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.

Gearing up for Cycle 6

Looks like we won't get off totally scott free this cycle - Our NO called today to let us know that Gianni will be getting a replacement drug for the Cisplatin we dropped last cycle. The new drug is called Carboplatin and is in the same family but has less effect on her hearing. Her hearing test results show that she is holding pretty steady with just a little additional loss in the higher frequencies than last month - and mostly just the right ear. The addition of the new drug is a stark reminder of how thin the line is that we are balancing; she needs enough "medicine" to obliterate the cancer but not so much that she looses significant quality of life. We can not afford to back off. It is an insane way to think, an impossible trade. It is a tough choice to make, especially since she is feeling so good - I am grateful for the experience and judgment of Dr. Fisher, Trish, and all the others who have made it their life's work to make these calls. The addition of the Carboplatin will not significantly affect our schedule, so we are still hoping for the one night stay (home on Friday) with a short trip to the day hospital Saturday.

Because she will be under anesthesia tomorrow she's required to be NPO (nil per os, nothing by mouth or NG I guess) after midnight tonight so I am just waiting to turn off her pump before going to bed. We have an early day tomorrow. Her LP is the 1st procedure of the day at 7:30 am. I like that schedule the best - we don't have to withhold food and water from her all day and when you are first there's rarely any waiting. I'll bundle her up around 5:15 a.m. to head to LPCH and before we know it Tony will be chauffeuring her back home in time for lunch.

Gearing up for cycle six . . . !

Space Crickets

Who has the bigger grin...?

As time marches on we’ve really gotten ourselves into some form of a routine. However, one great break in the routine was a long anticipated, whole family trip to the cabin! When under duress, Gianni frequently asks to go “home”, we’ll say, “we are home”, or “yes, we know we are on our way home”. And she’ll reply, “No, not the Brisbane house, the cabin!” What a smart cookie! She knows that she’s not going to run into anyone who can poke her up there! I took a vacation day on Friday and the whole family drove up together in the Jeep.

We played baseball, pirates, soccer, checkers, tea party, toolbox, and dollhouse; essentially just stayed outside for every daylight hour. We watched movies, roasted marshmallows in the fire pit, hiked, 4-wheeled, and blew bubbles. We ate wonderful meals prepared on the grill by Tony, big breakfasts that included sugar cereals (put that in for you mom), and homemade brownies from the box.

On Sunday, after we got back “home” to the Brisbane house, my Uncle Ray and Aunt Liz up from San Diego came by for a short visit, so we had a very full weekend!

We slept till 7:30 am on Monday.

The last two weeks have been a regular hodge podge of ups and downs but Gianni has been up and really full of energy. The weekend before last, while the boys were preparing the cabin for our upcoming visit, Gianni and I drove down to Santa Cruz under the guise of buying her some high top tennis shoes. Old School Shoes sells toddler size, high-top Converse, and our Neuro Oncologist, Trish had suggested the high tops to help with some weakness she is experiencing in her ankles as a side effect of the chemo (that’s my story and I’m sticking to it). Trish warned us of this effect (peripheral neuropathy) - it may last for at least as long as therapy is continued, so I read this as a good excuse to buy cute shoes (plus now she has a pair “just like her daddy”). We took Highway 1 and the drive was gorgeous, we stopped a few times along the way to enjoy a random beach here and there, we walked up and down the main drag in Santa Cruz, and had an outdoor lunch on the boardwalk – it was a special trip.

We also managed a "family night" with Auntie Jen and Uncle Timmy; too much pizza, some wine, and ruckus play for the kids (oh and Bruno, Gianni, and Jess had fun too!).

We are preparing ourselves for round six; since the hearing loss drug has been axed we will stay with the same program as round five –

- Wednesday lumbar puncture (day 1: lyposomal cytarabine and diagnostics)

- Thursday overnight admit to PEC (day 2-3: main course of chemo)

- Saturday morning day hospital (day 4: remaining chemo)

This regime is much easier to handle than the earlier full week admit, and last month was the best yet, the first round with no F&N admission… so we are optimistic. However, it still sucks, especially since she has been feeling so well… it is hard bringing her back for the chemo round.

Saturday is also the Brain Tumor Walk and Angel Adventure for the National Brain Tumor Foundation. We have raised nearly $3,400 to support brain tumor research and patient services at the National Brain Tumor Foundation. I am overwhelmed with the support of our friends, family, and just those that have been touched by Gianni.

Thank you.

Bruno and I will tackle the 5K walk as “Team PNET Beater” while Tony and the real PNET Beater are at the day hospital. In addition to supporting a truly meaningful cause, I am so looking forward to meeting other families and patients whose lives have been touched by brain tumors.

