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!