My 7 year old granddaughter was diagnosed with diffuse pontine glioma in February of this year. She began 6 weeks/5 days a week of radiation accompanied by decadron, zofran ad pepcid, if needed. Once completed, her parents met with a group at Dana Farber to search out a study. They would not accept her until the tumor was again actively growing. Her follow-up MRI indicated that the tumor had decreased in size - from 2.5 centimeters to 1.5 centimeters and should continue to shrink even more. Dana Farber recommended several alternative therapies and her parents went with temadar, celebrex, zofran, bactrim and pepcid. It is a 28 day cycle with temadar taken five days a month, bactrim three days each week, celebrex twice daily and zofran when needed. Once beyond the radiation and decadron, which had disastrous side effects, she has had a fairly stable five months. She lost all the weight caused by the steroids, her hair has regrown in the radiated areas, her strength is good, as is her appetite. She continues to attend school.
Within the past week, she has experienced dizziness, minor headaches, and has now gone to closing her right eye, because she is beginning, once again, to have double vision. All of these symptoms are not good.
She is scheduled for her 3rd MRI this Saturday, and I don't expect the results to be good.
My heartfelt prayers are with you because no one who has not experienced an illness of a child, of this magnitude, can really understand what the family is going through. Enjoy each day that you have, because each day is a precious precious gift.