Goodbye Summer, Hello Problems

I really must apologize. After reading my last post I realize that I left a cliff hanger there, and should have updated sooner. When Luke is doing well, this blog and his disease are the last things I want to think about. When he is doing not so well I take to the blog and get the info out there so everyone knows what's going on. So the good news is he did so well all summer that he never needed the steroids, never relapsed, and had no problems at all. He went to day camp, and took swim lessons. He road his bike, and went swimming almost every day.

And now the bad news. About two months ago Luke started having stomach issues. He began a pattern of vomiting about every two weeks. He wakes up around 4 in the morning and starts violently vomiting and going the the bathroom. This lasts an hour and a half to two hours and then he is fine. This happens about every tow weeks and is always at 4 or 5 am. The first few times it happened I figured he caught a little stomach bug or ate something that did not agree with him. The last episode like this was early Friday morning and Luke lost 8 pounds in about 48 hours. I started to realize that it might be his medication, Prograf. Because of the timing of the episodes always being at 4 or 5 am, and about 8 hours after his last dose so I called the nephrologist. The neph thinks he may be forming an intolerance to the Prograf and needs to come off of it. We also found out from the neph taking some blood tests that Luke is in fact relapsing. I did not know this because I have not seen any symptoms that would cause me to test him. No swelling, no being unusually tired, nothing.

So here's the plan. Luke needs to be in remission before we can taper him off the prograf. Once he is in remission for 3 days the neph will give us a taper schedule. Once he is completely off the Prograf the neph thinks his kidneys may hold on their own and not relapse. I highly doubt this, but will pray for this outcome anyway. If he does relapse we will try the steroid (Prednisone) therapy again. There is a possibility that the prednisone will work for him this time and cure him completely. This was not the case 3 years ago when we tried the steroids, but he is older now, and this is a possibility so I will be praying for this outcome as well.

I will try to be more diligent and keep you all informed. I do not now when he will be in remission. And nothing can happen until then.

Please continue to pray that Luke stays strong and continues to breeze though whatever may come next.

Please God grant me the Serenity to accept the things I cannot change, the Courage to change the things I can, and the Wisdom to know the difference.