"The purpose of life, after all, is to live it, to taste experience to the utmost, to reach out eagerly and without fear for newer and richer experiences." - Eleanor Roosevelt

Monday, November 11, 2019

Update on Ben...

We are STILL dealing with Ben's low platelet issue. Unfortunately, the med that we have been trying for the last several months just isn't working, so at the University of Iowa Hospital today, we decided to discontinue it. It is upsetting because this was one that we really thought would work. Ben's platelets dropped down to 3000 a few weeks ago and we have been on edge since this is the lowest he has ever been. The count was up to 21000 today, still way too low. Our poor boy cannot even participate in PE class at school at this point. It is really hard on him because he just wants to be "normal!" Ben has definitely taken this hard and has been quiet, scared, angry, and very confused lately. I have no answers for him and that makes it worse, because we all feel helpless. Any positive thoughts and prayers you could offer up for Ben would be much appreciated!!! The situation is getting increasingly scarier as we edge closer to more invasive treatments for his ITP. We have one more med to try and hopefully that will give us some good platelet counts for a change! If this doesn't work, we will have some hard decisions to make as the next treatment plans involve weekly visits to Iowa City for drug infusions which will leave his immune system unprotected and/or surgery to remove Ben's spleen. So, we are praying that for now, this new med will give us some peace and Ben will be able to enjoy his life as a 12 year old active young man! Thank you to everyone for your support!

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