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, January 14, 2008
Cycle 2, Day 7
Home again, home again, and boy does it feel good! This round seemed to go a bit smoother than the last; the doctor's cut down her chemo a bit and coming home with no tubies attached was a bonus. We are back to giving daily s-h-o-t-s but it seems a small price to pay for having her home longer. She did pretty good with the chemo, some nausea, a few headaches, and a bit of sleeplessness. We have a day or so of dealing with the mood swings and irritability that arises from the steroid she takes . . . but honestly, not much different from the mood swings and irritability that arises from her being three. All in all, she did just great.
We are trying to stay ahead of the constipation issue (who knew what a BIG deal pooping could be), so far so good (I won't gore you with the details!). Her appetite is good, although strange. We are back to salami, frozen waffles, "cold" macaroni and cheese, dried fruits, and MILK, MILK, MILK. I'm learning a few tricks for loading calories . . . ever tried mac n' cheese made with condensed milk...? Yummy = )
The docs also gave Gianni some relief on the "pokes" this week by allowing us to postpone her Monday blood draw until Thursday's clinic visit. Her new port requires a "poke" each time we access the port. Most pain is (allegedly) alleviated by using a numbing cream before hand, but I guarantee the first few times we have to "access" her will not be fun.
The big news this week (if her counts cooperate) will be some playtime with her mommy #2 (Miss Martha) and her ole' gang (Giancarlo, Clair, Baby Paul, and Elodie).
The picture of Gianni was taken on Saturday (last day of hospital stay). She is showing her Super Girl muscles.
====Funny Gianni===
This morning after pulling her shirt down to show me where her "old" port had been and the bump where her "new" port resides; "Mommy, I fell down and my Broviac fell off!"