Sunday, June 14, 2009

Something just isn't right. "They" say the survival rate for medulloblastoma is about 80%.

Last September, just 9 months ago, the girls and I went into the city to meet with the families of 3 other kids with medullo. We met with Jacob's mom and his little brother. Jacob wasn't feeling well enough to come. We also met with Coleman and his family from Iowa, and Zach and his mom from Minnesota. Three boys and one girl (Hannah) with the same brain tumor.

Just 9 months later, those three boys are dead. How can that be? Coleman, then Jacob, then Zach, just a few days ago. It's unbelievable, scary, heartbreaking. It's just wrong.

Sometimes just too much to comprehend. Hannah has her dexa scan tomorrow (did I write that we missed it last week because we were in the wrong place???). She also has 4 MRI's-head and full spine. I'm not that nervous right at this moment, because I really try to block it out.

I know how to calculate 80%, and one out of four isn't it!


1 comment:

Anonymous said...


I too wonder about the stats...the high risk kids have a much tougher time, and I guess 5 year survival is the measure...and about half the kids relapse after 3 years, and of that half, I think about half relapse after 5 years...

Any progress on your lyme disease?