Cycle 8, Day 11

Gianni's still doing well. Dad and Bruno are up at the cabin and Gianni and I are in for a long, relaxing girls weekend. She does have clinic and (most likely) transfusions scheduled for tomorrow. We'll go in the morning and hopefully be home for a late lunch. Getting blood products while neutrapenic is always a bit iffy. Sometimes getting the blood makes her spike a little fever; fever + neutrapenia is an automatic admit. Trish has been great about letting her be pre-medicated with Tylenol to help alleviate any spikes - keep your fingers, toes, eyes, whatever crossed.

She had a long nap today, woke up around 6:30pm and ate TWO whole pieces of pizza (did I mention that Tony is out of town?)! I could not believe it - she'll be keeping up with Bruno's appetite before we know it. Its late, and we should both be in bed - but she's here with me at the kitchen table painting. She's really great.

Cycle 8, In it to win it

Day 6: She is hanging tough. Really tough, in fact she is looking great and definitely feeling her oats. The chemo is just now starting to kick in, but she seems to be holding her own. We have clinic on Tuesday; that will be the actual, penultimate chemo treatment and also when we will be able to determine when (not so much if) she will need her RBCs and/or platelet transfusion.

Monday (day 1) was the LP (Uhggg - we had a few bumps there). She is so smart, and at the point where nothing can distract her from the "routine". No amount of bubbles, flashlights, movies, or promises of the toy store is going to take her mind off the fact that she's about to have an unpleasant experience. Bummer - and we are so close to the end (of this part). We were unable to access her port at the PACU (after multiple tries) so they ended up just gassing her in the procedure room and accessing her after she was asleep. They tried all kinds of ways to get her to "smell" the anesthesia and go under nicely - creative stories and at least 31 flavors of "gas". We (Tony & I) settled on strawberry - ultimately no avail. It ended up being just me 'hugging' her real tight while they held the mask to her [our] face. Of the four nurses in the procedure room - two of them left with me to make sure I wasn't "under". No fun, but we are bolstered by being near the end. She came out of anesthesia pretty well and we got home in time to celebrate Mr. B's 5th Birthday.

Monday morning - Bruno turns 5! Breakfast of CHAMPIONS
(yes that is whipped cream AND sprinkles!)

July 21, 2003: That's the day we first met our Bruno. He is growing so big, strong, gentle, and fast! He is kind and thoughtful, curious, and generous. He is a good boy. He starts kindergarten in August - I almost can not believe it. I'm certain that this past year has had it's toll on him - we've been pretty wrapped up in Gianni, our own shock, grief, struggles - he just keeps on keeping on. He always has a smile and a brotherly pat of encouragement for Gian, and has been a good friend and companion to her through this ... journey.

The party was fun - I even found time to hang streamers and buy balloons (an 'official' party per Gianni). Auntie Jen and Jessica came over for Blueberry Pie (it is what he asked for - although not such the big hit) and presents.

Balloons AND streamers... its a REAL party now

SURPRISE!

Blueberry Birthday Pie

Tuesday morning Tony and Gianni went to PEC for the 3-day admit. He again got to spend the lion's share of time with her (all day Tues - Wed night, and all day Thur). I was able to visit in the mornings and early evenings and spend Wednesday night with her.

Wednesday night - shenanigans...

Since Thursday was the last in-patient chemo treatment the nurses and staff at PEC had a mini 'graduation' for her. She got a nice certificate with hand written farewell's from her nurses, a big goodie bad of "littlest pets", and a beautiful SpongeBob SquarePants ice cream cake. Tony brought champagne and just after the last push (Etoposide) he let Gianni cut off the 'good luck' arm bands he has worn since she was first diagnosed - last November (peyou!).

After living day to day - this milestone kind of creeped up on us. And it feels great!


We ran out of PEC as soon as the de-access and sub-Q procedures were done and ran straight to Auntie Jen's to celebrate and share SpongeBob.

Now we just wait - we are doing our best to keep her healthy and out of the hospital... from our cycle 6 to cycle 7 break we know that once she's past the nadir hump she will bounce back quickly. I am sure that we have more long hauls in our future but for now .... it's looking so bright I gotta wear shades!

Gearing up for Cycle 8

The words are hard to type... it's really cycle 8! To torture us, the folks at LPCH have had to delay our start date from today (Wednesday) to Monday. Lots of reasons - a small contribution having to do with her health (still trying to clear up the UTI) and a larger contribution due to scheduling. Lots of sick kids at LPCH and PEC this week. So rather than throw the dice and wait for a potentially late Friday night admit; we've decided to start the whole boogy on Monday morning with a guaranteed room at PEC on Tuesday. This will push her "final" chemo administration to the 1st week of August and the official end of cycle 8 just in time for Tony's birthday (now how are we supposed to top that gift!).

