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Keeping the Faith

Clay Portrait cropped



Clayton Robert was born a full-term, beautiful baby boy in January 2007.

In late September of that year, several things were occurring that caused many visits to the pediatrician. Clayton was sleeping too much, he could not/would not swallow baby food, and the last and the main indicator that something was very wrong — Clayton stopped moving his left arm. After the pediatrician misdiagnosed Clayton with nursemaid’s elbow we took him to the emergency room because he became increasingly lethargic and started vomiting. At the ER, a scan of his brain revealed that Clayton had a mass, and the doctors told us that it needed to be removed immediately.

At the age of 7 months, Clayton had emergency brain surgery at a Kansas City hospital where the surgery was deemed to be a total resection of a tumor the size of an apricot. The pathology report of the tumor was shared with and reviewed by numerous national cancer centers of excellence. All of the doctors concurred that Clayton had a rare form of brain cancer, a Stage IV primitive neuroectodermal tumor (PNET). 

After a great deal of prayer and research, it was decided that Clayton should be treated at St. Jude Children’s Research Hospital in Memphis, Tenn. The detailed research conducted on the best hospital for treatment of Clay’s rare cancer was overwhelmingly supportive of St. Jude. Moreover, while other hospitals, including our local hospital, wanted to delay beginning Clay’s treatment after the surgery, the team of neuro-oncologists at St. Jude wanted to begin treatment as soon as Clay was recovered from his brain surgery. Within days, the decision was made to have Mom and Clayton moved to Memphis to undergo cancer treatment at St. Jude.

As devastating as the initial diagnosis was, the unthinkable occurred when St. Jude conducted its pre-chemotherapy commencement scans on Clay. The scan of his brain showed that Clayton’s tumor was back. In just 18 days, the tumor had not only grown back, but it was bigger than the first. We were told by St. Jude Children’s Hospital that it was the fastestgrowing brain tumor they had ever seen.” When we pushed for a statistic on Clay’s chances for survival, we were given the news that they believed Clayton had a 5 percent chance of making it through his treatment protocol.

Three days after his second brain surgery at St. Jude, Clayton began high-dose chemotherapy. Between the ages of 7 and 20 months, Clayton underwent two brain surgeries, four months of high-dose dose chemotherapy, 28 focal radiation treatments, and six months of oral chemotherapy.

During the time Clay was in treatment at St. Jude, grandparents moved into our home to help with Clayton’s sisters, Tatum and Cimone, ages 6 and 4 at the time, and Dad traveled back and forth, staying with the girls in Kansas City during the week and traveling to Memphis on the weekend. Clayton has been cancer-free since his second surgery in October of 2007.

The last four years have been challenging, with many trips to and from St. Jude for scans and checkups because monthly scans were conducted for a year after his treatment protocol was completed. After the first year, scans were done bimonthly and then trimonthly. In addition to his cancer treatment, Clay has undergone hundreds of hours of speech, occupational, physical, sensory and aqua therapy since his diagnosis and treatment. Today, Clayton is a very happy and active 4-year-old who loves swimming, reading and playing outside on the playground, and he adores his family, especially his sisters.

Our family is so grateful for these last four years with Clayton. We know he wouldn’t be here without all of the faithful “prayer warriors” who have stood by his side since diagnosis. Our family truly cannot imagine life without him.