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Kate going Fishing

In late May 2016, energetic Kate began to wake up at night with severe back pain. After a few sleepless nights, her family took her to an orthopedist who initially thought she was experiencing growing pains, so Kate began a long summer of physical therapy.

However, in early August no progress was being seen and Kate was scheduled for an MRI.  The mysterious cause of Kate’s pain was clearly identified by that MRI —  Kate had a grape sized tumor in her spinal cord that was squeezing her nerves. Kate immediately underwent surgery to remove the tumor and spent four days in the Pediatric Intensive Care Unit recovering.  All indications pointed to a benign tumor, but after 3 weeks of pathology work on the biopsy Kate and her family were informed on September 1  that the tumor was cancerous. Kate had a Primitive Neuroectodermal Tumor.  Suddenly all thoughts and plans for start of middle school were shelved and the focus turned to getting Kate well.

Kate’s parents, Bryce and Diane elected for her to receive proton radiation at the Maryland Proton Treatment Center in Baltimore. From early October to mid November, Kate attended morning classes, then Bryce took her for day treatments. Kate dreaded the cranial radiation treatments, which required her to wear a face mask, be locked onto the treatment table to keep her immobile – sometimes with long delays to re-calibrate the equipment. She also received weekly chemo boosts and clinic exams.

Right after Christmas, Kate was admitted for her first of six rounds of intensive chemotherapy.  This family of four spent the  first half of 2017 in and out of the hospital for treatment, infections and fevers, with Kate admitted for weeks at a time. It was during one of those stays that another family told them about their recent Believe In Tomorrow respite experience.  Recognizing that this might be exactly what the family needed, the Heavner’s  visited Children’s House By The Sea in Ocean City in July.

Bryce, Diane, Kate and her younger brother, Liam, headed to Ocean City, happy to be away and experience a place that didn’t have the negative associations of hospital stays, tests, and treatments.  Kate and her brother dove right in to get the full benefit of their family’s Respite stay.

Their week began with the traditional Believe In Tomorrow family cookout.  A great dinner served on the deck at Children’s The House By the Sea, served and prepared completely by our dedicated Ocean City volunteers.  The Heavner’s had a chance to meet a few of the other families who were also staying in Ocean City.  In the ensuing days, the family was able to fish (see Kate’s excitement at catching her first flounder!), surf, drive a Coast Guard boat, and eat at yummy and fun restaurants all around Ocean City.   This week at the beach was “beautifully unplanned,” which following a “year of no fun,” according to dad, Bryce, was just what was needed to give the family time to regroup, take a deep breath and simply spending time together.

The Heavner’s respite visit proved to be impactful beyond what they had originally hoped. Immediately the family asked themselves, “what can we do to help Believe In Tomorrow?  How can we give back?”  And this is how Kate became the “Face of the Race” for the Believe In Tomorrow Bethany Beach 5K.  Kate worked to draft a few words of welcome to racers from Delaware, Maryland, the District of Columbia and Virginia.  Her explanation of the last year of her life provided additional inspiration to the runners. She started the race and was then able to hand out prizes at the end of the race.  Perhaps the most memorable moment of the day was when she hung the medal around her dad’s neck, he had come in first in his age bracket.