Update

Today Ethan and I headed into Vancouver on a familiar route to Children's Hospital to see his Nephrologist. I am happy to say that he had a great check up. They are very happy that Ethan has now made it one year off prednisone. After 3 years straight, this last year has been a much needed break. Ethan continues to take MMF twice daily and we found out today that as long he doesn't relapse or have issues with his white blood cell counts again. He will likely be on the MMF for another 1-2 years. They would like him to have no relapses for at least 2 years before they try and wean him from the MMF. The hope is, in that time if he does not relapse, he will have given his body enough time to hopefully "outgrow" this disease once and for all. If he does not "outgrow" it by then, he will likely continue with Nephrotic Syndrome as an adult. I asked for statistics as to how common it is to continue with NS into adulthood. But of course, so little is known about NS that they gave me the standard answer of, "we just don't know".... So we will continue to do what we have been doing, taking it one day at a time. Everything is going well at the moment and they are pleased that his immune system seems to be doing better this fall/winter than last year. Ethan continues to enjoy playing volleyball and has had a few hiccups with getting a mallet finger fracture and dislocation last April. Which had him sitting out for 8 weeks... Unfortunately the finger didn't heal properly and the surgeon felt surgery was too risky and he wouldn't benefit from it. I am still not sure that was the best idea as it didn't heal correctly and it's continued to give Ethan pain these last few months while playing School volleyball. Last week at club try outs he hurt that same finger, although not nearly as bad this time. The doctors at the hospital couldn't tell if there was a fracture or not, so now we will be seeing another surgeon next week to see if there is a hairline fracture or not. Praying that it is just inflamed and not fractured as club season begins in a few weeks. 

From Marah to Elim

In my daily Bible reading I have been focusing on Exodus, it is a book I have read thru many times. Yet reading it now after having just gone through some very tough months with Ethan's health. I have seen it with fresh eyes and lessons that apply to me today and maybe for you as well. I am not a Bible scholar, so I will try my best to get my thoughts down without ruining the theology behind my point.

The story begins after Moses had led the Israelites thru the Red Sea. They were rejoicing and singing that the Lord had saved them from the horse and rider. They left the Red Sea and entered the Desert of Shur. For 3 days they travelled in the desert without finding any water. Can you imagine how hot tired, dusty and incredibly thirsty they would have been? You can go many days without food but not water, so time was of the essence to find something to drink.

Soon they came to Marah where they found water, but they could not drink it because it was bitter, Marah means bitter. You can imagine their great disappointment at finally finding water, but not being able to drink it. They began to grumble and complain to Moses, saying, "What are we to drink"? It's important to note that Moses didn't lead them here by accident. He was following the Lord.

 Exodus 13:21-22 "By day the Lord went ahead of them in a pillar of cloud to guide them on their way and by night in a pillar of fire to give them light, so that they could travel by day or night. Neither the pillar of cloud by day or the pillar of fire by night left it's place in front of the people".

Now God would have just led them thru the Red Sea, they are rejoicing happy, and then they face another challenge. Moses gives us a great example of what to do in times of trouble and distress.  He cried out to God!!! The Lord answered Moses's prayer by showing him a piece of wood. He then threw it in the water and the water became sweet. I don't know about you, but isn't that a little weird? Why a piece of wood and as far as I have tasted, wood isn't sweet and certainly not sweet enough to make bitter water drinkable.

In Exodus 15:25-27 says this " There the Lord made a decree and a law for them and there he tested them. He said, "If you listen carefully to the voice of the Lord your God and do what is right in his eyes, if you pay attention to his commands and keep all of his decrees. I will not bring on you any of the diseases I brought on the Egyptians, for I am the Lord who heals you. Then they came to Elim, where there were 12 springs and 70 palm trees, and they camped there near the water".

As I read thru this passage a few things struck me: The Lord brought them to Marah, a place of bitter waters. Why did he do this? To show them that he is their provider in all circumstances, whether good or bad. Jesus never promised us that life as a follower of Christ would be easy. Anyone who promises you a life free from pain and hardship is lying.

We will all come to bitter waters in our life, but it is in these times that we must look to the tree that God has shown us. The cross of Christ,( which symbolizes the wood in this story), and let him make the bitter waters sweet. I have learned many things in dealing with Ethan's illness for the last 14 years. One of them being that God has never once left us alone, we may not understand and even question what in the world he is doing. But he has always been there for us and just like the Israelites in the Bible. He led them out of Marah the place of bitterness to Elim, a place of refreshment.

 I love palm trees so this picture really struck a chord with me. I imagine that when they came upon Elim and saw 70 palm trees and 12 springs of water that they were in awe! Palm trees symbolize to me peace, rest and usually it means I am in my favourite place in the world, Hawaii. So for me the lesson I got out of these verses just reaffirmed to me once again that God is with me even in the midst of trials. If he leads me to to it, he will lead me thru it. He has over and over again proven that he will never leave or forsake us. I can count on him to be faithful and to bring us up out of the deep waters to a place of healing and restoration.

When Ethan was diagnosed in 2002 we went thru 7 years of constant relapses, prednisone, doctor's visits, lab tests etc. 7 years is a long time and I could go into a whole other blog post about how dark and discouraging a time that was. But I will just say that I cried out to God for relief, I begged him for a rest, where we could enjoy a normal life, not only for Ethan but for us a family. Relief came but in a different form than I had thought. Ethan would start 12 weeks of a low dose chemotherapy drug when he was in Grade 2. The hope was that this drug would reset his immune system and that he would either get a long break from all drugs, or that it would cause him to never have a relapse again. God granted us 3. 5 years of rest as this drug gave us all a much needed break. Treatment was not easy but the end result gave us a chance to be a normal family with no restrictions. After 3 years I was finally letting myself hope that Ethan might finally have been healed from his Nephrotic Syndrome.

