Back To School

Here are some quick bullets for those that don't want to read my very long post, but want to know what is going on with Luke.

• His function fell below 50%, and then came back up to 50%.  He is down 40% since March.

• Luke will get a kidney transplant once he reaches 30%. We have no idea when this will be. He will be tested monthly.

• His kidneys are making it hard for him to keep potassium and vitamin D levels where they should be.  He is taking supplements for this.

• His kidneys are not assisting in the production of blood like they should, so he is still anemic.

            Luke started 1st grade about three and a half weeks ago.  On the first day of school he felt sick in the morning and threw up right before walking in to class.  We assumed it was nerves because he felt fine afterward and went to school the rest of the day.  The next morning he woke up and wouldn't eat breakfast because his stomach hurt and he was afraid to throw up at school again.  This continued for the next week and a half and he threw up just about every other day.  I then found out he had thrown up at school but didn't tell anyone because he felt better afterward, and didn't want to go home, and didn't want me to call the doctor.

          Well....I called the doctor.  Luke's nephrologist wanted to see him that same day, so to Luke's dismay I pulled him out of school and took him to the hospital to see his kidney doctor.  He got a full set of labs and the neph said he would call me that evening.  Luke got to go back and finish his day of school.  After school he went to karate class.  I found out that evening that Luke's kidneys were failing to do several of the jobs they are responsible for.  Luke was "near depletion" of potassium and vitamin D.  He is still quite anemic, and his function had dropped below 50%.  When his function was tested in March it was around 90%.  This was all very shocking to us for a couple of reasons.  First off he had a great summer.  Never got sick, and only swelled up once.  Also, aside from the random vomiting he felt great, he had just went to karate class!!  He loves school and wants to be there, he has energy and a good appetite.  The neph seemed concerned and said we should test him in a week, after pumping him full of potassium and vitamin D, to see if the function would come up.  Luke has gone from 50% back up to 90% in the past and so we were hopeful that he would pull off this miracle once more.  The neph said that if we test again in a week and the function is still below 50%, or lower, then we would need to start the process of getting Luke a kidney transplant.

         In the mean time Luke could not take any diuretics, so he had been watching his salt intake, and sleeping in an almost sitting position, to try and slow the inevitable swelling that we knew would come when being off diuretics for so long. He made it about two weeks before he woke up and could barely open his eyes.  A week later we went for labs again.  A week after being under 50% luke is now right at 50%.  This is good and bad news.  Good news because we do not have to start looking for a donor right now. Bad news because he dropped 40% in about 6 months. His potassium only slightly went up, and his vitamin D really didn't budge, but the doctor said that vitamin D takes longer to go up.

The plan for now is to test Luke monthly.  When his function gets near 30% we will start looking for a match and get him a new kidney.  We have no idea when this will be.  We had originally hoped he would hold on to at least half the function till he was a teen or older, but that doesn't seem possible any more.  The kidneys are responsible for some very important jobs in the body, and his are in fact failing at their jobs.  If this were an employee they would most definitely have been replaced by now, and this is how I feel about his kidneys. A transplant would be scary for sure, but Luke deserves a new start.  He worries about stuff that most 6 year olds have never even heard of.

Luke is tough, though.  Tough enough to go to karate class with barely any protein, potassium, or vitamin D (he did look pale, but I had no idea!).   Tough enough to walk into his 1st grade class, while it is already in progress, with big, swollen eyes (he said his class was much better about this than they were in kindergarten).  Tough enough to endure the needles that he truly fears (he totally head butted me this last time when they stuck him, good thing I am just as tough as he is), and tough enough to put up with the random pain in his legs and tingling in his hands and feet. And tough enough to eat fruit and plain noodles while everyone else is eating pizza and cheeseburgers (to Luke this may be the worst part!!).

Please pray that Luke continues to breeze through whatever may come next.

