Margo moved out of the PICU! She has gotten better every day... Just as we hoped and prayed! We have had so many amazing moments of joy these last couple days... Our princess is back to her charming ways! (Ahhhhh) Her bone marrow aspirate and biopsy were once again challenging and resulted in basically no results. The leukemia team is like who cares, we know she has a full marrow of leukemia, but unfortunately we have to stab her hip bones AGAIN next week (for the 4th time in 4 weeks) to get a good sample for the new trial. We are now scheduled to re-do that next Wednesday. Then because she was CNS positive last week, we now ALSO need to re-attempt the LP so she can get the much needed intrathecal chemotherapy... also next Wednesday. So Margo will not be getting her new drug (Moxetumomab) Monday, but instead the trial will start next Friday November 14. That has 3 week cycles... 3 doses week 1 (every other day), 3 doses every other day week 2, then follow-up and success validation week 3 to determine whether she is in COMPLETE REMISSION (or whether a second cycle is necessary). So that puts us in the hospital another month at least thru the first week of December. Weve logged 145 days inpatient so far and will at LEAST be here for 175 days. Ugh. We just keep focusing on what we need to achieve to get OUT! Margo and I have a list of things we want to do when we finally leave... Always keeping her focused on the future SHE wants! To name a few: musical chairs, making tamales and feeding the birds at Central Park (which amazingly she remembers from the 1 week we were here in Manhattan back in June before she was admitted). She is so amazing!!
Posted on: Fri, 07 Nov 2014 22:42:00 +0000
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