Sadly the break was over in January of 2013 when Ethan was in grade 6. Once again we were taken to Marah and let me tell you these last 3 years have been some of the toughest we have ever gone through, and I thought the those earlier 7 years were hard!!! I find myself longing for rest and once again begging God for a reprieve. I don't know why our prayers for complete healing have not been answered yet. But I can tell you that even though it's been a rough 3 years, we have enjoyed periods of rest right before his health would take a downturn.


In March our family was able to enjoy 2 weeks in Hawaii which is my place of rest as I celebrated my 40th Birthday. Even though Ethan was still on his medication and he had some limitations and restrictions. We were able to enjoy being together and for 2 weeks we could forget the stress of home life and just relax. When you have a chronic illness you can never truly relax and forget that you have it, but we did our best to work with it and enjoy each moment we were there. We would surely need this time of rest,  for when we got home things went downhill fast. Once again we are in a period of stress and uncertainty. I am trying desperately to cling to the promises of God to help get me thru this time. I so desperately want to be in Elim, but I know that God has a plan and a purpose for us while we are in Marah.  One day I will look back and I will understand and it might not be until I get to Heaven before the answers are known. But until then I am holding on to Jesus knowing that he is forever faithful and is right beside us as we journey through this.

Update

It's been awhile again since my last blog and I realized I didn't do a blog post after Ethan's last relapse in September. Ethan started having protein 2 days after he stopped the prednisone in August 2015. His protein went up and down for weeks until finally his body couldn't handle it anymore and he fully relapsed. With his latest relapse in Sept. 2015, his Nephrologist decided to increase his MMF to the maximum dose allowed, which is 1000mg twice a day. The hope was that this dose would help Ethan to finally get off prednisone. So we began the whole 12 week weaning cycle all over again in September and Ethan just took his last dose of prednisone on December 6, 2015.

The increased MMF has given Ethan a few periods of stomach pain and upset but after about a month, his body seemed to settle down and he has been doing really well. Although he has been getting sick every month since he started back to School. His immune system is quite suppressed with being on two immune supressive drugs. But we are thankful that he has avoided having any major complications especially when he has been sick.

Today Ethan and I headed into Children's Hospital for a check up. I am filled with joy at how well it went and thankful to see and experience today "the real" Ethan and not the steroid version. It's been 16 days since Ethan has been off prednisone and today is when I really noticed that he was smiling, laughing and joking with me like he used to. It's hard to explain to those who haven't been on prednisone or had a loved one on it for any length of time. But it truly does change their personality, they become moody, depressed and quick to anger to name a few.

I love how Ethan was joking with me today, careful not to hurt my feelings, whereas just a few weeks ago his sarcasm and comments often hurt. He didn't even know he was doing it and had a hard time understanding why I was feeling hurt. When he was younger, he would just cry and we had no idea what he was feeling. I am not sure which is better.... Anyway, Ethan told the doctor's that apart from being very tired, not sleeping and super hungry he says he isn't aware of his mood changes. But he said my family notices, ha ha!!! Yes, even his older brother notices the change in him. I am relishing in today and savouring the moment of how good it was to be with my Son. I pray that it continues!!!

Ethan's Nephrologists were very happy that he is now 16 days off prednisone and they are happy that he isn't displaying any signs of steroid toxicity. We have much to be thankful and especially when they tell me of how much worse it could be.  Ethan has been spared many of the really bad side effects and for that I will be forever grateful and thankful. His blood pressure is normal when so many kids suffer with that, his bones and eyes are okay and he is growing.

The doctor said that compared to many other kids, Ethan is growing at a normal rate. Which is good news and surprising because of all of the steroids he has had over his life. He is in puberty and starting to hit his growth spurt so as long as he keeps growing and doesn't stay the same height, they consider it a good thing. If he were to stall in growth, and he suffered some of the other issues, they would look at changing the MMF. They do classify Ethan as a frequent relapser and being steroid dependent, so we will have to see them every 3 months. I feel good about that though as they give him a thorough check up and make sure he is doing alright. We did end the check up with a blood test just to make sure his blood cell counts aren't too low. I don't know the results yet though.

For now Ethan will continue to take the MMF twice a day and we are taking it one day at a time. I don't know how long this period of no steroids will last. Every day I physically exhale with relief when I test his urine and realize he has made it one more day... That's all we can do for now, and we are going to embrace and be thankful for every day that he is off. Thank you for praying and continuing to support us. I don't know where we would be without prayer and the love of so many and especially our Heavenly Father. Who never once has left us to walk this road alone.
Wishing you all a Merry Christmas with your families,
Love Laura, Jeff, Adam & Ethan

Hope

Today is a big day for Ethan as this is his first day without prednisone in 6 months. This is something that I didn't even think was possible just 3 short weeks ago. At Ethan's visit to Children's Hospital at the beginning of August, they informed us that he was spilling protein and was headed for a relapse. The day before he was negative for protein so it came as a complete shock that he was spilling protein. It was a hard visit, an emotional one as the Doctor's explained the next steps and that when he reached the level of complete relapse that they would increase his MMF dose yet again instead of trying a new medication. A plan was set in place and all we could do was go home and wait.

You can imagine our complete shock again when the very next day Ethan was a trace for protein and then the next day after that was negative and that is where he has stayed for the last 3 weeks. We continued to wean him from the prednisone down to 5mg and 2 days ago he took his last dose of prednisone.