Hoping To Go Home By Thursday

I took Luke to the ER on Saturday evening because of stomach pain and trouble breathing. After an ultrasound of all his organs, a chest xray, and blood tests Luke was taken by ambulance downtown to Children's Memorial. The doctors wanted him to be close to his team of kidney doctors. It turns out he has a serious infection in his intestines and in his blood. This is common in kids with Nephrotic syndrome. They carry extra fluid in their bellies, and the fluid is a perfect place for bacteria to thrive. The infection really knocked him out. His kidney function is down, his potassium and calcium are low, and his blood count was so low they were considering a transfusion. As of today his blood count is back up and his other numbers are slowly coming up as well. In the morning he will undergo a procedure to put a PICC line into his arm.  This will allow me to give him medication through an IV at home. I think we will get to go home on Thursday, but no one is telling me for sure yet. I am thinking he won't be back to school until Monday.  He can attend school with the PICC line in. It will be wrapped up and out of sight, and should not be a problem. I will also be having home healthcare professionals coming to the house to help me care for the PICC line.

Luke's spirits are up today, and we are both eager to get home and see our Lexi-girl, Dad, and sleep in our own beds!

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

BIG news...New Hope

                                               








 On Monday Luke went in for what I promised him would be the last blood draw for at least two months.  It is always a struggle when he needs to give blood, and I always feel like the bad guy holding him down and making him do it.  Well, I feel guilty no more... The blood draw from Monday showed that Luke got "almost all of his function back," and "his function is at almost 100%."  We are looking at this as just short of a miracle.  We knew it was possible after we wiped out the C.diff for his function to come back, but given his history we did not have much hope.  Luke was definitely knocked down, but as his Aunt Katie said, "Wow, he is such a little fighter!"

Luke is still spilling protein, and we are still using diuretics to manage his swelling, but he is pretty much drug free.  Luke feels great.  Luke looks great.  We will still test his function every couple

months, and his Nephrologist is still meeting with other specialists to figure out if we are doing everything we can.  I will post again if the plan changes and I am hoping that post comes well after the holidays.

     

The pictures are what happens when your very smart six-year-old figures out how to use Photo Booth and has a sister that loves the spotlight...

                                                                                                                                                                                           

 Please continue to pray that Luke is strong and breezes through whatever may come next.

Halloween in the Hospital

My guy Luke has had a rough couple weeks. He has been having fever and vomiting off and on for a week, and diarhea for much longer. A stomach bug definitely made its way through our house last week. Alexa, Sean, and myself were all affected at varying degrees.  Luke got hit hard. I took him to the ER Monday morning for dehydration and dangerously low albumin (protein) levels. 4 days later and we are still here. Last night we found out that Luke has C.diff. This is a germ, or bacteria that lives in the colon that is known as flora, or gut flora. It turns to C.diff and becomes toxic when the flora becomes over grown from antibiotics. This made sense to us because about a month ago Luke was on antibiotics for about 10 days and that is when his bathroom issues began. We stopped other medications hoping they were causing the problem, but they weren't and his problems continued. So, we are still admitted and he is now being treated for C.diff (Clostridium Difficile Toxin).

We've learned more about Luke's kidney disease since we have been here. We found out on Monday that Luke no longer has 100% function in his kidneys. Through this whole journey since age 2 Luke has always had 100% function. Even after finding out that 50%of his kidneys were scarred, we still had that silver lining.  He was still functioning at 100%. On Monday he was only at 50%. After treating his dehydration his function went up a bit, but we are not expecting it to return to 100%.  And taking into account all the other factors, such as the scarring, and the fact that he has been relapsing for months, and that he is steroid resistant, the nephrologist is assuming that it will decline further. Luke's kidney function could stay where it is for some time, or it could go down slowly, or it could decline quickly, we have no way of knowing. What we do know is that once the function gets to 30% we will start the process of finding a donor and getting him a transplant.  Like I said, it could be months, it could be years. If we start the process at 30% then we can do an elective transplant with a living donor. He won't have to wait on a list or wait till his function is so low that other organs begin to fail. We will avoid dialysis, and get him a new kidney.

