In Heaven

Ethan has been doing very well these past few days, aside from a few stomach aches, he is feeling better and stronger each day. Jeff and I asked Ethan how he was feeling yesterday and he looked at us with this big smile, and said" In Heaven"!  We couldn't help but laugh at his description, not sure he understood the full meaning. So we asked him what he meant. He said he was very happy that he was done all his medications and most importantly that school is finished tomorrow.

 Yes, he is still the same Ethan!!! 

It has been 4 weeks now since Ethan has been off prednisone, each day we marvel at the small changes that are happening to him. It is so awesome to see the joy and life coming back into his eyes and the desire in his heart to get out and enjoy life. When he is on prednisone, he lacks the desire to do anything, and if you want to go somewhere with him, you had better prepared that it might not be as enjoyable as you had hoped!

When you are in the moment of being a caregiver, essentially you live in survival mode. Which is how these last 8 months have felt to me. Living from one relapse to the next is exhausting. I did not realize how extremely tired I was, emotionally, physically and spiritually. It is our prayer that this summer will be a restful one, filled with lot's of great memories, good health, and an overabundance of JOY!

Last Day!!!!

Today is the last day that Ethan will take his Chemo pill, YAHOO!!!! We are so very excited, and yet nervous all at the same time. Ethan was beyond excited that tomorrow he will wake up and not have to take ANY pills!  Ethan's asthma is acting up again, he was up coughing a lot last night, now that he is off prednisone, he will again have to have a puffer. Every time he is off prednisone, we try and see if he can do without the puffer, but it is apparent that he cannot do without one. 

Adam had a really rough start to the week, his allergies were very bad. His eyes and eyelids got so swollen and red, they reminded me of Ethan when he was first diagnosed. Adam could hardly see out of his eyes as well, I did panic and tested Adam's urine, just to be sure. He did not like this idea!!! Thankfully, he was fine, negative, Adam has never, ever had protein, so one less worry. After a trip to the doctor, and some prescription eye drops, Adam is doing much better! 

Allergies

Allergy season is upon us, Jeff, Adam and Ethan are all sneezing, with red itchy eyes.  I am very thankful that I do not suffer from seasonal allergies, it sure is not fun!!!  Ethan's protein has been going back and forth between trace and negative these last few days. He still complained about going to school, he wanted to call home each and every day, but this time it was due to his allergies.

 Our doctor once called Prednisone a "Miracle Drug", Why? You may ask? Well, we were told that it is used to treat many different conditions, such as allergies, rashes, asthma, to name a few. Ethan does suffer from mild asthma, eczema and allergies, but when he is on prednisone, he does not need any asthma medication, and his eczema clears up totally. His allergies seem to lessen but not completely go away. Now that Ethan is off prednisone, he is experiencing a big flare up in all 3 areas.  It has been awhile since we have seen him experience this as he is usually on prednisone, he has relapsed every summer since his diagnosis, except last year. 

Last summer, he just finished his prednisone treatments at the end of July, he then started getting protein at the end of September, and finally having to start prednisone in November 2008.

As allergies can stimulate the immune system and potentially cause a relapse, that is what we were told anyway. We are still hoping and praying that Ethan will have a great summer off all medications. Only 7 more days to go....

10 more DAYS!!!

Wow, I can hardly believe that in 10 more days, I will give Ethan his last chemo pill. He is very excited, that he will soon not have to take any pills. Today he was negative for protein, which is awesome!!!! He still woke up with a stomach ache, along with his usual, I don't feel well enough to go to school routine. He has managed to stay at school the last two days, I am so proud of him, yesterday he said he was so tired, he felt like he could fall asleep at any moment. Today, he said he barely made it through the day. When I left his classroom this morning, he followed me out to the hallway, asking if I could take him home. I find these moments very hard, they break my heart. I don't want him to come home all the time, lest it become a bad habit, but on the other hand, I know he doesn't feel well. I can't help but wonder if he wasn't on so much medication, would he enjoy school more? I am praying that as the school year draws to a close that he will be able to finish the year well, in every sense of the word. Thank You for your continued prayers.

Feeling Better

Must have been all those prayers!!!! This morning Ethan's sample was back down to trace, still not negative but better than yesterday. There are still some changes in his body and urine that concern me, make me worry that we are not out of the woods yet. But for today, I will rejoice in the fact that he is feeling better, and he is currently at school!!! 

