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.

Plan C

After meeting with the doctor last Monday we have decided to stick with Prograf.......only this time it will be given correctly. That's right, correctly. We think we know why the medication never showed up in Luke's blood. When we met with the nephrologist last week he asked us to bring the bottle of Prograf with us. I took the bottle out of the fridge and put it into a little cooler pack that I use for Lexi's bottles, because the sticker from the pharmacy says "REFRIGERATE." When we took the bottle from the cooler pack to show the nephrologist he looked at the bottle and said, "You keep this in the fridge?" Um, yea...that's what the pharmacy said. Not only did the pharmacy put a sticker on the information that said refrigerate, but when I pick it up the pharmacist takes it out of a fridge and gives it to me. The neph went on to tell us that the transplant doctors from Children's Memorial sent him a long email detailing the use of Prograf and said it should not be refrigerated. So in other words my 2 year old son , who is fighting a rare kidney disease has been taking very dangerous medication the wrong way for the last two months. It would have been longer if I hadn't said enough is enough and taken him off of it myself. This could explain the horrible diarrhea, diaper rash, and loss of appetite, which were the main reasons I took him off the prograf in the first place. If it had been working or even showing up in his blood I would have kept him on it to endure the side effects, but it was going right through him, I knew it would not be the solution to his problem. The pharmacy will be hearing from us.

As of two days ago Luke is back on prograf only this time they are capsules. So far there have been no problems at all, so let's just pray that this is the answer. Luke will also be on a low dose of antibiotic to protect him from infection, a very low maintenance dose of Prednisone, and diuretics as needed.

In other news Luke and Lexi have been out and about in the beautiful weather, and we are looking forward to a good summer with a trip to California to see baby Nicholas and Mickey Mouse the last week of May, and two trips to Wisconsin in July!

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

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.

An Expensive Bottle of Chocolate Syrup

Last week we found out that once again the Prograf is non-detectable in Luke's blood. The Prograf is flavored with chocolate and Sean and I are wondering if the "special" pharmacy we were told to go to is just selling us a $300.00 bottle of chocolate syrup (no worries...insurance covers it!) Anyway, Luke's dose has gone up to three times a day. It has proven to be quite a challenge because the doses need to be 7-8 hours apart and that means that one dose is either very late at night, or very early in the morning. Luke is very good about taking his "choco-licious" (a little name we made up for it), but when I wake him out of a dead sleep and try to shove "choco-licious" down his throat, he gets so upset that he ends up vomiting and doesn't get the medication at all. Instead of calling the nephrologist and having him suggest an IV three times a day (way worse than having to wake him up in the middle of the night), I have decided to try giving him a small glass of milk with the meds in it for the late dose. My thinking is that he will be so tired he will drink it and go back to sleep. He still uses a sippy cup and can lay down while he drinks, so this may work. Keep your fingers crossed! His next blood test is tomorrow, that is if we get the late dose in him tonight, because if we do not, then odds are it will not be in his blood come morning.

In other news, Alexa ran a fever all last night and will probably go to the pediatrician this afternoon. She has never had a single problem, other than hunger, in her 5 months of life, and was still a trooper all night long, just wanting to be held, and trying to sleep as much as she could. We knew yesterday that something was wrong because she was not her super smiley self. I think she secretly likes the extra attention from Mommy and Daddy, and may try to fake a fever next time she thinks Luke is monopolizing too much of our time!

We had an excellent Easter with both of our families. Alexa got to meet her Great Grandma and Grandpa Murray for the first time, and both Luke and Lexi made out like bandits when it came to Easter baskets. Anyone know what I can do with 9 pink and blue Easter baskets?

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

"My Eyes Arn't Workin!"

This morning I had to wake Luke up to take his medicine. This is not a pleasant task for me, but today it was much worse than usual. He sat up in bed, looked at me with two golf ball sized eyes, and said, "My eyes!" I was surprised to hear this because they have been swollen before and he has never said anything about it. "You are OK," I told him, and tried to get him to think about something else, like taking his medicine. He continued to cry and choked out, "My eyes aren't workin!" I realized then that the swelling had reached a new level of discomfort, and he could not open his eyes. After sitting upright for about 10 minutes the fluid started to drain a bit and he was back to seeing the world through slits, which suited him just fine. I knew he was content with the slits because he moved on to his next problem....his diaper rash. "I want to soak my buttsie!" was his next proclamation. The Prograf causes severe diarrhea, which in turn causes sever diaper rash. He has been starting everyday, and sometimes ending the day as well, with oatmeal baths, which sooth and calm his raw skin. In addition to the baths he uses soothing creams, and is sometimes given the chance to "air it out," which is scary for me, considering the new carpet, but well worth it.