I can't comprehend or figure out why he would spill protein on that particular day other than to say that I believe God knew I needed to talk to his doctor's. If he wasn't spilling protein that day we wouldn't have been able to talk thru the next steps should he relapse again. I was able to ask questions and Ethan's Nephrologist in turn asked me a very tough question. One that made me cry and I try not to do that in front of Ethan but I did anyway. He asked me if I trusted him? He went on to explain that he has his very best interests at heart and if Ethan were his child he would treat him the same way.

I said I did trust him and I am very thankful for the great care we receive from them. But I did say that I don't believe them anymore when they tell me that he won't relapse again. Every time they have said that, he has relapsed. So I would rather not be told that because it gives false hope and hope is something I have struggled with. Do I dare hope that this is the last time? Do I have enough in me to hope that this might finally be over? I am skeptical even to share this now, because I don't know what tomorrow will bring. All I have is today and today Ethan is doing well. I choose to celebrate that and try not to think about tomorrow. For those that know me well, know that I really struggle with letting go and not worrying about tomorrow. It is so hard to do, some days I find I can rest in God's promises and some days I fail miserably.

I am so thankful to God for the many jewels he has given me, us along the way. I truly believe God had a hand in that visit that day and he knew what needed to happen and despite the unknown's. I place my trust in him, clinging to the promise that he is and forever will be with us no matter what may come. I have been praying for months that God would allow Ethan to get off prednisone so that he could enter High School in September without being on prednisone. He is in the midst of his growth spurt and being on prednisone stops him from growing, so he is hoping he can get off so he can grow some more :) His immune system will be suppressed so we are also praying for health as he enters School soon too. Getting sick can trigger a relapse so praying he can stay healthy.

For my praying friends, we would love for you to join with us in praying for this and we will keep you posted on how things are going. My next goal is 1 month without prednisone, praying for that!!!

Relapse # 22

We have been weaning Ethan from prednisone for the last 9 weeks and we had another 3 weeks to go until he would be fully off. Seven days ago when Ethan reached 10mg, we began to notice his seasonal allergies coming back. I don't know how to put into words how I knew, but I just knew at that point a relapse was coming. Even before Ethan's relapse in March, God was bringing people across my path, things I would read or come across all had the same theme, preparing me for something that was coming.

In February a full 6 weeks before Ethan would relapse, a friend of mine came to my door and gave me this scripture. She said God has laid it upon her heart to give this to me.

Isaiah 41:10 "So do not fear, for I am with you; do not be dismayed for I am your God. I will strengthen you and uphold you with my righteous right hand".

I was so thankful for this friend and giving me this verse, I put it beside my bed on top of my Bible and every night and morning I would repeat this to myself. But deep down I questioned, why would God give this to me? What is coming that I need to be reminded of this. I was uneasy in my spirit every time I thought of this, until I began to say this verse to myself, then I would calm down. Little did we know 6 weeks later Ethan would relapse. Relapses hit me hard emotionally and really it affects the whole family. I didn't realize how much it affected even Adam until a few years ago. Having boys they don't often talk about their feelings, especially Ethan. Today for example he tested himself and he didn't want to tell me what it was, he wanted me to go and see for myself.  He never talked about the result either....  He knows I blog by the way, but he hasn't yet read any of my posts. I started this blog for myself and to give family updates. Maybe one day he will read this and then again maybe he won't.

So please keep us all in your prayers as we figure out what to do with his medications. Pray that Ethan can finish up the school year well. He finds concentrating and getting his assignments done much harder when he is on prednisone. He was doing so well at handing his assignments in until this relapse in March. Pray for the Doctor's to know how to best treat Ethan and that he will finally be able to get off prednisone. Waiting on the Lord once again to supply our needs and give us strength.

Children's Visit

Today Ethan and I made the trek into Children's Hospital to see his Nephrologist. The commute normally takes about an hour, but today there was an accident on the highway and we ran into all kinds of traffic so our journey took almost 2 hours. We were running late and I do not like to be late, so I was super anxious that they would think we weren't going to show up to our appt. I couldn't find anywhere to park and construction was causing all sorts of chaos around the Hospital and I am not good with directions and even though I have been there many times. I could not figure out how to get to the clinic with all the construction thus adding to my stress. As we were walking into the Hospital they were calling me wondering where we were. I did a big exhale as we finally sat down to wait to and poor Ethan all that rushing around and my anxiety gave him high blood pressure. They had to test him 3 times before it became normal. OOPS!!! 

I am so excited that we were able to be part of their new Nephrotic Syndrome clinic at Children's Hospital. This means that they have a lot more services available to us for support and we can see multiple people in one visit. We had a nice chat with the renal dietician about sodium and fluid restrictions for Ethan. If Ethan is in a relapse ( having protein)  and while on prednisone he is to have no more than 1500mg of Sodium a day. Which is not a lot when you think about it, and then you add in the fact that prednisone makes you super hungry. Ethan literally daydreams about food while on prednisone. It always makes me smile because off of prednisone he is NOT like that at all. I do feel bad for him though because the prednisone makes him crave the foods he cannot have, like hot dogs, pizza and chips... We do try to make our own pizza and foods for him at home which are lower in sodium so he doesn't feel like he is totally missing out. Although hot dogs and sausages I have yet to find a low sodium version!

The Doctor was very happy with how much Ethan has grown in the last year. They do believe one of the reasons Ethan could have relapsed is due to the fact that he had grown so much and the MMF was no longer strong enough for his height and weight. Allergies could also play a factor as anything that stimulates the immune system can cause a relapse. Jeff and both the boys were sneezing in early Feb and March due to the early Spring we were having. So that could be another reason but of course relapses can come for no reason at all as well.

