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!
Monday, February 25, 2008
Cycle 3, Day 20 . . . HOME!
We are home!!! Whew. . . no need to express the good news part of that statement. Gianni's counts started to rise on Friday and were high enough to get us out of that popsicle joint Saturday morning. She is doing well; a bit unsteady on her feet (that's a long time to be stuck in bed!), a little tired, and not interested in food of the constituted type but doing well. This is the part where the NG tube is a great addition to our little program. She is getting all the nutrition, hydration, and supplement she needs - no stress.
She has been home just over a day and we can see the improvement in her mood. More good news - no chemo again until 05 Mar; we have over a week to just coast. We are looking forward to a visit from Auntie Amanda (she's a doctor too, but "only" a PhD so she's okay!) and getting used to the new "feeding" routine. That part is actually not too bad, we've worked things out so she's only hooked up while she's sleeping. It just requires a bit of planning on our part.
Everyone has been so supportive and we really, really appreciated (and needed) it this round. Thank you, thank you, thank you!