Katelyn Sparkled Her Way Into First Grade

Katelyn Sparkled Her Way Into First Grade

Friday, September 9, 2016

At just four years, in February, 2013, Katelyn was diagnosed with ependymoblastoma, a rare tumor near her tailbone.  The tumor was so rare that only two other reported cases world-wide.  

Ependymoblastoma is a highly malignant brain tumor usually occurring in young children.  Katelyn’s was different.  Her tumor was found in her tailbone.

The doctors did a lot of research and tried to find someone, somewhere and they had no idea how this brain cancer got where it did,” said Katelyn’s mom, Stacy.

One evening, Katelyn mentioned to her parents that she had a bump on her tailbone that hurt her whenever she hit it something on it. One night, her parents took a closer look and could see the formation of a tumor. 

“We would have never known if she wouldn’t have said anything,” Katelyn’s dad, Brian, said.

Other than the bump, her parents noted that she really had no other symptoms.  Concerned, Brian and Stacy brought Katelyn to the doctor.  After an ultra-sound, doctors thought it was a sebaceous cysts and would go away within a few weeks.  No one was concerned.  So they waited a few more months and the bump was not going away, yet getting bigger.  Katelyn’s parents brought her in for another ultrasound and this time, doctors knew something just was not right. They then proceeded to do an MRI and Katelyn’s first diagnosis was a teratoma tumor.  With that, her family brought Katelyn to Omaha to have surgery and remove the tumor for a biopsy.  Katelyn and her family were not worried or concerned as it was thought this tumor would be benign.  Two weeks later, they received the call and were completely shocked and devastated. 

The first surgery Katelyn had was to completely remove the tumor.  They then did a repeat MRI and found something else.  To look closer, they did a full body MRI and found that there were no tumors in the brain or on the spinal cord, which was a concern as this type of cancer is typically in the brain.  However, they did find a spot of concern on the front of her tailbone.  Her second surgery consisted of a tumor resection of that tumor and to remove lymph nodes.  The third surgery was line placement where they moved her ovaries for radiation.

 “When we first started the treatments, it was very, very harsh on her body.  After the very first treatment, she came home and within five to seven days she spiked a fever.  She was taken by ambulance to the hospital where she stayed for a week,” Stacy said.

For her second treatment chemotherapy they reduced the dosage by 50 percent, however, Katelyn was back in the hospital for another fever.

“It was really bad that time.  She had sores in her mouth, and wouldn’t eat for days.  The doctor came in and we had a heart to heart and changed the chemo completely.  After that, she would still get fevers, but it was not as harsh on her body,” Stacy said.

Total, Katelyn had three surgeries, 14 rounds of chemotherapy and 30 radiation treatments.  She started chemotherapy in March of 2014.  In the middle of her chemotherapy, she did 30 radiation treatments and then right back to chemotherapy, finishing in November.   As of December 2014, Katelyn had no tumors.

Katelyn will continue to be monitored by MRI every three months for now to ensure she stays cancer-free.  On July 13, 2016, Katelyn had another MRI that came back clear.  This time, Katelyn and her family will wait four months for her next MRI and hopefully in the future move to six months. 

For now, Katelyn is enjoying all the things kids she should be enjoying:  painting, camp, softball and more.  On August 18, Katelyn sparkled her way into first grade. 

Follow Katelyn's story here: https://www.facebook.com/blingykatelyn/

Want to help kids like Katelyn?  Here is how:

  • Vote for ANDY daily to help Team Jack win $100,000 for pediatric brain cancer research.
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