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.

Super Trooper

Super Trooper

Well, this time no news is not great news, but because I've been such a poor blogger the circle has completed and we are back in the business of being good!

Last Friday evening Gianni popped up with a fever and emesis (thats the "official" word for puke). We had just been told that she was neutrapenic so this meant an automatic admission and at least a 72 hour stay at the hospital. . . we had just got home from the hospital(!) (big bummer). We were caught a bit off guard so I bundled her up and drove to the emergency room while Tony corralled Bruno through dinner, bath, and bed.

Gianni and I went through the ER boogie - no fun, lots of pokes, prods, "pictures" (i.e. x-rays) - and settled down to wait for our room. Tony ran interference and called all the Packard decision makers to ensure that his girls were properly attended to.

We finally got a room around 2 am and settled in for our unplanned admission. We were "in" until the following Tuesday. The good news was we had the room to ourselves for 2 of the 4 nights. I'm not superstitious or I'd think that I had jinxed us - but we have spent every official and some "unofficial" (e.g., St. Patrick's Day) at LPCH . . . lets hope that missing St. Patty's Day gives us a credit against Easter!

She never did spike another fever or develop and infection but the "emesis" was pretty regular and her counts were slow in coming back up; thats why they made us stay the extra day and a half. Over the course of her stay she received two transfusions, two Easter bunnies, two re-insertions of the NG tube, and her new best friend - Sponge "Frank" Square Pants. Sponge Frank is a little stuffed spongebob toy named for the attendant who wheeled us (together in the same teeny tiny bed) from the ER to 2N.

Tony and I took Gianni to clinic yesterday (Thurs) - she got her chemo bump and we got the good news that her counts were high enough to forgo the nightly shot (what a relief!).

The next milestones are her MRI (next Tuesday) and then Cycle 5 starts April 2nd. Her doctors are confident that she will be strong thru the standard 6 cycles and even hopeful that we'll be able to get her thru all 8. Depending on the results of her hearing test next week they may cut out even more of the chemo which would make cycle 5 a bit easier on her.

Now that we are home, she is running amok, and we are looking forward to a quiet weekend.

We appreciate all your thought s and prayers!

Cycle 4, Day 7

Funny Bunny

First things first, no news has definitely been good news. Gianni is doing great.

The lumbar puncture was last Wednesday; the procedure went as expected but the anesthesia was trouble again. She comes out very agitated and upset, we'll have to work on that a bit more. We spent Wednesday night at home, had a nice dinner, rested, and prepared for the big admit.

We arrived at PEC Thursday afternoon and got settled in right away. She had a little bump on Thursday night wrt to her NG tube; nothing "we" couldn't handle. Our oncologists reduced the dosage of another one of her chemo drugs, cisplatin - that's the drug that effects her hearing. We've been taking her to an audiologist to make sure we have a good baseline and now that the higher frequencies are being effected, they've decided to pull back a bit. That little break has made a huge difference in her spunkiness level, she is truly feeling like her old self (as old as a newly turned three old can be!). [Please, all KNOCK ON WOOD...!]

The PEC was great; quiet, attentive staff, and we were out of there by Saturday night. She's been through this enough times to now know what is coming and she asks to go 'home' almost as soon as we get there . . . she is referring to the cabin, not the B'bane house (talk about getting straight to her daddy's heart!). All in all she is THE trooper.

The nightly shot is back; a bit of a bummer for all, but another small price to pay. She is regaining her appetite, sense of humor, and zest for trouble.

G'Ma and G'Pa Walker came to dinner on Sunday [Tony prepared the celebratory BBQ feast]. Uncle David's happens to be "on the way" from Lincoln so Bruno gets a lift home and first dibs on the Easter baskets that weighed down the trunk of Grandpa's car. Too fun; and I even got an Easter Pumpkin Pie . . . yes, Easter (!) any excuse for G'Ma's pumpkin pie!

We took Gianni to clinic last Monday, just a quick in and out for bloodwork (which by the way, confirmed our confidence in her levels). We'll get back into the regular routine (Mon and Thursday clinics [chemo for the next 3 Thurs]) and hope we stay out of the hospital this cycle. The next big milestone is the post cycle 4 MRI.

Much appreciation to all of you, we are grateful for your thoughts, prayers, and wishes. They really matter to us and we gain strength from y'all (I can say that, being from KY).

Busy Week

Gianni has been a busy girl this week; we had a really great visit with Auntie Amanda and the weekend "off" was an unbelievable treat. The girls weekend was just as advertised, a lot of ice cream, catching up, shopping, some fine dining, and all around girl time. The boys came back a little early and made an amazing BBQ feast for us, Aunti Jen, Uncle Timmy, and Jes. Yum. Gianni has been playing hard, eating on her own a bit, and keeping her own. Tony took Bruno with him to work (i.e., Santa Cruz) on Monday so the boys have had their fun too.

