6 Months and Counting

We are continuing to celebrate Ethan's good health, he has now made it just over 6 months off all his medications. This is a huge milestone as he relapsed last year after 5 months of being off his meds. The longest he has ever made it off is 14 months, we are pushing forward towards our new goal of one year. Hoping and praying that this is the end of Ethan's journey with Nephrotic Syndrome, but if it is not, we are so thankful to have been given this precious gift. School has been going very well for Ethan, he still does not enjoy going, but at least he feels so much better, which is half the battle. I can now wave goodbye and he will smile and wave back instead of crying and begging me to take him home. One verse that I have been reading over and over again is James 1:12 Blessed is the man who preserves under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him.

So far so Good

It has been a few days since Ethan has had his H1N1 vaccination. I am happy to report that he didn't suffer any side effects other than a sore arm for one day. I have been keeping a close eye on his urine samples and he continues to be negative, in spite of his shot. Which is fantastic news!!!! Adam is doing better, his fever went away on Saturday and it appears that it was just a cold. There are so many other colds and flus going around, it is rather hard to determine exactly what he had. But I am thankful that he seems to be all better.

I know I keep saying this, but I am so very thankful to be able to watch my son enjoy being a normal boy. There isn't a day that goes by that I don't thank God for giving us this precious gift. At our recent visit to Children's Hospital, the nurse told me not to get discouraged if Ethan should relapse again. I later wondered, why would she tell me that? Did I appear too happy about his progress? In the past I have spent too much time borrowing trouble from the next day, for now, I am trying my hardest to focus on today, to enjoy it fully, to not worry about tomorrow. Some days I succeed, and other days I fail miserably.

We Did IT!!!!

I thought I would let you all know that we did decide to vaccinate Ethan for the H1N1 flu. He received his shot last night at our doctor's office. He did very well, he is always so patient at waiting, we had to wait for about an hour to receive his shot. I could tell he was getting nervous though, as the little kids kept coming out of the doctor's office crying. He kept asking me if it was going to hurt? Thankfully, I did have some left over Emla cream that I used when he had all of his blood tests. I was able to use some of the cream to help lessen the pain of the immunization just a bit. Ethan said it still stung but not as bad as without it would have been, and so far the only complaint that Ethan has, is a sore arm.

I am praying that Ethan does not relapse from this shot and that he doesn't have any adverse reactions to it as well. I have been praying over both my boys constantly that they will be protected from this flu and any complications arising from it. I can tell you that I feel a great sense of peace and that a huge weight has been lifted off my shoulders. Adam and I still have to wait until we are allowed to get the vaccination, I hope it isn't too much longer.... Adam woke up with a mild fever and a cough this morning, praying that it is just a cold and nothing else. For now, I am so very happy that this very hard and stressful decision is behind us and so very at peace with the decision we made!

Decisions

I must say that I am so very tired of trying to come to a decision on whether Ethan should or shouldn't get this H1N1 vaccine. There are risks on both sides and we have been going round and round trying to figure this out. If Ethan gets the vaccine, he risks a potential relapse, yet on the other hand if he gets the flu he risks the same or worse! There doesn't seem to be any good way around this. Our doctor's office only offers the vaccine once a week, so if we want Ethan to get it, we have to decide by tomorrow afternoon, or we will have to wait another week. Keep us in your prayers as we continue to wrestle with this decision.

Ethan's Checkup at Children's

Ethan had a fantastic checkup today with his Nephrologist, I was so blessed and thankful to have my Dad join us for the very first time! It was a long wait but it was worth it, we were even treated to lunch after. I came away feeling very satisfied, that all my questions were answered to the best of their abilities. The good news, is that Ethan is doing fantastic, since he is off prednisone, he is now, no longer considered Immune suppressed. But he is considered to be, High Risk for the H1N1 flu. They are recommending that Ethan as well as Jeff, Adam and myself get the H1N1 shot. Getting the the H1N1 shot has it's risks, and can potentially cause Ethan to relapse, anything that stimulates the immune system is a trigger for Nephrotic Syndrome. I did discuss my concerns about what is exactly in the shot, Thimerosal and squalene to be exact. We were told that the current batch of H1N1 shots, that has just been released on Monday, does contain these harmful ingredients( in my opinion anyway). If we were concerned about these ingredients, he said we could wait until they release the second batch of flu shots which do NOT contain these ingredients, and that is the shot he as a doctor will be getting. We have much to consider and weigh as to which road we take, and sadly it doesn't feel like either is a good option. Thanks for your continued prayers for Ethan, we are so thankful and amazed that he continues to do well. Unless Ethan has problems we have now graduated to see his Nephrologist in six months. YAHOO!!!!!

