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.

Back on Prednisone

I have written and rewritten this post so many times today. I can't seem to get my mind to focus on what my heart wants to say. It has been a tough week, Ethan continues to spill protein which has led to him gaining 3.5 pounds of fluid in a very short time. He is feeling very ill as we wait for the prednisone to start working. His Nephrologist advised that we start him once again on 60mg of daily prednisone until he is negative for protein for 3 days. Then we can drop him to 40mg every other day.

They called me today with his latest lab test results. Once again things don't seem to be simple. They told me that Ethan's blood and urine tests show that he is spilling large amount of protein, which I already knew. But the confusing part is that his albumin level is normal. When one is swelling and losing that much protein the albumin level in the blood drops dramatically. So they are not sure what to make of that, considering that he gained another pound overnight, something is obviously going on. They want us to come in to see them in 2 weeks to evaluate him and to discuss possibly adding another chemotherapy drug. As they said he seems to be falling back into his pattern of being steroid dependent.

In the midst of this rather stressful week, Ethan was surprised by his classmates with a handmade get well card. I can't tell you how much that simple act made his day, he hasn't felt well enough to be at School for more than a few hours at a time this week. So when I came to pick him up at Lunch, he had such a smile on his face. I am continually blown away by the love and prayer support from Ethan's teachers and classmates.

Prayer Requests- Please pray that Ethan will respond to the prednsione quickly and that the side effects will be manageable.

Change in Plans

We have finally reached the 6 week mark with Ethan's arm, so this morning we went bright and early to get X rays and then to see the specialist. He told us 3 weeks ago, if everything looked good he would give Ethan a shorter cast. He figured he would need another 2 weeks with the shorter cast for a total of 8. Everything started out looking good, the X rays show that the bone is healing, But and there is a big BUT!!! There is still quite a visible break in the bone, he said it is taking much longer because it was such a bad break and then because of his prednisone use.

 I did tell him that Ethan is once again spilling protein and that he will likely have to go back up to 60mg every day again soon. Ethan woke up this morning, with swollen eyes and the telltale signs of an imminent relapse. It is so disheartening to think that after only 12 days off prednisone we will most likely have to start this whole process over again. I hardly slept last night, worrying about today and the impact of another relapse. We are going to Europe for 2 weeks in July and we will be doing a lot of walking, touring 5 Countries in 2 weeks. The plan is if you can't carry it, don't pack it, so I am really hoping that Ethan will feel well enough to enjoy everything we see and do. WE really want to enjoy it too and if he isn't well, I find it hard to relax and enjoy myself.

But back to Ethan's arm... We were expecting that Ethan would only have this shorter cast on for another 2 weeks, but again things don't seem to be going according to plan. The doctor says that Ethan will need the shorter cast on for another 6-8 weeks, say what???  If he has to have it on that long, we decided to go with a waterproof cast a HOT pink one, (Ethan's choice). The old stinky cast comes off without a hitch, but it is what is under the cast that changes things once again.

We found that Ethan has some skin lesions that look to be very irritated, possibly infected. It could be eczema or just irritated from the cast. In any case, they are bad enough that he decided he didn't want to cover them up with a new cast. Especially since he will probably have to go back on a high dose of prednisone, which also slows down wounds healing.

So plan CDEFG is, a splinter cast, one that he can take off and one for showering. He told us that the splinter cast will not provide enough protection from another fall, or allow him to play any sports or use his arm like normal. He has to be very careful not to get bumped or fall, which concerns me as the Gr. 6 hallway is NUTS and super crowded and he gets bumped all the time. So that is where we are at right now.

 I have to say how proud I am of Ethan, he handled the news like a champ, he didn't cry or complain. He just does what he always does, quietly absorbing it all. He is definitely not verbal about his feelings, if you can get even get him to talk about his feelings. Although his wife one day will want him to talk about his feelings, so trying to work on that! I am so blessed to have him and I think God knew that his Mother needed a child like him. Please pray for Ethan's arm and for his precious Kidney's and for all of us as we continue to journey along side of him.

Children's Check Up

Just got home from Children's Hospital, and my mind is full of information, thoughts and feelings. After 3 years of not being there, it felt like home going back. The Nephrology Nurse, who sees us before we see Ethan's Nephrologist, was so excited and happy to see Ethan, and how much he has grown since we last saw her. His Nephrologist was very happy that he responded so well to the prednisone and that he was able to get off within 3 months. This is what they had hoped for when they put him on the chemo drug a few years ago. That if he were to relapse again that he would respond better to the prednisone, and now I understand what they meant.

It was hard to hear that we could expect Ethan to have more relapses over the years. He again reminded us that once you have Nephrotic Syndrome you will always have it. Which is not what we were told when Ethan was first diagnosed. He told us of a woman who was diagnosed when she was 2 and then didn't relapse again till she was 24. He did say that as Ethan get's older he "should" relapse less and that he could go years between them. But of course they can't say exactly what will happen, only what they "hope" will happen. Based on Ethan's past relapse history, he did say that he is at a higher risk for relapses. He did go into what they would do and possible treatment options if Ethan once again became steroid dependent.  I don't even want to think about the options and all the side effects and risks.

