Gianni & Jessica tag team the Easter Bunny
Everything else is (as Gianni would say, "totally") insignificant. We've had a mixed bag of ups and mid-points re the NG tube - it just keeps coming out! Tony has become quite the NG installer though - will wonders never cease? It freaks us both out (actually probably all 3 of us!) to have to put it back in, but it could save a trip to the hospital so we've been ponying up.
Easter was also big fun, the Easter bunny came and hid dozens of (plastic) eggs all over the house. Gianni's were filled with "Littlest Pet Shop" critters and Bruno's were filled with "Hot Wheels". Gianni and I hit the Brisbane Rotary Club's Easter Egg Hunt on Sunday afternoon with Auntie Jen & Uncle Timmy. Gianni and Jessica cleaned up. I have more hard boiled eggs than I know what to do with - yuck.
Big sis Elly, Mamma Deb, Boss, and Georgia came over later in the afternoon to spend a few hours just hanging out. Plus, whenever Debbie stops by you just never know when a hair cut might happen (Bruno got his shaped up a bit, right on the deck!).
Fun time had by all. We missed Easter dinner (Gianni's NG came out and we had to deal with that . . . ), but overall it was a nice weekend at home. We popped into the clinic on Monday morning to have the NG put back in (not so much fun). But she did not have to get accessed or do labs - we covered all that just before her MRI on Tuesday (counts had dropped but were still okay).
Back at LPCH on Tuesday for the MRI - the procedure went smoothly AND she came out of the anesthesia much more calmly than before.
Trish (our NP) told us the good news re: the MRI results this morning (yeah) - we still have a long haul, its a marathon and all that, but great news is still GREAT news!
We start round 5 next Wednesday.
We are thankful for all of your thoughts and prayers!
More water for my sandcastles - - chop chop mom!
Super Trooper
Well, this time no news is not great news, but because I've been such a poor blogger the circle has completed and we are back in the business of being good!
Last Friday evening Gianni popped up with a fever and emesis (thats the "official" word for puke). We had just been told that she was neutrapenic so this meant an automatic admission and at least a 72 hour stay at the hospital. . . we had just got home from the hospital(!) (big bummer). We were caught a bit off guard so I bundled her up and drove to the emergency room while Tony corralled Bruno through dinner, bath, and bed.
Gianni and I went through the ER boogie - no fun, lots of pokes, prods, "pictures" (i.e. x-rays) - and settled down to wait for our room. Tony ran interference and called all the Packard decision makers to ensure that his girls were properly attended to.
We finally got a room around 2 am and settled in for our unplanned admission. We were "in" until the following Tuesday. The good news was we had the room to ourselves for 2 of the 4 nights. I'm not superstitious or I'd think that I had jinxed us - but we have spent every official and some "unofficial" (e.g., St. Patrick's Day) at LPCH . . . lets hope that missing St. Patty's Day gives us a credit against Easter!
She never did spike another fever or develop and infection but the "emesis" was pretty regular and her counts were slow in coming back up; thats why they made us stay the extra day and a half. Over the course of her stay she received two transfusions, two Easter bunnies, two re-insertions of the NG tube, and her new best friend - Sponge "Frank" Square Pants. Sponge Frank is a little stuffed spongebob toy named for the attendant who wheeled us (together in the same teeny tiny bed) from the ER to 2N.
Tony and I took Gianni to clinic yesterday (Thurs) - she got her chemo bump and we got the good news that her counts were high enough to forgo the nightly shot (what a relief!).
The next milestones are her MRI (next Tuesday) and then Cycle 5 starts April 2nd. Her doctors are confident that she will be strong thru the standard 6 cycles and even hopeful that we'll be able to get her thru all 8. Depending on the results of her hearing test next week they may cut out even more of the chemo which would make cycle 5 a bit easier on her.
Now that we are home, she is running amok, and we are looking forward to a quiet weekend.
We appreciate all your thought s and prayers!
Funny Bunny
The lumbar puncture was last Wednesday; the procedure went as expected but the anesthesia was trouble again. She comes out very agitated and upset, we'll have to work on that a bit more. We spent Wednesday night at home, had a nice dinner, rested, and prepared for the big admit.
We arrived at PEC Thursday afternoon and got settled in right away. She had a little bump on Thursday night wrt to her NG tube; nothing "we" couldn't handle. Our oncologists reduced the dosage of another one of her chemo drugs, cisplatin - that's the drug that effects her hearing. We've been taking her to an audiologist to make sure we have a good baseline and now that the higher frequencies are being effected, they've decided to pull back a bit. That little break has made a huge difference in her spunkiness level, she is truly feeling like her old self (as old as a newly turned three old can be!). [Please, all KNOCK ON WOOD...!]
The PEC was great; quiet, attentive staff, and we were out of there by Saturday night. She's been through this enough times to now know what is coming and she asks to go 'home' almost as soon as we get there . . . she is referring to the cabin, not the B'bane house (talk about getting straight to her daddy's heart!). All in all she is THE trooper.
The nightly shot is back; a bit of a bummer for all, but another small price to pay. She is regaining her appetite, sense of humor, and zest for trouble.
G'Ma and G'Pa Walker came to dinner on Sunday [Tony prepared the celebratory BBQ feast]. Uncle David's happens to be "on the way" from Lincoln so Bruno gets a lift home and first dibs on the Easter baskets that weighed down the trunk of Grandpa's car. Too fun; and I even got an Easter Pumpkin Pie . . . yes, Easter (!) any excuse for G'Ma's pumpkin pie!
We took Gianni to clinic last Monday, just a quick in and out for bloodwork (which by the way, confirmed our confidence in her levels). We'll get back into the regular routine (Mon and Thursday clinics [chemo for the next 3 Thurs]) and hope we stay out of the hospital this cycle. The next big milestone is the post cycle 4 MRI.
Much appreciation to all of you, we are grateful for your thoughts, prayers, and wishes. They really matter to us and we gain strength from y'all (I can say that, being from KY).
Gianni has been a busy girl this week; we had a really great visit with Auntie Amanda and the weekend "off" was an unbelievable treat. The girls weekend was just as advertised, a lot of ice cream, catching up, shopping, some fine dining, and all around girl time. The boys came back a little early and made an amazing BBQ feast for us, Aunti Jen, Uncle Timmy, and Jes. Yum. Gianni has been playing hard, eating on her own a bit, and keeping her own. Tony took Bruno with him to work (i.e., Santa Cruz) on Monday so the boys have had their fun too.
Every day this week has been better than the last; it is so tempting to just keep her home.
Monday's clinic went well, Gianni's port had been acting up so the nurses put in a dose of TPA, an anticoagulant to help break down some of the build up that was blocking access. The TPA worked like a charm and she is ready for action. The first course of action was a RBC transfusion yesterday (Tuesday). When our oncologists called Tuesday morning to tell us that her hemoglobin was low and a transfusion was necessary I was in the midst of telling her to slow down, and stop running in the house! Hard to believe how resilient this little girl is!
The pet fish have not fared quite as well - I think I'll stick to gardening.
Today is the lumbar puncture - tomorrow is the admission for chemo at PEC. We are as ready as we can be and she will be going in the round very strong.
The pictures are of Bruno at work with daddy, and Gianni working out the finer mechanics of my cell phone. She already knows how to take pictures, text, and phone home - I should take lessons!
Gianni & Jessica tag team the Easter Bunny