Thankful

I haven't updated in a few weeks, mostly because there really hasn't been much to say. Ethan is doing fantastic, so much to be thankful for. Which is the reason and inspiration behind this post, being thankful for each and every day that he is off prednisone. It has been wonderful to have some space and perspective to reflect on all that we have gone thru these past few years. I have enjoyed that Ethan has only missed 1 day of school so far, and I find myself checking my cell phone less and less to see if the school has called. I am finally starting to feel like I can relax and not be on full alert all the time. I was never really able to make plans for my days, when the boys were in school, because I never knew when I would get a phone call to come and pick him up. Although Ethan still says he doesn't like school, he is going, and without much complaining, which is a huge improvement over the past 3 years. Although this school year has not been without it's challenges, nothing is ever easy! I am so thankful that Ethan is NOT on prednisone at the moment, Grade 3 moves at a much faster pace. If he were on prednisone, I know it would make his adjustment to Grade 3 even tougher.

Today also marks the one year Anniversary of my Grandma Douglas's passing, my Mom's Mom. She was a special woman of God, and I really wish she could have seen how happy and healthy Ethan is today. You see, my Grandma and Ethan shared being on prednisone together. She understood all too well what life was like on prednisone and we would often compare the side effects each of them was feeling. I miss talking to her, even though she had a hard time hearing these last few years. She was a very caring and joyful woman despite her many health challenges, and she is the kind of woman I aspire to be.

4 Months

Ethan is now entering his 4th month off all his Kidney medications, I can hardly believe it! A part of me is starting to feel hope, maybe this is the time he will outgrow this disease? Putting an end to this part of our journey, but at the same time I am always cautious to say how well Ethan is doing, for fear tomorrow we will wake up and everything changes.

I know it is only Tuesday but so far this week is going very well, Ethan has not given me any problems with going to school, knock on wood! Today was picture day at School, I was so happy to have his picture taken without him being on prednisone. I was looking back at pictures of Ethan from just a few months ago and I can't believe how much his face has changed. Prednisone really does change so much about a person. I heard a really great song by Matt Maher called, " Alive Again". One line in the song really spoke to me, it's about breathing in and breathing out, feeling Alive again. Which is how I am starting to feel....

http://www.youtube.com/watch?v=r6w5szlpedY

Up and Down

Life is filled with ups and downs, this past week we experienced both. Ethan's protein has gone back down to a trace and has stayed there for the past few days. So that would be an UP! I was feeling so nervous about a possible relapse. I don't think I can fully relax yet, but I am trying.

The down has been that Ethan is having a harder time adjusting to his new teacher as am I. It gets very tiring, year after year to explain to a new teacher all about his medical condition and needs.

I include a detailed letter and information sheet all about his condition in hopes that they will be armed with enough information to truly grasp what it is Ethan goes through. Ethan and I developed such a close bond with his teacher last year that I feel like I am in mourning. She was such an amazing teacher, who loved and prayed for Ethan like she was her own child. Please pray for us and Ethan's current teacher, Mrs.Penner. We pray that Ethan will have a good year and continued health.

Back to School

We had a successful first day of School, although Ethan did have some tears prior to leaving for School this morning. School is not Ethan's favourite thing, probably because the last few years he has not been feeling well most of the time. I am so very thankful that Ethan has his best friend, who is also named Ethan with him in his class this year. Once we arrived at School and they saw each other, Ethan was calm and happy. Adam is starting Grade 5 and is very happy about being the oldest in the School, and he loves School too!

As we enter the School year, I can't help but feel nervous. With all the news about the H1N1 flu and how bad it is for people like Ethan. I must admit, that I am feeling very anxious and worried, especially as we are heading into what the health officials predict will be a bad and early flu season. We have been so blessed to enjoy and watch Ethan grow and thrive being a normal child these last 3 months. But I am also conscious of the fact that we can wake up tomorrow and everything can change.

