Gianni is our pants on fire 6 yr old. In Nov 07 she was diagnosed with a supratentorial primitive neuroectodermal tumor (sPNET), a highly malignant, rare brain tumor. Dr. Nalin Gupta (UCSF) performed surgery to completely remove the tumor. She completed 9 mos of high dose chemotherapy with Dr. Paul Fisher/Trish Murphy, NP at Stanford's LPCH (Palo Alto, CA) in Aug 08. Today (19 Nov 2011) she is 1,464 days (4 yrs, 3 days) NED!!! [who's counting...?] Thank you for your positive thoughts!
Wednesday, January 16, 2008
Cycle 2, Day 9
This last few days at home has been remarkably "normal". We've taken advantage of the main benefit of Gianni's new port and dumped that little booger right in the TUB. I can not express what a relief that is - her and Bruno have really missed that simple, nightly ritual. She seems to feel pretty good, she is tired but all in all keeping up with a relatively normal schedule. In fact, Gianni spent a few hours at her old stomping ground yesterday (Miss Martha's). She got to spend time playing with her buddies, picnicking outside, and brushing up on her old tricks. She really did well and it was a great homecoming with Miss Martha.
Tony and I are getting pretty good at the s-h-o-t-s, at least it feels a little less traumatic (for us - I'm sure Gianni would not agree!) and we are getting closer to finding a handle on the whole poop issue.
We go to clinic tomorrow which will be her 1st access to the new port - not looking forward to that. She will also get another "bump" of chemo, so this weekend will be pretty low key.
Thanks for all the good thoughts, prayers, and wishes!