Every day this week has been better than the last; it is so tempting to just keep her home.

Monday's clinic went well, Gianni's port had been acting up so the nurses put in a dose of TPA, an anticoagulant to help break down some of the build up that was blocking access. The TPA worked like a charm and she is ready for action. The first course of action was a RBC transfusion yesterday (Tuesday). When our oncologists called Tuesday morning to tell us that her hemoglobin was low and a transfusion was necessary I was in the midst of telling her to slow down, and stop running in the house! Hard to believe how resilient this little girl is!

The pet fish have not fared quite as well - I think I'll stick to gardening.

Today is the lumbar puncture - tomorrow is the admission for chemo at PEC. We are as ready as we can be and she will be going in the round very strong.

The pictures are of Bruno at work with daddy, and Gianni working out the finer mechanics of my cell phone. She already knows how to take pictures, text, and phone home - I should take lessons!

Cycle 3, Day 23 [clinic]

No news has been good news. Today was clinic and everything went just fine. Her numbers are good. She gets a bit stressed with the access and all so some minor bumps, but better than most.

Tony and I brought home two goldfish for the kids; bona fide "fishbowl" fish. Gonna be fun.

Auntie Jen and Jessica are treating Gianni and me to a show this weekend - Disney Princess Wishes, and its ON ICE! Gonna be fun!

We are scheduled for a Wednesday admit at Stanford for the lumbar puncture and then home. Thursday will be the official admit for the 4th cycle of chemo. We will be trying out the El Camino hospital again. Seems like we've had more days in than out this cycle so its hard to start planning for cycle 4. The good news, we have lots of fun distractions this weekend and she is feeling spunkier every day. We are eagerly awaiting Auntie Amanda and all the goodies planned for a girl's weekend (Tony and Bruno are being sent to the cabin).

Cycle 3, Day 20 . . . HOME!

Gianni getting coochie from Dad (honker laughing!)

We are home!!! Whew. . . no need to express the good news part of that statement. Gianni's counts started to rise on Friday and were high enough to get us out of that popsicle joint Saturday morning. She is doing well; a bit unsteady on her feet (that's a long time to be stuck in bed!), a little tired, and not interested in food of the constituted type but doing well. This is the part where the NG tube is a great addition to our little program. She is getting all the nutrition, hydration, and supplement she needs - no stress.

She has been home just over a day and we can see the improvement in her mood. More good news - no chemo again until 05 Mar; we have over a week to just coast. We are looking forward to a visit from Auntie Amanda (she's a doctor too, but "only" a PhD so she's okay!) and getting used to the new "feeding" routine. That part is actually not too bad, we've worked things out so she's only hooked up while she's sleeping. It just requires a bit of planning on our part.

Everyone has been so supportive and we really, really appreciated (and needed) it this round. Thank you, thank you, thank you!

Cycle 3, Day 17

Gianni's counts are finally on the rise! This is good news because once they start they go like gangbusters. She has been struggling with fevers and a little nausea so we may be here for a few more days . . . we are hopeful for a Sunday getaway. She's looking good and gaining weight. She may be a bit stir crazy but we've kept her busy with painting, beading, and SpongeBob basketball.

More to come (hopefully from home)!

Cycle 3, Day 14

She keeps on keeping on - progress is slow but most definitely sure. She is looking better and feeling stronger every day. Her electrolytes are stabilizing, she is gaining weight (nearly 0.2 kg/day, just less than 1/2 lb), and hopefully kicking the flu that landed us in the hospital in the first place. The exit criteria we are looking for include 1) no fevers, and 2) raising counts. The counts are still <0, but not to worry - when they start coming back they will come with a vengeance!

--Funny Bruno--
Patients/siblings have to be at least 5 years old to play video games in the Kid's Play Room @ LPCH.

Today when Bruno and I were rehashing the usual, "When will Gianni feel better?" routine . . .

Bruno: "Will Gianni feel better before my birthday (July)?"
Mom: "Almost, but not quite all the way; she will feel better after daddy's birthday (August)"
Bruno: "Great! That means when I turn 5 I can play video games in the playroom!"

Solitude: sweet absence of faces. - Kundera

Every child is an artist. The problem is how to remain an artist once we grow up. - Picasso

Another fortunately/unfortunately brewing here at LPCH: Unfortunately Gianni is not responding satisfactorily to the antibiotics which means she may have some sort of viral infection .. . Fortunately that means she gets her very own private room (so she can't infect any other kids). I can not tell you how much the stress level is reduced with the commiserate peace and quite. The flip side - she is in isolation, which means no play room, or day excursions to the cafeteria, or outside shenanigans. Big trade off, but one I think will benefit her in the long run. I know the solitude will benefit Tony.