Today as I went to test Ethan, I stopped in my tracks and my heart did a flutter. I saw a very dark sample and foam! Bubbles/foam is not a good sign, it means that there is protein in his urine. I prayed as I dipped the stick and watched the color change to a light green color. Yes, just as I thought, a bit of protein. GRRR!!! On the first day of School too! He is currently sitting between a trace and 0.3 so nothing serious yet. Please pray that this is just a temporary blip and not a sign of a relapse coming.

Another Checkup

Ethan had another checkup with our local pediatrician this morning. I can't believe that he has now been off prednisone for 3 months! Ethan is still doing well, he grew another 1/2 inch this month. His doctor is very pleased with his progress, he is staying at a trace of protein and as long as he doesn't go up any higher she said not to worry! Easy for her to say Right?

The only health concern that is bothering Ethan at the moment is his skin. Ethan has eczema, and since stopping prednisone, we have seen his eczema continue to get worse. It has been years that Ethan has had any length of time off of prednisone, and I am not used to seeing him react to anything and everything.

I did question the doctor about this today, and she said that Ethan's immune system is relearning how to function on it's own. Many years of prednisone use, have suppressed his own immune function, and his body is kinda going haywire right now, trying to figure out what to do. She hopes with time his skin will improve, for now she prescribed some stronger cream to see if that helps. His eczema was getting so bad, parts of it were starting to get infected.

The best part of the visit was that we have now graduated to seeing the doctor in 3 months, instead of every month. Wow, I can hardly believe it, whatever will we do with all our free time? This is a really big deal for us, when Ethan relapses, we see the doctor one or more times a week, to once a week, to once every 2 weeks to once a month while he is on his medications. Once he is off all his medications, they see him once a month for 3 months. If he is still doing well at our next visit in 3 months, then we can graduate to once every 6 months! But I am not getting ahead of myself just yet. School is just around the corner and I have no idea what that will bring!

FSGS

FSGS is also a Kidney disease, which is very similar to Nephrotic Syndrome. They have similar symptoms and drugs used to treat it. There is also no known cure or cause for FSGS. The main difference with FSGS, is that you do not outgrow it, like you can with Nephrotic Syndrome. The following link is of a video of a boy who is suffering from FSGS, it reminded me of Ethan and our situation. There is a small percentage of Nephrotic children who do progress to FSGS, but for now, Ethan's doctors are confident we are still dealing with Nephrotic Syndrome. The "good" kind of Kidney disease, as they like to call it!!! I guess if he has to have one kind of Kidney disease, the "good" kind is the best! Right?

http://www.youtube.com/watch?v=_B-C3Rj5Vfk

Diagnosis- Anniversary

Today is the 7th year anniversary of Ethan's diagnosis of Nephrotic Syndrome. All week I have been thinking about Ethan and our journey that has led us to this point. All the many hard things he and we have endured, and the many blessings that we have received as well. I must admit that it has been painful this week, remembering each relapse, treatment tried, the countless doctors and lab appointments.At the moment, Ethan is still doing well, and we are so very thankful for that. As for what may come, I do not know.... I have no idea if and when Ethan will relapse again, or if this is "The" time he will outgrow this disease. I have been wrestling with these questions for some time now, and I have come across a great song. It is called "Dive", by Steven Curtis Chapman. In the song it talks about taking the leap of faith, giving God control, that sink or swim, you're diving IN! I have posted the link below if you would like to take a look. I found it very encouraging, to a lifelong worrier, diving in and letting God have complete control is my ultimate GOAL!

http://www.youtube.com/watch?v=hXqXIicm8uU

Reflections of Summer

The countdown is on, only 3 more weeks until School starts. I am feeling excited for the year ahead, as Adam enters Grade 5, he cannot wait for School to start. It has been an absolutely wonderful relaxing summer, with no schedules, and only 2 doctors appointments.We have been blessed and feel very thankful that Ethan has had an amazing summer, health wise as well. He continues to be a trace in his urine samples, he has had a few days of stomach aches and complaints but nothing like he has in the past. With School on the horizon and all that comes with it, I am praying that Ethan will continue to remain healthy. 