So, here's the plan. Get rid of the C.diff. No more cell cept. It hasn't worked yet and it has had him so weak that he is constantly sick. Luke will only take his Ace Inhibitor, which is believed to stop the progression, and diuretics to manage the swelling. We will test his function every couple months and move forward as the tests suggest.

For now we just want to go home. Luke misses school and his sister.  Alexa has pretty much moved in with Nee and Pa. They watch Dancing With the Stars together and Alexa is running her own hospital for stuffed animals out of their family room. We are so thankful for the flexibility at Nee's job. A big thank you to her bosses for letting her do so much from home! And Thank you to Nee Jojo for hanging with Luke so I could take Alexa Trick or Treating.  Thank you to everyone who has reached out. Our family, friends, and the families at St. Irene. It really means a lot to us to know that we have so much back up and support.

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

We're Home!

Luke was released from the hospital yesterday.  He was thrilled to go straight to Nee's (Grandma's) House  to see his cousin, Nicholas, who is in town from California.  What a great way to forget about the hospital and just play and have fun!

His belly went way down an his knees and ankles are completely free of any swelling or bloating.  His eyes were still pretty swollen when we left the hospital, but we are continuing the diuretic treatments at home, and have already seen some improvement in his eyes this morning.

Luke is still relapsing, but we are giving the Cell Cept a good 6 month trial, so we may be dealing with swelling and bloating for a while, as we pray that the Cell Cept will put Luke into remission.  We will be following up with the Nephrologist on Wednesday, and I will post again at that time.

Luke is so happy to be home, and we are hoping that any future swelling will not land us back in the hospital and can be dealt with at home.

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

Diuretics at the Hospital

After a couple weeks of carrying around extra fluid the oral diuretics that we started using on Friday did not work.  Luke woke up this morning with eyes swollen shut.  I called the Nephrologist and told him Luke needed something else, he is on day 6 of taking 3 different diuretics and he is still waking up like this.  The Neph explained that when you are as bloated as Luke, sometimes it is hard for the intestine walls to absorb an oral medication.  Luke was admitted into Central DuPage Hospital early this morning and is getting diuretics through an IV.  We will definitely be here over night.  The Neph is planning 2 doses and they need to be 6 hours apart.  Hopefully the 2 doses are enough, but we will see after the second one if the weight has come off.  Let's all pray that 2 is enough because Luke is very upset to be sleeping here tonight, and has asked repeatedly to go home.  He took a nap from about 12 to 2 and when he woke up he asked if he had slept for a night yet, because then he could go home.

Please pray that Luke continues to be strong and breeze through whatever may come next.

The Latest on Luke

Good News: Luke has started Kindergarten and loves it!! He has his moments when he misses mommy (and mommy misses him too!) but for the most part he loves it and looks forward to going each day.

Bad News: Luke already missed a day. Friday morning he woke up and vomited. His eyes were nearly swollen shut, and his belly was so swollen that no pants or shorts were comfortable on him.  He has gradually swelled up from 60 pounds to 75 pounds in the past week.  He is relapsing pretty bad and spilling as much protein as our test strips will test for.  After getting in touch with the Nephrologist it was decided that Luke would take diuretics to release the extra fluid he is retaining. We started the diuretics last night and we are hoping for some signs of relief for him soon.  If the diuretics are not working by late afternoon we will need to admit him to the hospital to get the diuretics in an IV. So, we are praying that the oral medication works and Luke is feeling better soon.  If you refer back to my posts "The Difference a Diuretic Makes" and "My Eyes Aren't Workin" you will see that we have not used diuretics since Luke was 2.  They worked well then and we are hoping they work well now.