One thing that would determine treatment options would be the results for the bone density test that Ethan will be receiving on July 3rd. They are very much looking forward to getting the results for his bone density test as they are in the midst of doing case studies on the use of prednisone and bone fractures. As well as the effect prednisone has on developing bones. Today they were particularly interested in knowing what doses he received and for how long he received them before he came to Children's Hospital. It is the every day dosing that apparently causes the most damage. Which is why they quickly drop him to every other day as soon as they can. I have realized that every doctor treats Nephrotic Syndrome differently and I pray that the dosages and treatment given in Ethan's younger years haven't caused any irreparable damage.
 

Last Day!!!

Today I gave Ethan his last dose of prednisone, YAHOO!!!! I really can't believe that after 3 months we are finally to this point, and that Ethan's body is still managing the quicker wean without any protein. Typically Ethan would need to stay on the prednisone for at least 6-12 month, if he could get off at all. I remember feeling so frustrated as we would get down to the lower doses only to discover we had to start all over again because of protein. I have no idea how this is going to go, and if he will have another relapse right away or not. I pray that Ethan will not have go back on it again for a long time! He has gone through a lot in these last few months. The side effects have been much better thanks to all of you for praying for him. But he still has not been himself and particularly since he broke his arm a month ago, things have been challenging. We have been going for x rays twice a week for the last month, and we finally received word from the Orthopedic Surgeon that Ethan's bones were finally starting to heal, and most importantly the bone had stopped moving. So the danger of surgery was officially over. He said we could come back in 3 weeks for another x ray, and if everything looked good. He said he would consider taking off Ethan's long cast and giving him a shorter one for the last few weeks. We are waiting to hear from Children's Hospital as well about a bone density appointment. After seeing his pediatrician in town for a check up, she agreed that he needed to get a bone density scan done, as well as conferring with the specialists there. They told us to give Ethan 1000mg of Calcium and Vitamin D a day. We had been doing the Vitamin D for years already but we have now added Calcium. Tuesday we go into see his Nephrologist, and I am very much looking forward to that, it's always good to get their advice and have them take a look at Ethan. But I have appreciated so very much Ethan's Pediatrician here in town, who has taken such great care of Ethan, she takes the time to listen to him, and ask him questions about how he is feeling, eating and the side effects.

The side effects are of course very noticeable the higher the dose he is on. But oddly enough as he weans and particularly in the last 4-6 weeks. I have noticed more moodiness, crying, insomnia in the last while than say 2 months ago. I have read that it is normal to experience this as the body begins to handle hormone production and function apart from the prednisone. Recently he had to miss out on going swimming with his cousins from out of town because of his broken arm. That was a very tough afternoon, watching him cry, wailing at some points and not being able to calm him down. Nothing I said or did helped, and I was all by myself dealing with him too. He has had a few more episodes like that, particularly when he is feeling overwhelmed and stressed. He got behind in his School work and having missing assignments also caused him great stress. If he doesn't get them all handed in by June 6 he can't go to his year end class party. Which is also a swimming party!!! He won't have his cast off for that either, so I am bracing myself for another meltdown. Although my Mom graciously offered to host his friends over to their pool when his cast is off. So I am hoping that will help the missing out on the school party blues! So having said all that, now comes the hard part, waiting and continuing to trust in God. It has been amazing to see so many of Ethan's classmates and teachers, praying and supporting him. God has truly been working in the lives of these young ones, praying that the seeds that have been planted will grown and blossom. I love the photo below, we have been reminded and seen God's faithfulness and care for us. Always it comes right when we need it and right when we think we can't take anymore, and for that I am thankful!

Uh Oh!

We finally have our first broken bone in our family, Ethan broke his left arm yesterday in gym class. Thankfully I was in the school parking lot waiting to pick him up when they called me and I was able to get him out of there and to the Hospital within 20 minutes of this happening. Adam and a lot of the Gr. 8 boys were at track meet so Ethan's gym class was a combined Gr. 6 and Gr. 8 boys class. They were playing capture the flag when a taller,bigger, stronger Gr. 8 boy crashed into Ethan. His gym teacher told me their bodies made a loud slapping sound when they hit each other, EEK!!! Ethan fell to the ground and as he did, he heard a very loud SNAP! At first Ethan didn't even cry and his gym teacher thought it wasn't anything serious because he appeared to be okay.  I am sure that he did not want anyone to see him break down and cry, especially in front of the older boys. He held it together until I saw him, and with the amount of pain he was in, I am surprised he didn't cry more! The doctor and nurses said he was very brave!

