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Katelyn’s Story

This site has been created to keep friends and family updated about Katelyn. She was diagnosed with a brain tumor and seizures, in the spring of 2003.  She had surgery to remove the tumor, but it grew back in 2005 and was removed through a 2nd surgery.  In Nov. 2012 she had surgery again to remove 3 more tumors. One tumor remains, with a portion that is inoperable. She is now being cared for by an oncologist.
Be sure to read the latest in the journal, view the photos, and drop us a line in the guestbook.

In the winter of 2003, Katelyn age 5, started having complex parital seizures and was later diagnosed with a brain tumor. The tumor was located in the right temporal lobe. She underwent a tumor resection on June 26, 2003-the tumor was successfully removed and was identified as a benign Pylocytic Astrocytoma. Prior to surgery, she endured countless seizures and spent many days on the pediatric epilepsy unit at Children's Hospital. Following her surgery, she spent an amazing total of only 3 days in the hospital prior to going home. Her spirit, strength and bravery were inspiring!

Once home, she recovered quickly and lived a seizure free life for 15 months. She attended kindergarten and played summer soccer. In September of 2004, she once again started having some seizures. The MRI was questionable on tumor regrowth, but upon repeating the MRI 3 months later, it was determined to be scar tissue.

Since then, her seizures have continued in frequency. Her most recent MRI is showing a "nodule" which her physicians feel is tumor regrowth. Katelyn is now almost 7 years old. So, over 2 years after this all began, we are unfortunately, back to where we started.

On November 23, 2005 Katelyn underwent her second surgery to remove the tumor regrowth. She underwent many scans, EEGs and special tests prior to surgery. She spent 5 days in the hospital and is home now, recovering. The pathology report confirmed the recurrence of the Pylocytic Astrocytoma.  The surgery went well and she had another amazing recovery!

We did not get the best news back from the April MRI. Unfortunately, there is another "spot" enhancing on the latest films. It is too soon to tell if the tumor is growing back for a 3rd time, or if it is just residual scar tissue from her last surgery. We have another MRI scheduled for July 11, 2006. Until then, we watch, wait and pray!

Scans in '08, '09 and '10 were stable!  She is still taking seizure meds., but she can now go 2 years between MRI's.  The next one is due in the Fall of 2012.

Katelyn started having some seizures in July of 2012.  She had an MRI on Sept. 11 and she has 3 brain tumors.  There are 2 new small finger-like tumors growing, along with the original tumor growing back for a 3rd time.  Our hearts are so heavy!  After 7 years of being tumor free, her journey is starting all over again.  We appreciate your words of encouragement and many prayers!

Katelyn endured her 3rd brain surgery on Nov. 14, 2012.  The surgeon was able to completely remove the 2 new smaller tumors, but unfortunately, her larger tumor is too close to a major artery to be completely removed.  Katelyn's care has now been turned over to an oncologist.  The plan is to do a follow-up MRI in late Feb. of 2013.  If the tumor is stable, then we will repeat the MRI in 3-6 months.  If the tumor is growing, Katelyn will have to begin chemotherapy. 

Through this website, we hope to share Katelyn's new journey and awesome spirit for life with you all...

Latest Journal Update

Katelyn's Make-A-Wish Trip

I apologize, this update is long overdue!!  Where to start?!  Katelyn's Make-A-Wish trip was amazing!!  It was absolutely everything she hoped it would be.  We spent 5 days at the breathtaking Atlantis Resort in the Bahamas.  Our limo arrived bright and early at 3:45 am.  We arrived in the Bahamas at noon.  The resort is massive in size, so that first afternoon we put on our swimsuits and walked from one end to the other enjoying the different pools along the way.  Throughout the resort, there are massive aquariums filled with stingrays, sharks, sea turtles and tropic fish-always something beautiful to look at.  On day 2, we spent the morning at the beach.  The kids loved swimming in the ocean, looking in the shallow reefs and being hit by the crashing waves. In the afternoon we all went swimming with the dolphins.    What an awesome experience!  On day 3, we went snorkeling.  We boarded a beautiful catamaran that took us out to a private island about an hour from the resort.  The water was a beautiful, clear, turquoise blue color - you could see all the way to the ocean floor.  The reefs there were incredible!  The fish swam right up to our faces.  None of us had ever been snorkeling before, so we weren't sure what to expect.  It was definitely one the highlights of the trip!  On day 4, we spent most of the day between the pools and the beach.  There were endless waterslides and a mile long lazy river to keep all of us busy.  Our evenings were spent at the marketplace along the marina.  It was amazing seeing the massive multi-million dollar yachts that docked there - one of them even had a helicopter on the top!  On our last day, the kids hit their favorite water slides, took a few trips along the lazy river and then it was time to say good-bye.  I posted a few pics from the trip - enjoy!  We are so very grateful to Make-A-Wish for giving Katelyn this amazing experience.  It was filled with smiles, family time, and no medical worries - priceless!!  Our hearts are beyond full!

Since then, Katelyn has had quite a few visits with various specialists.  She had an MRI in late Aug.  We are thrilled to report that her tumor appears stable and has not grown!!  So for now, she can avoid chemotherapy :)!  Her Dr. gave the OK to wait until late spring for her next scan - as long as Katelyn does not start having more seizures before then.  Great news!!!  She saw her back specialist in August as well and her scoliosis is still progressing, but her Dr. feels she is almost done growing, so it should stabilize soon.  Katelyn also saw her eye specialist.  Since her tumor is located right next to a major artery, her Dr. wants her to have some special baseline peripheral vision tests done so we can monitor that for any changes.  Katelyn was given the thumbs up for contact lenses and is loving them!!

Other than that, school is back in session.  So far, Katelyn is adjusting very well to high school.  She is planning to join the color guard through the ROTC program and is also thinking about joining the yearbook staff.  She continues her horseback riding lessons each week, as well.  It will be another busy year!!

Thanks for checking in!!  As always, we appreciate the continued prayers for our girl!