They are going to increase Ethan's MMF to two pills a day twice a day and see if that helps. He will continue on the MMF as far as there are no issues for the foreseeable future. They hope that the increase in MMF will also help Ethan get off prednisone by late June. Ethan has had a lot of prednisone so they are sending us for an X ray of his Spine to check for fractures. Apparently in 10% of NS kids they can have small spinal fractures and not even know it. If he does have one, this would affect how they treat Ethan with prednisone in the future. Ethan has been complaining of aches and pains since starting on prednisone as it is very hard on the bones. But they were happy to hear that he is able to play volleyball and encouraged him to stay as active as he can. Activity helps them deal with the weight gain and blood pressure side effects of the prednisone. Not to mention being active makes one feel better, although many many times it is SUPER hard to get Ethan to do anything. Prednisone takes away his desire to do anything. But having heard it from the doctor will hopefully help remind him to stay active as possible. We are so thankful that despite everything, Ethan continues to have less issues than most. I praise God for small miracles like that, knowing it could be so much worse. I pray that one day my sweet boy will be free from all of these medications, tests and doctor's visits. Until then we will keep pressing on and putting one foot in front of the other. Trusting in the one who knows and cares for him so much more than we do.  Thank you all for your continued support and prayers.

Prayer Request

So it has been almost a year since my last blog post and I haven't had much to report until now.... After 14 months of being on this drug MMF Ethan has been enjoying a time of relief from prednisone. He has been enjoying eating things normal kids eat and that includes salty things he normally isn't allowed while he has protein or being on prednisone. He has finally been able to sleep and get into more of a routine in that department which has helped him immensely with functioning well at School. He has been feeling well enough to join the volleyball team and is currently playing club volleyball. He does get more fatigued than other kids due to the drug he is on, but it is much more manageable than we thought. This winter Ethan did get sick quite a lot, and that is also because of the MMF and the strong immune suppression. But during those times of illness Ethan rarely had any protein or if he did it was minimal and went away quickly.

So you can imagine our shock and surprise when Ethan tested himself this morning after seeing a lot of foam in the toilet and discovered that once again he is spilling a lot of protein. I have really relaxed on testing him and so it has probably been a month since I last tested him. So we really have no idea how long this has been going on. Earlier in the week he was complaining of being very tired and I have noticed that in the last few weeks he has been looking very pale and his appetite has decreased even more than usual.

So for now we will have to wait a few more days and then call Children's Hospital to see what they want us to do. It isn't a good thing that he relapses while on this MMF. Ethan is understandably concerned about going back on prednisone. We have so enjoyed these last 14 months of him being off prednisone. The side effects are so harsh and really change Ethan's personality and changes really everything about him.  So please join us in praying for Ethan that the protein will go away quickly before any medical intervention is needed.

Check up

This morning Ethan and I headed into Children's Hospital for a checkup. It has been two months since he has stopped prednisone and started this new drug. I have to say that Ethan is managing far better than I ever thought he would. They prepare you for the worst and tell you to hope for the best. So it was great to hear from his Nephrologist today that they are SO pleased with how well he is doing on the MMF. In the two months since he has been off prednisone he has grown 2 and a half cm. Which is fantastic, he has a whole year of growing to catch up on. His blood pressure was a little lower than normal this visit, and when I told them that Ethan almost fainted after being in the hot tub while we were in Maui over spring break. They said it was likely due to his blood pressure being too low and being in the hot tub too long. We had a fantastic time over spring break enjoying the sun and being with my family in Maui. We soon found out that the MMF causes sun sensitivity, so Ethan was a bit disappointed that he couldn't be out in the sun like he usually can. Even with a high SPF, he still managed to burn, but he came home with some color which is what he desperately wanted. His Nephrologist said that being in the Sun is really good for his bones, and he was happy that we had a chance to get away.

 Ethan is still dealing with a lot of bone and joint pain and his Neph hopes that as time goes on and he remains off prednisone that it will improve. So for now the plan is keep him on the MMF for the next year and then they will talk to us about weaning him. The hope is that the MMF gives his body a good rest from the steroids and that maybe he will get another few years off of everything. But he did say that Ethan could still relapse even while on the MMF and if he gets protein he will have to go back on prednisone. He has been sick once so far while on the MMF and they were pleased that he didn't get a fever or have any protein. Hoping and praying that continues. It has been an absolute joy seeing Ethan's true personality coming back, his smiles and sense of humour. I have really missed my son. Although he is very tired still, he is slowly finding the energy to return to sports and is enjoying playing badminton and club volleyball. Thank you all for your continued prayers, we appreciate it so much.

Update

I am super excited that Ethan had a great doctor's appointment this afternoon. His blood pressure and all his blood levels are in the NORMAL range!!! Which is amazing because the new medication can cause high blood pressure. He will have to get his blood pressure checked once a month. As well, his blood tests are all normal which is also amazing considering how the medication suppresses the immune system. His doctor advised that if he gets sick we will have to get his levels checked again to make sure they don't drop too much. But for now, we are celebrating that he is doing fairly well on this new medication. He continues to be tired and his appetite has decreased but his weight went up from last month, so maybe he is eating more than I think!

Tomorrow is also a big day for Ethan as he takes his last dose of prednisone. So far he has been negative for protein and has passed the point of where he has been relapsing. So we know that this new medication is working. We are hoping and praying that Ethan will finally be able to get off prednisone and hopefully be relapse free for awhile! I will keep you posted as to how it goes, but thank you again for your continued prayers. We really appreciate them, and I truly believe that God is using those prayers in helping Ethan. From reading other patient's stories, we know it could be so much worse. So thank you so much for your love and prayers!

