Gianni Gheno

DX + 2 years!

2009-11-16T22:27:00.000-08:00

Here we are, another day (~730.484 days, but who's counting really) and well... here we are. Although our lives have been changed in ways we could never have imagined, we have enjoyed every minute of everyday.

According to Gian's Physical Therapist, Ms. Lisa, "Giovanna is able to do the following: hang from a trapeze for 5 seconds, climb up and down a wall ladder without assistance, pump her legs when seated on a playground swing, play hopscotch, jump into the ball pit. ... Despite her gain, Giovanna continues to demonstrate the following concerns: decreased strength, decreased balance and stability, decreased coordination, delays in her gross motor skills (although she is catching up)." Out of 10 stated physical therapy goals, she has achieved 5, partially achieved 4, and achieved 1 more (although inconsistently). Pretty good. In fact, she does tend to lag a bit behind her peers, but does not seem to notice or even care at this point... aah to be a kindergartner again.

Gianni with a few of her "peers" at a friends
B'day party (cheer up Mr. B!)

Gian whooping it up at the "Iron Door Saloon"
(what kind of parents are we?!?!?!?)

Singing "Twinkle, Twinkle Little Star"
in front of 100s of folks at a friends wedding.

Halloween...Hanna Montana, Kitty, and

the Cat that swallowed the mouse...

After...

Mr. B at the Niners vs. Bears game... go niners!!!!

Thank you all for your prayers, good thoughts... good juju, we are so grateful. We continue on in surveillance mode - MRIs every 3 months for the foreseeable future, appreciation for the small and big things.

Kindergarten and various asundry fun...

2009-10-25T15:30:00.000-07:00

School is going really well, she's formed a little posse to run with, Bruno keeps a close eye on her, and "melt-downs" are becoming fewer and farther between (although she got a standing ovation from her classmates a few weeks ago for going one whole week with no incidents... yikes!). She is behind a bit in the academics part - too early too tell if this is due to her age (maturity) or some effect from the events of the last two years - time will tell. Every day she progresses - she has become a complete chatterbox and gets into all the appropriate "trouble" - see Exhibit 1:

Exhibit 1: Trouble...

For now she is holding her own and enjoying every minute.

First in line for ice cream at this years NeuroOnc picnic

and telling Ms. Rita what for...

Gianni and Daddy

Scaaaaary!

Rolly Polly Pumpkin Heads

"Relatively" little scare
Breaking with my newly acquired and lax tradition of only updating with MRIs ... well not exactly: We had a scare earlier in the month, with Gianni showing up with a bit of a limp - to avoid the slow reveal, she is doing great. Tony and I took her straight to Dr. Fisher and Trish and they set up a spinal MRI for the next day to rule out the unspeakable (we usually only scan the brain, but if her limp were tumor induced it would have likely been due to a metastasis to the spine). Dr. Fish and Trish have deduced that she injured the nerves in her ankles (exasperated by a chemo late effect called neuropathy), something we can totally deal with...Of course it is no small wonder we did not see this earlier, her favorite activities are soccer, "racing" her friends (them running circles around her - she still loves it), and jumping - all things that would cause ankle pain in any average kid.

Energizer Bunny arrested, charged with battery.

September is Childhood Cancer Awareness Month

2009-09-19T07:41:00.000-07:00

Here are some things you can do this month (and ALL YEAR ROUND, for the most part!) to support Childhood Cancer Awareness. None of these things involves any financial burden of any kind (except for eating at Chili's ... but hey, ya gotta eat right??)

Tell everyone you know (and even those you don't know) how you, or someone you love, has been touched by childhood cancer.
Donate blood: givelife.org
Dine at Chili’s on September 28, 2009, when they will donate 100% of profits from restaurant sales to St. Jude Children’s Research Hospital: createapepper.com
WEAR GOLD FOR THE KIDS: cafepress.com/teamunite
Register to become a bone marrow donor: http://marrow.org/
Offer to volunteer at a local childhood cancer center: not that I'm biased, but LPCH has a great, local cancer center
Join Team Unite to become part of a unified voice against childhood cancer: teamunite.net
Join People Against Childhood Cancer (PAC2) to learn of efforts being made around the country to find a cure, raise awareness, and lend support: curechildhoodcancer.ning.com
Let a family that's been touched by childhood cancer know you STILL CARE and haven't forgotten about their struggles.
Let a family of an angel know their child remains in your heart.
Sign the CURE CHILDHOOD CANCER petition (and ask your friends and family to sign, as well!): thepetitionsite.com/1/CureChildhoodCancer

11 of n: MRI is Clear!