Luke is still on antibiotics, and we restarted the Cell Cept a couple of days ago. I am realizing now that the antibiotics are not the magic cure I thought they would be.  It seems to me that it is actually the onset of antibiotics that usually puts Luke into remission.  The antibiotics are done in a couple of days and my prediction is that the next time Luke needs them, whether it be an ear infection, or pink eye, or whatever normal childhood illness he picks up, they will give him an antibiotic. The onset of it will put him into remission and then the remission will fade into a relapse, unless the Cell Cept starts to work.  We shall see.

Please pray that Luke continues to be strong and breezes through whatever may come next.

Pneumonia, Antibiotics, and Kindergarten!

Luke has had a rough couple of weeks.  First he got Hand, Foot, and Mouth Disease. It is a nasty virus that comes with fever, vomiting, and sores that look like Chicken Pox.  He got it bad, and there are still marks on him from the sores.  Alexa got this virus too, but she had about three sores and only ran a fever for about a day.  About 5 days after we were sure he was better he started running a fever and vomiting again.  This time the Pediatrician said it was a virus and needed to run its course. Alexa got a touch of the same virus.  She ran a 99.9 for about 8 hours and was back to playing ponies the next day.  Four days later Luke was still running a fever, that Tylenol would not break, still vomiting, and now coughing a horrible cough that scared me enough to bring him to the ER.  In the ER they found he had pneumonia and his albumin (protein) levels were very low.  He has been relapsing and spilling protein since his biopsy in May.  The Cell Cept (medication started in May after his biopsy) has not yet worked, and was hurting his chances of fighting off disease.

The ER doctor along with Luke's Nephrologist decided to take him off the Cell Cept to give his body a chance to fight the pneumonia. He was given antibiotics intravenously, and breathing treatments to help him breathe and clear up his lungs.  It was also decided that he would need intravenous antibiotics for the next couple days as well. Regular oral antibiotics were not strong enough for him at this point.

So we were released form the ER with an inhaler and appointments to see the pediatrician for shots of antibiotic. I was scared and worried about my son, but at the same time...I was thrilled!  Why? Because luke was off kidney medication and on some super strong antibiotics.  If you've read my past posts you will remember that antibiotics always put Luke into remission.  The day after the ER Luke was swollen in his eyes and belly, and his protein was sky high. He received one more shot of antibiotics and did not need the second shot, they determined he was strong enough to take regular oral antibiotics to get rid of the rest of the pneumonia.  Two days after the ER Luke was not swollen at all and his protein had come way down. ANTIBIOTICS!!!! all he is on is antibiotics!!!!  And he looks and feels the best he has since May.

So what's next?? We met with the pediatric nephrologist yesterday.  I had a lot of questions and unfortunately so does the nephrologist. Luke is still a rare case and they have never seen this type of reaction with antibiotics.   The Neph is on board with giving more antibiotics a shot, but as we all know that cannot go on forever.  We decided to give Cell Cept one more chance along with the antibiotics.  This particular drug usually takes about 6 months to work and we need to give it a real chance.  Cell Cept is a last hope.  The next drugs to try after Cell Cept are "drastic," and "come with serious side effects." According to the Neph, "There are no good answers." Luke is still running on 100% function, but the 100% is coming from 50% of his kidneys.  The working halves of each kidney are working over time to compensate for the 50% that are not working.  We are hoping that the scaring has halted (which is why he takes an ace inhibitor), but can't know for sure, and the Neph has warned us that he could some day be dealing with chronic kidney failure.

So for now Luke feels great (antibiotics), and is starting Kindergarten in 11 days. I know the minutes and seconds too, but won't bore you with the details.  Alexa and I will be lost without him.  We cannot believe he will be gone all day, everyday. He is ready though, even told me he can't wait to ride the bus....bus?  We'll see about that!

Please continue to pray that Luke is strong and breezes through whatever may come next.

Biopsy Results

Luke's Biopsy went smoothly and we got to go home the same night as the procedure.  It's good to be home, but hard to keep a 5 year old boy on the couch.  Luke cannot bump his back for 10 days.  So, this means no climbing, running, jumping, or horseplay, this should be interesting!

