Remember this post?
The one where I ranted a little about surgeons who go straight for the whole tumor? Well, here's why I get so angry:
Yesterday, I found out a little girl died from complications of this tumor and the conditions caused when you do too much damage to that area. She was seven years old. What's worse? She is the fourth kid from my craniopharyngioma community to die in the last three months. Four kids. My heart breaks for them and their families.
I will continue warning people when I can. And I will try to be more forceful with my warnings. I know it's hard to live with this tumor in your kid's head. Boy do I know. But what's harder is living with (or dying from) the complications of being too aggressive when research shows you may not need to be.
What else can I do? We'll continue to raise money for research to help come up with even better solutions. This year, the Run of Hope is on September 30th. I hope you will join us!