2009-09-08T23:37:00.002-07:00

"The only way to keep your health is to eat what you don't want, drink what you don't like, and do what you'd rather not." - Mark Twain

Not sure how this applies to our Gian, she is eating whatever she wants (19.3 kg [nearly 43lbs]!), taking only one last supplement (Magonate), and definitely living her druthers.

MRI-Day this quarter was last Wednesday(09/02) - we pushed it back one week so that Gianni could enjoy her first week of Kindergarten…

We had the standard popsicles for breakfast – Bruno just loves MRI-day. She did great, possibly the easiest “going under” we’ve had to date – I even came out relatively unscathed (minus the obligatory breakdown on the big blue dot outside the Ford Surgery Center door). She came out of the anesthesia like a charm, Tony and I were soothed by the crooning of Gian's Canadian-born PACU nurse ("It's All Goood") and were at the local hamburger joint eating Atomic Burgers and milkshakes by 2:00PM.

Then we waited…. our NP has historically spoiled us rotten by getting back to us with the "good news" on the same day (even if she has to call us from home). Well, when we did not hear from her Wednesday afternoon (just too busy)… Wednesday evening (she’ll call on her way home) ... Wednesday night (should I call her at home … look her up on Zabba … call the police, she must be stranded on the side of the highway!) … Thursday morning (Ughhhh – the receptionist is noticeably annoyed with me). I know some parents don’t get results for days or even weeks . . . there are no words, you just cannot stop your brain from “going there”. We finally connected around 9:30 am Thursday (I am such a wimp) with the good news and a bit of bit of sadness – our NP being that busy means more BT kids.

I suppose a developing a better coping strategy for MRI-day would be a good idea; or rather just having a coping strategy. The current plan is no sleep for 2-weeks prior – work like a maniac to drive scary thoughts and loving, understanding family away, and drink lots of Vanilla Lattes. You can believe my family and colleagues are enamored with "the mood".

Kindergarten… yes Kindergarten! First day of school was fantastic - not only do we get the advantage of being veteran parents (Mr. B is a bonafide 1st grader, and has all the low down) but we get to be Kindergarten parents again.

What a great summer, we got in a full two weeks at the cabin - not to be outdone we also had a full blown FIRE at the cabin (details), swim lessons, summer camp, graduations (yes we now matriculate at every grade), some quality G'parent time (both KY and Lincoln),

…and our first "post" headache from Gianni. I can blog about it (the headache) now because we've had the aforementioned clear MRI; but her having “owie-head” was frightening. She came down with the “ick” a few weeks before the MRI. I called our NP, the on-call advice nurse, and got Gianni an appointment to see her General Practitioner the very next day. But then later that night something really wonderful happened… she got a very high fever (102F)! Fever = infection, so this was a good and reassuring symptom.

We are grateful for every minute of every day.

P.S. I get to be a soccer mom

Clear MRI, a Green Tee (although this year they were blue...), and Gravy

2009-05-28T21:03:00.001-07:00

CLEAR!
So, first things first - Gianni had an MRI last Monday and it came back "perfect". We are 9 months post-treatment, we are 18 months post-diagnosis, we are blessed beyond belief.

Shaka Bra!

This was the first procedure with no port; in the past she would be given medicine to put her out thru the port - now we don't have a port. The idea was to hold her in my lap while the anesthesiologist gently put the sleepy mask on Gianni, then she would calmly "fall asleep" (Gianni, not the anesthesiologist). We play acted this scenario for 30 minutes or so prior to the procedure with Child Life and cute medical dolls and scaled accoutrement. Well, true to her nature all those good intentions went right out the window - the scene was closer to a knock-down cage fighting championship than the evening story time I had envisioned. In the end the nurse consoled me by stating, "Well, the harder she cries, the faster she'll go under" (she went under pretty fast - I on the other hand, took a bit longer). I've already started strategizing for next time . . .

