Back on the Roller Coaster

Well…. this was a summer marked by some tremendous successes and some sad challenges. 

Just after school got out for the summer, the dark cloud that had been tailing us for two years finally caught up to us.  A visit to the ortho surgeon confirmed that Caitlin needed to have hip replacement surgery.  We knew this was coming sometime…. but we had hoped to put it off a few more years.  But after watching her pain level go up and stay up throughout the spring, I don’t think we could count surprise among the myriad of emotions we experienced when we found out the time had come.

Caitlin is 11 years old and has been battling systemic juvenile idiopathic arthritis since she was 3.  She has always been a tough case medically, and has suffered with inflammation in literally all of her joints.  She failed most medications, and over the years, it frequently fell to prednisone to control her dangerous levels of inflammation.  Consequently, that drug combined with the years of inflammation has meant serious permanent damage to her joints.

Her hips are essentially shot.  Her left leg shortened by an inch this past year, causing her to limp even more.  She was in excruciating pain daily… and we were helpless, watching as adult doses of vicodin daily didn’t even touch the pain.

Though we thought long and hard over this decision, in the end, it really wasn’t a choice at all.  The only other option was to wait longer, and watch Caitlin try to live in daily pain as her mobility disappeared.  Not much of a choice.

Amazingly, and somewhat ironically – Caitlin’s arthritis has been quiet for the last 18 months.  Completely without explanation.  We had failed one drug and were trying to decide what to do next and all of a sudden – everything quieted.  The inflammation went away and her labs returned to normal.  It was as if a switch had been turned off.  It would have been a wonderful and welcome break from this disease, if not for the pain from the hip deterioration.

So…. we planned for the surgery – making summer vacations early and trying to have as much fun as possible.  The actual surgery could not have gone any better.  Despite being very weak in the hospital, needing a transfusion,  and being too stubborn to eat the hospital food or do PT… Caitlin thrived when we got home three days after the surgery.  She used her walker for the last time a week after surgery and hasn’t looked back since!  I cannot say enough about my daughter’s tenacity and strength.  It’s been three weeks today and you would never know to look at her what she has been through…. She is swimming, riding her scooter… and unbelievably, spent 9 hours walking around an amusement park yesterday!  Three weeks after surgery.

It sounds like a very happy ending… and we had all hoped for a breath of normal life as she heads into middle school.  But unfortunately, the shock of the surgery to her system has brought Arthur back into our lives… and she is flaring.  We saw the rheumy last week and he detected inflammation in all her joints (except the new titanium hip of course!)  We are back to the naprosyn, methotrexate… and unfortunately, a short strong burst of pred, trying to kick back this flare before it sends us spinning and searching for a new medication to battle the beast.

I have never seen Caitlin cry as much as when we got this news.  We try to alwasy have a psotive attitude… which is difficult to balance with the reality and constant battle of this disease.  I think somewhere in her heart, she must have thought we were done with this fight.  And now we are back on the battlefield.  She really doesn’t want to… she just wants to start her new school and be a normal kid.  But she does not have a choice, sadly.  That’s what this disease is.

We can only get back to it – one day at a time.  Back on the roller coaster with Arthur – fighting to get back the control.  Hoping that it happens… and that it happens soon!

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One Response to Back on the Roller Coaster

  1. Helena says:

    Thank you for sharing your thoughts. I truly appreciate your
    efforts and I will be waiting for your next post thanks
    once again.

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