Seattle Children’s Hospital: I Love It So Much I Could Marry It

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.

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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.

4 thoughts on “Seattle Children’s Hospital: I Love It So Much I Could Marry It

  1. I think you have a great thing going. Seattle Childrens is a phenomenal place. We have had some experience in past years with them, and their care for our son was fantastic. My family had a similar experience for many years with Primary Childrens in Salt Lake. The doctors there took amazing care of my sister. Born with multiple congenital problems, we were blessed with 54 years with her. They were good years, with school, mission, college, work, service, and play. Thanks to all those medical personnel who give their hearts to the children of the world!

    So glad you have this hope! Love you all!

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