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.