Living with Nephrotic Syndrome is an up and down road, one day you can be up, celebrating that things are going well. The next day, you can be down, sad and discouraged that things are not going well. I struggle with what to share with people, my fear is that you will get tired of hearing about all these ups and downs. I know I get tired of going through them. What keeps me sharing about Ethan, is not my need for attention, but for the sole purpose of prayers for my son and family. I know that when we have asked God's people to pray, amazing things have happened, maybe not like we had wanted or thought it should be. But nonetheless, God has been Faithful!  

Prayer Request

It has been two weeks since Ethan has stopped prednisone, so it shouldn't surprise me that today I should find some protein in his urine sample. He has been going between trace and negative for the past 2 weeks. I have been noticing small changes over these past few weeks and even on the lower doses of prednisone that made me think that this might not be over. 

What are these changes? Ethan has been waking up in the morning and does NOT need to pee. Which makes it very hard for me to get a sample. This I now know is not a good sign, when on higher doses of prednisone, he would wake up many times a night and even early in the morning to use the bathroom. When I finally can get him in the bathroom to TRY and give me something, he produces less than a few ounces, again, NOT normal. This morning, Ethan, was again, complaining of stomach pain, which does happen when he gets protein in his urine. His eyes were also slightly puffy this morning, something that also has been getting noticeably worse over these last few weeks. On prednisone, his eyes, become, sunken with dark circles under them. He also has not been wanting to eat, which is another sign of a relapse, but also it could be from the Chemo drug, which also causes loss of appetite. 

Today's sample reads at only 0.3 protein, which is one level above trace and two above negative. Thankfully it is still low enough that things will hopefully turn around. Adam and I have had a cold over this last week, so far Ethan has not caught it, please pray that he will continue to stay healthy. That his protein will not go up, but go back to negative. Lastly, I ask that you pray for Strength for our family. This has been an exhausting journey, particularly these last 8 months. If Ethan does relapse, he will need to undergo a Kidney Biopsy and probably have to go back on prednisone and possibly another chemo drug. I will keep you updated as to how things progress. Hopefully things will turn around!!!!

Germs

Germs are all around us, and if you have children, it is pretty much a given that they will bring home all sorts of nice viruses. For a normal healthy family, getting a cold or a flu is a minor inconvenience in the scheme of things. For us, if we get sick or worse, Ethan gets sick, it brings with it consequences and huge amounts of stress.

 I will back up to the day that Ethan was diagnosed with Nephrotic Syndrome. We were being told so much information at that time, but I remember very clearly these words, there is no cure for Nephrotic Syndrome, but there is a known trigger. Well, what is it, we asked? We most certainly would do everything in our power to avoid this nasty trigger so that our son would never have to go through this again. Little did we know it wouldn't be so easy. For some reason, Nephrotic Syndrome is triggered by viral illnesses, if Ethan gets a fever, it almost always results in protein being leaked into his urine. Which is the start of a relapse, and many months on prednisone.

How in the world would we be able to keep him away from sickness to prevent this from happening again? At the time Ethan was not in school, but he did go to our church nursery during the service. That, the doctor said, was no longer allowed. Ethan was on large amounts of prednisone, which suppressed his immune system, making it very easy for him to catch things, more than a healthy child would. Over the years, we have found that if Ethan does get sick, he will get it worse than the rest of us, only 1 time he has been hospitalized, so far... due to a very high fever. So from that day on, our lives totally changed, now, not only would we have to manage Ethan's Nephrotic Syndrome, but now we had the huge task of keeping sick people away from him.....

As Ethan approached the school years, we asked the question, can he go to school? Yes, came the answer, and in fact we encourage them to go to school, to be as normal as possible. Even now, that Ethan was on this chemo drug, his Nephrologist said, Yes, he can go to school. The sick people just need to stay home!!! It is the healthy ones who should be able to get out and enjoy life, and when you are sick, you should stay home!!!! I couldn't agree with them more, but sadly not everyone shares this point of view.

 Along the way we have encountered many, well meaning people, who try to rationalize their sickness away, so that THEY don't have to miss out. But missing out, is something we are all too familiar with, it is one of the hardest parts of Nephrotic Syndrome. For it affects not only Ethan, but our whole family.... 