Unfortunately going to the Hospital involves a long wait, and this was no exception. We waited out in the waiting room for over an hour and a half with Ethan holding his arm and crying in pain. I felt so helpless... Finally they called us in and the doctor came within about 45 min to take a look at him and order X rays. Once the X rays were ready he called Ethan and I over to his computer and we were able to see very clearly the broken bones. He said that Ethan had a serious break called a "Nightstick". It's name originated from when Police would take their baton to hit someone and that person would put up their arm to protect themselves. The bones that would break as a result of that type of hit became known as a "Nightstick" break. He was a young doctor and I think enjoyed telling us the history behind this unique name. Anyway, back to Ethan, he said that this type of break is typically not seen in Children but in Adults. A child would normally have a "greenstick" break, which is what I had when I was Ethan's age. I had to tell them all about Ethan's history with his Kidney's and prendisone use. He said that due to all of the prednisone he has had over the years and the fact that he is now back on it, his bones have likely weakened. It is actually surprising to me that he hasn't had any breaks before now, especially with all of the falls he had this winter snowboarding. Although the guy that he collided with is as big and as strong as a grown man, so Ethan didn't really stand a chance. He also said it broke in a few places along the arm so he would need a bigger cast, past the elbow in order to stabilize the arm.

I asked if he was going to need surgery to repair it and he said he didn't think so. But he said that he wanted us to follow up with the Orthopedic surgeon next week to see how it is healing. Being on prednisone can complicate his healing, and that is why he wants the surgeon to see him next week to make sure it is progressing normally. We are hoping and praying that everything will be fine and he won't need surgery. I will keep you posted on what we find out. Thankfully he hasn't had any protein because of this little trauma either, Phew!! Sometimes protein can happen when things like this happen, it doesn't take much sometimes to throw everything out of balance. I am very proud of Ethan for being so brave and taking this all in stride, the doctor and nurses said he was a real trooper. His pain was quite bad yesterday, but today he is managing with Tylenol. He was super bored today as I kept him home from school to keep his arm elevated. He can't play video games or go on the computer. Right now it hurts too much to move around,hopefully in a week things will be better for him. I hope he doesn't miss too much of School, thankfully tomorrow is a Pro D Day!  Here is a picture of Ethan from yesterday at the Hospital.

Good Friday

"We get that experience of God when He stretches open His arms on that Cross and cries, 'For you. For all your regrets and for all your impossibles, for all that will never be and for all that once was, for all that you can’t make right and for all that you got wrong, for your Judas failures and your Peter denials and your Lazarus griefs, I offer to take the nails, the sharp edge of everything, and offer you myself because I want you, to take you, you in your wild grief, you in your anger and your disappointment and your wounds and your not-yet-there, you, just as you are, not some improved version of you, but you – I came for you, to hold you, to carry you, to save you.'” - Ann Voskamp

30mg

I am doing a happy dance today, as we drop Ethan's prednisone once again. This time to 6 pills (30mg) every other day. We started out at 60mg (12 pills) every day for 2 weeks, to 40mg (8 pills) every other day for two weeks, and now to 30 mg. If all goes well, we will continue to reduce his dosage every 2 weeks. They hope to have him off prednisone completely by May. This is one of the fastest weans we have ever done with Ethan. Like I said before, he has not responded well to these fast weans in the past, often ending right back on prednisone as the dose gets lower. But we are praying that this time will be different.

We had a great checkup with our pediatrician last Thursday, she wants to see Ethan every two weeks to make sure his blood pressure and other things are okay. I love how she takes the time to talk to Ethan and ask him how HE is feeling. When he was younger, I was the one who had to tell them how he was feeling. I did my best to understand how he was feeling and explain that to them. But it is totally different going through prednisone yourself, so I am very happy that he can now express how he is feeling. His blood pressure is normal, which is good. Often kids with Nephrotic Syndrome have high blood pressure and have to be on medication for that too. Thankfully Ethan has never had to go down that road, he has been close but thankfully that is one less thing we have had to worry about. He has gained 8 pounds since this whole episode began in January. What he gained in fluid, he lost a few pound when the prednisone started working. But what you lose in excess fluid, you quickly put back on due to the increased hunger that prednisone causes.

Increased hunger is a whole other beast and at times I just have to laugh at Ethan. When a person is on prednisone, particularly higher doses, they are hungry ALL the time, and Ethan literally thinks and dreams about food all day long. When we drive places and he happens to see a restaurant he starts talking about going in to eat there. Most of the food he craves, he cannot have either, due to the high salt content. At times I do go a bit crazy as I feel like my day revolves around food and what he can and can't eat and making sure I have enough healthy options for him. Again, I am thankful that he is older and I can reason with him more. 

Prednisone also causes mood swings and personality changes, and when Ethan was younger he was very hard to manage at times. I am so thankful that we were able to have 3.5 years of Ethan being off all his medications. It gave us a chance to get to know our son for the first time since he was a baby without prednisone.  I am thankful that so far the mood swings have been better than in the past.  He still has his moments and last Sunday was a particularly bad one. Where he would not come out of his room, take his medicine or talk to me for hours!!!!  All of which are uncharacteristic of Ethan off prednisone. Seeing him like that last week, made me fear for the teen years. The teen years are hard enough without adding prednisone to the mix.