Update

Tonight,  Ethan will move up to a full dose of the MMF that he has been taking these last two weeks. It is double the strength he currently has been taking. I am so thankful that these last two weeks have gone much better than we anticipated. Ethan has had some stomach pain and whenever I ask him how he is, he says he is tired. We have also noticed a big reduction in his appetite, some days he seemed to lose all interest in eating. Which is one of the side effects of the MMF, but it is weird to see him go from being super hungry all the time on prednisone to not really having much interest in food.

Ethan did come down with his first cold while on the MMF and Prednisone last week. I was super nervous about this, as I had no idea what to expect. So in a way, I am glad to have it over with and it gives us more of an idea of what to expect. He did get the cold more severley than his brother and it also took him longer to recover. But other than that, we are so thankful that the cold did not trigger any protein and he did not have a fever or any other complications. One less thing to worry about!

Tomorrow is also a big day for Ethan as he will reduce his prednisone to 1pill (5mg) every other day for the next two weeks. Then if all goes well at the end of those two weeks he will officially be finished with Prednisone. BUT, this is the dose that Ethan has been relapsing at for the last few months. So I have no idea what to expect. Children's did warn us that he might still relapse 1-2 times even with the MMF. Anymore than that, and they would look at switching drugs for him. So please pray for Ethan, that he would be able to handle the full dose of the MMF without any significant side effects. As well as we desperately want him off Prednisone, so please pray that he will be able to get off this time. Thank you so much, Laura, Jeff, Adam & Ethan

Children's Visit

Today was a big day for us as we headed into B.C. Children's Hospital to discuss with Ethan's Nephrologist putting him on another drug. I am so glad that Jeff was able to be with us, having another pair of ears to listen as well as to ask questions. So the big news is that after a lot of discussion, his Nephrologist decided to put Ethan on a drug called Mycophenolate Mofetil or MMF for short. It is a drug that they use in organ transplant recipients to prevent the rejection of donated organs. But they also use it to treat a variety of autoimmune diseases including, Nephrotic Syndrome. As it impairs the function of immune system cells that become overactive in autoimmune diseases.

From what I understand MMF is not a chemotherapy drug like the one he took 4 years ago. But it does and will suppress his immune system, even more than the prednisone does. Making him more prone to getting viruses and infections. It will also lower his blood cell counts so he will have to have blood tests to check that his levels don't get too low.

Ethan's Nephrologist assures us that this drug is well tolerated among children at their clinics. But I have to admit the long list of side effects is rather scary to read. They said the most common side effect is diarrhea and stomach upset. If that happens and becomes too bothersome, then we might have to change drugs. I did tell them that Ethan already suffers with a lot of stomach pain because of the prednisone and that he is taking medicine for it, which has been helping. He did say that once Ethan gets off  prednisone, he wants him to stop the medication to help his stomach as it won't do anything to help with the stomach pain caused by the MMF.  Unfortunately, there is nothing they can give him to help with that... other than stopping the drug.

The long term side effect that concerns me the most is that taking this drug increases Ethan's risk for getting certain types of cancers down the road. The down side of MMF is that Ethan will have to take it for at least a year and possibly even two. It was also disappointing to hear that Ethan may still relapse while taking the MMF. Which means that he would have to continue taking prednisone as well as the MMF. We were really hoping that he wouldn't have to go on anymore prednsione, that starting this new drug would help him to never have another relapse again. To be our miracle... But that doesn't seem to be the case, as his Doctor reminded us once again that there is no cure.

As we once again step out into the great unknown, I would ask for your prayers. Pray for Ethan that the side effects will not be too hard to manage. Pray that this new drug works, and that he will be able to be fully weaned off the prednisone with NO more relapses. Pray for good health for all of us so that we don't bring home any germs that would complicate Ethan's life anymore. Pray that we would continue to find our strength in Jesus and that this next step of the journey will bring us closer to him and to each other. Without a doubt, we know that God has never once left us on our own and we will trust in him to get us through this next year. I will update you as I can to let you know how he is handling this new drug, Thank you for praying, lot's of Love, Laura, Jeff, Adam & Ethan

A Look Back on 2013

The start of a fresh new year is almost upon us, and I find myself reflecting on the year that was and wondering what 2014 will hold. This time last year we were still blissfully unaware that Ethan's health would soon take a turn for the worse. After 3.5 years of Ethan enjoying being normal and healthy. We had finally come to a place where we thought our prayers for complete healing had been answered. So it came as quite a shock when last January Ethan got a cold, fever which set off the first of 4 relapses in 2013.

Ethan quickly progressed to being steroid dependent again, which means his body can't function without the prednisone. As time goes by, the body stops responding to the prednisone at higher and higher doses till it stops responding to it altogether. In April we were dealt with another complication when Ethan fell in gym class and broke his arm. We were told that he had quite a severe break, one not typically seen in Children his age. We would soon find out that due to all the prednisone he has had over the years his bones had weakened. He had a bone scan at Children's Hospital in July which revealed that he has Osteopenia, low bone density. Healing of his arm took 12 very long weeks. During these 12 weeks, Ethan and I became regulars at the Cast Clinic at our local Hospital, with visits and X rays one to two times a week to make sure it was healing correctly. Prednisone slows and impairs healing which is also why it took so long to heal. We were so happy when we finally began to get good reports from the Doctor that his arm had finally begun to move into the right place and the threat of surgery to repair it had officially passed. Ethan finally was able to get his cast off at the beginning of July right before our big trip to Europe.

We backpacked around Europe for 2.5 weeks with my parents in July. We did a lot of walking and saw so many great sights and monuments. It truly was a trip of a lifetime and we have great memories of all the places we went. Jeff and the boys favourite place was Switzerland and mine was Paris, with Italy coming a close second! We were so thankful that even with all of the travel and the exposure to great crowds of people that we all managed to stay healthy. Even Ethan with a compromised immune system, God was surely looking out for us.