My biggest concern with these side effects comes from the fact that Luke is going to catch on to the idea that he is sick. What I mean is that Luke does not know he is sick. Hard to believe, I know. The other day I was trying to get him to take his medication, and I told him that he has to take it because mommy does not want him to be sick anymore. He looked at me and said, "I not sick. No more throw up." he was referring to the stomach flu which he got over about a week and a half ago. So it dawned on me then that despite the blood tests, the doctor visits, the medicine, the swelling, the bloat, the diaper rash, and the slits that he is forced to view the world through.....Luke does not know he is sick.

We started another round of diuretics yesterday, and are hoping that he is feeling good for the Easter weekend. Alexa is well and growing like crazy. Every morning I look at her and think she is twice the size of the day before. She is the happiest baby I know and smiles and laughs whenever you look at her.

The pictures were taken this morning. They are hard to look at, but if you compare them to the first few posts, you can see that the "moon face" is going down a little because the Prednisone dose is so low. Look hard, this optimistic mom says it is so! I also notice that his thoughts are more clear and his imagination is more vivid when he is playing, and he is sleeping much more soundly, all because he is no longer in a "Prednisone cloud."

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

Still No Sign of the Prograf

This past week we were notified that once again Luke's blood shows no sign of Prograf. We have increased his dose and he is now taking three times more than his original dose. This new dose is really bothering his stomach, so along with the bloat he is also feeling a little sick. He is not eating much, and we pray that this medication will put him into remission soon.

Luke is going through a lot, but we know it can be worse, we could be on a donor list or taking far more serious drugs than Prograf. Luke's illness is teaching us so much about how fortunate we truly are. Because of this blog, and getting the word out about Luke's disease, so many people have reached out to us, and it is extremely heartwarming to hear from every single one of them. Whether it be a friend from years ago, or a distant relative, the encouraging words, positive thoughts, and prayers are not only appreciated, but are greatly needed. So thank you, thank you so much for thinking of my guy Luke.

The photos are of Luke with Luigi (a statue at my mom's house), and Lexi relaxing on Pa's shoulder.

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

A Hungry Boy

Luke finally stopped vomiting on Thursday. Late Friday I realized that his appetite was back. He was sitting on my bed watching Mickey Mouse, and I was trying to rock Lexi to sleep to no avail. She was crying pretty loud and Luke was trying to tell me something. He got frustrated and said, "Is she gonna stop?" I told him she would just give me a minute. She continued to scream and he continued to tell me something, which I could not understand. Finally he stood on the bed and yelled, "I'M A HUNGRY BOY!!!!!" He has been eating normal ever since and catching up on his sleep.

Luke did have the stomach flu, which we found out for sure on Tuesday at the pediatrician's office. On Thursday he had his biweekly blood test, and we did not hear from the nephrologist, which means his levels are good to continue the prograf. Also, on Thursday, Lexi received her four month shots. Thursday was a fun day..... The four month appointment went well for Lexi and of course Sean and I ended up discussing Luke at Lexi's appointment. Yes, Lexi tends to get over looked, but when it comes to doctor's offices that is probably how she would prefer it.

Luke woke up this morning with golf ball size eyes again, so he is back on the diuretic as of 11:30 this morning. We hope relief comes quickly and pray for an end to this frustrating and vicious cycle.

The photos are of Luke hanging by his "sick couch" where he spent most of his time with the flu, and Lexi gearing up for Easter.



