All done...

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.

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!"

The pictures from a few weeks ago, but its a good one.

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.

------------
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.

Cycle 7, Days 10 - 12

Thursday's clinic numbers indicated low platelets and dropping RBCs . . . but the call for her to get a transfusion was not made until about 3 minutes after her deaccess. So, Gianni and Dad got to go home (great family dinner and bath time Thursday night = ) ) and we brought her back on Friday late afternoon for a platelet transfusion.

She is definitely feeling the weight of being so far into the chemo. The brief (~ 4 hours, because we had to wait for platelets) day hospital visit was not so much fun for her. She is just tired of all the pokes, prods, checks . . . she put up a bit of a fuss after the access (3rd time in 5 days) but then just napped during the rest of the procedure (I'm sure the Benedryl pre-med was a factor there!). I bundled her up as soon as she was finished and we "ran" out the back door.

We are planning for Dad and Mr. B to hit the cabin this weekend; I'll be watching her closely for fever . . . knock on wood . . .

Although, if history is any indicator, we should get a break until the holiday huh?

Thanks to all for your prayers, wishes, and warm thoughts - we feel them!

Cycle 7, Chillin' with Dad and Mr. B

Clinic today; regular physical exam and dose of Vincristine. It's been a low key few days at home, Tony even kept Bruno home from school yesterday so that Gianni would have someone to torture.

Cycle 7, Days 5-7; Fire on the Mountain

Saturday was great - Bruno officially graduated from pre-K and Gianni got out of PEC just as planned.

Graduation was fun; G'ma and G'Pa Walker made the trek from Lincoln to witness the deed - complete with balloons, camera, and celebratory graduation lunch (corn dog* and chocolate ice cream). Bruno was quite the star and was the only kid who got to hold a microphone during the encore version of "Its a Small World After All" - apologizes in advance for putting even the hint of that song in your heads, but I was very proud.

Bruno and I made it back to the hospital around 4pm; just enough time for Bruno and a new hospital friend to play a few rounds of video games in the play center and for Tony to catch to catch us up on Gianni's day. The nurses at PEC were astonished at how quickly we were outta there! We had timed her MESNA flush down to the minute and finished all the paperwork early so that immediately after her two "exit procedures" (arm band-aid [sub-Q catheter] and de-access of her port) we could pop her in the stroller and run out the door. That is exactly what we did.

Nice, quiet, late dinner at home and everyone gets to sleep in their own beds!

Sunday was exciting too - big five alarm fire in the 'bane. Luckily no homes were lost and the damage seems to be restricted to the hillside - but just no rest for the weary! Kudos to the CDF, pilots, and all the hot shots on the hill, they did an amazing job.

Clinic on Monday - Tony took Gianni and her baby... how cute (Gianni was adorable as well).


We continue to giver her the G-CSF shots at night, but other than that we've got nothing hopitally planned until Thursday's clinic.



* At the restaurant I spent 10 minutes trying to explain to Bruno exactly what a corn dog was . . . pre-cancer the kids never got "treats" like that. He looks at me like I'm speaking in a completely different language and says, "Yeah mom, Uncle David gave me these like, four years ago!"

Cycle 7, Days 2-4

Another quick post...

So far so good, she's hanging in there. Tony, on the other hand, has seen "The Little Mermaid" enough times to be able to quote, verbatim, the evil sea witch Ursala's "You poor unfortunate soul... " bit. For those of you who know Tony well, this is truly unfortunate = ). I guess it also doesn't hurt to have the room painted in a tropical ocean theme!

Room 560 decorations at PEC

We are scheduled to say "see ya later jokers" late Saturday night; labs the following Monday and Thursday. Both Dr. Fisher and Trish are on travel through early July so we will be breaking in some very capable oncology NPs for the next two weeks.

Talk around the floor is that if Gianni does not fair well during this round (i.e, cystitis, line infection, flu, severe puking, headaches, or any of the other cadre of maladies our little one has suffered), this may be the last round of chemo. At the very least, cycle 8 may have to be greatly modified to get her tired little body to eek through. Nearing the point of diminishing returns. What a trooper.

