Maintain Quality of Life

Mike and I met with the doctor yesterday just to make sure we understood everything.

Here are the cold hard facts:

• 70 out of 100 neuroblastoma pts have a period of remission.
• Of those 70, 35 will relapse (later you relapse the better; Lisa is average time-frame)
• Out of those 35, 20 -30% will go into remission for a second time.

Without treatment---most likely 3 mos to live
With treatment---most likely 12-18 mos to live (hopefully most of that will be outpatient treatments, however there is always risk of fever, infection, etc)

Treatments are usually tolerated pretty well and given Lisa's response to chemo the first time, they are hopeful that treatments will keep cancer from progressing too rapidly. There are various treatments we can try if she is not responding to what they start her on....including MIBG radiation (the 3 day treatment she does in isolation by herself which we are considering for April).

The doctor reiterated that "There is no proven cure. The goal is to attempt to keep Lisa living while maintaining her quality of life. If/when cancer gets too progressive or Lisa is showing no response to treatment, then we would stop chemo and begin pain maintenance"

Lisa is still showing no outwardly signs of cancer...if she is able to maintain this level of health once she starts treatments, maybe she will be one who beats the odds and lives a lot longer than average.

She looks so good, it's hard to believe she is battling this disease. I feel like we are no longer "fighting cancer" but we are "living with cancer". I haven't quite figured out what that means to me, I just know my perspective is changing and I don't know what my priorities are anymore. I find myself confused about what I should be focusing on or doing with my time on a day to day basis.

I think about the question "what would you do if you had one year to live?" I'm not sure. Would I throw caution to the wind and do anything I wanted whenever I wanted, or would I practice some restraint, knowing that one year could stretch out longer and I wouldn't want to find that I still had time left but had used up all my resources and was penniless. AND...why does it take a time limit for me to start LIVING, why am I saving, planning, waiting.....why don't I embrace life and squeeze as much living out of each day is possible. Why do I ask why? Where is my balance?