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.

Second Times A Charm

Luke had a beautiful end of February and whole month of March. He was in remission and avoiding illness at all cost. This week, Luke and Alexa both got Bronchitis. Alexa was good to go in 3 days. We thought Luke was too, and then he woke up yesterday with a low fever and vomiting. His eyes were swollen and his urine was testing very high in protein. A relapse. He took to the couch and was pretty out of it. After 3 failed calls to the nephrologist I took him to the CDH emergency room. He slept the whole time we were there, and thankfully no needles were used. The out come of the trip was that Luke needs to start steroid therapy again. This means Prednisone. The steroid I keep mentioning that I swore would never be allowed in my home again. If you want to know why, you can go back to previous posts and read about what this steroid did to a two- year- old- Luke. The reason for trying this again is that if it works, it could cure him of Nephrotic Syndrome. The nephrologists says that it could work even though it did not the first time we tried back in 2008. While Prograf is putting him in remission and holding him there, it is not curing him and he is relapsing too much. So, I struck up a deal with the nephrologist that we would put him on Prednisone only as long as it takes to determine if it is going to work or not, and then an immediate taper. No dragging it out, either it works or it doesn't. There is no need to put him through the side effects of steroid use if we know it is not working. The nephrologist agreed and said three weeks is the max. So, the plan is to start the steroid therapy after our vacation to San Diego in three weeks. We figured we would let him enjoy the trip and then come home and give it a go. I will post again when the therapy begins to let you all know how it is going.

Along with this very handsome picture of Luke, I have posted a video of the kids sleeping in the car. Luke is REALLY into pirates right now....

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.

Praying for Remission by Prograf

Luke met with the pediatrician Tuesday, and the nephrologist yesterday. The pediatrician prescribed another rounds of antibiotics for an ear infection that Luke has been fighting since before he went into the hospital on New Year's Eve. It had dawned on me Monday night that Luke could not hear me everytime I said something. At one point I found him to be studying my face and then looking around him as if to get some clues as to what I was saying. Then replied with an answer that had nothing to do with my question. I asked the pediatrician if this could be from the ear infection and she said that his middle ear is so inflamed that it is pretty much closed, and the ear drum is bulging. So, in other words, Luke is in pain, and not hearing so well. Hopefully the antibiotics will clear this up once and for all and no other action will need to be taken.

The nephrologist appointment went well. Luke is going to continue his Prograf, and we are hoping that this alone will put him back into remission. The nephrologist seems to think that another round of prednisone might be needed. This is the steroid that made Luke blow up to almost twice his size, have horrible mood swings, and a very hard time sleeping. And, let's not forget it did nothing to help him!!! The neph said that some kids are resistant at first, but if they try again at an older age they might respond. Another reason that this might be worth trying is that when Prednisone works for a child it not only puts them into remission, but often heals them for good. While Prograf has put Luke into remission in the past (and I am confident that it will again) it works like a band aid and once Luke is off the Prograf he relapses right away. So the plan is to keep up with the Prograf for three to four weeks to see if it will once again put him into remission. If this doesn't work we will consider the steroid again. Not something I even want to start thinking about right now!!!

The pictures are of the kids in their Halloween costumes. I figure since I didn't write for a year that I could highlight some of the great times we had in the past year.

Long Time No Blog

I must apologize to my followers! It has been well over a year since my last post. Luke has been doing well. He had a great summer, excelled at swim lessons, and turned four in September. He started pre-school and continues to make us so very proud of him. Up until about a week ago Luke was in remission for almost a year. The Prograf was working wonderfully, and all was well. Right after Christmas Luke and his sister caught a nasty virus, and it proved too much for Luke to handle. The pediatrician put him on an antibiotic for an ear infection and said to expect a couple more days of fevers and the virus would run it's course. He started throwing up and was not getting the Prograf he needs to stay in remission. After a couple of days of him not getting off the couch, eating nothing, running a constant fever, and barely talking we took him to the ER. In the ER they confirmed what Sean and I already knew, that he was relapsing, and his albumin level was dangerously low. Albumin is a protein, and Luke had started to lose it at an alarming rate. He was admitted to the hospital and spent his New Years under the close watch of the pediatric staff. He had a fever for four days, which topped out at 104.5. He barely ate anything and slept a lot. He was given diuretics to help him start urinating, and lose some of his swelling. The diuretics were also meant to help him produce more albumin. The virus finally passed. The fever broke and the vomiting stopped. We came home last night and luke is back on his prograf and working his way back to remission.

My guy Luke is very strong, he barely cries anymore during blood tests, willingly does whatever is asked of him, and not until his last night in the hospital did he complain or ask to go home. Today he even learned to swallow pills, if you have a four year old or younger you know this is a huge feat, and going to make mom's and dad's life A LOT easier!

When we returned home last night the first thing he asked was, "Is Lexi here? Did she miss me?" He was so excited to see his sister. They immediately got on the couch together and began playing and hugging.

We will meet with his nephrologist on Wednesday and see what's next. We had thought that the next meeting with the Nephrologist would be to discuss getting him off of the Prograf. Unfortunately, we learned the hard way that Luke is not ready to be off of his medication. Hopefully this will soon seem like a small bump in the road, and we will be back to school and back in remission.

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