In my last post I announced Luke's most recent relapse. We were hoping for a quick remission and then a taper from his medication. Well, he has yet to go into remission, and the doctors think we need to take action. Yesterday, we met with a second nephrologist at Children's Memorial. After talking to our regular neph, the two decided that Luke needs a second biopsy on his kidneys. He got his first biopsy about 3 years ago when he was 2. You can read about it in my 2 posts "Biopsy: Searching for Answers," and "Home Sweet Home." There are two reasons for the biopsy. The first reason is to see if we are still dealing with Minimal Change Nephrotic Syndrome. Has the disease changed or progressed? The second reason is to see if the Prograf has hurt the kidneys at all. We knew going into it that Prograf not only helps but could be toxic to the kidneys. We had no other choice, and for two and a half years the Prograf was the answer to our prayers, keeping Luke in remission, and for the most part, feeling good.
We asked a lot of questions yesterday, and did not get a lot of answers. This disease is rare, every patient reacts differently, and with Luke nothing is typical. I pointed things out to the neph about how Luke's body responds to different things (such as antibiotics, which always reduces the amount of protein in his urine, and have even put him into remission before), and he shook his head, and said "No, thats not typical." Some non-typical things are actually good things. Luke seems to be doing fine. He is happy, energetic, growing like CRAZY, eating like a horse, and only got sick twice this cold and flu season (thanks to the Chicago winter that never was!) His kidney function is 100%! If it wasn't for his blood and urine tests you would never know he was relapsing, and that his kidneys were filtering incorrectly. But it is a serious thing that needs to get fixed to insure healthy kidney function into his future.
The biopsy will be April 24th. It is going to be hard. He is much older and smarter, and he feels good. He surely will be wondering why he is in a hospital bed, and will most likely ask, "Is this about my kidneys?" He knows something is up with the kidneys and often wants to know, "how's my kidneys?" I once heard him telling his sister, "Well, maybe its your kidneys, we all have them, you know!" To which she replied, "yeah, maybe..." and then rubbed her head.
I will post on or after the biopsy day, and hope to have good news to share with all of you.
Please continue to pray that Luke stays strong and continues to breeze through whatever may come next.