Blue Tee
Last year in the beginning of May, Bruno and I participated in the National Brain Tumor Foundation annual "Angel Adventure" 5K walk while Tony and Gianni spent those hours at the Stanford Day Hospital for one of many platelet transfusions. I am so very proud of our Gian - last year all I could think of was getting her a "Green Tee".

[ref: 2008 Green Tee]
"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."

Gianni got her tee - the survival tees were blue this year (and only in adult sizes) but none the less. Funny how last year that was all I could muster want for - now that seems so little, I want much, much more. The walk was fun, a lot easier than last year. My friend Alison and her family shared the day with us, we walked for Gianni, little Jessica, and too many others to list. The day was a bit rainy but the kids were all just chalk full of energy, and like hound dogs they probably walked 10K by the time we finally packed everything in to come home. Similar to last year there was a bouncy house (really entertaining in the rain), balloon masochist, pirates, music, face painting, and (of course) tightrope walking. Gianni wore her pink cowboy boots the entire day.

Hair Cut
Now that Gianni's hair has officially become longer than Bruno's (note tiny, yet perceptible pigtails), it was time for a hair cut...one that I'll add to the scrap book of firsts = )

Gravy
The rest of our time has been occupied with blessedly boring routine - school, work, boxing (for Bruno), physical therapy (for Gianni), homework, kindergarten prep (poor kid had to get 5 shots and she was literally STOMPPING mad), family dinners, and lots of cabin time.

Bruno and Gianni are all set for an exciting summer
- Trip to Kentucky for G'ma and G'pa Austin visit planned for next week (lots of chickens, and puppies, and sheep ... oh my)
- Swimming lessons and summer camps all around
- Baseball (perhaps we will entice G'ma and G'pa Walker ...?)

Next MRI is in August.

Thank you for checking in on our littlest one; we are greatful for all your thoughts, prayers, and good wishes.

2009-04-04T10:43:00.000-07:00

Since my last post (was it really as long ago as November...?) we have had:

An amazing, unforgettable Make-A-Wish trip to Disneyland (Dec 08);
Lots of Cabin time;

Another blessedly clear MRI (February 09); and
Gianni's port removed (March 09) ["Hey, where did my tubie go?"].

Some pretty big milestones and she continues to thrive. She attends physical therapy once a week, but her real therapy is play-time at preschool. Although her birthday (Dec 02) is the actual cut-off for enrollment in kindergarten at Brisbane Elementary ("must be 5 years old on or before Dec 02"), we have signed her up. Mostly on the recommendation of her preschool teachers and just watching her mixing it up with her peers. Having an older brother around (especially one as extraordinary as Bruno [a bit biased, I know]) has always pushed Gianni to be a bit more mature - she won't tolerate the concept that "he" might be able to do things that she can not. We also have a good friend who will be in this years group of kindergartners, it will be fun for the two of them to be together. For now, we will just wait and see....

"...pushing Gianni to be a bit more mature..."

The hair fairy has been working overtime, I have had more than one person comment to me, "Oh isn't that a cute style, it must be much easier keeping her hair short like that...". It's those small things that make me so very grateful and humbled by how lucky we are to have this time.

The kids and I have abandoned Tony to visit my parent's farm in Kentucky for a week. Sheep, lambs, horse, dog, chickens... and no kidding, my dad actually planned the incubation of a few dozen chicken eggs so that we would have baby chicks to coincide with our visit (and chicken salad to coincide with their July 4th picnic!). Too cute.

"Gianni, stop playing with your food." - Tony

Although I've not updated in a while, we are all so grateful for your good wishes and prayers.

Our path forward is called "surveillance" - that means no treatments, just MRIs every three months (for four years). The next one is scheduled for the last week in May. I will keep you posted!

MRI is Clear!

2008-11-20T16:15:00.000-08:00

Not sure why I've been slow on the updates, I guess I've been waiting for this one; her MRI yesterday came back clear. She looks perfect.

Our Super NP, Trish once again went through heroic hoops to get us this news before the weekend (she's not even in town)! This is the first post-treatment MRI . . . 3 whole months with no chemo, does this ever get easier?

It has been just over 1-year since her diagnosis (Nov 14th) and surgery (Nov 16th).