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

The Difference a Diuretic Makes

The photo on the left is what Luke looked like on Saturday, the photo on the right was taken on Monday. The new diuretic delivered some much needed relief, but it seemed to have come with a price. On Saturday morning Luke received the new diuretic. On Sunday morning he looked like the picture on the right, but was vomiting all day and night. At first I thought it was the diuretic mixed with his Prednisone and Prograf, but have now come to realize that he had caught some type of stomach bug. Today, Tuesday, we are going to the pediatrician. I'm thinking it is the flu, but better safe than sorry. He has gone three days with no meds, which may have set us back with the Prograf, but will not hurt him in any other way. According to the nephrologist he Prednisone taper is at a low enough dose now that he will not suffer withdrawal symptoms if he misses doses. I am hoping we could just stop taking it, but of course we will do what the doctor suggests.

Luke looks really good, of course this is because he has thrown up everything in his body so there is no fluid to retain. I wish I could say this is what he looks like when he is not sick, but the truth is we do not know what he looks like. Since the start of this whole mess Luke has grown, and aged. The jump from age 2 to 3 is huge for a child, and their looks change during this time. So, when the Prednisone is stopped for good, and all the swelling goes away, we are not really sure what Luke will look like. Pa (my dad) once remarked that it is like he is frozen in time. This is truly how I felt. Like we were hitting the pause button until he went into remission, and then we could go back to our normal lives. This is our normal lives! I often have to remind myself to have him live his life as if he is not sick. I cannot keep putting things off and planing things for when he gets better, because it could be weeks, months, or even years. I need to teach him to live in the moment and do all the things we want to do when we want to do them.

Hopefully the flu subsides soon and no one else catches it! I do have to report that we lost Nemo. Luke has not even noticed, and even told Nee he has 3 fish?! Uncle Jimmy wants to buy a new Nemo, so maybe Luke will never catch on.

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

Not a Big Deal

This past week Luke has been very swollen and the diuretic has not delivered. His eyes are tiny little slits, and all black and blue, and his stomach is sticking way out. He is irritable and can't play like he wants to. I called the nephrologist yesterday and told him that Luke was very uncomfortable and eating almost nothing. When Luke is bloated he has no appetite. The nephrologist sent Luke for more lab work (good times!), and then prescribed a second diuretic to take on top of the first one. This new one is serious stuff! We need to push the bananas and orange juice to avoid loss if potassium, and watch him closely for dizziness and dehydration.

In addition to all this he has a little cold, and I'm not talking about the fish. He is congested, which doesn't bother him too much all day, but of course gets worse when he lies down to go to sleep.

Luke is still in good spirits, and barely cried at his lab work today. He has gotten two new trains out of the deal! He also ended up with 2 fish and a new tank instead of the glass bowl we originally had (thank you daddy!). In addition to Cold, we also got Nemo. I suggested that one of the fish was Lexi's and he gave his usual response to Lexi moving in on his fun..."Yexi is too yittle." Translation: Lexi is too little.

In other news Yittle Yexi will be eating food for the first time today. She is four months this very day and will get a teaspoon of rice cereal for dinner tonight. Let's hope it ends up in her tummy and not all over mommy!

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

"Mommy don't touch it, its not a big deal!"
-What Luke told me when I asked to see the boo boo he got from the blood work this morning.

Non-Detectable Prograf

Luke had his first bi-weekly blood test on Thursday. Sean was able to bring him this time because he is working afternoons. Sean reported that Luke was very strong and brave, and only cried a little. He has come a long way from having to be restrained due to kicking and screaming. The blood test had very peculiar findings. The nephrologist called the next day and said, "the Prograf is non-detectable, believe it or not, Luke must be metabolizing it very quickly." So now we will have to up the dose, and I am concerned that the side effects will now rear their ugly heads. It has been three days of the higher dose and Luke has vomited once. We are not sure if this was from another drop in the Prednisone or the higher dosage of the Prograf. All in all he is doing fine.

Tomorrow Sean is bringing Luke to get a new gold fish. We lost our last fish when we first moved to the new house. Since Luke has been asking again about the empty fish bowl we decided he could finally get another one. This morning Luke informed me that the fish's name will be "cold."

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

A Possible Cause

Luke continues to do well on the Prograf. The kidneys are still leaking protein, but the medicine is agreeing with him and he is feeling really good. Like I have said in the past, I love to write, especially for an audience, but no news is good news. This blog has done a lot for us in the communication department, but it has also led me to some interesting information about Nephrotic Syndrome that I had never heard of before. Of course, I am no expert by any means, but once you get into the support groups, and spend enough time in a nephrologist's office, you would think that Sean and I would have at least touched on every aspect of the disease that is ailing our little boy.

