Wednesday, May 29, 2013

"Life is not about how fast you run or how high you climb but how well you bounce." -Vivian Komori

"The greatest oak was once a little nut who held its ground." 

Dear friends and family-

So let me start with the bad news from today's appointment so that I may end on some positive notes. :) 

Eye Test
Lucianna still has inflammation cells in both the posterior and anterior parts of her left eye.  What does this mean?  It means that the inflammation is present in both the front and the back of the eye, and requires two different kinds of treatment.  The anterior, or front of her eye, requires a drug like steroid drops and the posterior part of the eye requires a systemic medication (like Methotrexate, her chemo drug she takes once a week) to control the inflammation.  When we were able to get her eyes quiet for a brief period at the end of February, she was weaned off the steroid drops.  (It was the best two weeks, health wise, we've had since June of 2012.)  When it was learned that her eyes relapsed once the drops were no longer being used, we were given some treatment options.  We opted to increase the Methotrexate dose once again -instead of using more steroid drops.  As a reminder, it is not advised that a child stay on these drops for long periods of time as they can cause other eye conditions that may result in damage/vision loss - so it's a balance between the Uveitis causing damage and the meds doing it also.  You have to weigh the risks with the doctor and do what you feel is best.  Today's findings have proved that the latest increase in the Methotrexate isn't controlling the inflammation enough.  Untreated inflammation will result in eye damage and profound vision loss.   So her doctor has recommended that we go back on the steroid drops for the left eye only three times a day and back on the nightly dilating drop.  (Lucianna is not a fan of the night time drops because they burn.)  I think I am going to have to invest in more jelly beans to help her through this!!  

Checking for inflammation cells.
In addition to the inflammation, Lucianna has "Band Kerathopathy".  Band Keratopathy is characterized by the appearance of a band across the central cornea, formed by the precipitation of calcium salts on the corneal surface. Currently she has a small calcium deposit on her left eye in the 9 o'clock position.  The doctor has explained that it is nothing to worry about at this point and they will monitor it.   Lastly, and the most disheartening news from our appointment is that Lucianna has a cloudiness in the lens of her left eye.  What does this mean?  It means that she could be developing cataracts.  Currently, she is okay and the doctor is not concerned yet, but she explained it to me this way - "Right now, you need not worry, but in the future, she could face cataract surgery at an early age." She reassured me that the surgery is very successful and that "back in the day", a child would to have to wear cataract glasses  that have a thick glass on one side and a normal glass on the other side of the glasses but now surgery is done instead.  I am still not sure that I have processed this information completely.  Sometimes I think doctors forget that as a parent, hearing that your child may need eye surgery to keep her vision in tact, is not easy to digest.  These Dr's have gone through this so many times with all their patients and it becomes robotic to them.  It is my hope that we don't have to go down this path but I would rather have it filed away in my brain than get a surprise on one of our visits.  So I have filed it under, "N" for "not gonna happen".

Time for some good news!  The pain in Lucianna's right eye is not due to an injury, inflammation or any eye pressure caused by the Uveitis.  Her right eye is quiet and doing well.  There really is no explanation for why she was complaining on Monday and Tuesday of her eye hurting but it is a blessing in disguise since we were able to catch some of the other problems and start an aggressive treatment plan again.  The pressure level in both her eyes is also normal.  Thank goodness! (Issues with the pressure can be a sign of Glaucoma, so this is an important symptom to monitor and always good to hear that it's "normal".)  Lastly, the best news is that her vision is still good and completely normal for a child her age.  Whewwweeee.

So today, we start drops three times a day, and another drop once nightly in the left eye and hopefully the next time I post a blog entry, her inflammation will have decreased! 

I can't tell you enough how grateful I am to have such a wonderful support system.  It always means so much to me when someone asks, "How is Lucianna?"  "What is the latest on her health?"  I find it therapeutic to talk about it especially knowing that she is cared about by so many.   Not only do I have such great immediate friends and family, I have connected with some awesome Moms from all over the world who deal with the same challenges of JRA and Uveitis.

Thanks for all the well wishes, prayers, good thoughts, good vibes, healthy eye dances and love...

-Lucianna's Proud Mama

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