There’s good news and there’s bad news, when it comes to the latest on my darling daughter’s skin. The good news is that we didn’t have to see Dr. BadHair again; this week we saw the head of the department, who asked us a year ago how far we were willing to go to cure her, and this time finally told us what that meant.
The bad news is that Chickadee has thus far decided that actually, no, she’s not willing to go very far at all, thanks, she will just be rashy, that’s perfectly fine, actually.
But I guess I’m getting ahead of myself, a bit.
The truth is that Chickadee’s skin issues have gotten worse and worse over the years, to the point where I don’t think she even realizes how modified her life is at this point. There’s a level on which this is positive—better than her sitting around feeling sorry for herself, right? But things are… not normal. And that’s not okay.
This summer we’ve finally hit on the magical cocktail of medications that keeps the rash to a minimum. (Notice I didn’t say that it cures it; it only keeps it to a manageable level.) She takes a handful of drugs every morning and half a handful at dinner, and then she take another medication right before bed, and lately she’s started taking my melatonin at bedtime, too, because her poor system is so busy being jacked up by some meds and fighting against being rendered sluggish by the others that she’s having trouble sleeping.
She has two different topicals to apply: one when the rash is mild and one when it’s severe. Our house is now filled with dye-free, fragrance-free laundry, cleaning, and shower products. We have to buy expensive sunscreen with no avobenzones in it because the cheap sunscreen will make her break out, but she hates the sunscreen and breaks out in the sun regardless, so basically she just doesn’t go outside during the day anymore.
The pool—newly converted to salt water, because the chlorine aggravates her skin—sits empty all day long. We’ve taken to going out to swim in the evening, when it’s in the shade and the sun is setting, so that she doesn’t have to wear sunscreen at all. Chickadee reports that the salt water actually dries up the rash, some, and so sloooooowly we’ve gotten her out there more and more, but always after dinner.
In just a few weeks, Chickadee is headed to band camp. (This one time? At band camp? My nerdling turned into a band geek!) It’s five consecutive days of being outside in the sun and heat. I am quite honestly terrified for her health; skin issues aside, she spends so much time being a cave-dweller at this point that I am worried about sunstroke because her tolerance for heat is very low.
This week we went to Chickadee’s regular clinic appointment and were surprised when Headguy came in to see her. He sat down and it’s time to solve this problem. I asked him what he was thinking.
“Well,” he said, kind of waving her chart at me, “the thing is, we’re never going to diagnose her. After all this time, we don’t know what it is, and the truth is that it doesn’t matter—she has some sort of diffuse immuno-reaction that’s impacting her skin. Naming it won’t even help us treat it. At this point we know the medication she’s on makes it less severe, but it doesn’t cure her symptoms.”
I nodded. I was so unaccustomed to not being brushed off in that office that I was somewhat mesmerized.
“But we know she responds well to steroids. So I think it’s time to take it to the next level. I think she’ll respond well to an immuno-modulating medication, but you have to understand that there are some risks associated with it.” He gave me a printed handout on the drug he’s proposing. I began to read.
“Immuno-modulating? This is an immunosuppressant. You want to put her on anti-rejection meds?”
He laughed. “Well, yes, they’re used for that, too. In cases like hers we’ve had a lot of success eliminating the skin symptoms entirely with this regimen.” Chickadee perked up immediately. “And we need to go over the risks, but most of those are mitigated by the fact that we monitor her very closely and can discontinue if we see ill effects. She’d need to have regular blood draws while on it, though.”
Chickadee began shaking her head. “No thanks,” she said.
Remember how years ago I would talk about how Chickadee was extremely needlephobic—freaking out for every shot or blood draw—and y’all were all “Oh, she’ll outgrow it, don’t worry!”? Yeah. Still hasn’t happened.
Headguy went on to say that he feels Chickadee is old enough to decide for herself, and no one is going to force her to take these meds, but she needs to decide if she’s willing to do it, and if she’s not, we won’t.
I sat there gaping like a beached fish. “But we are going to TALK ABOUT IT,” I finally sputtered. “Because being afraid of needles is not necessarily a good reason to PASS UP A CHANCE AT A CURE, CHICKADEE.”
But by this time she was curled up in a ball on the exam table.
We can’t force her. We won’t force her; she has to do it willingly. But this could allow her to live a normal life again; she could take one pill instead of five, and the rash might disappear entirely.
Of course, that one pill has potential side effects. And means having her blood taken more often. And some studies suggest it even raises her chances of getting cancer. It’s not like deciding to take a Tylenol for a headache. We discussed it, some, and now her dad and I are discussing it (his comment, which made me laugh: “Also, it will keep her from rejecting that kidney!”), and the only person who is refusing to discuss it is HER, because she doesn’t want to have her blood taken.
She’s 13. She’s old enough to choose for herself. But… I can’t shake the feeling that she’s potentially throwing away her shot at a cure because she has a phobia. And that’s just hard.
So for now: We wait. Maybe a week at band camp will change her mind; I can’t imagine that it’s much fun to march all day when you’re crazy-itchy. Maybe she’ll come around, maybe she won’t. I have to let her decide.
Maybe I can just text her a few hundred times a day with all of the good reasons why she should consider it. That’d totally work, right?