Chasing Queen Frostine

 

 

We had a phone conference with the rheumatologist in Cincinnati.

He is reasonably certain that Cee does have SJIA.
He is reasonably certain that her disease is not currently active.
He has no explanation for her idiopathic chondrolysis of the hip.   (“Idiopathic chondrolysis” is the fancy way of saying “inexplicable disappearance of cartilage.”)

The past two weeks have been better than the previous six months for Cee.  She isn’t in a lot of pain.  She isn’t overly tired.  She still needs a hip replacement, like yesterday, but she is feeling great comparatively.  She’s spent time outside playing in between the near constant showers lately.

At her request David put her training wheels back on, and she rode her bike for the first time in a very, very, long time. She was ecstatic at this development.  She didn’t care that she’s an eight year old with training wheels.  She was just glad to be on her bike again.

Several doctors had mentioned that a fortunate side effect of her hips fusing would potentially be a decrease in pain.  Maybe that’s what we’re seeing?  Sort of a hip fusion honeymoon?

After talking with David about the recent call from Cincinnati, we concluded that SJIA is really just some awful real life version of Candyland.  We draw cards, hoping for a double blue, praying we don’t get Plumpy, and cheering when we are blessed with Queen Frostine.

Unlike the board game, it’s not possible to cheat at our version of Candyland.  There is absolutely nothing we can do to keep from getting stuck on one of those dumb black dots.  There is no way to stack the deck so we can go hang out with Grandma Nut or get to Princess Lolly.

To some extent, that’s how everyone’s life works.  We’re all just one turn away from cancer, or a job layoff, or a tornado.

But lucky for us humans, those cards are sort of few and far between.  The average Joe draws a lot of single purples, double oranges, and single greens.  Not terribly noteworthy, just enough to keep moving in the right direction.

The problem with SJIA is that there are an awful lot of Plumpy’s in the deck.  We get a streak of double yellows, and BOOM!  Plumpy.  Then a regular red.  BOOM!  Plumpy again.  It’s nearly impossible to get any traction.  We’re just always chasing Queen Frostine and waiting for the next Plumpy.
In response to our constant luck-of-the-draw journey with SJIA, we have put our house up for sale.  ‘Cuz nothing helps ya get through a stressful situation like moving with kids.

We had come to the agreement that we wanted to build our dream house, if we have to move.  But there’s not a lot of land available.  And it’s sort of mega expensive.  So the day after making this Big Life Decision, we completely changed our minds and put an offer on the house.

Things change fast in Candyland.

So now we need to sell our house.  That we built.  That we love.  It’s exciting and terrifying and sad all at the same time.  The new house feels like home.  All we have to do is fill it with our junk treasures, and it will be perfect.  But we’ve got a lot of work to do to get to that point.

What does tomorrow hold?  One of those regular color rectangle cards that leads to a magical rainbow?  Another d-a-m-n Plumpy?

Guess we’ll just have to wait and see what the pile has in store.  I think there’s still a Queen Frostine left in the deck…

 

 

 

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