Thinking about the End of chemo brings an unsettling mix of joyful anticipation and surprisingly, anxiety. When chemo ends we will have stopped actively fighting the cancer; the treatment phase will be completed. The next phase is to monitor, she will have MRIs every few months for the foreseeable future. I believe I need a crash course lesson in living, really l-i-v-i-n-g in the present - not worrying in the present or second guessing the future.

Should this be the last (and even if it's the penultimate) chemo, we've been given an unexpected, albeit small peek into Gianni's immediate future . . . Because this round of chemo was delayed so long, her hairs (eye lashes, brows, on her head) have started to grow back. Its not much, just a little fuzz - although her previously enviable longer and darker than humanly possible eyelashes are back with a mighty vengance and I'm afraid I won't recognize a hairy Gianni!

Fuzzy

Tony let me stay with Gianni again tonight so that I could witness Bruno's pre-K graduation tomorrow - I'm bracing myself for the full pride, pomp, and circumstance of glorious matriculation.


It's late, but Gianni is still up watching Dora, cuddled in a super soft Ariel blanket and drinking water from a non-lure tipped syringe (for fun) . . .

---Funny Gianni---
[After giving her some juice to drink in a tiny medicine cup]
"Thank you, you're a good mommy."

[After cleaning off a spoon so she she could have some ice using my spoon]
"Mommy, I like your germs the best."

Father's Day and LP is neagtive = )

Happy Father's Day to all our dads!

We celebrated a fun Father's Day at the cabin; bundled the kids out of bed real early on Saturday and came back late Sunday night. We packed as much as we could in those 36 hours though! Lots of the regular bubbles, hanging in the club house (Airstream trailer), amazing dinner on the BBQ, music night, movie night, popcorn, watering flowers, boccie ball, pirate ship... you get the gist. We all had a really great time.

Monday was Gianni's ultrasound to check out her bladder - all is well.

Tuesday she had her lumbar puncture with the 1st dose of Cycle 7 chemo. The procedure went well and for the first time every she came out of the anesthesia like she was waking from a nap. Tony and I were just incredulous, it was great. She opened her eyes, sat up (with some help) and asked to go home - that was it. Amazing - complete opposite of what has happened in the past.

The LP came back negative!

Wednesday (yesterday morning) we admitted her at PEC for the rest of her chemo. By early afternoon she started having severe headaches and vomiting, most likely a result of the chemo from Tuesday - miserable to see her in pain but by late evening the docs had found the right mix of Tylenol, Adavan, and morphine to help her rest and manage the pain. Tony and I will be switching off nights; Tony has the lion's share of the days. We hope to be home by Saturday afternoon.

Bruno is toughing this one out with us with help from Auntie Jen (she took him swimming yesterday). He "graduates" from pre-school on Saturday.

Thanks to all for your love, support, good wishes, and just checking in on our Gianni!

Gearing up for Cycle 7 . . . Really!

Just a quick update today.

We finished Gianni's final IV antibiotic infusion last Wednesday night (whew!). Tony took her to clinic on Thursday to be de-accessed and today for labs. Her counts are great so we are planning on a quick 2-day trip to the cabin (it is Father's Day after all!).

Round 7 starts next Tuesday.

Lots of gratitude and hugs to all of you for your constant support (we feel it!).

Houston, Tranquillity Base here. The Eagle has landed. - Neil Armstrong

Bruno had a fun weekend at Uncle David and Aunt Patricia's. We had the whole gang home tonight for BBQ - Gianni was very happy to see Bruno, for about four whole minutes! The Vanco infusions are going well and even Tony will get to try his hand at it tomorrow.

Looking forward to a quiet week.

Still more Cycle 06

We are home and enjoying a beautiful and quiet weekend. Tony left this morning to collect Bruno circuitously via the cabin . . . hmmm. Turns out that is okay, because Bruno did not want to miss out on Uncle David and Aunt Patricia's swim party (with cake!) anyway. So we'll have the whole gang home again tomorrow.

Gianni and I laid low today, some lounging around, some shopping, and a stroll along the Bay pretty much sum up the excitement. The vanco infusions are going just fine, seems that all that practice we got with the Broviac is paying off. The plan is to continue the infusions through Wednesday (every 8 hours) and then not go back to clinic until Friday. This will be the longest stretch she's had in quite a while.

