Tuesday, June 26, 2012

Dialing Back... Our Cara’s Reversal of Fortune 

We happily remember, since our last weblog entry in August, 2010, progressing all through that year with increasingly fortified hopes and almost for-certain certainty, that Cara was finally arriving at that place of returning to herself.  

That is because Cara was off all steroids infusions and other medicines for almost one year.  In December 2011, when we went to Chicago, they took her off of the last medicine from her treatment plan.

Then, this January 2012, Cara developed a fever for a few days.  It was a low-grade fever, and she had no other symptoms indicating that anything was going wrong.


But, late in February 2012, Cara developed another rash on her arms.  It was itchy, and just sort of looked like an allergic reaction to something.  We took her to our local pediatrician and she put Cara on allergy medications for a few weeks…however we watched and found the rash had begun to spread and started up on her cheeks again.  By this time we pretty much knew that this was not a good sign.

We took pictures of the rash and emailed them to Dr. Pachman in Chicago. She asked us to fly there with her as soon as we could. This was Spring Break week… around the middle of March.  After we got there, and after Dr. Pachman could check Cara out, she confirmed that this was a flare-up or relapse for Cara of her Juvenile Dermatomyositis disease.


Even though she had no muscle weaknesses, and her labs all came back in normal range, her doctor re-started all of Cara’s medical regimes, including the Solumedrol infusions, twice a week by home health nurses, to begin right away.  She also re-prescribed Cara’s monthly, in-hospital to-be-administered IVIG (Intravenous Immunoglobulin) infusions... as abundance of further caution, just to be sure all that could be done for Cara that could be done.  The doctor required a PICC line (peripherally inserted central catheter)*  inserted into one of Cara's arms… a medically necessary procedure that would accommodate all of the IVs and considerable lab work that would be needed to test and to measure the progress and effectiveness of these treatments.


Cara has had so many doctor appointments and infusions that whenever she gets an infusion her blood pressure rises, so we had to have her certified as Hospital Homebound.  This is where a teacher from her school comes out to our home, teaches her the required educational school subjects and reports back to the school.  That was because she was missing way too many school days. Somehow she pulled off straight A's through all of this… maintaining her always excellent school grade records.

We traveled to Chicago again in May for another evaluation, and Dr. Pachman confirmed that Cara is beginning to respond properly to her treatments, and this is good news.  Her rash is diminishing.  She still has no muscle weaknesses, but her labs are slightly elevated now for disease inflammation. Thus, we will have to continue on this medical plan until our next appointment in August with Dr. Pachman, and keep praying for Cara every day. 

Thank God for those in our family who help us so many times and in so many ways with covering these visits for us so that Chuck and I can continue to be able to still go to work.  I don't know what we would do without their fulfilling that role.

This is Cara’s mom, Krissy, signing off for now… May we be blessed this year with Cara’s getting stably back on her track to wellness as this year marks her 14th birthday this coming November.  And a future for her and for all of us… that future we all want to be that future worth working on and waiting for.

* A PICC line is, by definition and per its acronym, a peripherally inserted central catheter. It is a long, slender, small, flexible tube that is inserted into a peripheral vein, typically in the upper arm, and advanced until the catheter tip terminates in a large vein in the chest near the heart to obtain intravenous access. It is similar to other central lines as it terminates into a large vessel near the heart. However, unlike other central lines, its point of entry is from the periphery of the body from the extremities. And typically the upper arm is the area of choice.

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