I was online reading about Luke's condition when I decided to google some key words to see if my blog would pop up. I had never seen something I had written come up in a search engine and thought it would be a neat thing to see. I googled "Luke" and "Nephrotic Syndrome." Yes, my blog did come up (very cool), but I also stumbled upon a very interesting article about a boy named Luke. The article was actually a letter written to Dr. Green. Dr. Green is an online doctor that you can write to about medical concerns and he will answer you back. Is Dr. Green actually a doctor? I have no idea, and would never look to an online doctor to treat myself or my children, but the letter and the response were both worth reading. The letter was from a concerned father whose son, Luke, had knocked over a bee hive and was stung 30-40 times. The boy got a terrible rash all over his body, and then got very high fevers. The father went on to ask Dr. Green if there was anything else he should be worried about. He was assuming that his son still had a high level of bee toxins in his body and wanted to know what else to look out for.

Dr. Green's response blew me away. With my mouth hanging open I read all the things that this boy could get from the bee toxins. One of the things that this particular Luke needed to worry about was Nephrotic Syndrome. WOW!!! I was, to say the least, in shock. Why so shocking? Well, this past summer Luke got stung twice in the hand and once in the side of his torso. He then had a horrible rash all over his body, and then high fevers for about three nights in a row. When he had gotten stung I took him to the ER because I did not know what was normal, and what was not. He had a little swelling around each sting, but no other symptoms so they said he was fine and sent us home. A little later he got a terrible rash all over his body. I took him to the pediatrician three times while he had the rash because it kept changing and never seemed to get better. At the first visit I was told he had Summer Eczema. At the second visit I was told he had Hand Foot and Mouth Disease. At the third visit I was told it was an allergic reaction, and I would never figure out what it was. We were given medicine, and the rash finally went away. A week later....high fevers three nights in a row. He had no other symptoms at that time, only the fevers. They tested him for Leukemia, which he did not have, and summed it up to his body fighting something off and then he was fine. Never were any of these issues linked together, although they were all in his chart, even the bee stings, because he went to the ER. I figured this was a bad summer for him and thought nothing of it. Then in September right around his 2nd birthday he got a virus and was vomiting with a high fever. All along we have thought that this was the virus that triggered his kidney disease, but never did we think the events of the past three months had also been connected.

We cannot know for sure if it was the bees or not. It would be bitter sweet to know the answer to this question. If it was the bees then Sean and I could put to rest the guilty feelings of wondering if we had unknowingly exposed him to something that had harmed his little kidneys. We have wondered about everything from vaccinations to formula to me skipping a prenatal vitamin or two while I was pregnant with him. We could also put to rest the thought that this could be genetic. We could stop worrying about Lexi getting it, and know that he can go into remission. On the other hand if it was the bees then we need to forever be afraid to play outside, and I might find myself dressing Alexa in a suit of armor to play with her friends! We plan to discuss these findings at our next nephrologist appointment. Not that this could help cure him any faster, but it definitely takes a load off of our shoulders.

In other news, Alexa is holding her head up and getting bigger and stronger everyday. Sean has started working afternoons. He leaves the house around 1:00 pm and gets home around midnight. Luke is loving all the playtime with daddy, but is not happy about mommy having to put Alexa to sleep, and not lay with him when it is time to go to bed. He says, "daddy do it!" as soon as I start to rock her to sleep, and I have to remind him that daddy is at work. Thank God Alexa goes down fast and stays down all night!

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

"Some people think that doctors and nurses can put scrambled eggs back into the shell."
-Dorothy Canfield Fisher

So Far So Good

We are on day five of the Prograf and so far, so good. We had one vomiting episode on Saturday (all over Nee and Pa's couch), but I am pretty sure it was due to the taper of the Prednisone again. He got very little Prednisone on that particular day, and ate a lot more than usual. Luke is not yet responding to the Prograf, but the Nephrologist says it could take up to two months.