Ethan is also sleeping better since his pediatrician increased his melatonin, and his stomach pains have been much less since she doubled his dose for that too. So that is how things have been going these past few weeks, we are looking forward to a relaxing Spring Break at home, Jeff has to work so it will be just the boys and I during the day. Thank you for your continued prayers, Ethan says he is very thankful that so many people are praying for him. He and we feel that the reduction in side effects and how well he is responding so far is because of all the prayers. Prayer is an amazing thing, and even though our prayers for complete healing have not yet come. We see the hand of God and his faithfulness to us, even in this. Some days it is harder to see what God is doing and why Ethan must go through this again. When you are going through a valley it is often hard to see your way out, but it is in the mountain tops that you can see all that God has brought you through.

Weaning Schedule

Ethan had a checkup today at the pediatrician's office. She was very happy that he is now negative and responding to the steroids. Looking at him she said you can see that he is not sleeping well, he now has dark dark under eye circles. Which is very typically of those that are on steroids, looking at him, is hard to do sometimes because the steroids change his looks and personality. But anyway, back to the visit... His blood pressure is good and his chest and ear infection are clearing with the help of antibiotics so that is good too. We will see her again at the end of next week unless there are any issues. If he gets a fever, he needs to be seen right away, feeling stressed as he just is getting over something and now Jeff said he isn't feeling well.  I was waiting all day for the Nephrologist to call me back from Children's, finally happened while I was driving. Thank goodness I have Bluetooth!

Since Ethan hasn't had a relapse in years they are going to try and see if he will respond to a quick wean. I told them that he hasn't responded well in the past to quick wean's, not that I want him to be on it any longer than he has to. But if we go too quick, he relapses either as we wean or just after he comes off and we have to start all over again. So they want us to try dropping him from 60mg every day to 40mg every other day for two weeks. Then we can try dropping him 10mg every two weeks, they hope to have him off in 3 months, which I am very nervous about. I think it's too quick, but we will just have to wait and see how his body does. The frustrating part of Nephrotic Syndrome is that there is no surefire way of weaning so that he won't relapse. It really is a guessing game and they have told us that, they have to keep changing and trying different ways and hope that one works. Ethan was very happy that he could go down to 40mg every other day, hopefully his body will be able to handle this dose and he can get some much needed sleep!!!

Day 8

Day 8 and Ethan is still not negative for protein. He has gone to trace and then back up one level, back down to trace and now is holding steady at trace. I asked Jeff last night and Ethan this morning, if I should just call Children's today and say that he has been a trace for the last 3 days? Maybe they would take trace as okay and let him start weaning? Both Jeff and Ethan gave me the same answer which I thought was rather funny. Ethan said to me, "No Mom I have to be negative because if we wean too soon I will just have to go back on it again". Okay God, I get it, I have to be patient and wait!!! I just hate the side effects and want Ethan to feel better, waiting and watching is hard, I feel so helpless. Ethan had a great day at School on Tuesday as the stomach pills were helping and he is sleeping somewhat better with two melatonin a night. He had a bad night Tuesday night, his cough got worse and he had a lot of chest and back pain when he coughed. He did not want to go to School, but he had two tests and two projects to present. So I said he had to go and just try to make the best of it. I emailed his teachers and let them know he hadn't slept well the night before and that he may not be feeling his best that day. The support we have received from Ethan's School and teachers has been absolutely amazing. I am so thankful that my boys are able to attend a Christian School. His teacher emailed me that the class prayed for Ethan before class started. He said that after they had prayed for Ethan, he seemed to perk up a bit and had a good day. That made me feel so good, because I know how he struggles at times to get through the day. Ethan started on antibiotics yesterday afternoon for his cough, so hopefully once that kicks in, maybe he will be able to get to negative! Praying it doesn't take too much longer.

Pediatrician Check Up

I am so glad that we had a scheduled check up with Ethan's pediatrician this morning. I had a few concerns and Dr. Cohen really put my mind at ease. She is so thorough, asks how he is feeling and really tries to help us deal with the side effects.  Ethan woke up this morning with a bad cough, very wet sounding, and his protein also went up slightly. Which was very discouraging as he was a trace yesterday. He has to be negative for protein for 3 full days before we can call Children's back and see what the next step is. Dr. Cohen said it was actually quite normal for him to go up and down in the early stages of prednisone. She said she wasn't concerned about his protein today, because it only went up one above trace. She said if it jumped to the end of the protein scale then they would get concerned. She really feels that Ethan is responding to the prednisone and that is a good sign, they don't get "excited" about it until he reaches 3-4 weeks of being on prednisone and still spilling. So we will have to be patient a little while longer at this massive dose! 

