Clarie is 9 years old little girl in the third grade.She loves school, things that are pink and being the boss! Claire was diagnosed on 12-13-06 with an inoperable cancerous tumor on her brain stem, a diffuse intrinsic pontine glioma or dipg. This type of tumor is highly aggressive, highly malignant, treatment resistant and recurrent. This is a rare form of terminal cancer that mostly affects children between the ages of 4-10 years old. Due to the diffuse nature of the cancer there are no surgical options, and current chemotherapies have been found to be ineffective. With treatment, the median survival rate is less than 12 months. The chance of continued survival beyond 1 year is less than 8%. These types of tumors usually begin regrowth 6-9 months after radiation. This type tumor is treatment resistant and recurrent.

She has been treated at MD Anderson in a Phase III trial with Dr. Wolff.
MRI #1, 12-11-06, large tumor
MRI #2, ~4-5-07, tumor shrunk by half
MRI#3, ~5-20-07, about the same as MRI #2
MRI #4, ~7-19-07 about the same as MRI #2 & 3
MRI #5, 9-25-07 still about the same
MRI #6, 1-10-08 tumor growth
MRI#7 4-4-08 stable
MRI#8 6-13-08 tumor smaller
Shunt and port placed 12-06
33 days radiation from 1-07 to 2-07
various chemos during radiation with three inpatient stays
since 3-07; chemo's on 6 week cycles with vincristine once per week for three weeks then off for three.
prednisone for the first 17 days of the cycle starting with 30mg. and tapering to .5mg.
CCNU on first week of cycle one day after vincristine
Supplements:
melatonin, ruta 6 w/ cal phos, selenium, alpha lipoic, CoQ10, vitamin D, Ambrotose, omega 3, thyamine.
Began a new trial at MDA on 2-10-08
8 weeks on nimobutamazub (not sure of the spelling!)
Week 9 which will be April 4th, she'll have an MRI to determine if she should continue on medication.
Maintenance Nimo, every other week