A Different Diagnosis

This week we finally got an official diagnosis. We have been very impressed with her doctors they are very thorough and never stop asking questions. They have consuled with doctors from St. Jude's, Children's Hospital LA, Johns Hopkins, and Texas Children's hospital to determine what she had. It's very rare for brain cancer to begin in the spine like Rachel's so they had trouble narrowing it down. They have determined that she has a very rare and aggressive form of Medulloblastoma called a PNET (pronounced peanut). She doesn't fit the description of anything perfectly but they decided that's the best diagnosis. The doctors at St. Jude's helped to determine her course of treatment so we feel confident that she would receive this cocktail of drugs anywhere else. This form of cancer is slightly better than Ependymoma but still as scary. She has a little better chance with chemo working on PNET but the survival odds for her age group are not good. We do know that the cancer is only in her nervous system and has not spread to the tissue or other organs. They also did a biopsy on her bone marrow and there is no cancer in her bones either. If the chemo doesn't work we will probably end up doing surgery and participating in research drugs at a place like St. Jude's. Her doctor told me that all of the pathologists and oncologists that she spoke to are fascinated by Rachel and following the case closely because it is such a rare one. The more doctors and opinions the better! Keep praying for Rachel because I think that this new diagosis is definitely more hopeful than the first so the prayers are working!