I have to say, life right now isn't a walk in the park by any means. Things have seemed to turn a whole 360 degrees to say the least. I fell like everything in my life has seemed to just collapse all at once, and for some reason I just don't get it!
Lately I have not been my old, happy self. So much has happened in the matter of four months. My blood counts to continue to drop as the weeks pass. But as I said in the last post I've started monthly blood transfusions that have literally saved me. I really believe that if I wasn't receiving those, I wouldn't be able to even ride a bike down my neighborhood with my mom. But now I can say I can do it! I even got a new bike because I've had enough consecutive days that I feel well that I'm actually able to do the things I want. I receive those every month and I also continue to do my IVIG for my immune deficiency. To add... I received my port, and man has that been a lifesaver! No more vein blow outs! Whoooooooooo!
To add a positive.... about three weeks ago, my parents went to New York, and us kids stayed with my granny. It was so much fun! But, while we were with her, my uncle invited us to a lecture presented by a Hematology/ Oncology doctor from the Children's Hospital in Alabama. He actually talked about blood disorders and mainly about Diamond-Blackfan Anemia. It was really interesting! He also talked about a different therapy for this disease that wouldn't involve the intrusive therapy, Chemotherapy like in a Stem Cell transplant.. It's called IPS Therapy, or Gene Therapy. All he would have to do is take a skin sample, and hopefully it would produce good cells that they could infuse into me. I really don't think it was a coincident that he came to Gilbert, Arizona, out of all places. And I am truly grateful that I had this experience.
A negative is that my Ulnar Collateral Ligament (UCL) is torn once again. One more thing to add to my list of doctors and more things to handle. This time though, they are considering more Physical Therapy and even surgery. Although I totally don't want surgery,I think it is a good option for the better, because if I can't even put pressure on it and it goes out of whack again, I probably need surgery. I mean I can't live my life like that. I need my arm to function!
To say the least, my life is complicated. But, I can't do anything about that. I have to remember to live and not get caught in the wrath of worries and my daily struggles. I love all of you guys! Thanks for your support!
This was right after my port surgery...everything went well, and I am SOOOOOOO excited I finally have it! Oh, and thanks dad for the " wonderful" picture! I look amazing!