I don't even know how to begin this post. The above logo is one some of you local folks may have seen on bumper stickers or t-shirts over the past 18 months. You may have wondered if it was a new brand of surfboard or perhaps a cartoon. Unfortunately it is neither. The slogan and cute picture were put together by some dear friends of a young 7-year-old boy who is battling a "brain bump"--as he likes to call it.
Kyle "Kylie" Roger was diagnosed in February 2007 with a diffuse intrinsic pontine glioma or DIPG. This particular tumor is most often found in children between the ages of five and ten years old. There is no cure and it is deemed inoperable because of the tumor's preferred location (at the brain stem). The average survival rate after initial diagnosis is 11 months. Children with DIPG living beyond a year is a mere eight percent. Kyle has defied the odds again and again.
Kyle's mom, Christin, has been a friend of mine since her older son and my middle son were classmates in preschool many years ago. I liked her the minute we met. This beautiful woman has had to bear more than anyone's fair share of pain and suffering yet through it all she remains tirelessly optimistic yet amazingly honest and vulnerable. She has kept all of us updated through Kyle's blog and most recently added "Christin's Diary" where she posts a daily journal entry. I know it is her private therapy yet I'm so thankful she trusts us to have a glimpse into her heart.
As the tumor grows more dense, in spite of chemotherapy and radiation, Kyle is beginning to display the many physical symptoms that often accompany its progression. In spite of this, Christin decided to host a Holiday Open House this weekend. I was reluctant to go for my own selfish reasons. What would I say? What if I broke down and made it worse for her? How would I respond when she asks me how I'm doing? How bad could my life really be compared to what she endures on a daily basis?
I'm so glad I went. It was great to see her. To hug her. To see Kyle. To see all the support she has from this community. To see her house and yard all decked out in "Griswold style"--as she is calling it this year. She is choosing to live and live fully no matter what the future may hold. May we all do the same this Christmas season and beyond.