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!
Tuesday, January 22, 2008
Cycle 2, Days 15-16
Monday was a rainy, dreary day - good day for a movie . . . or say, a transfusion. . .whatever! Transfusion went well. It was our first trip to the day hospital and it was quiet, being MLK and all. Tony met Gianni and I there so that I could go to work after she was accessed. She seemed to perk up after the RBCs and was predictably a little irritated by the platelets. We got to go home around 5 PM.
Bruno had a fun day with Auntie Jen (got to see the Chipmunks Movie; A-L-V-I-N!!!!)
Tuesday morning we were planning on letting Gianni go to Miss Martha's, but I noticed a bit of blood in her morning diaper - not as alarming as it sounds, but it does warrant another trip to the hospital. The concerns include dehydration, reaction to the platelets, infection, or some myriad of combinations of the three. Because I had already packed for Miss Martha's, we were amply supplied and had everything we needed as we waited for the tests to be run. The big challenge was getting her to pee in a cup . . . oh my, the nurses will have to establish a plaque on the clinic bathroom for us - we stayed on that pot for 3 hours! The nurses were funny though, we had every old wives tale implemented in that 10x10 room . . . peppermint oil, tubs of warm water, running water, ice, juice, you name it! Eventually we had success and were able to go home. She was super dehydrated so the infusion of fluids was a good thing.
The good news (there always seems to be good news!) is that her counts are up which means we can now forgo the s-h-o-t until the next cycle (hallelujah!! - although, I've gotten so I can even administer the shot all by myself - who knew!?!)
Our main challenges now are to keep her feed, hydrated, and pooping; its funny how there is this big C-A-N-C-E-R to fight and all we obsess with are the most basic bodily functions.
The picture was taken during Christmas-time (I think it was while we were there for her F&N); a few 49er players, coaches, and their wives and significant others distributed "Build-A-Bears" that they had made to all the kids. Gianni picked a "Princess Bunny" (of course), and had a nice visit with one of the coaches wives and her baby boy.
===Funny Gianni===
Miss Martha has always called Gianni by her middle name, Bella. When Gianni spent some time with Miss Martha last week, she had to correct Miss Martha by saying, "Me not Bella, me Gianni Gheno!"