Tuesday (05 Aug) was the last chemo - 8 rounds... she did it! Our super NP (a.k.a. "Auntie" Trish) sat and visited with us during the administration, we took pictures, the staff gave Gianni balloons and a stuffed unicorn ("Uni-Corny"). I cried, Gianni did not.
I equate this round to the 9th month of pregnancy. You've hit the milestone, but you still have to do the time... So now we just have to finish out this round (clinic, blood chemistry, transfusions, etc.) with no major bumps.
The plan is to have one (Tuesday) clinic a week until August 26th. Aug 26 will be her post-treatment MRI; after that it's 1 clinic a month. The port has to be flushed a minimum of once a month, plus we'll be able to monitor her electrolytes and perhaps get her off some of the supplements. Once she has had 2 or 3 clear MRIs, we'll take the port out.
So... nerves and fear of the future not withstanding - we are moving forward!
We celebrated last weekend with a trip to G'ma and G'pa Walker's - lots of fun shenanigans (we had lots of catching up to do)!
Last Tuesday's labs yielded "adequate" numbers (RBCs, platelets, etc.) - not great but not low enough to transfuse. We are hoping that she will come up on her own. Her head is getting fuzzy, her appetite is slow but sure, and her energy remains high.
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, August 15, 2008
Friday, August 1, 2008
Cycle 8, Day 12
Super Heros
Clinic and day hospital went well, however to quote Gianni, [as we walked in the house at the end of the day] "Whew, what a day! Sometimes I go to the hospital and it makes me sooooo sleepy!"
She's still neutrapenic (read: still needs nightly shot), she needed both RBCs and platelets (read: 6 hour day hospital visit), and for the cherry on top ... her gut infection (C-diff) is back (read: no big deal just more antibiotics and kind of a bummer). But all in all the day was fun. I love having the solid one-on-one time with her and knowing how close we are to the end of this treatment phase makes all the bureaucratic stuff seem just not as frustrating.
Brisbane has "Friday Music Night at the Park" so her and I swung by before we came home. I figured she's about as tanked up as she's gonna get and she had TONS of energy. I had to keep her away from the other kids but we enjoyed walking around the park and just watching all the neighbors "shake their booties!"
She's still neutrapenic (read: still needs nightly shot), she needed both RBCs and platelets (read: 6 hour day hospital visit), and for the cherry on top ... her gut infection (C-diff) is back (read: no big deal just more antibiotics and kind of a bummer). But all in all the day was fun. I love having the solid one-on-one time with her and knowing how close we are to the end of this treatment phase makes all the bureaucratic stuff seem just not as frustrating.
Brisbane has "Friday Music Night at the Park" so her and I swung by before we came home. I figured she's about as tanked up as she's gonna get and she had TONS of energy. I had to keep her away from the other kids but we enjoyed walking around the park and just watching all the neighbors "shake their booties!"
The pictures from a few weeks ago, but its a good one.
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