Henry Cermak was a brilliant, creative ten year old who delighted everyone he met with his sense of humor and compassion for others. He loved science, art and music, and dreamed of traveling to Japan to design video games. His capacity to learn seemed endless, and his aptitude continually tested off the charts.
In the summer of 2006, Henry began suffering bouts of nausea and vomiting, and gradual increased frequency of headaches. Multiple trips to the doctor's office and several exams offered diagnoses such as acid reflux and abdominal migraines. Finally, a visit to the emergency room confirmed the worst. The doctor said: "He has a brain tumor. It's big. This is tragic. Call your family. Call your clergy."
Henry was initially diagnosed with a grade II non-anaplastic ependymoma in the fourth ventricle. Later diagnoses would confirm it as grade III anaplastic.
What followed was a two-year journey that included three major brain surgeries, three chemotherapy regimens, 93 rounds of radiation and three clinical trials. His treatments took us to Savannah, Memphis, Durham, NC, and New York City. Through it all Henry remained amazingly courageous, accepting, accommodating, funny and philosophic. He waited literally hours for treatments and procedures, was able to lie still for 60-minute long brain scans, was stuck, poked and prodded in every conceivable location, was given upward of three hundred different medications by way of multiple delivery systems, was examined by no fewer than 80 doctors and specialists, put up with home injections by Mama and Dad, was denied food for days while waiting for procedures and ended up too sick to eat when they were finished. And yet, he always kept his curiosity, humor and spirit. He was full of questions for the doctors and staff about what they were doing and wanted to explore all the equipment. He joked with the doctors and nurses and sang their praises. He downplayed his surgeries, stating: "It's only brain surgery...they didn't operate on my heart!"
As we look back on the unbelievable last two years we had with Henry, amidst all the horror, anguish and pain, we also can see that we filled those days with activity, adventure, and fun. Driven by Henry's sense of wonder and joy of life, we took every opportunity to explore, play, and savor whatever unique activities a community had to offer.
While true that every trip to the hospital or clinic was not cause for celebration, every trip home was. The Henry we know and love always came out in full force during the drive home, and he buoyed all our spirits. He always jumped back into his schoolwork and faced his classmates with aplomb. When asked if he wished to address the class about his condition, he did so with honesty, directness and confidence. His guidance counselor said: "Henry is our hero."
The journey ended on September 29, 2008. Henry was twelve years old. As a family, we are fortunate to have good medical insurance and a supportive extended family. Nevertheless, the treatments, travel and missed work resulted in over $75,000 in uncovered expenses. We would never have been able to explore all of our treatment options, nor given Henry the quality of life experiences without the support of grants from local foundations such as the Brain Tumor Foundation for Children. With their help we were able to give Henry all the care, every hope, and every opportunity to live the fullest life possible.
For that we are forever grateful.
Terry and Cynthia Cermak