She's doing well - well enough to have collected a whole cadre of 'regular' kid bumps, scrapes, and bruises from running too fast, playing too hard, and pushing her limits. Its grand.

More party.... still no streamers!

The GI thing ended up being some nasty bug named Clostridium difficile (C Diff) - treatable with more antibiotics. The antibiotic of choice is named Flagyl; funny to me, because it sounds so similar to flatulence (a real symptom too) . . . I guess you had to be here, or perhaps, had no consistent sleep for many, many days . . . So she gets this one every six hours, four times a day for two weeks (thank goodness for the NG). This infection does not qualify, however, for an "excluding event" and cycle 8 is On. We will start, with the "regular" routine (LP on Wednesday, admit to PEC Thursday - Saturday) next week.

Last Wednesday Gianni was ill during the night (emesis) and she 'lost' her NG tube - she has clinic on Thursdays so I just let her go commando for the rest of that night and the following morning. Although we love the NG (route for all her nourishment, fluid, meds . . . ), she seemed so footloose and fancy free without it. I could not stop kissing her bare little check! Alas, the nurses at LPCH did a great job, and the NG is back doing its thing.

Thursday's clinic netted some really great numbers (very high ANC) so the monthly pre-round cabin trip was on! We've really gotten the 2-day turn around down to a science. We left very early Saturday morning - got to the cabin in time for breakfast. Lots of great cabin stuff.

Bongos and brownies, but no streamers = no party!

Gianni's MJ tounge... pure concentration.

If I had a nickel for every popsicle picture!

We are home now, ready for action.

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Funny Gianni

"Cheese doesn't make you fat, cheese makes you happy!"

Cycle 7, Closer to the end than the begining

Quick update; Gianni's hanging tough. We discovered early Sunday morning that she has had a UTI . . . since last Wednesday . . . don't ask. Regardless, we got a prescription for antibiotics ordered and picked up in no time flat and she has been feeling a bit better. Monday's clinic visit uncovered a gastrointestinal (GI) tract infection that has also probably been brewing for a while - this is a bummer because if she does not resolve this one on her own it could mean a long hospital stay (~ 1 week) to "rest" her GI. We are crossing all appendages however because, so far, the antibiotics for the UTI seem to have had some positive effects for this infection too and she is holding her own (at home).

This past weekend Gianni and Bruno spent a lot of quality time at the park; Gianni is proving to be fearless when it comes to slides . . . a real daredevil!

Trish and Dr. Fisher are back in full swing and all seems to be "right" with our little world again.

Glorious Independence Day!

Happy, happy fourth to all. We had a great day with family and BBQ. The kids (all of 'em, including big sis Elly!) ran amok and the grown-ups enjoyed a relaxing and fun afternoon. We had steaks, spaghetti, ball park brats, potato chips, root beer, special anniversary wine, and even a cupcake cake decorated like the American flag (with lots and lots of icing) - oh my! Tony even decorated with flags all abound.

Because Gianni kept insiting that this was her birthday party we put candles in the cupcakes and all sang, "Happy 4th of July to us...Happy 4th of July to us..." and then blew out the candles. She also duly chastised us for not having streamers ("You can't have a party without streamers!" - next time).

Yesterday was also our 7th wedding anniversary - wow, it seems like just yesterday! The 7th anniversary traditional gift is copper or wool - the modern gift is a desk set - - - hmmm romantical. We stuck with the ever more traditional time and family.

Tony snuck up to the cabin early this morning. Bruno and I will take Gianni to the day hospital for a quick set of labs to determine if her counts are high enough to stop giving the shot. Catch 22 really cause she needs a poke to stop giving her the pokes . . . We'll make a day of it - stop off at the park and maybe spend some bucks at the ice cream truck!

Cycle 7: More fusion...

Fortunately Fridays visit yielded test results that indicate she is no longer neutropenic (just barely), unfortunately she's got no RBCs so we'll be back tomorrow (Wednesday) morning for another transfusion. Without Trish around its been hard figuring out who to negotiate with re: timings and beds at the hospital, but we've done pretty good so far. Looks like we may even be able to sneak in her last chemo dose (of this round) tomorrow too (a day early) which would mean (totally knock on wood) that we would not have to go back until next Monday. She's prone to go neutropenic again so she won't be making it to the cabin (for the first July 4th ever!). . . but we will stir up some fun in the ole 'bane.

She is doing pretty well, despite some belly aches, nausea, and the ever present diarrhea . . . We are still giving her the nightly s-h-o-t, and that is no fun but for now she is looking good and ready to be all tanked up for the long weekend.