The picture is of Gianni and Kevin Frandsen. The folks at LPCH were kind enough to track it down for us - I look a bit crazed, but its an awesome shot of the two of them.

Interesting few days....

Gianni presented with a fever on Monday night (> 102-deg F) although she's was not neutrapenic we were still a bit alarmed and called the on-call pediatric oncologist and were told to head directly to the Emergency Department (ED), do not pass Go. So Gianni and I spent Monday night thru early Tuesday morning at the ED, she suffered through the required pokes and prods while spiking in and out of fever. Once the initial results of her ED blood draw came back (still not neutrapenic!) we were sent home to await the final results (what was causing the infection).

We spent Tuesday morning at home waiting for the blood cultures to grow . . . and grow they did. Turns out she has an infection (most probably staph) in her line (medi-port) which means . . . an admission (up to 10 days +!) for IV antibiotics and further cultures to determine exactly what she's got. Needless to say, chemo has been delayed again, we are looking to tag it on to the end of this stay (maybe early next week?) we shall see.

Bruno is in good hands with Uncle David and Aunt Patricia for the time being - he has been quoted as stating, "Mommy, who?".

One great bit of luck is that we were given a private room at Stanford . . . all the difference in the world! The privacy gives a good deal of comfort to both Gianni and dad.

All in all she is in good spirits. The antibiotic (Vancomycin) has kicked in and she seems to be feeling pretty good. Speaking of antibiotics . . . Gianni has, so far, had no unexpected reactions to the meds she's been administered . . . that is until Tuesday afternoon and whoo boy did she have a doozy! One of the potential side-effects of "Vanco" is something called "red man syndrome". Truly a case of "say it in the name"; about 5 minutes into the treatment Gianni's whole body just turned bright red and she started screaming and scratching everywhere at once. Tony and I virtually freaked! The nurses gave her some Benadryl and the symptoms cleared up in about 15 - 20 minutes, but for that time she looked just like "Jack-Jack" from the Incredibles! She has received several more doses (now infused over two hours vs. one and in conjunction with Benadryl) and has not had a similar reaction. Whew, cancer is exciting.

The next day, Wednesday was a good day for Gianni. During the day, she and dad terrorized the halls with a toy lawn mower borrowed from the playroom - too funny. That night at the playroom Gianni got to visit with SF Giants second baseman Kevin Frandsen. He was so great with the kids and his visit was obviously a highlight for many of the patients and parents. He brought t-shirts and hats to sign for the kids and when he asked Gianni if he could sign hers, she said, "No, I want to color yours.". He laughed, gave her the marker and let her sign his shirt! Over the next hour or so all the kids had an opportunity to "color" on Kevin's shirt... very nice. Of course all this is much more exciting for Grandma Walker than Gianni but she had a really good time.

Todays news is all good. The infection is under control, we still need to continue the course of antibiotics but her blood cultures are all coming back negative. If all goes well we will be able to take her home tomorrow or Saturday. A home health nurse will come on Friday and teach us how to prepare and administer the antibiotic infusion ourselves (one more qualification to add to our resumes). We are so ready for that! We will monitor her progress and for now chemo cycle 7 is scheduled for the week of 16 Jun.

**MRI Is CLEAR**

To quote Gianni, "I'm runnin' outta gas!" However, it must have taken heroic efforts for our family at LPCH to get us the unspeakably wonderful news. One more clear MRI. I know each one is as important as the last but Tony and I are breathing in a more regular cadence. We had a nice quiet night - the kids stayed up late and (for once) Gianni fell asleep before Mr. B.

More gratitude than I am able to express...

[Still] Gearing up for Cycle 7

Still gearing up for cycle 7, but for now we will be in low gear instead of high. Turns out Gianni is neutrapenic again (second time this cycle) which means her bone marrow is just pooped out and can't quite get her counts high enough to safely start chemo tomorrow (her Absolute Neutophil Count (ANC) is at ~400, they won't start chemo until its >1000). She will still have the MRI, but no LP with chemo; the plan is to give her a short reprieve from the chemo (about a week) so that her counts can come back up and we'll shoot for next Wednesday to start cycle 7. Gianni and I had a fun visit to the Urologist last Friday, she did a great job with the "tummy game" (ultrasound) and the docs could not find anything out of the ordinary. So . . . looks like the hemorrhagic cystitis is under control; we'll check back with them after this cycle.

