An update from Amie... Its so good to be home. I cant even begin to describe how much this means to the kids. We had ourselves a very Merry Christmas. :) Madeline has been feeling very well overall but her poor eyes had a major reaction to one of the chemos that was lingering in her body and the first couple hours of every day began with her not being able to open her eyes or look at bright lights. It was terrible! She was incredibly uncomfortable. Luckily, after a few days of some prescription eyedrops she woke up today yelling I can see again! Aside from that side effect, she has been feeling great! Tomorrow Madeline has to be at Yale at 9:00 for a count check. If she needs blood or platelets she will get them tomorrow and, if all is well, should return home. The snow is making us very nervous of course. We are prepared as well as we can be but its always so scary to think about being snowed in with her with no way to get her to the hospital if there was an emergency. We also have to postpone our trip to meet our new Boston Transplant doctor, which was supposed to happen on Tuesday. So were not huge fans of this storm right now. :) Many of you have asked how long Madeline will be home. There is really no answer. Right now we are waiting for her counts to crash. Then they need to rise again. Last time this process took about a month and then they could finally check her bone marrow again and see where we now stand. So we are doing that all over again. This time, we can do it from home with frequent count checks at Yale for blood and platelets. However, in most cases children are readmitted for fever and neutropenia (just how it works). So basically, we have no idea. smile emoticon Anyway, it has been wonderful. There have been some moments where the girls are fighting or they are giggling and not going to bed on time and we find ourselves momentarily forgetting that we are living this nightmare. It just feels so normal- exactly as it should!
Posted on: Mon, 26 Jan 2015 03:26:31 +0000
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