She is doing better; Her electrolytes have finally been stabilized and we are now just waiting for the fever to go away and her counts to come back up. Those two exit criteria could take some time to be achieved - - - we are hopeful for mid/end of next week.

She is doing so well in fact that Tony felt comfortable enough to take a quick 24-hour (my bet is it will be less) turn around to the cabin - this is a GREAT thing. We will all be relieved to know that the cabin is still there, and he and Bruno can get the recharge that can only occur at > 3800 feet.

As I write this she is taking her nap and eating her lunch at the same time (another neat benefit of the NG tube). The picture is of her schooling a new friend on the finer art of colors.

Again I am grateful for all the good wishes, prayers, notes, gifts, and thoughts. We all feel your good energies and are truly thankful.

The good trend continues

So today is better than yesterday. She is becoming accustom to the NG and felt well enough this morning to play with mommy. We mostly colored and cut (her absolute favorite past time - always a good for a kid attached to soft rubber tubes filled with interesting content). We are still trying to get her electrolytes balanced; a little potassium here, a little phosphate there, some magnesium, rehydration, and a "snack". Before we know it she'll be in sync. Just a sign of how hard the chemo is on her, but the good news is that it is just as hard on the cancer and we are not helping that to rebound at all. After her nap I'll run her up to the kid's play room and then a romp with Bruno, she'll be all tuckered out for dad tonight.

Happy Birthday to Grandma Austin!

Cycle 3 . . . F&N

We’ve had a few ups and downs, yesterday was definitely a down. Now those days that just seemed average have a new baseline to compare against . . . and they can now join the ups! I guess that’s means we will get to have more ups than downs now.

Gianni came to LPCH for her regular Thursday clinic and before we knew it (+/- a few hours for all the administrative goodies) she had been admitted for a fever while neutrapenic. The rule of thumb is a minimum 72 hour stay, however in her case it will be 4 – 6 days before her counts are high enough to go home. Bummer.

But the worst/good news was her weight has dropped to the point where her doctors ordered an NG tube for administration of nutrition. For all of us laypeople, that’s a feeding tube or nasogastric tube. Big Bummer (sort of). The tube is inserted through her nose and feed to her stomach. The “worst” part of the good news is that putting it in was traumatic. I have a theory, however, that part of the trauma is intended just so that the recipient is incentivized to not remove it – because removing it would just entail putting the tube in again, and from the looks of things that is not a pleasant prospect. It took about 2 hours for her to become accustomed to the intrusion, but to be honest she has been mad at us ever since. She will have to keep the tube until she can maintain weight gain on her own; potentially several months. I still see her strong, fighting spirit as a good thing – she is drawing on something inside of her that is bigger than all of us and I think it will serve her well throughout this long marathon.

There are benefits that outweigh the dread I felt about putting in the NG. To me it seems that eating, and her choice of foods was one of the last bastions of control that she might have had; but because she has her father’s strength of character and complete welter weight fight in her, it seems that to get her healthy and fat again we’ve got to do things this way. So, now for the “good” part of the worst news: 1) Food will no longer be a battle, we can go back to our usual (healthier) diet and she can just eat for pleasure, whenever she feels like it (I can stop chasing her around the house with a spoon and every imaginable kid treat on the market); 2) No battle over meds. The twice a day test of wills has become increasingly difficult – now we just put the meds in a tube, she won’t even have to know they were administered.

They doctors and nurses are taking good care of her. She will get to visit with Bruno tomorrow. I think she is feeling better than yesterday and that is a good trend.

Cycle 3, Day 7 [St. Valentines Day]

Happy Valentines Day!

Today is the day Gianni goes to clinic to have her blood work and chemo bump (maybe a transfusion?). Her counts are dropping sooner than last week so we are anticipating a neutropenic weekend or so.

We are not stressing so much over bodily functions this time (well, at least as of last night!) . . . I won't go into details but we found a mix that seems to jump start the plumbing! She is doing well, and eating okay. Dad is taking very good care of her. Tony even let Bruno stay home a day or two so that she would have someone to fight with, I mean play with!

We appreciate you all so much! More to come.

Cycle 03, home again

Silly Gianni, working on her posture

Well, she did it! According to Tony's calculation we are at least half way through. G'Ma and G'Pa Walker came down from Lincoln on Saturday afternoon. They stopped off at Uncle David's on the way down and picked up Mr. B. We had a fun visit and the kids were happy to play together.

