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Kacie’s Story

On April 7,2011 what seemed to be another normal day took a turn for the worst. Kacie was brought to the Dr. for frequent headaches,vomiting and double vision. An MRI was ordered and to our suprise they found a large orange sized tumor on the left side of her brain. So our journey countinues......

Kacie turned 15 on April 24th. She is the 2nd oldest of five kids. Kacie is in 9th grade and attends New York Mills school. She loves hanging out with friends and loves playing Volleyball, cheerleading, softball and speech. She is extremely creative and has plans to become an art teacher. Until recently she loved to read. After getting double vision, she has not really been able to. Starting in the beginning January 2011, Kacie started having a few headaches occasionally. By the middle of March 2011, she started to get some stomach aches along with her headaches. We took her to the dr. and it was found to be caused by stress. By the beginning of April 2011, she was experiencing terrible headaches,nausea,double vision,weakness,some numbness,and very tired all the time. We knew something was definitely wrong. Took her back to the dr. and an MRI was ordered. We were told it was to rule out any yucky stuff. 2 days later she had an MRI at 3:00pm. It took just under an hour. About another hour later, sitting down to eat supper with the family we received a call that changed our lives. It was the on call dr. letting us know that Kacie has a brain tumor. The dr. counseled with the Fargo Neurosurgeon, and Fargo counseled with UofM. They decided it was an emergency situation and that we needed to pack our stuff and get on the road to the University Minnesota Medical Center in Minneapolis MN. It would be a 3hour trip for us so we needed to kick it in gear. The roughest thing was telling Kacie, a sweet energetic 12 year old what was happening and why we needed to leave. She took it very hard, as did we all. The only thing we could think of, was being strong for Kacie,supporting her and not letting our emotions take over. We did not want to scare her. We left for Minneapolis and 3hours later she was admitted into the hospital. She has been through lots and lots of testing and scans.She's been poked and proded on a constant basis. The results were a large orange sized tumor on the left side of her brain. She has now gone through four brain surgeries to remove tumor. On June 17th she started her 6 week run of radiation treatments. After different Pathologies from different facilities, it is known to be a malignant Extra Skeletal Myxoid Chondrosarcoma. Kacie been handeling this the best she can. The Neurosurgeons and Oncologists are great about letting Kac have a voice. She is allowed to make some choices on her own, to voice what she wants and how she feels about everything. Boy, let me tell you she DOES. It's sometimes hard for us to realize that she is able to do this. But its important to keep her very involved for the sake of her condition and recovery. The hardest thing in the world has been to watch her go through this. Keeping her comfortable and as stress free as possible is the goal. Our family asks that you keep her in your thoughts and prayers throughout this extremely difficult time. We will continue to keep you updated when we can. Thank you all for your thoughts, prayers,gifts and cards. She appreciates it and loves knowing that people really do Love her so much and care about her. Thank you all!!! 

Latest Journal Update

ER update

Just a little catch up.
About a week ago Kacie thought that her shunt may have popped up out of her abdomen muscle. But she didn't have any pain and had been doing fine. She then started to have a few mornings that she woke up and had a small fluid build up on the back of her head, but later it would resolve on it's own. Which is what they want to see happen.

Yesterday she bumped her head during Volleyball practice and ended up with an instant fluid pocket built up. Which had her coaches and I concerned, because with the shunt she really shouldn't have any instant or lasting fluid pockets. I called Minneapolis right away, to let them know. Her Neuro surgeon wanted her to come to the ER in Minneapolis so they could check her shunt placement.

So we made the trip last night, and so far the pictures look pretty good. There may be a possible kink but as of now it wasn't anything they would need to go in and fix immediately. The plan is for them to review the images today as a team and decide if they will need to go in and fix it or watch it first and see if it resolves on its own. Until then we wait for the call on a plan. I will keep you all updated. =)