On Thursday we received the results of the biopsy.  As I posted previously the reasons for the biopsy were to see if Prograff (the medication Luke has been taking for 3 years) is hurting him, and to see if we are still dealing with same diagnosis. The surgeon called me on Thursday and said that half of the Glomerular filtering units (small holes) on Luke's kidneys are terribly scarred.  The doctors are assuming that the Prograf did this to him because 3 years ago when he had a biopsy there was no scarring at all. Of course, they cannot be 100% sure if the Prograf is to blame, but we are taking him off Prograf anyway.  The only other explanation is that the disease was progressing these last three years and caused the scarring.  I find it hard to believe that it was just the disease progressing because Luke has been so healthy and happy.  No swelling, and up till 6 months ago he was, for the most part, in remission for 2 1/2 years.

His diagnosis is still Nephrotic Syndrome, and they are still calling it Minimal Change (no change to the kidney) despite the scarring.  When I asked how we could still call it Minimal Change the doctor said because half the kidneys are still untouched and he has so few symptoms. In other words they don't know what to call it.  When inquiring further about the scarring the doctor told me that it is permanent damage and we must stop the scarring because now he's only working with 50%.

Once again Luke is an enigma.  The doctors are baffled to say the least and it is extremely frustrating to have most of my questions answered with, "I don't know, we have never seen this before," "we aren't sure, Luke is a rare case," and my personal favorite, " well... that's just not typical..."

The doctors are amazed at how healthy Luke seems to be.  He is never tired, eats like a horse, is active, and has grown 3 inches in the last month and a half!!!  And here's the real kicker... He has 100% kidney function!!!  The kidneys are filtering incorrectly and are "scarred beyond belief" but are functioning 100%! Thank God! The doctors also have never seen Prograf do this to someone's kidneys, especially when his levels were never toxic.  He was given regular blood tests to test the levels in his blood and it was never toxic. And then there is the antibiotics.  Every time Luke is given an antibiotic, whether it be for an ear infection, or most recently, strep throat, he goes into remission. When I point this out to the doctors, which I have done on several occasions, they say they have never seen it before, and that they don't give antibiotics to induce remission.  So, I understand that this is not "typical" but it is a fact! It happens!!  I'm not trying to get the doctors to write Luke a lifetime supply of Amoxicillin, I just want them to think about it and consider what this might mean.  Is there an infection somewhere that he is constantly fighting??  It must mean something!

On Friday, May 18th there is going to be a conference to discuss Luke's biopsy.  Until then he is starting a new medication called Mycophenolate, or Cell Cept.  This is another transplant drug and is also used for Crohne's Disease.  Just like Prograf it will turn off the aspect of Luke's immune system that is attacking his kidneys.  Transplant patients use this drug to stop the immune system from attacking the new organ. The problem here is really with Luke's immune system.  The immune system is working too hard and needs to back off of the kidneys. Our pediatric nephrologist also wants to put Luke on an ace inhibitor.  While this is usually used for high blood pressure, it is also used in kidney disease patients to stop the progression of the disease.  Like I said before, the scarring cannot continue, and while we are hoping that stopping the prograf will halt the scarring, we cannot be sure.  We are starting the Mycophenolate today, and the ace inhibitor will be discussed at the conference on Friday and if there is a consensus among the team of specialists then we will start an ace inhibitor at that time.

LUKE IS HAPPY AND FEELS GOOD!!! I will post again after Friday's conference and give an update on Luke's remission, or lack there of.