Tony brought Gianni home on Sunday afternoon, he cooked us a wonderful dinner, and we all just hung. I took her and Bruno to the park in the afternoon - after a brief vomit stop for poor Gianni we had a pretty good time. I'm sure all the parents crossing the street in front of us were mortified as I threw a handful of vomit out the window . . . but there's that new paradigm again!

She is a bit tired, but all in all seems to be doing well. We'll go to the clinic this Thursday for her next bump and the associated blood work. We anticipate that she will be neutrapenic and I'm sure a transfusion is in her near future. She is in good spirits and in competition for Bruno to be the ham of the house.

Thank you for all your good wishes and prayers!

Cycle 3, Day 2/3

Dinner of champions

Just a quick entry - Gianni is doing well. We did have to resort to the enema, but that works and I think she feels better. A bit of nausea and associated vomiting but all in all, good spirits and we are more than 1/2 way done with this admit. She had a great dinner tonight - I ran down to the cafeteria and got all her favorites; white rice with "bug juice" (soy sauce), french fries with catchup, and cheese. Top it off with apple juice and you've got the dinner of champions.

We had a fun visit with Dr. Nordt (Ms. Alison to Gianni) and are looking forward to spending time with G'Ma G'Pa Walker and Bruno tomorrow. She is sleeping well and misses her daddy on his night off.

More later!

MRI is CLEAR!!!!!

New definition of crazy hair day!

Yesterday was Gianni's day 1 of cycle 3 - we went in for her LP and MRI (both under anesthesia). She had quite a cold and a bit of a fever so Trish (our super oncologist) went to bat for us and convinced the anesthesiologist that she needed the procedures. She went thru with flying colors (her fever even went down during the procedures!) and came out of anesthesia better than ever before. Tony and I brought her home by 6:30 pm, had a big ole' pizza and switched between American Idol and the Sharks game. We are not big Shark's fans, but Uncle David took Bruno to the game so we were looking for for them in the penalty box!

Trish called us today with the blessed news that Gianni's MRI is totally clear!!! We still are dealing with all the chemo side effects . . . but if it is working, we are not complaining (much).

Today she was admitted to the satellite Lucille Packard Hospital in Mountain View (they've bought a wing of the El Camino Hospital). Very nice, quiet, private rooms, and super personal attention. We are really hoping this works out - if so we will finish out her treatments here. LPCH is also great - just seems a bit more hectic.

We've gotten so much love, support, and good wishes from everyone lately - I cannot thank you all enough. We feel everyone of y'alls good vibes. We are thinking of our family and friends back East - hoping you are all safe and sound in the midst of those crazy tornadoes.

The pictures are of Bruno and Gianni wearing the hats that my mom and Ms. Vicki made for them - Gianni's almost looks like hair!

I'll post more later in the week -

End of Cycle 2

Happy Ground hog Day! Well its been a while since I've updated; however, no news is mostly good news so I guess this is okay.

We had a bit of a scare (and an overnight admission) a week ago Thursday, but all is well now. Gianni was still holding on to her pee (again who knew!!!!), and our oncologist was justifiably concerned. She had us admitted Thursday night to monitor Gianni and find the root cause of the pee issue. An MRI was scheduled for the following morning (to rule out the worst case possibilities) and Gianni was supposed to get a catheter to help her bladder "relax". At the last possible moment before the procedure to put in the catheter, Gianni makes a big diaper! Tony and I immediately went to bat for her to not have to get the catheter (an uncomfortable, and I am sure degrading procedure) until the following day while under anesthesia for the MRI. Doctor's agreed. Once the dam was broken, Gianni had no problems peeing and the crisis was averted; no catheter - no MRI. We still don't know what caused the delay, but most likely an infection of some sort. Regardless, all is good now.

Once we all got home together again, we promptly contracted the ICK; I don't know where this cold came from but it's been a doozy! We called today a success because everyone got out of bed for breakfast!

We've got a relaxing weekend planned to start getting us geared up for cycle 3. Georgia's birthday party for the kids and Super Bowl shenanigans for daddy. Gianni's doing really well, her ole' trouble making personality starts to shine the further she gets from the hospital.

There is a diagnostic MRI planned (she gets one after every even month of treatment) with the beginning of cycle 3. We obviously don't expect to find anything, but can't help holding our breath a bit. We will go in Wednesday for the MRI and LP, come home that night late and get ready for the admission for Cycle 3 on Thursday. Last cycle was better that the first, we can hope this one goes even easier than the last.

Bruno's been such a trooper, he gives Gianni just the right amount of brotherly love and torture - of course shes not shy about the torture part!