Wednesday, February 29, 2012

There is nothing benign about it

Before the title gets anyone worried about Summer, let me start out by saying she's great. Nothing new to report, other than a drastic improvement in how she's handling her daily hormone injections. Her next set of appointments are on 3/15 and 3/21, so I'll have more info to share then.

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!

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