The biggest obstacle for Luke is the bloating and swelling. When he reaches a certain weight he gets very uncomfortable and irritable. It is hard to watch him try to get on the couch or play with his trains on the floor, because he cannot bend and turn like he used to. This is when I give him the diuretic. The diuretic is very strong and makes Luke urinate out four pounds of fluid over night! When he takes it I need to change his diaper three or four times throughout the night to avoid leaking on the bed sheets. Then, when he gets down to a certain weight the diuretic needs to be stopped to avoid dehydration. If he looses all the weight over night, or too quickly, he could experience a type of shock due to the rapid loss of fluids. Once the weight comes off Luke feels like a million bucks and will run and play, get down on the floor with his trains, and take part in his new favorite thing to do....camping in his tent. The diuretic can not be used as often as he needs it, so unfortunately I need to let him reach that high number on the scale before I can administer relief.

I will continue to keep you all posted. As much as I love to write, it is a good thing when there is not much to say!

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

"May every sunrise hold more promise, every moonrise hold more peace."
-anonymous

A New Start

Luke is starting his new medication, Prograf, today. It took a few days to get it ordered through a specialty pharmacy that will compound medications. We are looking at this day as a new start for Luke. The Prednisone dosage is really low and getting lower every day. He will feel and look like himself again very soon, and has been in a great mood lately. We are praying that this medication works for him, and we can get on with our lives. I am at peace with the fact that he will have relapses, but as long as we have a medication that will put him back into remission I can deal.

I plan to keep you all posted on his progress with this medication, and any other progress or regressions that we may have. Since there is not much else to report on I will share with you a conversation that Luke and I had yesterday. Very funny....

I overheard Luke saying something to his sister over and over again. I asked him what he was saying and he said it louder so I could hear him. "Happy birthday Lex, Happy birthday!" As you all know Alexa was just born in November and has quite a wait until her birthday. "It's not Alexa's birthday," I told him. "Yes it is, where is the cake? Where are the presents mom, where are they?" Now he was starting to yell at me. "Its Lexi's birthday!" I told him he could pretend it was her birthday, but there were no presents or cake. He replied "Awww, poor Lex."

After talking in circles with him I came to realize that he had just watched an episode of "Mickey
Mouse Clubhouse" where there was a birthday party with cake and presents. I told him one more time that it was not Alexa's birthday, and then let it go. As I was walking back into the kitchen he said, "Mommy," "What?" I answered. "Happy Birthday! Mommy, its your birthday!"

This had me laughing all day. He also had me laughing earlier that morning. Those of you that know Luke very well know that he loves Thomas the Tank Engine, and all his friends. He has probably close to 50 of the trains, and they each come with a name and a story. He has all the names memorized and knows there are quite a few that we still do not have. I had been buying trains for him and keeping them hidden until he had a blood test, or something scary concerning the doctors. I found during one blood test that if I talked to him about the new train that was waiting at home for him he was so distracted that he calmed down long enough for them to stick him. So this particular morning I went into the bedroom with a syringe of medicine in hand. He held his lips together tight and would not take the medicine. I told him it was very important and if he did not take it they would have to do it at the hospital and give him another boo boo in his arm. (This is not a lie or an idol threat, it is actually what they would have to do if I could not get him to take the Prednisone orally.) He looked at me and said,"So, what's the new train's name?"

The photo was taken a couple of days ago. If there are sunglasses around Luke will put them on and then look at everyone in the room with a serious face. This kid knows funny.

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

"You can turn painful situations around through laughter. If you can find humor in anything, then you can survive it."
-Bill Cosby

Plan B

We got Luke's biopsy results today and they were what we were expecting and hoping for. Luke's kidneys showed Minimal Change. There is no scarring or damage to the kidneys. So on to plan B. Luke will now begin to take Prograf. Prograf, also known as Tacrolimus, is a transplant drug. It is given to patients who have received a kidney transplant to reduce rejection of the graft. In other words this drug attempts to stop the body from attacking the new organ. It works by suppressing one aspect of the immune system. Why this works for some Nephrotic Syndrome patients is not known for sure, but it does work for some, and puts them in remission.

Luke will need to get a blood test every two weeks. His levels have to be within a very narrow margin for the medication to be safe. In other words there is not much difference between the blood level at which it is safe and the level at which it is not. The side effects are not too scary if we are on top of things. If the medication is given every 12 hours and Luke gets his blood tests at the same time every two weeks, and his levels are safe, then the worst we need to watch for are swelling, vomiting, headaches, high blood pressure, and risk of infection, because of the weakened immune system. Sounds bad, but for Luke this is cake! Long term use of this medication gives higher risk of cancer later in life and could worsen kidney function.

