A Husband, 4 1/2 Kids, 2 Dogs, and a Rare Autoimmune Disease

I know I've been absent from the blogging world for a bit. I didn't mean to be. Life just went a little wild there for awhile. And I've come out of that wild a completely different person than I was when I went in.

First of all, the husband, four kids, and two dogs are not news. They were here before, right along with all of the busyness that our little family entailed. We were doing homework, dishes, and laundry. We were working and coaching and running to baseball practices and serving.

I wasn't pregnant then, however, and now I am. I am all smiles about this, lest you were wondering. I've been waiting on this little baby and couldn't be happier.

In the past I have had the worst pregnancies you could ever imagine. They were so awful, in fact, that my husband was driven almost to madness worrying about what this one would bring. I am happy to report that I am a walking miracle and that my head has not been found in a toilet even one time. At least not yet and I'll take it. I'm about 10 1/2 weeks now and my head would have normally been permanently in a toilet for the past 6 weeks. I can't say that I'm avoiding the nausea, but I am gratefully skirting the extreme.

Sometimes when we do what we should, even if we're overcome with fear and apprehension, even if we think we know the nightmare that we're voluntarily jumping into, blessings rain down from heaven. They just do. And everything works out just like you wanted it to.

And then sometimes it doesn't.

Our son, Tanner, who's six, has been suffering from a skin "ailment" for several months. We made a few trips to the pediatrician where he was diagnosed with and treated for a staph infection and then scabies, all with no relief. Thanks to the recommendation of a friend, I insisted we see a dermatologist.

The dermatologist they referred us to wouldn't take our insurance (of course . . . that would be too easy) and so I went in search of a new one. My gratitude has multiplied as I realized that the one we found has been perfect for my son.

He looked at Tanner for two seconds. Seriously two. And he knew what it was. "He has PLEVA. I'm certain of it. But only a biopsy will tell us for sure."

"Wait. What? What's that!?"

"Well . . . let's do that biopsy first and then we'll talk about it."

He was sidestepping me. He was mercifully trying to spare me any panic. He didn't know me yet though and couldn't have possibly known that I would go home and immediately research the whole thing. That's what moms do. It's not his fault that he's not a mother.

Panic set in right along with the reality of the situation. Tanner's skin matched the photos exactly. No wonder the doctor was so certain. It was as if I was looking at photos of my own son. The words unknown cause and no cure and can mutate to lymphoma kept swirling around in my brain.

So I'm going to tell you what I've learned about PLEVA in the three weeks that it took to get a biopsy and definitive results. PLEVA (pityriasis lichenoides et varioliformis acuta) is a rare autoimmune disease. Researchers have several theories, but the cause remains unknown. There is also no cure. Symptoms are treated into "remission" and can come back any time his whole life.

The symptoms are basically little ulcers all over his skin (in Tanner's case they're on his extremities and face . . . his trunk is unaffected). He honestly looks like he has the most terrible case of chicken pox you'll ever see. But he doesn't. Mercifully, Tanner's lesions don't itch or burn like some people's do. They're just there. And mercifully, because he's only six, he's not concerned about the appearance of these yet although he did ask me before baseball practice yesterday if people would laugh at him if he wore shorts and a tee shirt. I told him they wouldn't. And I hope that that will always be true.

He has to go on antibiotics for three months, along with using a topical cortisone-type cream. And they hope that will send it into remission. Other options are steroids or ultra-violet light treatments or oral chemo drugs. Ironically, all of the treatments are technically pretty bad for a person under normal circumstances. This is where the risk of mutation comes in. A lot of people have no luck with treatment except going to tanning beds. Enter lymphoma. Some have luck only with oral chemotherapy (which if their PLEVA has mutated to lymphoma will mask it and it will go undetected).

All of this has bombarded me with a huge amount of sadness and what seems like an infinite amount of fear. Tanner's six. Only six. It's not fair. He's too good and kind and patient to have to suffer with this. What if he doesn't respond to treatment? A lot of people don't. What if it mutates? It so easily can. This is my son. Nothing could have prepared me for this. 

But as I've watched my sweet son endure this already and as I've offered up numerous prayers to heaven, I've learned a couple of things.

God is always listening. He weeps when we weep and He lifts our wounded hearts. He knows what course through this life is best for Tanner and He knows which course is best for me and my family. He sends us that way. And we have two choices. We can rise up or we can fall. I think our Father in Heaven stands there, holding His breath on occasion, while we decide if we're going to rise up and lean on Him. This family will follow Him. We will trust Him to take us down whatever road will ultimately lead us back to Him . . . regardless of how bumpy and hard that road.

I've also learned that something as simple as a good attitude eases burdens. It sounds simplistic and dumb, I know, but it's the truth. I was with Tanner for his biopsy. They numbed him and then cut a chunk out of his arm and stitched him up. Tanner thought it was the coolest thing ever and didn't even flinch. He'd "never seen so much blood coming out of a real person!" (apparently different than the puddles he'd seen coming out of fake people??) A few days later, Hunter hit Tanner's arm and busted one of the stitches. "Oh great. Now I only have one stitch, thanks to Hunter. At least it's not bleeding!" Oh sure, hey, and it's only one more scar to add to the dozens you're already going to have. Then they cut out the remaining stitch and  pulled it from his arm. He didn't move an inch. The nurse said that little kids normally have to be held down and squirm all over the place. "You've got a tough kid." Yeah, I know it. And his attitude and lightheartedness are going to make this whole thing that much easier. I've been able to smile at medical procedures where I'd prefer to sit in the corner and cry. I'm going to try to be more like Tanner. It'll make it easier on everyone.

Anyway, I guess I didn't exactly say it, but his biopsy was definitive for PLEVA. The disease is on a spectrum and he's testing in the mid-low range, which is a blessing. The doctor also said that his current biopsy showed zero signs of large cell lymphoma. He was extremely excited about that and so was this mother.

So for now we take this one day at a time. We place our hope right where it belongs, but also realize that the will of God supersedes all else. And we're good with that. I trust Him infinitely. And hey, I'm going to do my best to not blow up like a balloon while I'm at it (thank you, baby). In all of my previous pregnancies I've gained 50-55 pounds. I'm shooting for 45 this time since I'm all about a positive attitude and optimism these days.

4 thoughts on “A Husband, 4 1/2 Kids, 2 Dogs, and a Rare Autoimmune Disease

  1. Dennis Waller

    BriAnne: As a friend of your parents, I have watched you grow and mature in amazing fashion. I am old enough to be your grandfather and very selective in what I read. My career has been around writing and I admit you brought me to tears with this posting. But what I feel is not so much sadness but of joy for the wisdom, love and talent Heavenly Father has given you. Though I do not belong to your faith, I can see God working with and through you and your family. Like your dear parents, Heavenly Father is actually blessing you - and us - through your sharing or trial, tribulation and laughter. May God bless you always.

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  2. As a mother of a child with an "extremely rare, could end up being fatal, will definitely make him look weird" condition, my heart goes out to you. I can say, with time I have come to a point of acceptance and an attitude of being grateful for whatever time we have with all of our children. Any one could get hit by a bus tomorrow. We can't dwell on that. Call me any time if you want to unload the burden of the "what-ifs". I understand!

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  3. finkjess

    I too have a kid with a 1 in 1000 condition, but I'm so grateful that medical technology is advanced enough to be able to diagnose her and help me know what to watch for so we can treat her. Like your son, there's no cure for her condition and it can only be managed. It's scary and sometimes depressing knowing what lies in wait for her, but it's so much better to face it armed with the knowledge of what my options are. Hang in there.

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