To help with the insomnia, she advised that we give him 6mg of melatonin at night instead of the 3mg we have previously been doing. She said it is totally safe and natural and they use it all the time with Nephrotic kids, and that once the dose of prednisone goes down we can go back to the 3mg. But for right now she said he does need to sleep, and melatonin is better than sleeping pills. As for his stomach pains, she also advised that we give him two 75mg Zantac a day, instead of the one pill we were giving him. So hopefully these new additions will make for some good changes for Ethan.

As for the cough that he now has, she is concerned about it. Upon examination his chest sounded very wheezy and because he is immune compromised they don't take his getting sick lightly. For now she prescribed a puffer for him to take. But she said she won't hesitate to put him on antibiotics if he gets worse or a fever. He already has fluid in his ears so an infection might be brewing. He has no immune system to fight this off, and what frustrates me is that he got this cough from the boy who sits next to him at School on Friday. The boy was coughing like crazy and Ethan said "why are you here, you should be at home". " The boy responded that his Dad said it was just a cough and he had to go to School". Just a cough is fine for most kids but for Ethan it can mean he ends up in the hospital. He gets colds/ flu's worse than other kids. So for now we will try the puffer and see how the week goes. I am to phone Dr. Cohen back right away if he gets a fever or looks or feels worse. One good thing is that Ethan's blood pressure is normal. But he has gained 6 pounds now so that is why his clothes are feeling tight! She assured Ethan that once we can get him to every other day dosing he will start to feel better and not so hungry too! So please pray that Ethan will get to negative very soon.

Tough Day

Today has been a rough day for Ethan, he woke up feeling dizzy and tired. We started noticing the side effects by the end of the first day already. Each day they have been getting progressively worse. So far these are the ones we have been dealing with, insomnia, increased hunger, stomach pains and mood changes. Ethan normally does not eat a lot but once he starts on prednisone he cannot stop eating or thinking about food. To top it all off, I need to have him eat low salt foods and that can be very tricky to do when he is craving absolutely everything! His pants are already getting tight and I worry about the weight gain. Prednsione causes the dreaded "moon face" as well as high blood pressure. I worry that kids will tease him because of his sudden change in appearance. He loves to wear skinny jeans but sadly he probably won't be able to wear them much longer. We have also noticed Ethan's mood changing. This is what I was dreading the most, it breaks my heart to see my once happy boy become depressed, anxious, and all around moody person. Today for example, I could not get him to crack a smile. I took his picture and normally he will smile for me, but not today... This is what I am grieving the most, the loss of who Ethan really is. Ethan was a trace today so I am hoping that tomorrow he will be negative. Once he is negative for protein for 3 days, I can call his Nephrologist back to determine what the next steps will be. I have no idea how this is going to go, or what they will want to try. It seems every time is different, but I do know that Ethan does not respond well to a fast weaning process. His body seems to need a long time to come off the prednisone which can be anywhere from 6-12 months. The hard part is that he can relapse while we are weaning and then we have to start all over again. It's hard not to think about the future, but I am trying very hard to take this day by day, moment by moment. Praying that tomorrow is a better day!

Day 1

Ethan's first day on his meds went better than I thought or imagined it would. He went to School today and felt pretty good. The pills taste so bitter, and leave a bad after taste so I am so proud of him for taking all 12 of them with little complaint. Some Chocolate mini eggs helped too :) I thank you from the bottom of my heart for all the texts, emails and prayers. I have felt such a peace today, I know that God is answering our prayers. The side effects will show up soon so praying that they will be more manageable this time. Although this is the highest dose he has ever been on, so not sure what will happen.

We did notice that this afternoon/evening Ethan is going to the bathroom a lot, which is a good sign. This means that the prednisone is working already to get rid of the extra fluid he has retained. He also  started to get very hungry since he came home from School, and now that it is bed time, he is in NO WAY tired! This is what I was afraid of, praying for a good night's sleep for us all!

Back on Prednisone

I just spoke to Ethan's Nephrologist, he called me at home! How cool is that? He is such a wonderful kind supportive doctor, who takes the time to tell me what is going on. He explained that once you have Nephrotic Syndrome, you will always have Nephrotic Syndrome. It can lie dormant for years even a dozen or so before rearing it's ugly head again. So he told me straight out this is something he will always struggle with. Which to be honest is new information to us, we were always told by our Abbotsford doctors that he would eventually "outgrow"this disease. That they more time that went by without a relapse the better. But that doesn't appear to be true anymore.

So on that note, he said Ethan is experiencing what they call a relapse and he said we have reached the point where he HAS to start back on prednisone. If we don't start him on prednisone to stop the protein in his urine, he will get very sick and for sure end up in the hospital. He is trying to avoid a hospital stay if we can. So Ethan will start taking 12 tablets of prednisone a day until he has been negative for protein for 3 days. At that point I am to call him back and discuss his dosage from there.

