, and that sort of thing, so that they can study… whatever it is that they study. The samples are anonymous, it's all for a good cause, you don't have to go back for any reason, it seemed selfish to say no when they asked.

So this lady is asking if I remember giving consent for a team to study some cell biopsies Ike-a-saurus had taken during one of his many scopes. I didn't remember the specifics but was like, "Yeah, yeah, totally. I remember. How did you get this number? Isn't everything supposed to be anonymous?"

She kind of hemmed and hawed and said soemthing about there being a clause where a family can be notified in case of emergent circumstances. This is, obviously, when I started to panic. What did they find? Why were we being notified years later? sweat, sweat, sweat, panic, panic, panic.

The doctor calmed me down and said the only reason why their findings are of an emergent nature is because of how rare they are. She asked all these questions about Ike's illnesses, and about scars from his surgeries. Has he made remarkable comebacks from grave diagnoses? Have we noticed his surgical scars are barely visible? Have we noticed that when he skins his knees he bleeds less than other children? Has he ever broken a bone? Have we ever thought he might have broken a bone, but then he was fine the next day? Etc.

Lots of disturbing questions.

Finally, she got to the point. Her team has run all of these preliminary tests and it appears that Ike has something called Overactive Cellular Renewal Syndrome, also known as Extreme Manifesting Ecogenetic Neocytolysis. The team thinks maybe all of the kids in our family could have it. It's something that happens to the genetic code when the code has been altered by some kind of environmental event.

What kind of "event"? I asked, because we haven't taken any trips to Chernobyl. She said that what her team is studying is a kind of leap ahead in evolution – changes in body processes that are genetically related, but also possibly environmentally related as well. And this "syndrome" that they think Ike has is a kind of ability to heal yourself from the inside out.

I ask the next obvious question: "Like Wolverine, you mean? But without the adamantium and the animal stuff?" There was a long pause and then she said, yes.

"So, you're telling me my youngest son – potentially all of my kids are real life X-Men?"

"In a sense, yes."


"I know."

And so we chatted some more and she offered to fly the family to Cincy so that all of the kids can undergo non-invasive testing. (DNA samples and things.) I hung up, immediately called my husband and we talked for a long time about all of this. I mean, this would explain a lot about Ike and his history. And it would be cool to know what's going on with the other two kiddos. It would also be cool to be part of medical history.

But then we started worrying the kind of worries you do when you've watch too many X-Files episodes. Would this be a good thing for the children? What about privacy? Obviously, that wasn't so secure, as proven by the phone call. How long before word of this leaks out and god forbid someone tries to hurt the kids just to time how quickly they heal.

No. We decided no. We would not be participating in the study any longer. We will not be going to Cincinnati to follow up. And not just because we're conspiracy theorists or overprotective parents, but because none of this real. April Fools, nerds! 

4 thoughts on “Say what?

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