Hi y'all. So...it's been a while. Mileigh and I have both had hemoc appointments since I last wrote and I'm happy to report that so far all is well. Most neutropenics have a bone marrow biopsy annually. That has not been the case for us. For whatever reason it wasn't done. With our textbook like complications with cyclic neutropenia it's been fairly easy, for lack of a better word, to control. You could book a vacay by our drops so prevention has proved to be something that is quite attainable.
My last bone marrow was completed in 1985...I was 2! I remember it..."traumatic" is an understatement. Obviously a new one was needed so the discussion with my hemoc was had. Our pain threshold is high for obvious reasons but the anxiety level for me regarding a BMB was thru the roof. I'll say the procedure went well and was less than traumatic. No results to report at this time and honestly it might not be a topic I visit again soon.
Mileigh is so great. She is so beautiful and so happy and so healthy. I am so blessed. I know that she is cyclic by genetic mutation and I can certainly tell when she drops and struggles through the day to day but I am so thankful for her health thus far. Her hemoc appointment went well. She was diagnosed weeks after her birth after sending her blood to a U.S. lab for testing. A bone marrow wasn't needed at that time. She has done so well.
We are thankful for GCSF but we also know that this medication was not intended for daily use so as a mama my concerns often get the best of me for her future. Noone really knows what decades of daily use will do but we do know what untreated neutropenic episodes will do and I'll take GCSF daily with a smile because it gives us life! Mileigh will have her first bone marrow biopsy and dexa scan after the holidays.
Seems like life has been so busy lately with everything but the quietness of the holiday season is upon me and my heart trembles with that all too familiar ache. I've said it before but music is my language. Lately I find myself taking those quiet moments to cry out to the only One who can hold my heart. Often the words fail...music never does. Not for me. That said I want to post a song that I ran across and it's not one that I can really sing myself and get lost in but it spoke to me. I hope Joeli has the best Christmas. We miss her so much. I cannot fathom Christmas in Heaven. It was once my favorite time of year. That's a tough topic for me now. I love this time of year but I don't love the hurt that comes with it. I look forward to the day that I sit with her in the quiet of Him and celebrate His birth TOGETHER. Take a minute and listen...I'd love to hear from you =) Be Blessed!
http://youtu.be/LUtc_olEiRY
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