Fantastic Checkup

We went to see the doctor today, our local pediatrician, who we are seeing once a month right now. Ethan had a fantastic checkup, she is very happy that despite Ethan having a fever last week, he did not relapse. His urine samples continue to be trace, but she said that is okay. The best part of the checkup is that we discovered Ethan has grown over an inch since last month. Which is great news, as prednisone suppresses growth, his doctor and I were very excited to see such growth in only 1 month. Everything has returned to normal ranges, weight, blood pressure, and now he is growing again. So very happy!!!! 

Still Sick

Ethan still has a low grade fever, but his protein has come back down to a trace. YEAHHH!!!

Thank You to all those who prayed for Ethan as soon as he became ill, our prayers have been answered! I don't know how long Ethan's immune system will continue to be low after stopping the chemo and prednisone. It amazes me to see the difference in my boys immune systems, Adam only had a fever for 12 hours and Ethan is going on 2 full days. It certainly takes Ethan twice as long to get over things and he usually gets it worse than the rest of us. 

 

We are hoping that Ethan will be feeling back to normal soon and that this fever, won't trigger a relapse, the next few weeks are still critical after he has been sick. Thankfully we have a checkup with our local pediatrician next week, which will make me feel better to have him checked out. 

Sick

Well, it appears that Ethan has his first illness since he has finished all of his medications. Adam had a mild fever/flu symptoms 3 days ago and now it has made it's way to Ethan. I was very nervous as I tested Ethan's urine and sure enough, he is at 0.3 for protein. Which is still relatively low on the scale, but one never knows... Will the protein go away on it's own, or will this fever/flu signal a full blown relapse, and if it does, what is coming next??? Yes, I know I am jumping ahead, but it is very hard not to. I find these times to be the absolute hardest, the fear of the unknown. Please pray for Ethan that this will just be an illness that he will get over quickly and that it won't start a relapse.

Reflections

Summer time and the living is easy!!! We are now a few weeks into summer holidays and I must say we are loving it! It has been absolutely wonderful to have no schedule, no need to get up early, and I am loving not having to get up early and give Ethan all of his medications. In the last 7 years it has been primarily my job to give Ethan all of his medications, and I must confess that I am tired of it. I am sure Ethan is tired of taking it too! I am still daily testing Ethan's urine, he goes between trace and negative every few days. When we saw Ethan's Nephrologist last week, he asked me how often I test Ethan, and if I have ever NOT tested him in the last 7 years? I said I test him every day, but No, I have never NOT tested him, Are you Crazy??? He said, his goal is to get Ethan and me, to the point where we can go a whole year without testing. Wow, now that is a goal!!! I told him I didn't know if I could do that, it strangely gives me some sort of peace knowing what his result is, I don't know if I could relax not knowing. Also, testing every day allows us to detect a relapse long before it becomes out of control. In his defense, he said he was a true optimist, and I told him, that I am NOT. What a combination!!!! 

If you have seen Ethan lately, you will surely notice changes in him. Physically he has slimmed down, grown taller, he's had a big decrease in his appetite. Which is very strange, I am so used to him eating so much on the prednisone. I know I keep saying this, but we are so happy to see Ethan giggle and laugh. To see the joy in his face as he experiences life is so rewarding, we used to take him places and feel so discouraged, because all he did was complain that he didn't like it, didn't feel well, and that he just wanted to go home. If you know Ethan, he can be mischievous at times, Now, he loves to jump out and scare his older brother, just to see the reaction he will get. These may seem like small and normal things to other people but they are huge in our life, examples of life returning to normal. We are grateful for each and every day.

  

Strength for the Journey

Jeff and I celebrated our 14th Wedding Anniversary yesterday. In the card that Jeff gave me, the following words leaped out at me, and I wanted to share them with you.

" Don't worry that you are not strong enough before you begin. It is in the journey that God makes you strong".  

