I Always Knew He Was Special...

1 in 50,000 two year old boys will get Nephrotic Syndrome. 1 in 10 will not go into remission with Prednisone. I'm thinking I should send Luke into the Seven Eleven with a five dollar bill and teach him how to say, " I would like to buy Lotto tickets." I always knew my guy, Luke, was one in a million, but our latest endeavors with medication have his nephrologist, and his colleagues absolutely stumped. Luke's doctors cannot believe that they STILL have no detectable trace of Prograf in Luke's blood. They called the pharmacy to see if they were mixing it right, they called the lab to see how they were drawing the blood, and they asked me questions like, "Are you giving it on an empty stomach?" "Are you giving him antacids?" to which I answered yes, and no. Yes, he takes it on an empty stomach....Luke hardly eats at all!! And no...who gives a two year old antacids?

Sean and I are annoyed to say the least. He might as well be taking no medication at all, at least then he would eat normally and not have the horrid diarrhea, accompanying diaper rash, and what I like to call "random acts of vomiting." On Friday, the most beautiful day the mid west has seen in months, we decided to meet Aunt Katie, and cousin Natalie at the Arboretum. Luke wore shorts, Lexi wore a cute little sun hat, and we were very excited to get out of the house. On the way there Luke, who had been feeling fine and was excited to see Natalie, puked all over himself and the car seat. We had to skip the outing because his clothes were ruined, but he felt fine, this is what I mean by random.

One thing I've gotten from the online support groups is this: I am Luke's only voice in this situation. I know him best, and what is best for him. I'm sure all you Oprah watchers will know what I mean when I say that I am Luke's "health advocate." I called the nephrologist this morning and told him that I feel as if we are standing still. I want to discuss Luke's options and I want to turn this thing around. I don't want to continue the Prograf if it means raising the dose every two weeks, making him more sick, only to find it is not in his blood. Oh yeah, and did I mention that Prograf worsens kidney function? We are close to three months on Prograf, I think it is time to move on. The doctor was understanding and began discussing other options with me. Luke cannot go long without medication because the constant leaking of protein (which he has had for the last six months) will cause him to have chronic kidney disease, and eventually the kidneys will fail. The next drug for Luke may be Cytoxin. I've read a lot about it on line and have read other parent's testimonies on their children using this drug. It is not too much scarier than Prograf, but cannot be given for more than three months. After too much use the Cytoxin could cause problems with bone density, and Luke's immune system. Luke will most likely lose his hair, and need to get blood work every two weeks. I'm sure there are many other side effects. I cut the conversation short, realizing I couldn't make any decisions without Sean. We will meet with the doctor on Monday to discuss options, and decide what is next for Luke.

Again I must stress that Luke is happy. The rash is annoying, and the swelling (which I am getting better at controlling for him) is rough, but he is okay. He is thrilled with the weather getting warmer, and if his eyes are not swollen it is impossible to know he is sick.

The photos are of Luke texting on Nee's phone, Lexi in her sun hat, thinking we are going to the Arboretum, and the two of them on the swings.

Please pray for Luke to be strong and continue to breeze through whatever may come next.