September brought about Ethan's 18 relapse, just as he was starting Grade 7 and Adam Gr.9. Treatment lasts 10 weeks but this time Ethan once again started to relapse at the lower doses of prednisone and officially relapsed for the 19th time in the middle of November. We had officially had 4 relapses in one year. 4 is the number of relapses he is allowed in one year before they will consider adding on another medication to help get him off prednisone.

So our next step is to meet with his Nephrologist on January 7, 2014 to discuss adding on another chemotherapy drug. Ethan is to the point where he just wants to get off prednisone and he is oddly okay with having to go on another chemotherapy drug. I don't know much of the details yet, but I do know that treatment will likely last a year this time. I am not too excited about that, but at this point getting him off prednisone is something that NEEDS to happen. Never did I think that by the time my Son was 12, he would have to face chemotherapy twice and he doesn't even have cancer! Thankfully the dosage is much lower than cancer patients get, but it is still chemo, it will further suppress his immune system and has long term side effects that are devastating if I let myself "go there". 

September also saw us bring a new addition to our family, our beloved little fur baby, Lily. A sweet and lovable Maltese Shitzu puppy. She came into our lives at just the right time, we were ready, the boys were ready and she has been such a joyful addition to our family. She has been a great distraction for Ethan when he hasn't been feeling well. She has also been so good for me as I have struggled with feelings of depression again. She gets me outside when I don't want to go anywhere or do anything. I am amazed at the Beauty all around me if I simply just look UP! I have seen the most amazing sunrises, sunsets, cloud formations, rainbows! It is hard some days to see the Beauty but it is there. We know we are not on this journey alone, we are so thankful to God for being with us ALWAYS. For our family and friends who provide such amazing support and for all the prayers. They truly do make a difference. Here's to 2014!

“But one thing I do:
forgetting what lies behind
and straining forward to what lies ahead…
I press on toward the goal for the prize of the upward call of God in Christ Jesus.”
~Phil. 3:13-14

Relapse

Ethan has once again relapsed, he started spilling protein shortly after we dropped his dose down to 5mg every other day. Which is the same point where he relapsed last time. This morning he started back on his full dose of prednisone at 60mg every day. Once he is negative for 3 full days, we are to call Children's back and they will advise when Ethan will start on the chemo drug. I feel so bad for Ethan as he once again has to start this process all over again. He has hardly grown in the last year since starting prednisone and yet he has gained almost 20 pounds because of all the prednisone. He definitely does not like how the prednisone has changed his face. Please pray that Ethan will be able to get to negative quickly so that he can get to the every other day dose. The every day is very hard on him and us. I have no idea what to expect with chemo, hoping they will tell us more in a few days.

Children's Visit

Headed to Children's Hospital with Ethan... It's a big day, discussing the big guns (chemo) and what that will all look like treatment wise if he relapses again. Ethan is already feeling like a relapse is starting, although it is not yet showing up on his test strips. He was really worried this morning because his eyes were puffy and his skin felt very tight. It amazes me how the body can detect such small changes long before it actually shows up on tests. Pray that I will remember everything, Jeff has to work today so I am going it alone!


The paragraph above was my Facebook status this morning. First off let me say Thank you to all of you who prayed for us this morning. Our appointment couldn't have gone any better and I truly felt your prayers and was filled with peace and calm. It was a long day, up early and an extra long wait time at the Hospital. But I was able to get my questions answered and more importantly I think it was very reassuring for Ethan and myself. I told Ethan that he had to tell the Doctor's how he truly felt, rather than just smiling and saying he is fine. When in fact, there are things he is struggling with. 

I thought I had prepared him well to feel comfortable enough to at least mention how he is feeling to them. But NO, he just smiled and said he was fine. Seriously, he does not get that from me. I will usually straight up tell you how or what I am feeling. My Dad used to tell me that I wore my heart on my sleeve! So once we got past the awkward and embarrassing sharing of feelings and how he has been doing on the prednisone. The Doctor was able to tell Ethan that what he was experiencing was totally NORMAL!!! He said that once he comes totally off prednisone he should begin to feel better and much more like his old self. All the aches and pains, bone and joint pain, insomnia, depression are all prednisone related. Which is pretty much what I expected him to say and have been telling Ethan. But I think it was reassuring for him to hear it straight from the Doctor. That what he has been experiencing is normal and that he isn't imagining it. 

Ethan is currently taking 10mg of prednisone every other day. So he has about 3 weeks left to go before he is totally off. The plan will be as follows: If Ethan relapses while tapering the steroids or shortly after he comes off prednisone. They said he will have to restart prednisone, going right back up to the high dose of 60mg every day.  Prednisone is the only thing that will get rid of the protein in his urine, Chemo alone will not do that. With this particular drug, you have to take it twice a day, every day for a year! We weren't expecting that number, but he did say that the drug is usually tolerated quite well by most kids. With hair loss being minimal and most of the noticeable side effects being nausea, diarrhea and stomach pain. He did not get into the more serious risks of using this drug. Probably because he doesn't want to scare us, and because he is a let's cross that bridge when we come to it kind of Doctor. Hmmm, sounds like my Husband.... So I am trying not to go there either and just focus on today, and to Ethan finally getting off prednisone. I hope and pray this will be the time he can get off.

Update

I just realized it has been over a month since my last update, I have had lot's to say but have had a hard time finding the right words. I will start with the basic update on how he is doing physically. We are happy that Ethan responded to the prednsione, he was negative within 2 weeks of starting it. The every day dose is very hard on him and 2 weeks seems like forever when you are going through it.