Luke will begin this medication on Wednesday because we needed to go to a specialty pharmacy and they cannot produce until then. Luke will also be taking a baby aspirin every other day to reduce the chance of a blood clot. And of course that lovely Prednisone is still on a taper, and will be until the end of march when he will remain on a very low "maintenance" dose for some time.

Luke has been in great spirits as of late, and the Prednisone is at a low enough level that we are starting to see his little face showing through. He has not been too bloated and all in all feelin' fine.

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

I hate to repeat a quote, but this is a very fitting one, and Lexi is screaming, and Luke REALLY needs to go to bed!

"Life is all about how you handle plan B."
-Anonymous

We Thought It Was Allergies

Since the beginning of this blog people have been asking me how we knew Luke was sick, and how was he diagnosed. Since there is no news about his current condition until Monday, I figured this post could be about how we entered into the world of Nephrotic Syndrome. For Sean and me it is a world of on-line research, support groups, medication fact sheets, and constant discussion about where this came from and what path should be taken.

On October 20, 2008 Luke woke up with swollen eyes. We figured it was allergies because his eyes had swelled before after playing outside, and we had just turned on the heat for the first time in our new house. We figured the vents were blowing out dust and stuff that he could be sensitive to. His eyes looked better as the day went on, but were swollen again Tuesday morning and then again on Wednesday. On Wednesday I called the pediatrician and we got an appointment that afternoon. At the time I was in my 9th month of pregnancy and Sean was working nights, which was nice because he could help with Luke all day (I was so tired!!) and go to the doctor with us.

The pediatrician agreed that it was probably allergies, but wanted a urine sample just to be sure. He said that about a year ago they saw a kid come in with swollen eyes and it ended up being a very rare kidney disease. We thought nothing of it, the nurse put a little bag on Luke and we were to return the bag once he had urinated in it. The doctor also gave us a prescription for children's Zyrtec, to help with the allergies, we never filled that prescription. After the doctor we stopped at Target to pick up a few things. While we were in Target Luke and I made eye contact and all of a sudden I felt a pit form in my stomach. I knew, looking at those puffy eyes, that something was very wrong. Sean thinks mother's intuition is just a card I play when I want to win a debate over what to do with our children. I am here to tell you that it is very real.

Luke did not urinate in the bag until dinner time. This was strange to us because he guzzles juice and milk all day long. We did not know it at the time, but this is a symptom of Nephrotic Syndrome. In hindsight he had been urinating less and I took that as a sign that he was ready to potty train. We brought the sample back to the doctor and Sean ran it in while Luke and I waited in the car. He was gone a long time and then came out to tell me that the doctor wanted me and Luke to come into the office. We were ushered into an examination room and told that the doctor would be right with us. Sean and I were annoyed and just wanted to get home, what were we waiting for? The doctor came in after a few minutes and told us that Luke's urine was loaded with protein. Sean asked how much protein, and the doctor said it was as much as the test could test for. He told us his kidneys were not functioning correctly and that we needed to go straight to the hospital.While we both felt like we had been kicked in the stomach we still had no idea of the beating we were in for. This was only the first kick in the stomach.

The ride to the hospital was silent. I asked Sean what he thought, and he said we should pray that there is nothing seriously wrong with Luke. When we got to the hospital the pediatric nephrologist had gone for the day, but would talk to the staff in the emergency room over the phone, as they examined Luke. They took blood, and tried to get another urine sample, but Luke was not urinating, and Sean and I refused a catheter. We still were not grasping the seriousness of the problem. We were given a lot of information, which was not retained, at least not by me, and were sent home with a prescription for Prednisone. The doctor at the emergency room said that the Prednisone was a steroid and might make Luke hyper. HYPER? REALLY? HYPER? That's all he could tell us? The medication made Luke an absolute mess, he was anxious and shaking, he would wake up in the morning and lie in bed and cry. He would have screaming fits, throw his toys, and most of the day would not leave the recliner in our family room. He began to blow up and look completely different from his old self. That night I phoned my parents, who were in California for the birth of my nephew, to tell them what was happening. This was the first phone call of hundreds, I should have started the blog then, everyone wanted to help, but again we had no idea....