Ethan is devastated to find out that he has to go back on prednisone, he is not normally a hugger, but he let me hold him as he cried. Don't tell him I said he cried either, boys don't like that sort of thing to get out :). Prednisone has often been called a miracle drug by the medical community because it treats a variety of conditions and it is a cheap drug. But to anyone who has ever been on it or watched someone they love be on it. It is a drug from HELL!!!! I hate prednisone, and yet it has saved my son's life. The side effects are what scare us the most, Ethan knows how horrible it makes him feel and I know he does not want to go back on it. He will experience severe insomnia, mood swings, personality changes, inrceased hunger, weight gain, body changes,stomach pains, slowed growth, and suppressed immune system to name a few!

I think of how we barely made it thru those 7 years, I am so afraid at the moment. Once you have been through Hell, that's how it felt, you never want to go back. So tonight, I don't feel strong, I feel sad and scared, I can't bear to watch my son suffer, oh how I wish I could take this from him. But I know I don't have a choice, this is what we have been given, so I will trust in God that he knows better than we do, even when I don't understand. Please pray for Ethan, he is not handling this news well, pray that the side effects will not be too hard on him and us. That his body will respond to the prednisone fast so we can start to reduce his dosage.  I will update as the days progress, and thank you for your prayers, I can't begin to express how much we have felt and needed them. Laura, Jeff, Adam & Ethan

Still Waiting

Here is what my day looked like: Getting Ethan up in the morning is getting harder and harder, the excess protein makes him feel very tired. He looks very pale this morning and he complains that his eyes and face feel tight and swollen. Once I see that he has gained another pound over the weekend for a total of 4. I realize I have to call someone and my Doctor's office doesn't open till 9:30, two hours to wait.

So I decide to call Children's Hospital Nephrology Dept and see if they have received Ethan's request yet. To my dismay, they tell me that they have NOT yet received his referral. Even though Ethan isn't feeling his best, he surprisingly goes to School without complaining. I need him to go for as long as he can because I know that if he ends up on medication he will likely miss a lot of School.

 So seeing as how I can't call my family doctor to find out what is up, I decide to head to the gym and burn off some stress. As soon as my class is over, I head straight to my doctor's office. I was so not prepared to hear the secretaries answer that the reason she hadn't faxed over the request is because she couldn't find the fax #!     SAY WHAT????? Now it took everything in me to not go ballistic on her, but I have learned that you don't get what you want when you lose your temper. I have also learned that the secretaries hold all the power and if you are nice to them they often will go that extra mile for you. So I smiled sweetly and said I had the fax # at home and would go home right away and phone it to them. As I was about to leave the doctor's office she mentions that the doctor wanted to see Ethan after school today to check his blood pressure and go over his urine and blood tests from Friday.

I am very thankful that my family doctor even though he has admitted that he has no idea how to treat Ethan, he knows that we don't have anyone looking after him at the moment and he wants to make sure he is okay. The results are rather confusing, because believe it or not, Ethan's blood tests show that his Albumin levels are normal, which is a good sign. But that doesn't explain why Ethan is swelling and gaining weight. Normally the Albumin levels are very low when Ethan leaks protein into his urine. His urine tests do show that he has a fair amount of blood in it too. Which he said he expected, and he said in his opinion his Nephrotic Syndrome is definitely active. His blood pressure was also normal which is also a good, but again confusing. Normally blood pressure is high when swelling and protein happen. So these are some things that our family doctor would like answers to as do we!

 As we were leaving the doctor's office he said if we don't hear from Children's in the next day or so, I am to call him back. So for now we continue to wait and pray. Praying that God will answer our urgent prayers and open up a spot for Ethan to get in to see his Nephrologist, and I am praying big and asking God to find a spot for this week!!!!

Up and Down

I guess this is how it is going to go, up and down, up and down.... Ethan's protein is still the same as yesterday, no worse, no better. But after he lost half a pound of fluid yesterday,  I was not expecting to see him gain a full pound so now he is at 79.2 pounds and he started at 76. He was supposed to go snowshoeing today with the school but he said he didn't feel up to doing that, so we are hanging out at home together today. Yesterday I called the Nephrology Dept at Children's Hospital and told them what has been going on, hoping that I could speak to his Nephrologist. I knew that it was a long shot and I was right, because we had not seen them in 3 years they said we had to go back to our family doctor and get a referral to see Ethan's Nephrologist. She said once she has the referral she would try and squeeze us in somewhere. So I quickly called my family doctor and we are going to see him tomorrow morning. So that is where we are at for today. Happy Valentines to you all as well today!

Here we go again!

Here we go again, for the past 2 weeks, Ethan has been back to negative for protein. But when I was getting into the shower and I happened to see foamy urine in the toilet, I knew that was about to change. Ethan was 0.1 yesterday and today he has gone up to 1.0. He has already gained a pound in fluid, and is again exhibiting signs of excess protein, pale, tired and lack of appetite etc. So for now we will have to do what we always do, WAIT. I hate waiting, always have and although I have gotten better at it, I still hate this emotional roller coaster of will he or won't he relapse? The frustrating part is that protein can come out of nowhere, overnight and for no apparent reason and other times it comes on because of a cold, allergies. Ethan is not sick this time, but it still can be from his last cold a few weeks ago. All I know is that it is not normal to have protein and I pray to God that this is not the end of his good health.

