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!
Friday, May 23, 2008
Gearing up for Cycle 7
Clinic on Thursday was great - Gianni's numbers are good enough for our whole family to sneak up to the cabin!
Our only gate is another ultrasound and consult with the pediatric urologist at LPCH; our Super Nurse Practitioner Trish (SNPT) wants his advice before starting chemo for round seven. Last weeks bladder problem (hemorrrhagic cystitis) is most likely caused by the chemo drug Cyclophosphamide which is really weird because she is prophylactically treated with a "chemoprotectant" called MESNA which has practically eliminated this side effect for most chemo patients. But our little Gianni, delicate little flower that she is (HA), has figured out a way to become susceptible. Her symptoms have all but disappeared thanks to a very strict ("ball & chain" - SNPT's words not mine) regimen of water that Tony administers throughout the day. She gets a full 2 liters every 24 hours and boy have we gone through the diapers!
Of course the only available time (which we were lucky to get) is today... Friday... getaway day. But this is okay, we are grateful to get as much information as we can.
Next Wednesday is day 01 of cycle 7 and her 3rd (post start of chemo) MRI. No words express our feelings of hope, anxiety, and fear. Please keep Gianni in your thoughts and prayers.
We've had a really nice few days together at home and are fully looking forward to a stretch at the cabin - fishing, pirates, play dough, bugs, fire pit, marshmallows, KY hayrides, hiking, baking, BBQs... oh my!