Funny Gianni:
One of the tests for her hearing (the listening game) is described as listening to “space crickets”. When describing this game to Trish, Gianni says,

“They took out my brain, so now I can listen for space crickets.”

What do you mean, "Wait till they're cooked",
I thought brownies were raw!

Gianni at clinic - her own version
of "high-tops" (pre-Converse).

Cycle 5, Update

Hmmm, does this t-shirt make me look
like I could ditch the NG tube?

Ready for action

Has it really been over a week since I updated?!?!?! Bad blogger!

We’ve had a blessedly uneventful week. Gianni has been her joyful self. Daddy even looks a bit harried at the end of the day, she is running him ragged.

Our first Monday clinic post-admit was uneventful and Tony took her solo on Thursday for her blood draw and chemo bump - - - whoops “we” forgot about the chemo bump and had her de-accessed before seeing Trish for the chemo. No worries, I had to take her to the day hospital on Friday for a RBC transfusion anyway, she was able to catch up with the chemo then.

Tony felt good enough about her well being (even on a chemo week) to hike himself and Bruno up to the cabin this weekend. This meant another girls weekend for Gianni and me – Saturday we decided to hit the zoo and had a great time. With all the amazing and wonderful animals at the zoo, I think her favorites were the turtles and the turkeys. She had a bit of emesis and some NG issues on Sunday so we just laid low until the boys arrived home Sunday afternoon. Sunday night we crashed Auntie Jen and Uncle Timmy’s for some quality food and play time with Jessica.

Tony and Gianni made it to yesterday’s clinic solo again; also uneventful. Trish called Monday afternoon and told me I’d get a gold star if I could guess Gianni’s “numbers” – I don’t know whether to be totally proud or completely depressed, I hit every number on the button. So the upshot is that her counts are where we expected them to be – and no more s-h-o-t this cycle! We removed the “arm band-aid” (sub-Q catheter) after dinner and all did a little family jig to celebrate “no more owies” for Gianni. Actually the sub-Q band-aid worked pretty well, I’m not sure Gianni gets any relief from shot anxiety but it sure helps me!

Funny Bruno: I brought Gianni with me to pick up Bruno from school the other day. There was a new parent (had not yet met Gianni) who could not take their eyes off of Gianni’s bald little head and finally asked her what had happened. Bruno quickly interjected and said, “Gianni had to shave her head, she lost a bet.”

Last weekend at around 2 am Sunday morning I’m watching TV and a commercial for the upcoming “Brain Tumor Walk and Angel Adventure® - A Walk and Community Day to support the brain tumor cause” in San Francisco grabs my attention (What . . . are you talking to me?!?). I felt like someone had just walked into our home and slapped me upside the head – of course I was going to participate! Now that our family is putting one foot in front of the other again, it is time to put that forward motion to work. I am participating in this walk to support the fundraising efforts for the National Brain Tumor Foundation and to help make a difference in the fight against brain tumors (and because I have so much free time, I’d just go crazy sitting at home on a Saturday afternoon with nothing else to do!). If you’d like to learn more, just follow this link http://www.firstgiving.com/giannigheno, or the link at the top right hand corner of this page.

Bless you all for your thoughts, prayers, wishes, and hospital goodies (especially puppet theater, homemade cards, and jewelry – you know who you are!). We are filled with gratitude.

Cycle 5, Day 5

One of G'Pa's girls, out on the town.

We're baaaack . . . home that is! Gianni did just great - Tony brought her to PEC on Thursday around lunchtime and we were out of there by Friday afternoon. Gianni and I hiked back to LPCH Saturday afternoon, stayed for a couple of hours and had dinner at home.

She's doing well enough that Tony and Bruno were able to go up to the cabin this weekend to take care of some Mountain business. G'Ma and G'Pa still came to visit Gianni and me today (sans Bruno of course). We had big fun - they brought the kids a giant bag of Spring/Summer clothes and of course the obligatory Pumpkin Pie! We all had a nice lunch out (no BBQ - I don't have 1/10th of Tony's culinary skills and the in-laws are wise enough not to test me!), and a quiet visit over pie at home.

Gianni and I hit the B'bane hills for an afternoon hike/stroll and she is now in deep hibernation.

We're off for labs tomorrow; we will be bracing ourselves for the inevitable neutropenia and associated perils (eff N en.... won't even type the initials for fear of retribution).

