For the last couple of months, Reagan was becoming more & more tired. Not eating very much. Always wanting to be held. All the labs run had come back normal. The morning of June 26th, Ray got Reagan out of bed & put her on the floor. Her legs gave out & she hit the floor. She was so week she couldn't walk. That was a huge change from the night before. That afternoon Reagan was admitted to Cincinnati Children's for failure to thrive. After a long week of testing, clearance from neuro (don't get me started!), & feeding treatments, she began throwing up. On July 4th I snapped & demanded a they do something, MRI, CT, Endoscopic Biopsy, anything as little progress had been made. The attending ordered a head CT STAT. Within 5 minutes of us returning to our room, the attending Pediatrician came in said she had bad news. A tumor the size of a kiwi was in her brain. Within two hours she was in surgery to place External ventricular drains, EVD's, to reduce the fluid & swelling in her brain. What a difference those made. Reagan was happy, chatty, & starving after surgery! She at more that evening than she had in months. The next day she had an MRI. The tumor surrounds her optic nerves, optic chiasm, hypothalamus, & carotid arteries. It can't be removed. A biopsy was then done on July 9th. Reagan has a grade 1 Pilocytic Astrocytoma. If this tumor was even 3cm in any direction it could be resected & we would be home by now according to Dr Stevenson (neurosurgeon). This past Sunday permanent shunts were placed & the external EVD's were removed. Reagan started PT on Monday & is making great progress! We hope to go home this weekend for a couple weeks before chemo begins. Because the tumor is slow growing, the treatment is a full 12 months. The first 10 weeks, treatment once a week. The remaining is once a month. It's going to be a long road, but she is a fighter. Through all of this, Reagan has been happy 98% of the time. She is back to her normal witty goofy self! The love & support we have received has been amazing. We are so blessed to have such amazing friends & family!
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