We then moved to 40mg every other day for 2 weeks and then we are to reduce his dose by 10mg every 2 weeks after that. The whole process takes 12 weeks, so we have about 6 weeks left to go in this round. We are continuing on his 1200mg a day limit of Sodium as it makes him feel better and we have found if we do cheat, his protein will go up. He has caught a cold twice in the last 6 weeks and that only made his protein go up to a trace, so thankful that it didn't go up any higher.

For the most part Ethan is doing well, he amazes me at how he pushes through the School day even when he doesn't feel great. The side effects of the prednisone get less each time we reduce his dose, but that doesn't mean they go away. In fact every time we reduce his dose, his body takes almost a week to adjust to the lower dose. His body aches and he gets very tired, usually but not always that translates into sleeping somewhat better and a decrease in appetite.

Prednisone causes a lot of mood and personality changes as well, and over the years Ethan has experienced anxiety, depression and insomnia. At times it has been very hard to watch prednisone mask Ethan's true personality. It was such a joy to see him come alive for those 3.5 years he was off. Everyone tells me how great Ethan looks and from the outside he does. Although he does not like the round moon face and red complexion that the prednisone gives him. For the first time in his life he asked to get retakes for his School photos. I am thankful that so far the kids at School have not made fun of him for the changes that happen to him.

The emotional side effects of prednisone are some of the hardest and most painful for me to deal with. Seeing my happy go lucky son who loves to do sports and be active, change into a depressed, anxious, insomniac is very hard. Ethan keeps how he is feeling emotionally to himself and it is very hard to get him to talk about his feelings. I though he was doing fairly well this time and was thinking we were going to avoid the typical meltdowns that happen when he has just had enough. Well last night is when it finally happened. An hour after Ethan went to bed, I heard him crying and when I went in to see what was wrong. He said he was feeling very sad, he didn't know why he was sad and that he had been feeling that way for a few days already. I told him it was probably because of the prednisone and that it should get better in a few days as his body adjust to the lower dose. We just reduced him to 20mg on Monday. Most of the time the sad feelings comes and goes and is not a constant, so I am thankful for that. So I prayed for him, dried his tears and my own and he went to sleep half an hour later. He is very tired this morning, but still wanted to go to School. Prayer requests would be for Ethan to continue to stay healthy and protein free and as well as for his emotional health. I struggle with depression so I know how hard it is to feel "happy" when everything in you just can't do it. Thank you for your prayers, we are so blessed and thankful to have such great love and support as we journey through this with Ethan.

18th Relapse

So here we go again, entering Ethan's 18th relapse. I can hardly believe he and we have gone through this 18 times. You think I would be used to this by now, but the pain of watching my son suffer is something I will never get used to. Ethan has been spilling protein since August 18th as soon as we dropped his dose to 5mg every other day. Now that we stopped the prednisone his protein has gone up the highest level and he has started to gain a pound of fluid a day. I called his Nephrologist today and the decision was made for him to start back on prednisone, although there is a twist.

 They want us to start him back on 10mg every day until Monday, and then I am to call them and let them know how he is doing. If he continues to spill or there is no change then he will have to go back up to the full dose. The reason for this change is that they finally have the bone density scan results. It shows that he has Osteopenia, which means he has low bone density, but not yet full blown Osteoporosis. So this means that they really want to limit how much prednisone he will receive because of it's effect on his bones. With those results, they have decided that we will have to come in and discuss adding another chemotherapy drug to the mix. I will probably find out Monday when that will be. As you can imagine this is a lot of information to digest and I think I am still in shock that this is indeed happening again. I want to be strong for my son but the thought of having to go on chemotherapy drugs for the 2nd time is breaking my heart. Please keep us all in your prayers as we continue to digest this new information and wisdom for the doctors to know what the best options are for Ethan.

Road Block

Well things are not going as we had hoped. Ethan started spilling protein within 2 days of his dose being dropped to 5mg. This is not good news because this means that he has once again become steroid dependent. I called his pediatrician and she said to keep going with the 5mg every other day dosing until his protein has reached the highest level for 3 days. Then I am to call Children's and see what they want to do. I am feeling very discouraged as School is starting in 2 weeks and I had hoped that Ethan would not have a relapse right at the beginning of School. I am also frustrated that Ethan's bone density scan results are still not available. Please pray that they will get the test results to Ethan's Nephrologist ASAP, as that will determine the next steps for treatment as well. We are at the beginning stages and so far Ethan is feeling pretty good, other than being more tired than normal. We did notice that he was experiencing more fatigue when we dropped his dose down to 10mg. He was just starting to sleep really well and now in all likelihood he will have to start all over again. That is one of the hard parts in dealing with Nephrotic Syndrome, the constant ups and downs. Never knowing what tomorrow will be like, it really can change in the blink of an eye. We would appreciate your prayers and I will keep you posted as we go along.

Summer

It's been awhile since my last update, so here is what our Summer has been like. We had a fantastic time backpacking around Europe for 2 weeks in July. Our plan was to visit 5 Countries, London, Paris, Italy, Switzerland and Germany. There was a lot we wanted to see and do in a short amount of time. My biggest concern while we were away was keeping Ethan healthy. With Ethan being on a what his doctor's called a medium dose of Prednisone. He was considered to be immune suppressed and therefore at a much higher risk of getting sick than you or I would. We were in so many public places, buses, trains, attractions that were jam packed with people. I was praying that we all would stay healthy despite the thousands of people we were coming in contact with. When we travelled by bus or train, many times there was simply no seat available and you had no other choice but to stand and hold onto a pole among a crowd of other passengers. If you didn't hold on, you were going to fall over once the train started moving. I am so thankful and happy to report that NONE of us got sick during or after our travels, which is amazing to me considering all the people we came in contact with. Praise the Lord for travelling mercies!

