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.