The trip to the cabin was fun and relaxing (proof is in the puddin' - see accompanying pics). It was a cloudy and rained a bit, but we found some nice breaks in the weather to play and carouse outside. We hit all the staples - bubbles, baseball, brownies, family music night, movies, popcorn, lizards, cars, dollhouse, and soldiers (to commemorate and honor the true reason for the season).

We'll be laying low for a while, enjoying the kids.

Gearing up for Cycle 7

Quintessential Gianni

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!

CHEESE!

F-U-N Time!

See ya later jokers! We got discharged today just in time for Gianni to make her "Listening Game" appointment. She's still neutrapenic, but we are keeping all appendages (and anything else that can be) crossed for a good long run at home.

MRI was scheduled to be combined with her Cycle 7, Day 01 chemo (only one time under anesthesia); that will be 1 week from Wednesday.

Cycle 6, No F&N, but no F-U-N either...

So, it looks like we don't have so much skin on our teeth after all; Gianni was re-admitted to PEC on Thursday night and won't get to come home until early this week. This time we don't even have a fever! One of the chemo side effects is an irritation of the bladder (very rare mind you) and well, she's got it. Gianni has become the poster child for rare side effects, we just hope that if the rest of her cells are this sensitive that the cancer cells are far worse off. She had been complaining of pain while peeing, and we had seen some blood in her diaper - the docs have been treating this as an urinary tract infection. When no white blood cells appeared in her sample, some just chalked it up to being neutrapenic; she had no white blood cells period, let alone ones that could be spared for an infection!

Once her counts came back up (and still nothing grew) we were able to rule out a bacterial infection, test are still being run to determine if it could be viral but the treatment regime is similar either way so we are moving ahead with the assumption that something is hurting her and we are fixing it. She has been super hydrated for the last 72 hours, this keeps things moving and all her diapers have been clear since Friday morning; no more pain.

It's Sunday today, and we've started hydrating her through her NG tube now - not the IV, this is good because it means we may get to go home soon. She was given an ultrasound today to look at her kidneys, liver, spleen, and bladder - hopefully these pics will provide enough information to let the docs know what's going on. She was a barrel of laughs at the ultrasound (being facetious)
- considering all the horrible things she's had to do, this one seems to be pretty minor. They just glob some jelly on the belly and roll a pen-like wand around. She screamed bloody murder and wiggled the entire time! I had to laugh. I sure hope they got the pics they wanted.

Seems that she is neutrapenic again too, not surprising this late in the protocol (read: only TWO MORE TO GO!!!!). We are doing okay, and Bruno has been able to stick it out with us so far, so all is good.

Thank you for all your support, good wishes, and prayers - we feel it!

Cycle 6, No More F&N

Gianni's home. We got the boot on Tuesday evening around 7 pm. I was in such a hurry to get out of there that I forgot to ask the nurse if her counts were high enough to forgo the evening s-h-o-t. When I called the doc back to get confirmation he said, "Listen lady, you barely made it outta here by the skin of your teeth, don't push it!". Gianni got the s-h-o-t, and we are more than happy to all be home together again!

Cycle 6, Finally an Update!

True to form, our predictive capabilities are scary! Gianni was back in the hospital on Friday afternoon with a fever. The Carboplatin seemed to have worked; Tony clocked her with a 103-deg F after her nap. . . bummer. She did have a great week between the 1st dose of round 6 and this admit - she kept us on our toes (ref: Spider Gianni, Bongo Bonanza, Playdate with Jes & Bruno).

We know that the safest place for her is LPCH, and we got her in through the clinic and into her own bed on the newly opened 1 North in record time. She did have some sort of urinary infection - the labs never quite resolved what it was but the symptoms were undeniable - poor thing. During her stay she's received lots of antibiotics, two RBC transfusions, and one platelet transfusion. She, being the ultimate trooper, has taken the whole admit in stride and continues to charm the LPCH staff. She keeps a near-life sized Sponge Bob Squarepants, given to her by her childlife friend Courtney last week, near by at all times - really cute. Not to be slowed down, she has been sighted tearing through the hospital in nothing but a tank tee, a diaper, and some crazy socks. She drags her wagon everywhere and I think we've single handedly moved the vending machine company into a new tax bracket (we love yummy Ms). As we wait for her counts to rise, she looks great, and has so much energy the nurses and docs all seem a bit incredulous that she had to be here at all. The talk around the floor today is that she is "outta here" either tonight or first thing tomorrow morning.