She looks tired and we have to stay on top of her anti-nausea meds but she has been into all kinds of trouble, I can tell she feels better than she has in a while. The picture is of her at lunch today wearing the some of her new duds, including the beautiful hat and matching purse. The socks are from St. Patrick's Day . . . I have to wash them at night and sneak them back on her before she wakes up, she loves them so. In the picture she looks exactly like my Grandma Austin, and in real life she was as cute as a button.

Her term of endearment: "Mommy/Daddy, me love you."

Cycle 5, Day 1

Bruno and the girls

Gianni's home and resting from the LP; we had to wait a bit longer than expected, which always stresses her (I should say US) and she had another rough anesthesia exit but other than that she's doing well. The steroid she takes to alleviate the irritation in her spine (from the LP) gives her really interesting mood swings so we have MAJOR battles over the most bizzare details - - that is until I remember that when you pair steroids with a 3 year old your gonna get a wee bit of irrational behavior! She is still full of spunk, causing all kinds of trouble for daddy and Bruno. We stayed with day 1 tradition and ordered a big, fat, greasy pizza for dinner. Bruno ate three pieces and Gianni ate two (another interesting side effect from the steroid is hunger ; )).

Some more good news - Because she is receiving less chemo this round she only has to stay in the hospital one night (Thursday) and we get to come home a day early! We have to go back to the Day Hospital at LPCH on Saturday to get one more dose of chemo but that should only take a couple hours or so.

Even more good news - The nursing staff at PEC found a subcutaneous catheter, normally used for diabetics who have to get daily subQ shots, that they think might work for Gianni's daily G-CSF shot. It will look essentially like a bandaid and if it works, she will only have to get two pokes (that we don't have to give her) and administering the nightly s-h-o-t at home should be much easier for her (and us!).

Last night while reading bedtime stories (the original Horton the Elephant hatched an egg) I must have had a worried look on my face because Gianni stops the story, looks me straight in the eye and says, "Mommy, you need to make the happy face . . . like this..." (as she proceeds to give me a sweet little smile). Needless to say, I made the happy face.

"I meant what I said
And I said what I meant. . . .
An elephant's faithful
One hundred per cent!"
- Horton the Elephant

That's it for now.

[The picture is from Easter, out of time sequence - but I liked it]

Gearing Up for Cycle 5

I can hear you, I'm just not listening!

Today is day one of Gianni's 5th cycle, so we are getting prepared for our (now) regular scheduled chemo boogy. The lumbar puncture is this afternoon; we'll come home tonight then off to PEC for her admit on Thursday morning. Bruno will visit with Uncle David and Auntie Patricia for a few days before G'Ma and G'Pa Walker come to collect him on Sunday. Barring any complications, we'll all be home for a big BBQ on Sunday afternoon.

We are monitoring Gianni's hearing on a monthly basis because one of the chemotherapy drugs (cisplatin) has hearing loss side effects. Her audiology tests show that her ability to hear the higher pitches is consistently dropping - the right ear is worse than the left. Trish (our super oncologist) is trying to avoid any severe hearing damage and has decided to drop the offending drug for this round to see how she does. Now this is the same offending drug that they halved in cycle 4 and we noticed a significant improvement in Gianni's energy level and overall well being this month (even with the F&N admit) so we are hopeful for a strong cycle.

The audiology test (listening game) has been a "fun" part of Gianni's treatment in that there are no owies and Dr. Davis conducts the test more like a game than a procedure. Gianni is set up in a sound proof room with a set of (huge!) ear phones and a pile of blocks; even though the sounds are coming from the earphones, Dr. Davis has told Gianni to place the block next to her ear and when she hears the sound she is to put the block into its “spot” (a board with different sized shapes and holes). Funny Gianni is entirely neurotic – all the colors and sizes have to be organized just right; she’ll take an extra 2 or 3 minutes moving things around after she’s “heard” the block just so that all the greens are together or all the blocks go from shortest to tallest in the same row. The most recent trip, Tony and I were able to take her together – when we got there she decided she didn’t want one of us to sit with her in the little room, she wanted to do it all by herself – big girl style . . .

April Fools was fun, I got the kids (and my mom) with the ole’, “It snowed last night, look out the window!”(only funny because it rarely, if ever snows in the Bay Area). Bruno got Gianni, and a few of the dad’s doing drop off at his school with the old stand by (spoken to someone wearing either no shoes or slip on shoes), “Hey your shoes are untied….”

MRI is CLEAR CLEAR CLEAR!!!

Gianni & Jessica tag team the Easter Bunny

So the BIG NEWS is that the MRI came back clean!

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!

Saturday @ the beach

More water for my sandcastles - - chop chop mom!

Last weekend was big fun. This is a picture of her just hanging out at the beach while we waited for Bruno and Daddy to come home from the cabin.