Katy’s Story

Site created on January 19, 2019

 Katy is a vibrant five-year-old little girl who was recently diagnosed with NF type 1 disease. Katy is fighting with multiple tumors in her brain, optic nerves and along her spine. Recent news showed that her  tumor is growing at a much faster rate than anticipated. We were given the sad news that she is now legally blind in her left eye, and the tumor has started to grow onto the right optic nerve as well. Katie will be undergoing chemo therapy for 16 months to try to shrink these tumors and save her remaining site. Katie has three older siblings and a single  mom who are fighting to raise money, and help their family get through this shocking turn of events. We hope that you will learn more about NF1 and will be able to help wherever your heart feels the need to step up and assist her family and Katy thank you so much for following and doing what you can. 

Newest Update

Journal entry by Rebecca Drekmann

Yesterday was Katy's port placement day and first round of Chemo.  It was a very long day full of education, challenges and a lot of tears from Katy and mommy. 
Surgery was delayed about 4 hours which really made the day a challenge.  She had to stay laying in bed with IV in hand, and if you know Katy this is truly a huge challenge.  I pulled all my tricks out.  I danced, performed puppet shows, had a tea party, did a magic show, allowed Katy to apply my makeup, then I applied hers, we sang "baby shark" a dozen times and every fun song she loves and we still had so much time on our hands and lots of frustrated outburst. 
Her port placement took a bit longer than anticipated because they ran into a tumor that they had not seen in her scan that was blocking the route the catheter needed to take.  
She recovered nicely and was then admitted to Children's Center for Cancer and Blood Disorders for her chemo.  She did really well and was allowed to roam and play.  
Later in the evening she did become ill and very upset.  
This morning Katy is feeling better and only sore and bruised from her surgery. 

Thank you all for your love and support.  
Rebecca 
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