Message from Andrea - October 7, 2009

So much to write and so hard to condense it all. Most recent news first: Julian had an MRI today of his head and spine. Even after 3 surgeries and 27 sessions of radiation (where each time he was put under with propofyll -- aka Michael Jackson's famous ''milk''), it's still unnerving to have your child go under general anesthesia. We met with Dr. Loudon, his neurosurgeon, afterward who said, in his pensive way, that overall it looked good (Praise God) but there continues to be an ''enhancement' at the site where his tumor had originally been. He said they will watch it and discuss Julian's case at Tumor Board this week. It's probably the scar tissue, he said. We are so grateful that they did not see anything new. Truly, truly. It certainly could have been different news. Yet, the more we are learning about medulloblastoma, the harder this gets. It's a beast of a disease and very aggressive. That's why he needs MRIs every 3 months this year, and every 4 months next year, 6 months the year after that, etc. Recurrences at the site of the tumor are ''common'' and usually occur within the first 2 years, one article said. Significant impact on the endocrine system. Cognitive impact. Toxicity to various organs. Stature impacted. High-risk for another malignancy. Long-term, life-long health issues. I can go on and on. Early in his diagnosis, I clung to the words, ''he has an 80 -85% chance.'' I naively thought that, even though he would go through a year of treatment, we had dodged the bullet! I was so relieved that he had medulloblastoma and not one of the other brain cancers. But medulloblastoma itself is a terrible, terrible cancer and it is robbing him of so much now and in the future. I guess after learning that a boy named Noah (cp: NoahDowell), who was only one year older than Julian, died of brain cancer last weekend at CHOC and then reading more about what medullo is going to do to Julian over time, it just makes the nightmare worse. Forgive me for unloading. I usually try and keep things positive, but I just need to share my thoughts tonight. Maybe the fact that he is 2/3 of the way through is contributing to these feelings. Right now, we have a plan to hang on to, a protocol, and we are following it and, thank God it seems to be working. But when the chemo is done and we complete the plan, then what? How do we keep the beast away? There is no plan after that. Just to trust God even more. And pray. And live life. One day at a time. Just like the doctor told us the day after Julian's first surgery. ''Don't fret about if he'll marry someday, or go to college. Just take it one day at a time.'' It's simple advice and actually something you have to consciously practice, taking life one day at a time, but it really does help. And, as another friend said, one day at a time is all any of us really have, isn't it? Good night and blessings.