Thursday, September 17, 2015

We had a good run....

Dear Friends and family,

Well we had a good run, but unfortunately, its over.  In July, we discovered inflammation in Lucianna's left eye again and this past week we learned it's not being controlled like it should be with the addition of drops.  The only thing I am hopeful for is that she's growing and with growth, dosing must increase.  Perhaps she's outgrown her previous dose.  <fingers crossed>  We go back in early October to see if the steroid drops are helping and the increase in Methotrexate has helped.  We just found out that her liver counts on her lab work is all normal, so we are approved to increase the methotrexate starting tomorrow. Very happy about that.

We also had another blow in learning that Bella has a nephrotic syndrome that is yet to be definitively diagnosed.  In a nutshell, she has kidney disease.  We don't know which one but we begin treatment in early October.  Our doctor made it clear that her response to 4-12 week course of steroids will be paramount in knowing if she has a treatable disease.  Let me explain "treatable" -   "can be controlled, but not cured.  Relapsing is common and should be expected in many children."  If we don't treat Bella, it is certain that her kidneys will give out from working overtime to deal with the protein in her urine. So here I sit, trying not to think about the worse case scenario but worried for BOTH of my kids.  It doesn't seem fair but we will forge on.

In early July, my father died suddenly.  He was a terrific grandparent, affectionately called, "Papa".  I don't think a day goes by that you don't think of the person you lost. We are very happy that Mom has now moved in with us.  She has been nothing but awesome in helping us with the girls and doing things around the house.  I have really enjoyed her company and look forward to many years of friendship and reconnecting with her in a new and wonderful way.  It has not been an easy 3 months for sure, but we will get through it...we always do.  Family support has been incredible during all this heartbreak, and for that, I am very thankful.

I hope our October report is a positive one.  

Lucianna & Bella's proud Mama

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