For most likely obvious reasons, this was a difficult milestone (made completely joyous by previously mentioned news!). Our thoughts, daily activities, and small moments are all punctuated with that niggly little feeling in the back of our minds. For now, and especially for this upcoming season of thanksgiving we will rest easy. I went to USCF last Monday to personally thank her neurosurgeon, Dr. Gupta again. I had not anticipated an emotional reunion (and for him I am sure it was not, afterall there are 100s of us and only one of him), but there I was, a puddle holding a bottle of wine and some hand-crafted (by G'pa Walker) wine stops, in the middle of the Neuro surgery waiting room. Wierd. I do remember last year asking him who carved the turkey at his house (he checked in on us on Thansgiving morning in the PICU), and thinking that was an incredibly funny joke...

We've had some great weekends at the cabin, quality time with family and friends - and to save 1,000 words:

Disney with G'ma and G'pa Austin in Oct

Halloween

Cabin Fun with the Trog's

Preparing for Thanksgiving, Gianni's Birthday, AND her "Make-A-Wish" trip to Disneyland (and all this before Christmas)! Kids are both doing great- Gianni started physical therapy this week (finally) and looks like she is in good shape. They will work with her to strengthen her ankles and better her balance but all-in-all she is just a bit behind on some minor milestones.

She's had only one clinic visit and that went well - one of the best accesses yet. Her Magnesium is still low so we've tacked that one supplement back on - but going from the multitude to one small dose usually hidden in a cup of root beer is no sweat.

We are so grateful for all of you everywhere sending her and us your good thoughts and prayers. Thank You.

Feels like fall and Fairy Wings

2008-10-30T05:04:00.000-07:00

We've been flirting with normalcy for several weeks now. She has had only one clinic visit in the last three weeks and does not have to go back until next Tuesday. She has had no meds (zero) for three whole days now. Where we used to spend hours a day preparing and administering everything from food to IV antibiotics we now read more stories, take longer baths, and spend way more time than we probably should at the dinner table.

Over the past year I remember fantasizing over what we would do with all the "free" time we'd have together as a family, "once this is all over". I am living with the realization that this is not a situation that just goes back to normal... but flirting with normal is way more than enough. She begins physical therapy next week - took a month to get the insurance straightened out enough so that the therapy won't bankrupt us (they always find a way to get you when you're down to midlin'); from what I remember of PT - it's not fun, however the place we found specializes in children and looks like a giant playgym. The staff are friendly and the kids there seemed to be having fun.

Grandma and Grandpa Austin treated the kids (and me!) to a fun-filled weekend at Disneyland earlier in the month and the two of them were unstoppable (Bruno and Gianni were full of vigor as well!). Big fun. We barely made it out of Tomorrow land ("To infinity and beyond!") and the definite highlights were getting to "meet" some favorite characters and late night fireworks.

We had "Breakfast with the Characters" on Sunday morning and as part of the experience a "cast member" takes a picture of the kids with Tinkerbell (the kids cup their hands for the picture taking and when you collect the photo, Tinkerbell has magically appeared on their palms). Gianni was so enchanted with the idea that Tinkerbell had actually landed in her hand that when she saw the real live Tink "fly" from the Matterhorn to the castle during that evenings firework show she put her hands together the way the photographer at breakfast had shown her and waited for Tink to land in her cupped hands. She waited like that for the entire show.

My grandma (the kids' GG) could use some good thoughts - she broke her foot last July has had to be cared for in a nursing home since. She's not feeling so well. Her birthday is on Monday - 93 years old!

Today we are gearing up for some Halloween fun. Gianni wants to be a "fairy princess"; with wings. This is no surprise, in fact it is the exact same thing she was last year. I even toyed with convincing her to wear the same costume with a few new embellishments but... Halloween is just this one time a year and living in the present makes it so easy to start everything fresh (plus, how cute). Bruno wants to be either Buzz Lightyear or the Grim Reaper... true testament to my little boy - growing up. Tonight we'll make edible eyeballs for his Kindergarten class. After Thanksgiving, Halloween is my favorite holiday.

She gets stronger everyday.

It will be 1-year since her diagnosis and surgery two weeks from Friday. Her 2nd post-treatment MRI is Nov 21.

