Henry 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 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 four clinical trials. Through it all Henry remained amazingly courageous, accepting, accommodating, funny and philosophic. 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. And while 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."
Ours, too.