Negative

I am so happy to tell you that Ethan is finally back to negative for protein. Thank you to all of our family and friends who have been praying so hard for Ethan these last 2 weeks. This is truly an answer to prayer as I have said before, in the last 10 years we have only experienced protein going down on it's own less than a handful of times. I wanted it to go down on it's own, but I was also preparing myself for the possibility that it wouldn't. So I finally feel like I can exhale, breathe and let go of the tension and anxieties of these past 2 weeks. I went out for coffee with a friend, had my In Laws over for dinner, getting back to normal around here and it feels good. Our biggest challenge will be to keep Ethan healthy, the Fraser Valley is being hit hard with colds and flus, and so we will have to once again be more vigilant about germs. Praying for God's hand of protection over Ethan and our family to help keep us all healthy. This whole issue of keeping Ethan healthy has at times been so misunderstood by people. I could write a whole blog post about the not so nice comments people have made to us over the years. My point is we don't want to keep him from living a normal life. But we are trying to keep him away from those that are actively sick and contagious. So I leave you with this, we don't know what tomorrow holds and I am really working on not borrowing trouble from tomorrow. So I will be thankful for today, that today is a good day and God is still GOD, even if things change!

1.0

It's hard to believe that one week ago, we discovered that Ethan was having protein at 1.0. So it seems rather fitting that today his result would be the exact same, 1.0. This is great news and we are thanking God for answering our prayers. It is looking like we will avoid a relapse now after all. Ethan is feeling a bit better today too, less dizzy so that is also great news. He was very excited that he is coming down and is already thinking about when he can have some of his favourite salty chips! Although I am not ready to allow that just yet. I would say Ethan will be negative for protein in about 2-3 days if things continue to progress like they have.

I have to say that this week didn't bring out the best in me, I feel like everything I had learned over these last 10 years went right out the window. I replaced my trust in God with fear and anxiety, and I am not proud of that. To be honest, I am still scared, if protein could come on after 3.5 years, what's to say that it won't happen again when he gets sick? I guess it is a reminder that Ethan's Kidney's still don't function like ours do. 

Our Sunday our Pastor said the following: " We need to live in utter moment by moment surrendered dependence on God"!

Coming Down!

I heard from our family doctor today after he had spoken to the pediatrician we used to see. She advised that we call Children's Hospital directly and ask their advice as to what to do if Ethan continues to spill protein. I will wait till tomorrow morning to call because it looks like Ethan's protein is coming down. He was in between two levels this morning, the 3.0 and the 1.0. It is a very good sign that Ethan continues to be at the same weight too, although he has had some swelling around the eyes, it hasn't shown up on the scale. Will let you know tomorrow how he is, but we are so relieved that the protein appears to be coming down. Very scared and cautious to say that because it could all change again, but for now, I am trying so very hard to focus on this day and not borrow from tomorrow!

3.0

3.0 is the number that Ethan is today, which is one level down from the highest, YAHOO!!! He continues to spill though which is not a good thing, but so far he is not showing any weight gain on the scale. His eyes are puffy and a bit swollen and he is complaining of a headache, achy and being very tired and thirsty. Probably due to all the excess protein in his body. So for now we continue to wait and see what happens. I hope to hear from the pediatrician tomorrow, but who I really want to talk to is Ethan's Nephrologist at Children's. Last time we saw him, he jokingly said he hoped to never see us again. I want to know what all this protein means, because we really felt like he had "outgrown' this disease like they have been telling us he would since he was diagnosed. Do we have to worry and wonder if a relapse is around the corner every time he gets sick again? I think I have sprouted a few new gray hairs this week, but trying so very hard to put this all in God's hands and I thank you all for praying, we do feel your prayers and it is what is keeping us going!

Grieving

I broke down in tears at the grocery store yesterday, realizing that everything we have enjoyed eating these last few years is about to change. I was paralyzed standing in the aisle not knowing what to buy and what to prepare that is low or no salt AND this is the kicker that Ethan will eat. Eating has always been a battle with Ethan, and I think this is because he has had very little in his life that he can control and eating is the one thing he can control. For the first year that he was off prednisone we did stick to a low/no salt diet because we didn't know if he would relapse and it was just easier to stick with the plan in case he did. Consuming salt contributes to weight gain, fluid retention and puffiness. When Ethan was younger and couldn't talk he would literally pull at his skin because it hurt from being so puffy. As I was searching the grocery aisles for low salt options, it took me back and I began to grieve all that we have enjoyed these last few years. Ethan and Jeff's Sunday night tradition is to make nacho's and Ethan just loves the hint of lime chips. So for now it is back to the low sodium version and probably not every week either.

