Mom shares letter about son with hearing loss and cancer
This story was originally published in 2013 and has been updated.
Having tiny electrodes placed all over our newborn’s scalp to test his hearing was not the way we envisioned our baby beginning his third week of life.
But after failing his newborn hearing screening, Cole was sent to the children’s hospital to get an auditory brainstem response (ABR) test. The ABR was administered by the hospital’s audiologist to more accurately detect Cole’s hearing ability. The test uncovered a severe to profound bilateral sensorineural hearing loss.
Had this specialized testing not been available, Cole’s loss probably would not have been detected until he was much older. Because of Cole’s early intervention and being promptly fitted with hearing aids, Cole was able to be mainstreamed in a regular classroom for kindergarten and is currently an honor student at St. Xavier High School.
We thought Cole’s hearing loss would be the greatest challenge for our son to navigate throughout his life. We were completely blindsided by the events that occurred at the end of Cole’s seventh-grade year of school in 2011. After suffering several weeks of malaise, and with worsening symptoms, Cole had a chest X-ray that revealed a huge mass in his chest. He was 13 years old. Cole was immediately sent to the children’s hospital, where the oncology team wasted no time in evaluating Cole.
Less than 24 hours after being evaluated and admitted, Cole had a chest tube inserted to drain fluid that had accumulated around his lung, had lymph node and bone marrow biopsies, and was diagnosed the very same evening. The biopsy results confirmed doctors’ suspicions that Cole had cancer — Non-Hodgkin T-cell lymphoma.
T-cell lymphoma is a cousin cancer to leukemia, but its occurrence is much more rare. The hours following the diagnosis were a whirlwind as the aggressively growing tumor in Cole’s chest was encroaching on his airway and heart; quick action and treatment was urgent. A team of people from the children’s hospital made it possible for Cole to have surgery the very next day to place a port in Cole’s chest and to perform a spinal tap to see if there were any cancer cells in his spinal fluid. His first chemotherapy drug was also injected into his spine — all this in less than 48 hours of being admitted!
Fast forward three years: Cole has finished 27 months of chemotherapy and is in remission, has just finished sophomore year of high school, serves on the children’s hospital Youth Advisory Council and volunteers at Gilda’s Club. During those exceptionally challenging months of treatment, Cole endured 122 chemotherapy treatments, countless pills, had to be home-schooled for the majority of his eighth-grade school year and survived a life-threatening allergic reaction to one of his chemo medications. Cole survived this episode because we live close to the children’s hospital, and the ER staff responded quickly and efficiently.
Cole also survived a nasty bout with cytomegalovirus infection. Due to Cole’s immunosuppression, the virus raged uncontested, causing unrelenting fevers and misery, and earned Cole a 21-day hospital stay. Mercifully, Cole’s oncologists, along with doctors from infectious disease, were able to identify the virus and get Cole an antiviral medication that saved his life.
Today we celebrate Cole’s remission but know this would not be possible without God, the exceptional care he received from the dedicated oncology team and the incredible devoted staff on 7 West, the entire staff and volunteers at the hospital, the thousands of childhood cancer patients who walked this road before Cole, and our faithful family, friends and strangers who have prayed Cole’s way to remission.
Happy to be looking at cancer in the rearview mirror.
Update on Cole: September 2016
In May, Cole graduated from St. Xavier High School with honors. After attending a shadow program at GE during his senior year of high school, Cole was selected to work full time this past summer as an IT intern at GE Haier. He also works part time for the Gheens Science Hall and Rauch Planetarium. When not working, Cole enjoys time with his new girlfriend, Claire, who is also a cancer survivor, as well as spending time with friends and playing Pokemon Go! At the end of the summer, Cole went hiking in Acadia National Park with his family, and picked and ate wild Maine blueberries. Cole accepted a trustee’s scholarship from the University of Louisville and is attending Speed School of Engineering this fall as a computer engineer/computer science major. In July, Cole celebrated being in remission for five years!