When Clay was first diagnosed with a brain tumor at the age of 3, I started a blog called “Following Clay.” These were in the “blog” days — what I’ve come to think of as the pre social-media days – before posts were short and got a “like” or a smile emoji.
We kept the blog going until two years ago. It was a way to reach friends and family en mass with updates, and it was a way to put words to what was happening. It is my hope that this feature, “Following Fighters” will become a place where this community can participate by getting to know some of the details of what it is like for parents and kids living with a brain tumor. Some of the posts will be about our son Clay, but we will invite others to participate. If you have something to say, please contribute.
Clay is in the hospital as I write this, where he has been for the past week. When your child is diagnosed with a brain tumor, you hear “late effects” and “collateral damage” and if you are like me, you think that won’t relate to you or your child, and you try not to listen. As your child ages, the brain tumor demands that you listen. In the weeks leading up to this hospital stay we saw 6 specialists: gastroenterology, endocrinology, psychology, cardiology, oncology, and physical therapy. No specialist could answer why Clay is feeling so poorly or failing to thrive, why he has no appetite and his hand is shaking and his balance is poor. We are hoping inpatient will provide some answers, and give Clay a respite until the doctors can provide some answers.