Medical Opinions

Last week, I asked KK's team at Dana Farber to write a letter for a grant I am applying for to help pay for the IV Vitamin C treatments. Here is a portion of their letter:

KK has received traditional therapy of maximum surgical resection, radiation therapy and chemotherapy. Despite these intensive therapies, KK was found to have disease progression on a surveillance MRI from January 2016. There is no known standard of curative therapy for recurrent GBM. With that knowledge, an oral chemotherapy regimen was initiated with the hope of slowing down the growth of KK's tumor and hopefully achieving extension of her life. Her devoted mother has explored alternative treatments to be given in conjunction with more traditional therapy. KK began treatment with intravenous Vitamin C in January 2016. Since KK has begun this combined treatment regimen, she has done unexpectedly well from a clinical standpoint. She has demonstrated clear clinical improvement with marked increase in her motor strength, better functional and energy status and overall improvement in her performance status. A follow-up MRI scan from March 2016 revealed that the tumor has not exhibited any further growth. ... We would support continued administration of Vitamin C.

On Friday, KK had her annual "wellness" visit with her pediatrician, Dr. Hunt. Everyone at Town Center Pediatrics was amazed at how well KK looked. Dr. Hunt asked KK if she had any pain -- specifying different areas (head, neck, stomach,...) as we have learned to do with her. KK said she had no pain. Dr. Hunt was surprised. When KK stepped out of the exam room to go to the bathroom, Dr. Hunt asked me if she really didn't have any pain or if she was just saying that. I confirmed that she really didn't have any pain.

The next MRI is on April 20... just 10 days until we have evidence and not just opinions!