We finally got to meet with the specialist on Friday, October 24th, he diagnosed Luke with Minimal Change Nephrotic Syndrome. He told us that 90% of kids Luke's age respond to the Prednisone within 5-8 weeks. He said if your going to have a kidney problem, this was the one to have. We left feeling relieved and thinking that in 5-8 weeks he would be better. Three weeks later Alexa was born, Luke was still sick and still acting out from the Prednisone. My 3 night stay in the hospital was very hard for him, he had the normal 2 year old separation anxiety, but the medication magnified it. When I returned home he would not let me out of his sight and did not want me caring for the baby. Again, normal 2 year old reaction, but the screaming and crying were out of control. After being on the medication for about 6 weeks he must have adapted to it, because he began to behave like himself again. This is also about the time we began to realize that he might be in the 10% of kids who do not respond to Prednisone, he was diagnosed as steroid resistant, and again we were kicked in the stomach....a biopsy would be needed. Which brings us to today, we now know the seriousness of what we are dealing with, we have been kicked several times, but are still fighting.

The photo with the pumpkin is about 2 weeks before Luke was diagnosed. The other photo is from his second birthday, one month before being diagnosed.

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

"It is not the load that breaks you down - it is the way you carry it."
- Lou Holtz

Home Sweet Home

We are home, and very happy to be here. Luke's biopsy went smoothly, and for now all is well. The nurses and doctors at Children's Memorial were unbelievable, and for the most part, made
Luke feel very comfortable. My fears of him being wheeled away from us and traumatized for life went unrealized. It turns out that coming out of the surgery is way more dramatic than going in. When we finally got to see him he was confused, irritable, and frustrated. He didn't know where he was or even who we were. It was hard to see him like that, but he came out of it within about 10-20 minutes. We needed to stay over night, just because he is so young and the 12 hours of needed bed rest were easier to enforce at the hospital than at home.

The photo on the left is of Luke and his dad in the hospital's lobby before the procedure. He was so excited to walk in and see Melman (giraffe from "Madagascar.") chillin' in the lobby. We also found it very interesting that Melman is a Sox fan! The photo on the right shows Alexa hanging out with her cousin Nicholas. The two are only three weeks apart and got to spend two whole days together at Nee's house while we were at the hospital with Luke.

We will be seeing Luke's Nephrologist on Monday afternoon for the biopsy results and to discuss what should happen next. Until then we would like to forget about doctors and the fact that Luke is sick. There is no point in worrying for now, because there is nothing we can do until Monday.

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


""" " "" Worrying gives the illusion of control. You think that by imagining all the worst things that could happen, you can have solutions in place beforehand. But the reality is that since you’ll never think of all the possibilities, your worrying work is never done."
-Kathleen McGowa, author

Biopsy - Searching for Answers

Luke's biopsy is tomorrow, February 9th, 8:30am, at Children's Memorial Hospital in Chicago. To say we are scared is an understatement. From what I understand, they will not need to cut him open. They will first give him an ultrasound to locate exactly where the kidneys are. They will then use a special kind of needle, which is inserted into his back and into the kidneys. The needle then pulls out a piece of the kidneys that is about the size of the lead in a mechanical pencil. The procedure is to take between 15 and 30 minutes. This does not sound too bad, right? Right! I am not too worried about the procedure itself. A needle in the back is a small price to pay if it means getting him the proper diagnosis and the proper treatment. The scary part is the doctors taking him from us and bringing him to the procedure "suite" (yes, they call it a suite). He is not going to like that one bit, Luke is not big on leaving his mom, especially to go with a stranger. And by now he knows what a hospital is, and what goes on there, no matter how many cartoon characters are plastered on the walls! The nurse has assured me that he will immediately get sedated as soon as they are in the procedure suite.

The Nephrologist is fairly certain that the biopsy will show that Luke's Nephrotic Syndrome is Minimal Change. This is the type of NS that most boys between the age of one and two years usually get. It means there is little to no change in the kidneys. If the biopsy finds that it is not Minimal Change then it could be FSGS, which means there is scaring on the kidneys, and is a bit more serious. Of course the biopsy could also find something completely different. There are many forms of NS, depending on all sorts of factors, so who knows what we may find.