I have been so thankful for every day that Ethan has been well, for the vacations we have been able to take and for the fun activities we have done together. I have not taken one day for granted, and so I also grieve the loss of what we have enjoyed as I know things will soon change. I am so not ready to go through this again, neither is Ethan. But it is looking more and more like we won't have a choice. Ethan is now at the highest level of protein and so it is only a matter of time before he stops going to the bathroom and starts retaining fluid. His eyes upon waking in the morning have started to swell, he is very tired and super thirsty, which are all signs of a relapse.  Our family doctor called me yesterday to tell me that Ethan's urine tests results were not good, I already knew that, but I guess the doctor's can't just trust me and have to document it in his chart. He said he will be contacting our local pediatrician on Monday for a referral, but in the mean time if he gets worse before we can see someone he said to head to the ER. If it was up to me I would take him today to Vancouver, but I have to be patient and not go too soon, but I don't want to wait too late either or he gets very sick and then would likely have to stay there for a few days. So for now, we are at home and I will let you know if that changes.

Doctor's Appt

Just came back from our family doctor and it went pretty much like I thought it would. He doesn't know ANYTHING about Nephrotic Syndrome, so he has no idea what or how to treat Ethan. I already knew that, but my reason for taking him there is that we needed a referral to our local pediatrician who takes care of Ethan in between Children's Hospital visits. He did order some urine tests, Ethan was very happy that they didn't want blood tests like they normally do.  He put a rush on his urine test and hoped he would call me by tomorrow lunch with some more news. He said he will call our pediatrician and see where she wants to go from there. Ethan and I would rather that Children's Hospital dictate treatment if that is needed, versus our local pediatrician. But we know from past experience, that he has to be a lot more sick and swollen before we can go there. I jumped the gun a few years ago and took him too early and they weren't very happy with me. So for now we wait, oh how I hate the waiting, never gets any easier....

Possible Relapse?

It is with a heavy and anxious heart that I have to tell you that Ethan is not doing very well. He got sick over the weekend with a cold that is going around his class. On Monday he started to get a fever and I thought, well it has been awhile I might as well test him to see what he is at. I was thankful that even with a fever he was just a trace. The next day he felt well enough to go to School, but when he came home he was really pale, and now that I think of it, we have been noticing his paleness for the last few months. Which is also a sign that something is amiss. Ethan also drank his entire water bottle at School and was still saying he was super thirsty, which is also not a good sign. Ethan does not like to drink water and normally does not drink a lot when he is healthy. When he is having protein in his urine, the thirst mechanism gets turned on and they want to drink a lot. But the problem with that is that it also signals to the body to keep all of the liquids he consumes inside his body. Which is is why he gets so sick, all the toxins in his body don't come out like they should through his urine.

I had this feeling late last night just before he went to bed that I should test him and see how he was doing, I can't explain why, I just felt like I needed to. Testing isn't something I have done a lot of lately either, unless he has been sick, then I do, just to make sure. I was utterly and completely shocked to find that he had protein and on the scale of the test strips he was in the middle, well above a trace. Which is what he was just the day before. After 3.5 years of Ethan being healthy and off all his medication. I honestly thought I would never see protein in his urine again. I guess I just finally relaxed to the point where I thought he had for sure has "outgrown" his Nephrotic Syndrome. As Ethan went to bed last night, I prayed for him that his protein would go away on it's own without any medical intervention. Over the last 10 years that he has had Nephrotic Syndrome, I can say that it only went away on it's own less than a handful of times. It is still possible of course and we are praying to that end, but as the day goes on and more symptoms appear. I am feeling less confident that this will be the case. I am so thankful for Ethan's teacher and so blessed that he is able to go to a Christian School. I emailed his teacher this morning to let him know what was going on and he emailed me back saying that they had all gathered around Ethan during their prayer time and prayed for him. Reading that brought tears to my eyes, and I have to say I am sure going through a whole range of emotions right now. One thought that keeps coming to my mind is that I know God cares for Ethan so much more than we do and will be with us if we have to travel down this road again. But I am so struggling at the thought of having to do this all over again, all the side effects, tests, medications. It was such a dark and lonely place for 7 years, I don't want to go back....

This morning when Ethan woke up his eyes were slightly puffy and I carefully documented his weight in my notebook, something we have to do every day while he is having protein. I also tested his urine and was disappointed that he had gone up one level to 3.0 protein. I made a doctor's appointment with our family doctor for tomorrow after school. We have to start all over again and get referral's to pediatrician's and probably for us to see a Nephrologist at Children's Hospital. I will keep you posted as to what I find out tomorrow, but for now we will watch and wait to see what happens. If Ethan continues to have protein and starts to gain weight, he asked that we take him to Children's Hospital in Vancouver rather than our local hospital. Which is probably for the best anyway, because we would be able to see a Nephrologist right away versus waiting months to see one by referral. When he has protein, he cannot wait months to see someone!  So there you have it, we would really appreciate your prayers, hoping this turns around before any medical intervention is needed.