We had no idea when we set out on our married life that we would have a child that is chronically ill. We could not know the stress and toll that it takes on a family and marriage, until we went through it. I am so thankful that Jeff is by my side, and that we are walking this journey together. It is not easy, and there are days when it feels like we have lost our way. But God is faithful and he is reminding me at every turn that he is with us, and that he is giving us strength for this journey. I don't know if Ethan will be healed anytime soon, but I know that God will carry us through. I pray that Jeff and I will have many more years together, loving and caring for one another!

Children's Checkup

Ethan had his first post chemo checkup today at our Children's hospital. Ethan's doctors are very pleased that he is now off all medications. Ethan's blood pressure is normal, it was a bit elevated while he was on the higher doses of steroids. Ethan's doctors are also very happy that he is continuing to grow, despite the large amounts of steroids he has been on.  

As luck would have it, Ethan's nephrologist who we have come to love and trust, is having a baby. We were very happy to say goodbye to her today, as it was her last day of work before she starts maternity leave. I am sad that she will be gone for 1 year, but we couldn't be in better hands. We are going to be seen by the head of Nephrology, so what could be better? He has over 25 years experience as well, so I feel very confident that Ethan will be well taken care of in her absence. So for now, we wait! We wait to see if Ethan will outgrow this, or if he will relapse. Taking it one day at a time, and rejoicing in the fact that in this moment, Ethan is doing well. The doctors final words to us were" To celebrate every day that Ethan is off, and to not focus on the future".  I told him we were doing our best to do just that. 

Summer

Well we made it! School is over, both the boys had great report cards and will start Grade 3 and 5 in the fall. Adam is sad that school is over and that 2 of his best friends are moving away and Ethan is of course very happy that school is over. We are so happy that Ethan is doing very well, his urine samples continue to fluctuate between trace and negative. The comments that people keep making to us is that Ethan is smiling and laughing now, and it is true, it is a such a blessing and a sight to see. It is one of the things we miss the most when he is on prednisone. It really does suck the life out of a person. 

Ethan is looking forward to his first sleepover with his best friend in 2 days, he is so excited that he doesn't have to take any medicine while he is there and that he is feeling well enough to enjoy it. Which is one of the reasons we waited so long to plan this sleepover. We don't have any trips planned this summer, we plan to just take it easy, relax and have some FUN!  After so many doctors appts and lab tests, it has been so nice to just sit at home and do NOTHING! Although, I am sure the boys will start to get bored at some point, for now, we are enjoying a slow and relaxing pace of life!

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. 

Race

It has now been one whole week that Ethan has been off prednisone. Since he has been off, his urine samples go between trace and negative. We would rather he was negative everyday, but the doctors say a trace is still okay. In our experience however, a trace is just the first step of a relapse, but I am not going there yet!!!!

Today was a big day for our family, we signed up to run a 5k race, and I had high hopes of all 4 of us running together. As the race drew nearer, Ethan began to get more anxious and had a complete meltdown the night before the race. He said he did not think he could run or walk and just wanted to sit on the sidelines. We did all we could to encourage him to try to make it, even promising a slush at the end of the race. From the 1k mark on, it was pure torture for me, by this point we were walking the race, Jeff and Adam had gone on ahead of us. I am a competitive person and could not stand to see people passing me. I was holding Ethan's hand and literally dragging him it felt like. I did not want Ethan to quit, I wanted him to be proud of the fact that he finished the race, in spite of his medical issues. Ethan and I did finish the race together at 53 minutes and 39 seconds. Next year, I decided that I will run on my own!!!! I am glad we did it he says, now that he is done, but he doesn't want to do it again!!!!   

While I'M Waiting

Waiting, Waiting, Waiting, this has been my life for the past 7 years... Waiting is something that I am not very good at, but I am learning. I have come a long way in the patience department, but then again I have had to. Everywhere we go, we have to wait, we must wait at the doctors office, for lab tests, and for hours sometimes as we wait to see Ethan's specialists. I am very blessed that Ethan is very patient and handles waiting extremely well, he gets that from his father!!!

