Today my heart broke a little when Elayna asked what would happen if she got the cancer back again. I wanted SO BADLY to tell her that she wouldnt. Ever. That all of the hard stuff we had done had meant a guarantee that it wouldnt happen, but we all know I cant say that... I gently asked her why she would be thinking about that and she matter-of-factly said, Mom. Kids sometimes get cancer back when they are bigger. I told her that right now we know that her body doesnt show any signs of having cancer, and thats pretty darn good. She seemed satisfied with that and moved on. I am still shaken by the fact that she understands that this isnt automatically over. I wish she didnt. I wish she could just celebrate the victory we are living right now, but I understand how she feels. Its so bittersweet. I am happy and joyful and thankful and content for where we are right now. And yet... I have seen so many kiddos relapse. Its scary to be waiting too. In a much less dramatic way of course, but scary nonetheless. I share this because I have been getting a lot of questions about what NED means and what happens now. **We are in REMISSION. Her scans told us that there is No Evidence of Disease in her body right now. That doesnt mean its gone forever, but that they dont see signs of it. With Wilms we get some really good chances.... a total of roughly 12% relapse, but that includes higher stage Wilms cancers along with cases like ours. We were stage 3 and her cancer was localized to her abdomen. That means our chances are fantastic that she beat it and we get to move on. That does NOT mean though that she is CANCER FREE. We dont get that title for at least 3 years. It takes that long to know if it really worked. We are now playing a waiting game, and even though I feel confident we will win, it doesnt make it easy. Anyway! Elayna is doing SO well right now. She is recovering fantastically from this latest surgery. I dont want to downplay how awesome things are at this moment for our family. We are so happy with how things are progressing. I just wanted to answer the questions. **On a side note. HOW CUTE is this bandage that her surgeon put on her where her port used to be. He seriously cut a bandage in the shape of a HEART. Wow. Love that guy, and all of our healthcare people!
Posted on: Thu, 20 Nov 2014 20:42:58 +0000
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