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

New Biopsy Date

Luke's biopsy has been rescheduled for Tuesday, May 8.  While we are excited to get this done and over with,  it was nice to have another two weeks to prepare ourselves, and Luke is now able to participate in his school's field day this Saturday!  Luke had strep throat last week, which is why we had to reschedule. He is now on antibiotics, which end right before the procedure date, so the odds of him being sick again are very low.  He is scheduled for 9 am.  The procedure requires 12 hours of observation, so we should be able to go home by 9 or 10 in the evening.  It's late, but way better than sleeping in the hospital.  We will be in the city by 7:30 am for pre-op blood work (oh boy, Luke's favorite!) and then to the biopsy at 9:oo.  I will do my best to keep everyone informed.  If you would like more info on what goes on during the biopsy you can read my posts from the biopsy he had about 3 years ago.  Here and here I explain in detail how the biopsy will happen.  Thank you all for the kind words and prayers. Luke amazes us everyday with his ability to endure and adapt.

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

Biopsy Postponed

Luke was scheduled for a kidney biopsy early tomorrow morning. The biopsy is being postponed due to Luke having a fever today. We should find out in the next couple days when it will be. I will post at that time.

Nothing is Typical

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.

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.

Happy Birthday Luke!!!

Luke is 3 today, and he is doing really well. His protein is not negative yet, but it is getting there. This is a big birthday for him because a year ago we were just starting to figure out that something was wrong, and the months that followed were very hard for Luke. It has been a long and trying year, and he has come out of it stronger, smarter, braver, and healthier. Luke is a good boy. He was definitely babied and a little spoiled while he was sick and on those horrible drugs. At the time we just wanted him to be comfortable and did not worry about how his behavior might change due to the circumstances. He is better now and rarely needs to be reprimanded, is very helpful, loving, and caring. There are times when I am talking to him that I wonder if he is turning 3 or 10! Last night at dinner he exclaimed, "Mom, this chicken is AWESOME!" I thought wow he is definitely not a baby anymore.....

Speaking of babies...Alexa is 10 months!! She is mobile and getting around a little too quickly for me. She is into everything and can really give Luke a run for his money. She is stubborn and gets what she wants!! She is eating all table food and LOVING it. In 2 months we will be celebrating her big day.

The photo of the two of them together was taken a little less than a year ago when Luke was very sick and very swollen, and Alexa was a newborn. The individual photos are what the kids look like today. What a difference!!

I am hoping that in the next couple of months I will be able to post something about remission, so stay tuned!

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

Good Bye Summer

Luke continues to do well on the Prograf. His protein has dropped and he has not swelled in a very long time. If I did not test his urine every morning I would never know that anything was wrong with him. He is 100% except for the protein in his urine, which is still high, but not as high as it used to be. We are praying that it just continues to drop until it is gone and he is in remission.

Our summer is coming to an end. Luke, Lexi, and I were made aware of this on Monday when we went for our usual morning walk around our neighborhood and there were no kids playing outside. Everyone had gone back to school. While I am looking forward to all that the fall and winter have to offer (both kids' birthdays, the holidays....) I am nervous about the upcoming flu and cold season, and the long winter ahead of us. Luke was not sick all summer. Not one fever, cold, or stomach bug, and we travled and went to all kinds of public places. I want to say it is because he is stronger, but I have a feeling that the weather had something to do with it. We will just have to go back to washing hands like crazy, a lot of sanitizer, and staying in a little more. Obviously, as we know, things could be much worse.

Luke will most likely start preschool after Christmas if not next fall. He is 3 at the end of September, so he did not make the cut off for this fall, but I think that is a blessing because of the flu season and the meds he is on. He does go to Gymboree once a week for 45 minutes, which is so good for him, and I think just the right amount of time with the other kids.

Lexi is going for her 9 month appointment on Thursday. She is eating almost everything now, and has become very mobile just over this past week. She is currently doing an army crawl (see movie), and I'm sure will be full on crawling within a few weeks. Her and Luke get along great, and love spending their days together. She thinks he is just the greatest, and he likes to watch her and take care of her. He tells me right away if she gets a hold of something that could be dangerous to her or a toy that is not hers....wait, is that telling on her or taking care of her?? Let's just say he takes very good care of her!