 When Ethan relapses, we must wait until his protein reaches a certain level before I can contact his doctors. This is when my anxiety levels go way up, now that I have been through this many times, I know what is coming. I find it very hard to sit by and watch Ethan suffer, as he gains weight rapidly from the protein and then from the prednisone. We are entering another season of waiting, now that Ethan has finished the prednisone part of his treatment. We must wait and see if his body can handle life without it. I wasn't sure I would ever see the day that he would be able to get off prednisone , we pray it lasts longer than a few weeks. We have also waited for healing for Ethan, every time he finishes treatment we wonder if this is the time he will be healed or outgrow this disease? But for some reason God has not answered our prayers for complete healing, he has however answered so many of our prayers and yours in ways that we never expected. One example would be, getting Ethan into the Nephrologist, when we were told that there were no openings for months. Only to receive a call half an hour later that they could see him the next day. Yes, that was a God thing!!!  

We wanted to say Thank You to the many people who pray for Ethan and our family, you have no idea how much this means to us. On those very hard days when I don't think I can go on, when I am left wondering just Where is God in all of this? I receive an email with words of encouragement or a phone call to say we are praying for you. Then it all makes sense, he is with us.... I received such an email this morning as I was expressing to a dear friend my mixed emotions. Joy on the one hand and fear in the other. This is what she wrote to me: " I know you are scared to believe things won't suddenly change for the worse. I will dare to believe FOR you! I will pray for a season of healing, restoration, refreshment, and REST for your family from this chapter in your lives. I pray that a new chapter will open soon and you will be blown away by JOY".   I am so blessed to have amazing friends!!!  Below is a link to a video by John Waller,"While I'm Waiting". Which was also sent to me by my dear friend and has been the inspiration for this post. May it encourage you also.

http://www.youtube.com/watch?v=Bb7TSGptd3Y

2nd day without prednisone

Just a quick praise item, Ethan had a fantastic day today!!!! Today was the first day that I did not hear" Mom, I don't feel well"!!!! We even went on a field trip that was about 45 minutes from the school and he didn't even feel sick. YEAH!!!! I am hoping and praying that this continues, it is such a joy to see the light and life coming back into his eyes. 

Statistics on Nephrotic Syndrome

Ever since I heard the words Nephrotic Syndrome, I became one of those people who devours any and all information that I can get my hands on. Our doctor actually instructed us not to go home and get on the computer, in his opinion there was too much information out there that would only worry me. Me, Worry??? When Ethan was diagnosed, we asked how common is this? Since we had never heard of this and neither had our family doctor. We were told that NS is supposed to be rare, with 1 out of 100,000 children diagnosed each year. That lead us to ask our next question, what number was Ethan? We were absolutely shocked and amazed to find out that Ethan was number 12 that year alone in our area. We could not believe that so many new cases were being reported in a disease that is supposed to be rare? Since there is no known cause or cure, we are left with few options for treating this disease. We were also told that Ethan would eventually outgrow this, but when? WHO KNOWS!!!! It could be tomorrow, next year, when he is 15 or 20, they just don't know!!!! Which is very hard for someone like me to comprehend, I like all my ducks in a row, so to speak. This not knowing and waiting is so very hard for me, but then again, some say God is trying to teach me patience. Really God, can't there be another way?? 

I finally came across some recent stats which I found very interesting. As of 2009, 5 children out of 100,000 will be diagnosed with Nephrotic Syndrome each year. 15 out of 100,000 are currently living with Nephrotic Syndrome. Surprisingly, we have not met any other children who share Nephrotic Syndrome with Ethan. Until that day when Ethan is healed, we will keep praying, trusting God to take us step by step and hour by hour and even minute by minute!!!!

A good first day!

I am feeling very encouraged and happy at the moment, I just had to share it with you. This morning as Ethan was in his class at school, talking to his friends. I saw a glimpse, of the old Ethan, the one that exists off of prednisone. I saw my son, smile and joking with his classmates for the first time in 6 months. If you haven't experienced life on prednisone, you have no idea what I am talking about. But there is an obvious change in Ethan when is on and off prednisone. When I went to say goodbye to Ethan he said to me"See you, wouldn't want to be you", as he looked up at me with his mischievous smile. To know Ethan, this is something he thinks is funny and used to say and hasn't said to me in a very long time. For the first time in over 6 months, I left the school thinking, this was going to be good day! I had less anxiety as I went about my day, instead of constantly looking at the time and phone to see if I had missed the school's call. 