I am so grateful to Ethan's school and teachers. They have partnered with us, supported us in keeping the classroom as healthy as possible for Ethan. Which has allowed him to be at school, experiencing normal things, kids his age would. 

I want to say a big Thank You to my parents who have helped us so much, taking the boys so that I could do errands, or overnight so we could sleep in, when Ethan was up many times at night with insomnia. Thank you as well to Jeff's parents for all those times you took Ethan so that we could go to Church. To my girlfriends, your friendship is invaluable, our morning coffee's, to dinner and movies, a wonderful distraction from the stresses of my life. I love each and every one of you. 

Checkup

This afternoon, Ethan had a checkup with our local pediatrician. Amazingly, his blood test results are all very good. The only one that is low is the Lymphocytes, which she said is on the low end of normal.  They are keeping an eye on it, as it has been low for the past month, but nothing that they are too concerned about.

 Another good thing about being off prednisone is that Ethan's blood pressure has returned to normal. It became slightly elevated due to the high doses of prednisone. Ethan is also losing the roundness and the typical "moon face" that one gets on steroids as well. Since last month he has lost 1 pound, instead of continually gaining. Now that he is off prednisone, his body has a chance to catch up with growing too.  

I am looking forward to a rest from all the doctors appointments and lab tests, prescriptions, and from being the one to give all the medications. I find it amusing as we near the end of treatment, each doctor has said the same thing to us, just in a different way. "Well, I hope this is the last time I see you".  I understand what they are saying, it is their way of wishing us a good long break from life with this illness. This is my prayer for Ethan and our family as well, only 16 more days to go... and then, we Wait!!!

What Color Will It Be Today?

Ever since Ethan was diagnosed with Nephrotic Syndrome we have had to daily test his urine with special sticks called Albustix. This measures the amount of protein in his urine, if the stick changes color, we know that he has protein and a relapse is coming or occurring. When Ethan was first diagnosed it was very hard to get an accurate reading, as Ethan was still in diapers. 

Essentially, my days were spent following Ethan around with a cup, waiting for him to pee. The pee could not touch the ground, or the reading would not be accurate. To be honest, those were very hard days, and I am so thankful that Jeff's parents and my parents helped us out as much as they could. But the daily testing was my job and until I got a sample, our day was spent waiting!!!

As Ethan got older and became potty trained, testing became much easier. Although, he still does not wake up needing to go the bathroom, now I can make him... Who would have thought that a simple color on a stick can change your whole day. I don't think I can fully explain to you the anxiety that we daily face as we wait for Ethan's sample, wondering, What color will it be? Will he be negative, a trace, or overnight has significant protein come. Sometimes Ethan can be negative one day and full on high protein the next, for no apparent reason. Sometimes Ethan is getting sick, a fever almost always brings on protein for him. Everywhere we go, these precious sticks must follow, holidays, overnighters, and the results carefully documented in my trusty notebooks.

 Last week, Ethan came down to breakfast after he had left me his sample. He was very worried, he said" Mom, the color doesn't look good", I think I might have to go back on prednisone". I quickly went back upstairs to test, with Ethan in tow, and thankfully he was negative. Sometimes Ethan wants to know what he is, and other days he doesn't ask. I try not to say too much to him about it, as I don't want him to feel anxious. I know from having two son's that his urine is much less and different in color than his brother's, I know his is not normal, hoping and praying that one day it will be.

The Final Countdown

The countdown is on, only 2o more days until Ethan is off his Chemo pill. YEAHH!!!! Today was a rough day for Ethan, he did manage to make it until the last hour of school though. He was complaining of stomach aches and nausea, it was also very hot today and he did not drink enough water. It is hard when I can't be with him at school to make sure he is getting the water he needs. If he doesn't drink enough water, we were told that the chemo can irritate the bladder and cause him to pee blood. Ethan is terrified of this happening, so he does try to drink as much as he can, but he is still a child and forgets at times.

We are grateful for each day that Ethan is off prednisone, he is still feeling some of the effects of being on it for the last 7 years. Prednisone is very hard on the body, weakens the bones and can cause eye problems as well. In the last 6 months, Ethan has complained more and more of bone and joint pain. Which is another reason why his doctors decided to try him on this chemo drug. It has been 8 long months since Ethan started relapsing continually. Last summer Ethan enjoyed 5 glorious months off all medications before relapsing, which is the first break in over 2 years.