One day up and another down... Thats how it has been. Monday (the 2nd Moxe infusion), Margo actually felt better! She was out of bed and stood up for an hour. She smiled a few times... even letting out a giggle at Charlie Browns Thanksgiving! Unfortunately though, Monday night she was in pain and restless all night again. By yesterday morning she had such severe head pain that they scheduled a CT of her head. Thankfully it looked fine, but then we are left with why is she having so much pain? Margo will once again get intrathecal chemo tomorrow (to fight the leukemia in her spinal fluid). When they do that LP they will also send some fluid for virus testing just to make sure they arent missing anything in her CNS that could be causing the headaches. The good news is that besides the pain, she has no other symptoms that would lead them to believe there is anything severe with her head... No nausea or confusion. Then after her CT yesterday and through the night she didnt seem to have any pain. So frustrating not to have a trend or trigger identified for her pain. If they come back later this week they might do an MRI to see if there is anything different showing there. This morning, Wednesday, was infusion 3 of Moxe... So far so good! We are finding that she has been feeling better on these infusion days (like Monday and last Friday)... Its tomorrow that we suspect might be tough. We are half way through the first cycle on this Moxe trial... Last 3 infusions will be Friday of this week, then Monday and Wednesday of next week before Thanksgiving. Thank you for your continued prayer and love for Margos healing! I wish all of you could spend just a few minutes with her to understand how amazing her spirit is. She is such an old soul and just so wise beyond her years. Yesterday when her pain was so severe, I was laying in bed with her and trying to comfort her. Once she was no longer crying and seemed to be falling asleep, I started humming Somewhere Over the Rainbow (which I sing nearly every night before bed), and she whispered: shhhh mommy, Im trying to calm down. She just wanted to lay in my arms quietly. Ahhhh... That was a beautiful moment. Our strong, brave princess.
Posted on: Wed, 19 Nov 2014 17:24:34 +0000
Trending Topics
Recently Viewed Topics
© 2015