To those who are healthy, this might seem like such a small thing, but it such a huge thing in our world. My Mom best explained it to me, as Jewel's, God's gifts to me. A simple reminder in the smallest thing that God is still with me, encouraging me even when I may doubt that he is there.   The following verse has taken on new meaning for me and it has become one of my favourites.

Isaiah 39: 29-31

He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall;but those who hope in the LORD will renew their strength. They will soar on wings like eagles;they will run and not grow weary, they will walk and not be faint.

A day in the life!

Everyday, I hear the words, Mom, I don't feel well!!! I must confess that I have begun to despise those words. To me they mean I will again have to force Ethan to get up, get moving, eat something and all the while hoping he will make it to school. I am thankful that I don't have a job outside the home, I doubt I would be there very much. Everyday, I am faced with the decision, how sick is he? Can he make it to School today? If so, how long will he stay, and what can I get done in the quickest amount of time before the School calls me? For some reason, Ethan does not enjoy School, even though he is very good at it. His teacher is very proud of him for how little he does complain in class, but she can tell that he lacks the joy and zest that the other children do.  Even on those days when Ethan doesn't go to School, he still finds it very hard to engage in normal activities. He is either complaining of stomach pains or of feeling very nauseated. As we have now completed the prednisone part of his treatment. We are praying that God will give Ethan, and us as a family, a new "Normal"!!! One without doctors, lab tests, medications and side effects. 

Last day of Prednisone

Today was a milestone in Ethan's treatment, I gave him his last dose of prednisone this morning. YEAHH!!!! I am so happy yet so very nervous. So many questions and anxieties haunt my mind. As I reflect back on the last 6 months of our journey. I must confess these have been the most difficult that we have ever been through. Ethan was much sicker than he has ever been, despite the doctor's reassurances that Ethan would sail right through treatment. Ethan has fought the daily side effects of high doses of prednisone, weight gain, insomnia, mood swings, hair growth, bone and joint pain, stomach pains,lowered immune system. 

When it became apparent that the prednisone was no longer working, a chemo drug was thrown into the mix. We had no idea what to expect on chemo, thankfully Ethan has not lost his hair. He has fought daily nausea, constant stomach pains, fatigue, even more lowered immune system, and in my opinion lacks the zest a normal child would have to enjoy life and activities. He often has to sit out and watch as he complains that he doesn't feel well. Every week Ethan has to get blood work to make sure his white blood cell counts are okay. He has endured so much and for the most part he handles it very well. Please continue to pray for Ethan over the next few days and weeks. I will keep posting about how he is feeling and how things are going as the days go by. 

How it all Began- August 15, 2002

To go back to the beginning to where it all began, we were cruising along, enjoying our life, completely unaware that a devastating illness with our young 17 month old son would rock our world. As I look back on those days leading up to Ethan's diagnosis, I remember noticing that Ethan began to wake up with dry diapers. At first I thought this was a sign that he was ready to start being potty trained, little did I know!!! As the day went on, he still wasn't wetting his diapers as normal children should. It was also summer, very hot, and he was drinking lot's of water, something that is normally good, but yet another sign that something was wrong. When Ethan began to outgrow the size 4 diapers I had just bought him, then quickly the 5's and then the 6's. I went to see our family doctor, explained my concerns about Ethan's recent weight gains, but was told that he was fine, and sent me on my way. Only a few short days later, I would return once again, as Ethan was waking up in the morning with very puffy eyelids. He could hardly see out of his eyes, as he stared up at me from his crib. Again, I was told he was fine, it must be allergies, and that I had introduced something new to him to cause such a reaction. I was told to give him some Benadryl, and was sent on my way again. I knew that I had not changed anything new, I already washed all the boys clothing and bedding in Ivory Snow due to their eczema. We were confused with the eyelids swelling, as it would get worse at night and when he was napping, during the day it would seem to lessen. 

