Tag Archives: PLEVA

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It's taken me days to write this post, not necessarily because I haven't had time to finish it, but because my feelings have been raw and my mind restless.

WRDD A couple of days ago was World Rare Disease Day (WRDD). Rare diseases touch so many lives. And these diseases seem to be multiplying at an ever increasing rate. I haven't heard of most of them, nor can I attempt to pronounce their names.

I'd never even heard of PLEVA (Pityriasis Lichenoides et Varioliformis Acuta) until my son woke up one day, suddenly in its grasp. And while WRDD is meant to inspire and raise awareness for so many of this Earth's strongest warriors, it also left me feeling somewhat melancholy. It left me thinking for too long about the disease that has taken up residence in my sweet son. The fact that there is even a need for such a day sprinkles salt into an already gaping wound.

Prior to the 28th I'd already been obsessively thinking about Tanner's disease and his future more than I would care to admit.

Thanks to a dear friend of mine that connected us, I am suddenly in contact with another mother of a child with PLEVA. We chit chatted via social media about this horrible disease. For the first time since Tanner's diagnosis I felt like we weren't silently fighting this battle alone.  We were suddenly part of a team, however small it may be, fighting this beast together. It was uplifting.

But it was also sobering. This little girl has been fighting for a year longer than Tanner and she's right in the thick of it.  Tanner's in the middle of a slight reprieve and it's been easier to ignore for a little while. This little girl even sees the same doctor at Seattle Children's. The scariest part is that her current reality is a look into our most likely future.

The rosy picture painted by our doctor was most likely wishful thinking. In the event that Tanner never has another full blown flare, that might be how our future will look. She was probably being hopeful and extending that hope to us.

When I checked him the other day he had 11 spots in various stages. If we get to 20 active spots he starts chemotherapy. It's the only time in my life I've ever been truly frightened by numbers.

This sweet, little girl has been on chemotherapy for 17 months already. And she was just barely able to successfully lower the dose for the first time. And yes, it's a lower dose than what a cancer patient would be administered so she still has all of her hair, but she gets really sick and exhausted and had to be pulled from school. She receives monthly cancer screenings because the risk of mutation is higher. Listening to this sweet mother explain her daughter's situation to me opened up every fear that use to overcome my thoughts. I felt my hope waning. Realistically, this will be our life.  This will be Tanner's life.

I am not without hope. I have hope in the Savior of mankind. I trust that all things work for our ultimate good and that things are as they should be. But my humanity and my motherhood have no problem screaming at the top of their lungs that this whole situation is a far cry from fair. It's humbling to submit my will to God when this avenue is so contrary to everything that I want for Tanner. I am certain that my Father in Heaven and I have the same end result in mind when it comes to our son and I am even more certain that He knows better than I the best route to get us there. But in my weakness I am incredibly afraid of the path He's chosen.

On days like World Rare Disease Day, days where I don't want to close my eyes for fear of my own thoughts . . . on those days I humbly have to acknowledge that there are powers in force far beyond my capacity to control. I humbly declare that God loves my son more than I do and He is fully aware of our needs during this life's journey. He is conscious of that feeling of fear that lingers just underneath the surface of my every day life and never goes away. He is keenly aware of all of us and in that I find peace.

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I've been absent from the blogging world for quite some time. It's quite shameful really. But hey, I was pregnant (and not pleasantly so) and I had my miracle baby. That's a story for another day, however.

Today when the school called me to come and pick up my sick Kindergartner I was barely phased. Normally a wrench such as this thrown into my already chaotic days would have sent me into a hyper stressed sort of inward panic. I would've been the perfect picture of calm and collected if you had seen me, however, because hey, being outwardly calm is one of my talents. But today I really was calm. It didn't matter that I was trying to work. It didn't matter that I was in the middle of homeschooling my 8 year old. It didn't even matter that I'd just taken my newborn out of the bath and was nursing him mid phone call.  All was well.

Why, you say? Because Seattle Children's Hospital has entered my life, that's why. Talk about an ideal relationship. They're perfect. Or at least close enough to perfect that you can blindly put them on a pedestal for the remainder of your eternal relationship.

Tanner1 blog

If you've read my blog for long you know that Tanner, my 7 year old, was diagnosed with PLEVA back in March. It's a rare autoimmune disease with flare ups lasting for months (or forever) that make you look like you have the chicken pox. It leaves terrible scars and is fairly unpredictable. It can mutate to lymphoma and we were told there was no cure. His diagnosis tore at this mom's heart. It's a tough thing to hear about your child.

We tried 2 different antibiotic treatments lasting for months that did nothing but weaken Tanner's immune system.  He was fatigued and caught everything under the sun. And he still had spots. It was awful and frustrating.

Finally our appointment with Seattle Children's came (there is quite the wait to get into the place because let's face it, nobody breaks up with the perfect significant other). Tanner and I went on Tuesday. It was heavenly.

Our doctor was phenomenal and hopeful. She said that Tanner had quite the impressive case of PLEVA from the looks of his scars (not the type of impressive you want to be). She also said that treating it with antibiotics was basically worthless and the last thing she would do. She treats PLEVA with a low dose chemotherapy drug. He'd be on the drug for 1 to 2 years. It's immunosuppressive and so he'd have to go off of it any time he was sick in order to heal, but the lengthy use of the drug stops the flare ups and then is used as a maintenance drug for awhile. Slightly scary, but at least it's something that works.

And in even better news, she told us that she has seen PLEVA burn out. I stared at her blankly. What does that mean? It means she's seen it cured. Not all the time. Sometimes it lasts a lifetime, but she's seen it go away. You know what that means? HOPE. One of the finest feelings in existence. Hope gives people reason to believe and to have faith and in this case, to breathe easy.

Oh, did you think that was it? Sorry, no. Are you ready for the news even better than that!? She's never seen it mutate to lymphoma. NEVER. NOT ONE TIME. She's not saying it can't or that it won't, but she is saying that she's never seen it happen. I could've kissed her. I think she knew it too because she told me my mama heart could rest easy for a bit. She even told me what to watch for if it were to mutate (we were previously told that lymphoma and PLEVA would look identical and that it'd be tough to know if it had mutated). Oh, be still my heart.

So, yes, my son still has a rare autoimmune disease. And yes, it may never go away. There are all sorts of terrible things that could happen. But his doctor is hopeful and confident and she has a plan; an effective plan that has worked for her many times before.

Tanner currently has only one new spot on his leg. Unless it flares up and he gets more spots, he doesn't have to be on the medication yet. We can rest easy and not have to feel the panic of the  uncertain every moment of every day. And if things turn south we have someone we can call. Someone who knows what to do, someone who's done this before.

Things don't always turn out the way we'd like them to. Sometimes they turn out exactly opposite of our ideal. Sometimes our hearts break and sometimes hope seems just out of our reach. But sometimes it doesn't. Sometimes we're blessed with little miracles. Sometimes things take a positive turn. And sometimes God has prepared other people to improve our journey and make it easier.

Thank you , Seattle Children's Hospital.

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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.