Katie's Medical Journey (draft)

Katie is only 24 years old, working part-time as the Executive Administrator for the Pennsylvania Orphan Care Alliance. From the outside you would never imagine the journey Katie has been on for the last 11 years of her life. From the outside, her smiling face and friendly personality would lead you to believe she was just a normal happy-go-lucky young adult. But if you know Katie personally, you know she has been living the last 11 years of her life with a life-threatening brain tumor. 

At the age of 14 she was diagnosed with chondromyxoid fibroma.  It's a very rare bone tumor that is generally found in the long bone of the legs. Katie's happens to be in her skull and only the fourth case ever documented. 

In July 2012, she had to have her first surgery to try and remove the tumor. It was 18 hours long and some of the most well renown neurosurgeons in the country were part of her team. She even got to meet Ben Carson! The surgeons were not able to remove all the tumor, due to its location. It was also necessary to remove her left eardrum, and the left vocal cord had already died. As a result, she is now deaf in one ear, can’t raise her voice, and is no longer able to run like she once did because of headaches and the way the vocal cord fell, blocking part of her airway. 

In December 2018, a second surgery had to be done to shave down the tumor as much as possible. It wasn’t possible to remove the entire tumor, and as a result, there have been some lasting problems. These include nausea, dizziness, and daily headaches that are sometimes debilitating to the point that she cannot move or function.

Recently, she met with a doctor at the Jefferson Headache Center in Philadelphia. He is working with her on a treatment plan. He is having her go to physically therapy for a weak neck, which is a result of muscle deterioration. She will be getting a sleep study done. Different types of injections will be tried, as well as other medications. They want to try one bridge treatment to temporarily deal with the pain. A more long term regiment involves Katie being admitted to the hospital for 5 to 7 days. Although this is amore long term solution, it is also cost prohibitive. 

Even some of those closest to her don't completely know the journey she is currently on, because she doesn't want it to define who she is as a person, and I totally respect that. However, in my heart I know there are many out there that love Katie, like I do, and want to help relieve some of the financial burden for her and her family. Some of you reading this might not even know Katie and are still drawn to her story and are eager to help. One time she matter-of-factly made a comment that really just hit me hard. She said something to the effect of, "while many her age are saving money for a house, she is saving money for her health." I know that we are called to help carry the burdens of others both prayerfully and financially, so I hope that if Katie's story moves you to give, you act on it.

Katie has an amazing team of people who have been praying over her and an amazing family and church who support her. Above all, she has a Father who is in control of her story, and loves her beyond measure. I hope that through this go-fund-me page, enough money will be raised that the financial burden of the present and future for her and her family will be one less thing on their minds. 

Thank you for reading this and please say a prayer for Katie and the recent new option for treatment that has become available.