Honored Kid

Reagan S.

Age 12
Reagan S. Kid Photo

Location

Springboro, OH, US

Diagnosis

Brain or spinal cord tumor

Date of Diagnosis

July 2013

Status

In treatment

Treated At

Cincinnati Children's Hospital Medical Center

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My Story

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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