We are hoping to come home tomorrow night and not need to sleep over. The nurse said it depends on how he is doing. I will be armed with trains, books, stickers, crayons, games, and whatever else it takes to get him through yet another day in a hospital bed.

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

"Life is all about how well you handle plan B"

-Anonymous

This Too Shall Pass....

This is Luke's sister, Alexa. She must be mentioned in this blog because without her angelic cooperation we would be in big trouble. There have been many times when she is plopped into the crib or stuck in the swing while we deal with Luke. She stays with Nee (Grandma Denise) whenever Luke has a doctor appointment or needs to go to the hospital. While she may not always cooperate with Nee, she is a perfect angle when she is home, sleeping through the night and taking three hour naps every morning!! I am pretty sure she behaves so well because she loves Luke so much. Every time he looks at her she smiles and coos.

This past weekend we had Luke in the emergency room for a fever and some vomiting. We were told it was a virus that was going around and should be gone in 3-5 days. He was fine on Monday and Tuesday, but began to vomit again on Wednesday. I took him to the pediatrician on Thursday, and since he has no other symptoms besides the vomiting, we have come to learn that this is all a side effect of tapering off of the Prednisone (steroid that did not work for him). This morning he vomited again, and I called the Nephrologist because I was concerned that he was not getting any medication because he was vomiting every time anything went into his mouth. The Nephrologist said to give him a full dose of the Prednisone and wait to see if he keeps it down. If he does not keep it down he will need to go to CDH and take it through an iv.

Prednisone is a very strong drug and while he needs to come off of it slowly, he still needs it. He has had some withdrawl symptoms, such as insomnia, and anxiety. The Neph also decided that he needed a slower taper, something Sean has thought for about a week now, so now his dosage will change a little. We have learned from talking to other parents that the Moon Face starts to go down when you get to a certain level of tapering. We will be at that level next week and are very excited to see his little face again soon!

I am truly touched to see how many people are reading this blog. Sean and I do believe that the more people that pray for Luke, or even just think positive thoughts about him, the better off he will be. Luke is blessed to have so many people that love and care about him.

There will be another post detailing Luke's biopsy sometime this weekend. Not sure when I will get to it because this weekend Luke and Alexa get to meet their cousin Nicholas from California!

FYI - If anyone tried to click on the link for Nephcure, it may not have worked. I have fixed it and you can go back to the post, "Where We Stand," and click on it now.

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

"The only people who think children are carefree are the ones who've forgotten their own childhood."
-Orson Scott Card, author

Where We Stand

Luke has a rare kidney disease called Nephrotic Syndrome. It means that his kidneys are leaking protein into his urine, instead of putting it into his blood. He is extremely bloated and swollen. He has gained close to 20 pounds of fluid and carries most of it in his stomach. His medication has given him what doctors call a "moon face," or "facial mooning," which means his cheeks have swelled up and his face is very large and round. His eyes are swollen as well. There is no cure for the disease, and doctors do not know what causes it, it could have been triggered by a bad virus he had in September, but it could also be genetic. Like cancer, you can fight the disease with very strong drugs and hopefully go into remission. Relapses are close to inevitable because they are caused by viruses, colds, and infections. The only ray of hope is that he will out grow the disease before his teen years. Luke has completed his first round of drugs, a steroid called Prednisone, and did not respond, so now he will get a biopsy next week, and then try a new drug. All the drugs are very scary and have horrible side effects.

Despite all of this, Luke is the happiest guy I know. Besides some mood swings here and there (a side effect of the steroids) he laughs, plays, kisses his baby sister, repeats everything we say, dances, sings, and most important of all keeps us laughing all day long. His favorite movie is "Madagascar," and the other day he told me his breakfast was "crackalackin!" He has even started taking his medications directly, instead of hiding it in his milk. He has endured blood test after blood test, people poking and prodding him, and has proved to be a strong little 2 year old.

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

To learn more about Luke's disease go to http://www.nephcure.org/ or google "nephrotic syndrome"


"The pressures of being a parent are equal to any pressure on earth. To be a conscious parent, and really look to that little being's mental and physical health, is a responsibility which most of us, including me, avoid most of the time because it's too hard."

John Lennon