Hi, everyone ~
Well, the road show is drawing to a close. Since Thursday, we've been to
Children's Hospital and Johns Hopkins each twice. We know obtaining 2nd
and 3rd opinions was the right thing for us to do and are definitely glad we did
~ but boy... we're feeling tired and a bit overwhelmed.
Without drowning you all with details, the most prominent Pediatric Neuro-Oncologists in the region all feel strongly that our best shot at cure requires chemotherapy coupled with focused radiation. Radiation remains the single most effective treatment for brain tumors and the focused technologies that exist will allow us to do the least amount of harm to the surrounding brain tissue. It is very important to cure this the first time around. The likelihood of curing a recurrence is dismal.
Ethan will require a central line for both treatment options. He is scheduled for that surgery this Wednesday at Fairfax INOVA. The most pressing consideration right now is that Ethan is 4 weeks post-op and we need to begin treatment as quickly as possible. At this point, we think his treatment will go something like this:
This is our preferred treatment plan, but the phone calls with the insurance companies begin in the morning :-(. There are still many details to work through.
As we move through treatment, Ethan will be monitored very closely for tumor growth and his treatment will be adjusted accordingly. There is still an option on the table for full craniospinal radiation, which would have devastating consequences to his physical and cognitive growth and development. For a lot of reasons, Albert & I are not yet prepared to take that measure.
Ethan's prognosis appears to be much better than a classic PNET. First, the pathology suggests that the tumor is not as aggressive as most within the PNET family... so much so that they're reluctant to even call it a PNET (but the supratentorial PNET appears to be its closest cousin). Second, the tumor was growing within a cyst which effectively provided a barrier between the tumor and the rest of the brain. The Neurosurgeons also told us that the cyst gave them a nice, protected working area from which to perform the resection. Which brings me to the last and most important factor, which is that the Neurosurgeons appear to have achieved a gross total resection. More than tumor classification, staging, age of patient, location in brain, etc... we've been told that gross total resection is the single most important precursor for a cure. Given the information that is available to us now, we think we've made the best decision that we can.
Please continue to hold Ethan in your thoughts and prayers.
Warm Regards,
Kim, Bert, Ethan and Kyra