I am also very thankful that Ethan did not have any protein and was in pretty good spirits and felt well enough to handle all the walking. Both the boys did a great job with packing up and travelling to a new place every 2 days. The only problem we did have started about 6 days into our trip. When Ethan's big toe started hurting and we realized he had an ingrown toenail, which eventually got infected. Thank goodness my Mom had packed polysporin and some band aids. We also tried to soak his toe in salt water, when we could, but the last few days in particular became very painful for Ethan to walk.

Today we went for a checkup to our local pediatrician and she was very happy with how Ethan is doing. He is now down to the last few weeks on prednisone. If all goes well, two more weeks and he will be off. I am feeling very nervous, anxious at this point because last time Ethan only managed 12 days off prednisone before relapsing. School starts on September 3rd and I don't want him to relapse right when School starts. I was mentioning to his doctor that as soon as we hit 10mg of prednisone, Ethan's ezcema and allergies started coming back. Prednisone suppresses these reactions especially at the higher doses. Both of these conditions can trigger the immune system which can lead to a relapse. Which is what happened last time.

 I told her I was doing everything I could to prevent him from reacting, washing his bedding often, vacuuming and dusting his room, and so I asked what else I could do, when she said this to me... Laura, you can't DO anything to prevent a relapse, if it's going to happen it will happen regardless of what you do. Wow, now that was what I needed to hear, because at this point in the treatment I get very anxious as we wait to see what happens. In a disease I have no control over, I try to manage what I can, thinking if I can protect him from germs or if I cleaned my house even better than I have before, maybe just maybe he won't relapse. Hearing that there isn't anything I can to prevent this, was so reassuring. Only God knows what is going to happen next and I am glad that I don't know what the future holds because I know it would cause me to worry too much. So I am holding onto God's promises that he will be with us whatever comes next. It's a daily battle I fight, peace versus worry, God versus Me. So please keep Ethan in your prayers these next few weeks as he comes off prednisone. Pray that he will be able to have a great start to his Gr. 7 year and be able to be off prednisone for at least a few months!

Children's Appt

Ethan had another visit to Children's this morning, this time with his Nephrologist. I knew going into this appointment that they were considering adding a chemo drug to Ethan's regime. I made sure I  talked with Ethan about this possibility before we went so that he wasn't blindsided when we saw the doctor. He surprised me and actually said he would like to go on it again, if it meant that he could get another few years off prednisone. Unfortunately it isn't that easy and going on chemo again has significant risks, and at this point they have decided to wait before they try him on anything else.

They are also waiting to find out the results from his bone density test that he had last week. This will also determine what medicines they will be able to use if he relapses again. Ethan's arm has officially healed, after 10 long weeks. We are so very happy that he seems to have full mobility and no pain. His arm is very skinny ( incredibly hairy) and weak as he lost a lot of muscle and strength. The doctor suggested he go swimming to build up strength.

On a positive note, since Ethan has been taking 1000mg of Calcium a day he has grown an inch and a half in 6 weeks. AND that is with him being on prednisone!!! Normally he doesn't grow at all while on the prednisone but only when he comes off. His Nephrologist was very happy with that and he took that to mean that the prednisone isn't affecting his bones if he is growing while on it. I have to say I don't agree with him, I think it has everything to do with his taking 1000mg of Calcium a day that is helping him grow. The steroids slow and suppress growth, but I suppose that they are hesitant to say it is the Calcium since they don't currently advise their patients to take it. Our local pediatrician spoke to a bone specialist and she is the one who suggested Ethan take the Calcium. I am SO glad we did. I probably should have started years ago, but I can't go back now....

So for now the plan is that we reduce Ethan's dose by 10mg every 2 weeks. He has about 6 weeks left and then we once again wait to see what his body will do.

Summer

School officially finished and we all can breathe a sigh of relief that another year is over. Adam finished Gr. 8 and Ethan Gr. 6. I can't believe Adam will be going into Highschool next year. Time sure does go by so fast. It feels like just yesterday I was holding him in my arms.

The next few weeks we plan to rest, relax and enjoy doing well a whole lot of nothing!!! We do have a lot of doctor's appointments for Ethan coming up. He has X rays again for his arm, his bone scan at Children's as well as his Kidney check up. Ethan has not felt well enough to do much and with his arm he is limited in his activities. We recently dropped his dose to 40mg every other day, so I am hoping this will help Ethan feel better. He has been dealing with increased hunger, which has made it very hard to keep him satisfied with healthy options, especially on his limited sodium diet!

It was particularly challenging at the year end class parties. They had a lot of salty chips and foods he could not eat. Ethan asked me if he could have some chips and I said "No, he could not". At that point we were trying to get him to negative and cheating makes his protein and swelling go up. So he tried again and asks if he can have just one chip from each bowl!!! I again said "No, and I told him he had to be strong, that it wouldn't be forever, but he just can't have that stuff right now. The first thing he said to me when he got in the car that day was, "well I resisted"!!! I did buy him a Coke Slushy for a reward!!!

It makes me sad all the things he has to go through. Watching his personality change again has also been hard. Since I am the one who spends the most time with him, I tend to get the brunt of his mood swings. Some days are easier than others. Ethan has also been complaining of bone pain, which he describes as aching all over his body. I know this is a side effect of high doses of prednisone, but I will be mentioning this to his Neph just to make sure this isn't related to further weakening of his bones. I can't wait to get his bone scan done as it will also help them decide what treatments they will or won't add on to Ethan's current regime.