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!