Macie S #WarriorMacie

First post: Jul 16, 2018 Latest post: Apr 16, 2021
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On July 4th, while on vacation in Florida, our sweet Macie could no longer tolerate the back pain she’d had since arriving. We went to the local ED and were told she had aplastic anemia secondary to her seizure medication (she had been diagnosed with absence seizures in Jan). We were transferred to Joe DiMaggio Children’s Hospital and the work up continued. On the morning of July 5th, at 0905, the Hematologist sat me down and the news immediately changed our lives. I was told my baby had cancer..B cell Acute Lymphoblastic Leukemia (ALL). I know I stopped breathing in that very moment because the Doctor reached over and grabbed my hands. She has febrile neutropenia which means white cell counts were and remain very low placing her at an increased risk for infections. Her platelets are low and she also has anemia due to the leukemia taking up all of the room in the bone marrow. Despite the amazing care we were receiving and trust I had with Joe DiMaggio’s clinical team, the plan was to get us back home as soon as possible for further testing and to begin treatment. We flew back the night of July 5th and Macie was admitted to UVa, the pathology confirmed, and the bone marrow biopsy and lumbar puncture done of the 6th. She received her first dose of intrathecal chemo with the lumbar puncture as well. She just began aggressive chemotherapy and then chemo will continue for 3 years. (The word ‘acute’ is so appropriate. She had been completely fine, her fun loving/silly/energetic self, with no signs of sickness, and a normal checkup including labs with neurology a month ago). Despite the expected emotions with receiving this diagnosis, we are hanging in there as obviously she needs us to be strong. We know God is with us and confident she’ll ring that cancer free bell at the end of this!