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

The Outlook is Positive

Since our trip to California things have been HECTIC!!! This is my excuse for not posting in such a long time. In the past couple of weeks Luke and Lexi have both started Gymboree classes, Sean had his appendix out, we went to the Dells over the 4th of July weekend, and have been swimming and playing outside like crazy!!! Luke is still looking and feeling good. His last blood test not only detected Prograf, but there was too much. We found this out right after we saw a drop in his protein levels (AWESOME NEWS!!!!!). The nephrologist said the level was too high and a bit dangerous so we had to lower it. That made me a bit nervous because when we saw the protein go down we thought the medicine was finally starting to work, but had to lower the dose, so I fear it may not work any longer. His protein is still lower, but we need to see it continue to go down to trace or negative before we can call it remission. Luke's next blood test will be this Thursday, and I continue to test his urine everyday.

Alexa is growing extremely fast and wearing size 18 months! She will be 8 months tomorrow! She is very long and the doctor says her height is on track with a one year old!!! She is eating solids, some table food, and sitting up all by herself. She does not crawl yet but will roll the whole length of the family room to get to Luke or a favorite toy. Her smile is irresistible and she laughs a deep belly laugh that is contagious. Luke loves making her laugh and she is thrilled to get any attention from her big brother.

Sean is well and healed from his surgery. The weekend of Father's Day he had stomach problems all weekend and ended up in the ER on Monday morning. He was in surgery a couple hours later. We are glad it did not rupture and he is back to his old self already.

We are heading to Wisconsin this weekend for another short vacation. We will be joined by baby Nicholas, Luke and Lexi's cousin from California. We are all very excited, especially Luke, who fell in love with the lake in the Dells, and cannot wait to go in another one!

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

No News is Good News

I know it has been a while since my last post, but there has not been too much to share. Luke's last blood test showed Prograf in his blood, which is reassuring to us that this drug could possibly work. Luke is urinating more and needs diuretics a lot less, this of course is good news, but the protein in his urine is still as high as the test can test for. We will continue with the Prograf for a couple of months and pray that we will not need to go onto the next drug which is a chemo drug.

Luke is still in good spirits and not at all held back by his disease. We were in California this past week, we had a great time, but learned that traveling with a two year old and a 6 month old is more work than it is worth. When boarding the plane in Chicago Luke revealed that he is terrified of flying. I had no idea. He threw himself on the floor and was screaming while all the other passengers walked past us to bored. A member of the flight crew talked him into boarding and we somehow made it to California. Luke's new found emotion, fear, reared its ugly head again in Disneyland when Luke refused to go on many of the rides. His favorite parts of the day were meeting Mickey Mouse and having ice cream. The day before we were to fly home Luke got a fever and complained that his ear hurt. He had been on a low dose of antibiotic, so I was surprised that he could be getting sick. Knowing full well that you cannot fly with an ear infection I had to get him to a doctor to look at his ears. Our host for the week, Uncle Nicky, took Luke and I to the nearest emergency room and on the way Luke puked in Uncle Nicky's car. The doctor ended up saying that Luke's ear was slightly red and swollen, but to fly home tomorrow before it got any worse. I was scared about the pain he might experience taking off and landing. The doctor said to give him Tylenol and make sure he drinks going up and coming down. As we were about to board the plane home I gave Luke the Tylenol and he immediately puked all over himself, Nee, and me. So now he would take off with no pain medication, great!! The good news here was that he walked right onto the plane and was not scared to fly anymore. Then when we took our seats he passed out right away, and never complained of any pain. We are home now and very happy to be here. I eagerly await Alexa returning to her old schedule, which I am sure will happen soon.

In other news, a very good friend of mine had a BBQ on Saturday and collected donations for Nephcure, a foundation researching a cure for Nephrotic Syndrome. We raised more money than I could have imagined and will be sending it to Nephcure in Luke's name. Thank you to all who donated. I am hoping to get more fund raisers going in the near future.

The pictures are of Luke looking a lot like his old self, and Luke and Lexi wearing the ears Nee bought them in Disneyland.

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