Life Turned Upside Down - All Over Again

WOW what a morning. We are again in shock and fear about the future.

We spent all morning in meetings with doctors and their staff. We have finally (for the first time ever) seen the scans of Rebekah's face and tumor including the before and the after. We have a view of what the doctor's see as the long term prognosis including permanent issues.

When we are feeling better we will put out all the gory details but what we know right now is:

Notwithstanding the nearly complete lack of tumor in the recent scans without further treatment (radiation), the doctor's give her a 100% chance of re-growth of the cancer and a 0% chance of survival. With treatment including radiation she has, at best, a 50% chance of survival. Treatment will include permanent side effects such as stunted facial bone growth resulting in deformity, hearing and vision damage and potentially additional mental and nerological issues. The fact that the tumor appears to be "gone" at this point is significant in showing how it will likely respond to future treatment and that is included in increasing her odds of survival to as high as they are.

Details are scarce right now but radiation will include 3-5 hours a day for 31 days worth of treatment (M-F) or a total of 6 weeks. Chemotherapy will continue but be modified during that time.

This is not what we hoped for or dreamed of earlier this week in experiencing God's miracles of the tumor disappearing. Even if at least for a little bit, we were hoping that "gone" meant we could put an end to all of this. There has been a great lack of communication between the doctors and us that was also fueled by what appears to be professional differences between our previous doctor who has now left the practice and those who are remaining in how and what to reveal to parents/patients.

We are trying to remember, however, that the above scenarios are being painted by the same doctors who did not give the tumor any chance of being "gone".

Thank you to Keith and Steve for your visits during the last couple of days. They have been very uplifting.