Rylie was in surgery for almost 7 hours to remove her tumor and the margins of bone around it. They were not able to remove all of the tumor. They decided to stitch her teeth into her gums at the last minute and they flopped around in her mouth. Her little face looked like a potato sack on the left side with no definition. She was on a liquid diet. Her palate, sinus orbit, above the front teeth, part of the left maxilla up to the left eye orbit had been removed. Two weeks after surgery she began having seizures. She had her first seizure post magnetic resonance imaging (MRI) a month after surgery and started cannabis one month and a day after surgery. From that day, every follow up scan showed remarkable improvement. Her bones were regenerating at an amazing pace, her teeth not only lived but rooted, she had no nerve damage, she barely needed narcotics, she had minimal inflammation and best of all the tumor left behind continued to shrink! Also, with correct dosing, her seizures were under control. Here is the unfortunate part…we could not tell her doctors why she was having these AMAZING results because cannabis was illegal in Delaware for pediatrics!
By December of 2014, Rylie was doing well. She had numerous scans and each one was so much better than the one before that. We’d hear remarks from doctors that you could not tell she’d been thru that type of surgery. We would smile to ourselves and think, “if they only knew.” Rylie asked me if she could have her “reward” for listening to the nurses. She wanted to help the other kids that didn’t escape like she did. My little girl had survivors guilt because she was spared of cancer. It broke our hearts; so of course we granted her wish. Rylie founded Rylie's Smile foundation and it became a 501c3 in January of 2015. She not only wanted to gift children Apple iPod Touches that would take their mind off of where they were but she also wanted to educate people about “her medicine” so that more kids could be saved and go home.
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