Hope

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

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

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

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

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

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