The JOURNEY as recounted by his mother

BEGINNING: (12 y/o) Around mid-December 2016, Kory started complaining of coldness and numbness in one of his hands. As parents, you probe your child to determine if they irritated it before you say, “Go sit down somewhere. Did you bump it up against something?” Tony and I didn’t think much more about it until New Year’s Eve. That evening, Kory came to me (as we were rushing to get dressed for Watchnight Services at church) and nonchalantly but directly said, “Mommy, I’m having difficulty buttoning my shirt and tying my shoelaces.” I assisted him, and we rushed out the door. What was I missing in Kory’s complaints? After all, I was the one in the family with a medical background. A visit to his primary care physician was warranted. But, with it being the holiday season, most physician offices were closed.

On the morning of January 4, 2017, his dad and I stood in line for our turn on the emotional rollercoaster. After visiting two physicians in separate locations, neither could not determine the cause of Kory’s symptoms. After dropping Kory off at school midday, he called me a couple of hours later to inform me he could not move his left hand that was cold once again. Thus, we ended up in the emergency room. After further evaluation we were told Kory needed to be “transported” to Children’s Hospital in Washington, DC. Eager to find out what was going on, the hospital scheduled a MEDAVAC, not fully explaining what was seen on the performed tests. I frantically drove to the hospital while Kory was up in the skies, and Tony went home to pack some clothes. What had just happened? I called Fern, my best friend, whom started to pray for Kory as I sped on the Capital beltway.

Kory was diagnosed with having a Transient ischemic attack (i.e., a mini-stroke) with a likely onset at the start of his complaints in mid-December 2016. I bet you didn’t know you could continue walking around undiagnosed after a previous stroke? Well, this was not the only ailment! He was also diagnosed with Acute Myeloid Leukemia (AML) which is CANCER! Explaining the diagnosis to our son was challenging, especially since Kory thought he did something wrong in God’s eyes. Kory’s only concern at the time was loosing his hair. He had taken such pride in growing it. I sure did need some spiritual assistance during this time!

After two weeks in the Intensive Care Unit, I realized Kory had missed school. He wanted to continue learning. But, unbeknown to me, the hospital had an outstanding education department set up for the children who wanted to take advantage of it. As a result, Kory went into virtual learning pre-COVID pandemic, becoming an expert in home and hospital distance learning for the remainder of the 7th grade.

The first villagers on the scene were my Office of Clinical Site Oversight (OCSO) “work family” — my sisters and brothers from my job at The National Institutes of Health (NIH). Collectively they knew what Tony and I needed before we did! I cannot thank them enough for their generosity.

MIDDLE: As a parent, navigating through the hospital system and its surroundings wasn’t difficult since I was already comfortable speaking with the medical staff due to my past military experience. I was able to convey information to Kory and Tony in laymen’s terms. Watching my child undergo FIVE rounds of chemotherapy was a different beast. Although Kory’s physicians were terrific in explaining what to expect, they could not express the anguish a parent feels watching their child’s hair fall out or seeing what appears to be flu-like symptoms (which were in fact only the side effects of the chemo), and losing weight. Between each chemo cycle Kory had to endure a bone marrow biopsy. Of course, there was no option but to move into the hospital with Kory and take my 9 to 5 job with me. Dad and I were in it to win it for Kory’s sake!

After six long months, Kory finally rang the ceremonial “cancer bell,” which marks a milestone with the end of cancer treatment. Kory was finally in remission and considered a cancer survivor. The remnants of the stroke were almost non-existent! We all excitedly felt the accomplishments of navigating and conquering the storm with the help of our prayer warriors from all over the world, which we proudly called the “KOR VILLAGE.” We had won! We had beat cancer!

Fast forward to the end of July 2017, Kory was discharged from Children’s Hospital and told he’d have to follow a rigorous schedule of clinical visits to ensure the cancer would not return; this included additional bone marrow biopsies. We celebrated Kory’s one year as a cancer survivor in Oahu, Hawaii.

In August 2019, the cancer returned. What a devastating blow for everyone, especially Kory. He couldn’t understand, “why him”? This time, attention to Kory’s complaints were immediate. An increased high temperature for no reason was a potential indication for an internal infection which required prompt attention. A bone marrow transplant was the new treatment plan. Chemotherapy was not enough this time.

In the beginning of 2020, a second ceremonial bell was rang. We were now looking at a 2 time cancer survivor!

GOD’S PLAN: At this time, I am not emotionally ready to recount the last year of Kory’s life. Stay tuned, as this website has a “blog” section. As I write, I continue to heal. Stories will be shared. Thank you.