August 15, 2002, Ethan woke up with his eyes so swollen that they were completely shut. His eyelids were so huge, they looked like golf balls over his eyes. It is a sight that I will never ever forget. I had never felt such fear, as I rushed to pick him up and then to the phone to call my Mom to come and get us. We didn't have a doctor's appt, they weren't even open yet. But we showed up on their door anyway. I thank God that my Mom came with me, as I was turned away 2 times before, I needed someone to be with me, to reassure me that I wasn't going crazy. Something was wrong!!! She firmly told the Nurse that something was wrong with Ethan and we were not leaving until the Doctor took a look at him. Thankfully, she did listen and the Doctor rushed right in to see us. He took one look at Ethan, went into his office and called our local pediatrician. He wanted us to come over to his office right away, he was waiting for us. This I knew was not good, as happy as I was to finally be seen, I had a sense something was coming.... In the waiting room Adam, 3, at the time, decided that now was a great time to have a nosebleed, again, thankful my Mom was there to help me out. Ethan and I headed into the Dr's. office for an examination. He took one look at him and told me, his Kidney's are failing, you need to take him right away to the hospital. I will call ahead and you can go straight up to pediatrics, Ethan ended up being admitted to the hospital for 5 days. When he was admitted, Ethan had gained a total of 10 pounds of fluid, his blood pressure was high, his breathing was fast and laboured.  Only a few short hours later, we learned that Ethan had what was called, Nephrotic Syndrome. Something, we had never ever heard of, we were told Nephrotic Syndrome was rare, 1 in 100,000 children will get it. We were also told that this was an autoimmune disease. To our dismay, the only treatment option was to put Ethan on high doses of prednisone. Prednisone I knew was not a good drug, My Grandma had been on it for many years. Feeling bold, I told the doctor that I did not want him on this drug. He said, you have no choice, it is this, or his Kidney's will fail. To say we were shocked, devastated would be an understatement. In the months and years that followed we would learn just how hard living with a child who has a chronic illness would be. It affects not only the child, but the entire family.

What is Nephrotic Syndrome

 The kidneys are two bean-shaped organs found in the lower back. Each is about the size of a fist. They clean the blood by filtering out excess water and salt and waste products from food. Healthy kidneys keep protein in the blood, which helps the blood soak up water from tissues. But kidneys with damaged filters may leak protein into the urine. As a result, not enough protein is left in the blood to soak up the water. The water then moves from the blood into body tissues and causes swelling.

Both children and adults can have nephrotic syndrome. 

Childhood nephrotic syndrome can occur at any age but is most common between the ages of 1½ and 5 years. It seems to affect boys more often than girls.

A child with nephrotic syndrome has these signs:

    * high levels of protein in the urine, a condition called proteinuria

    * low levels of protein in the blood

    * swelling resulting from buildup of salt and water

    * less frequent urination

    * weight gain from excess water

To diagnose childhood nephrotic syndrome, the doctor may ask for a urine sample to check for protein. The doctor will dip a strip of chemically treated paper into the urine sample. Too much protein in the urine will make the paper change color. Or the doctor may ask for a 24-hour collection of urine for a more precise measurement of the protein and other substances in the urine.

The doctor may take a blood sample to see how well the kidneys are removing wastes. Healthy kidneys remove creatinine and urea nitrogen from the blood. If the blood contains high levels of these waste products, some kidney damage may have already occurred. But most children with nephrotic syndrome do not have permanent kidney damage.

In some cases, the doctor may want to examine a small piece of kidney tissue with a microscope to see if something specific is causing the syndrome. The procedure of collecting a small tissue sample from the kidney is called a biopsy, and it is usually performed with a long needle passed through the skin. 

The condition most commonly associated with childhood nephrotic syndrome is minimal change disease. Doctors do not know what causes it. The condition is called minimal change disease because children with this form of the nephrotic syndrome have normal or nearly normal appearing kidney biopsies. If a child is diagnosed with minimal change disease, the doctor will probably prescribe prednisone, which belongs to a class of drugs called corticosteroids. Prednisone stops the movement of protein from the blood into the urine, but it does have side effects. These include, increased hunger, insomnia, mood swings, suppressed immune system.

When protein is no longer present in the urine, the doctor will begin to slowly reduce the dosage of prednisone. Some children never get sick again, but most experience a relapse, developing swelling and protein in the urine again, usually following a viral illness. However, as long as the child continues to respond to prednisone and the urine becomes protein free, the child has an excellent long-term outlook without kidney damage.

Children who relapse frequently, or who seem to be dependent on prednisone or have side effects from it, may be given a second type of drug called a cytotoxic agent.