Tony and I (mostly Tony) were able to swing keeping Bruno with us by alternating nights and leaning on our good friends Auntie Jen and Uncle Timmy. We all celebrated Mother's Day together (that was great) and are looking forward to a few good weeks at home. So all in all no complaints.

--- Funny Bruno ---
[per Auntie Jen] While teaching his friend Jessica how to make wishes on dandelions, Bruno's wish was for Gianni to not be sick anymore.

Green Tee

LP is negative... = )

Saturday was Gianni's 4th day of chemo (cycle 6) and the NBTF walk ("Angel Adventure"). Tony and I divided and ultimately conquered - Bruno and I went to the walk and Gianni and Daddy went to the LPCH day hospital.

I was so very proud of Bruno, he completed the 5K (just over 3 miles) walk, even after an hour of milling the fairgrounds (including a bouncy house and balloon contortions clown), with no complaints.

There were literally thousands of people in attendance - it was so uplifing to see. You - my family, friends, and colleagues (and your family, friends, and colleagues) are AMAZING. We raised nearly $5,000, and needless to say I was blown away by your generosity and support. My initial goal was $500 - powers of 10 are unspeakably grand.

Thank you.

The NBTF provided a silent auction, raffle, afore mentioned bouncy house and clown, food, and a few local celebrity speakers. It was a carnival-like atmosphere dominated by people, well, like us. My intentions were to first, raise money and awareness for childhood brain tumors, and second, go to the walk and meet people with the same interests and shared experiences. Once I got there however, goal two evaporated - I was semi-dumb struck and unable to strike up a conversation with one single person. Those of you who know me well are scratching your heads . . . "Karen . . . unable to strike up a conversation with a complete stranger...? Nonsense." It was everything I could do to keep an eye on Bruno and not crumble onto a bench and sob. Unexplainable (other than some maniacal twist of fate that has my “28-day woman-cycle” corresponding exactly to Gianni’s 28-day treatment cycle - when things heat up around our house . . . they really heat up). I guess I still have a bit of the "deer caught in the headlights" syndrome - even though we are "doing it" I still don't see how people "do it". Everyone seemed so positive, hopeful, strong, and full of grace. Even though our family is running a gauntlet - I know how lucky we've been. Regardless, I am happy we went, proud of the money we raised, and will definitely support this event in the future.

All participants were given white or yellow t-shirts with the NTBF logo; Survivors wore green t-shirts. So many people affected by brain tumors . . . so few green shirts. We are going to get one of those green shirts.

Enough about me. Gianni is doing well, she looks a bit tired and pale (a transfusion is surely imminent) but is holding her own. I am trying to brace our family for, well you know (“eff n enn”). The Carboplatin is a very close cousin of Cisplatin, and that drug really knocks her around a bit. The steroids are kicking in so her normally sweet and compliant nature (I laugh to myself as I type that) is masked a wee bit. She wants all kinds of weird stuff . . . and boy does she want it NOW!!!!! Bruno is incredibly sweet to her and has been exceptionally careful about his germs.

We went grocery shopping today to provide for a steroid-quenching smorgasbord lunch. We had green beans (must be cold and from a can), drinking yogurt (must be pink; Bruno must drink purple – not pink), macaroni and cheese (little bowl noodles – not tubes), raisins, catchup, crackers (square, not round), and milk (in the blue cup – not pink).

Whose running this show anyway?!?

Smorgasbord

Cycle 6, Day 2

Just a quick update: The lumbar puncture is complete (still awaiting results) and she did pretty well coming out of anesthesia. For dinner she insisted on saltines, catchup, croutons, and Parmesan cheese (from the can). Go figure.

The whole family carpooled today to take Bruno to school and then Gianni to the hospital - her and dad are now comfortably (as can be) installed at PEC. She walked right up to the 2nd floor like she owned the place, jumped up on the bed and started telling her favorite nurse, Ryan, exactly how to do his job. She is amazing, and even after all this, continues to run the show.