MONDAY, MARCH 16, 2009 04:17 PM, EDT

We went down to the Jimmy Fund at Dana Farber today. We met with the neuroblastoma expert down there.

There are 3 things we know about that will help beat the cancer down for a while: chemo, MIBG therapy and antibody therapy. Ally has started the chemo, and the expert said that is what she would have done, if she was Ally's main oncologist. That made us feel good. She talked to us about the MIBG therapy. Right now Ally gets MIBG scans to see what the tumor is doing. The therapy is a MUCH higher dose of this radioactive material. It would require a lead lined room, VERY limited access to Ally for about 5 days and a stay in Boston. It is a very new procedure for Boston to do, so they are still working out some kinks with that. This is something we are planning on doing with Ally. The timing would depend on a couple things: how Ally's next set of scans come out (how she is responding to the chemo) and when the room is available (there is only one room they do this in). The antibody therapy is still something we need to find out more about. That would require one of us to be in NYC for 2 weeks out of the month and there are lots of other negatives about it, such as: it is very painful.

The expert could give us no timeline as to life expectancy, as every single case is very very different. She did say IF the MIBG therapy does work, it tends to work well, for possibly months to even year(s). She did caution us though, that Ally's cancer came back VERY quickly, and her Myc-N level is elevated, so great results cannot be expected.

On more day to day news: Ally is doing well with her GCSF injections. She is willingly wearing her new PJ's and still refuses to eat enough to gain weight, so we have to give her feedings through her G-Tube a couple times a day.