PICNIC

2008-10-05T16:37:00.001-07:00

This has been a weekend of picnics. Yesterday Brisbane held its annual "Day in the Park"; a really fun set up in the main park with bouncy houses (yes plural), carnival games, hay rides, live music, tons of junk food AND the Soap Box Derby. I took the kids and a fun time was had by all. I got the biggest kick out of all the people (big and small) who know Bruno. In the few short weeks since he's started kindergarten the tables have turned - I've gone from being Karen to being "Bruno's Mom".

Today we went to the LPCH NeuroOncology Group's annual picnic. It is a fun-packed day; full of face painting, button making, funny hat decorating, balloon creatures, dog tricks, two pinatas, and really great food. All the invitees were patients (past and present) and neuro oncology team members. A really good time was had by all. I was not sure what to expect - it is a . . . club (for lack of a better word) I never expected to be a part of. . . There were families in all phases of treatment and it was a safe place to share experiences, catch up, and mingle with other kids and parents. It was also fun to see the people who have been taking such good care of us in a more relaxed setting. The kids are exhausted and looking forward to seeing Dad tonight.

We'll have a short week - driving to LA on Friday to hook up with G'ma and G'pa Austin (from Kentucky) for a weekend at Disney Land... woo hoo!

Even more hair, More cabin fun, More baseball, and oh...clinic

2008-10-01T03:22:00.000-07:00

Fans

Lots has happened in the past week... I know the title infers just more of the same, and true as that may be, it sure has been fun!

Last Wednesday was The Giant's Game; G'ma and G'pa Walker drove down from Lincoln so that we could all go to the game together. We had the entire experience with hot dogs (carrots and animal crackers for the kids... gotta sneak in those veggies), rootbeer, Margaritas (gotta sneak in those fruits), and of course cotton candy. We arrived early for a quick refreshment at the Acme Chop House and once we settled in, the kid's got to explore all that is AT&T stadium. We played in the "Giant" Coca Cola Superslides (more than 150 ft of slide!) and took batting practice in a miniature replica of the ballpark where they each got to hit balls from a real pitcher!

Cheers! (Note Bruno doing double hat duty)

Jake... or Elwood?

Nutritious AND Delicious

When it was all said and done, the Giants lost to the Rockies (6-15, yikes); we did get to see 5 or 6 pitchers and Bowker hit a homerun in the 6th, but our Giants have had a long season and I bet they were a bit pooped (I can relate). We definitely had more fun than they did.

We all got up (early) Saturday morning for a short and sweet run up to the cabin. Weather was gorgeous - we packed in lots of hiking, bike riding (Bruno's getting good on his 2-wheeler [no training wheels]), music, baseball, 4-wheeling, and my 5-cent popsicle pic.

Monday was clinic. The access of her port was the easiest one yet. Her numbers were pretty good, and I'll let the photos speak for themselves.

As always, we are bolstered by your prayers, good wishes, and warm thoughts. She is getting stronger everyday!

Clinic

2008-09-23T21:08:00.000-07:00

Clinic today was just fine. Gianni was a bit apprehensive this morning when I put the numbing cream on her "owie spot" -

G: "Is there going to be a poke today mommy?"
M: "Look me in the eye Gianni; Yes, there will be one poke today, only one and it will be a quick one - and then we can visit with Auntie Trish (our NP). No sleepy time today, just one poke."
G: "Okay, but can I bring my brand new spitty?"

We usually all put the numbing cream on - today she asked me to be sure to cover my very own owie spot (a small mole on my chest)... very sweet.

The access went as well as could be expected, the nurse we got was a 'regular' and she is pregnant, only after not seeing her for a whole month, she is really pregnant. Gianni asked her if she ate too much ice cream.

It was oddly good to see the regular clinic folks again (it has been 1 whole month!). The visit with Trish was great. Gianni's numbers all look good (17.8 kg!!!). We will be cutting her meds to 1x per day (Q day for those of us initiated) AND we will be stopping all her feeds effective tonight. We will go back next Monday for a weight check and a quick blood chemistry to see where she stands, if all goes well - we will remove the NG then. This is a milestone: We have been feeding Gianni every night since Feb 14th of this year using the NG and the pump. The clicking of the pump has become some sort of metronome for my sleep... and the beeping of the "I'm stuck" alarm an immediate wake-up call (sometime 2-3 times a night). I am really hopeful that her appetite will keep up and she can maintain her mass (keep your parts crossed!). She has some weakness and splaying in her ankles from the Vincristine - this is an expected side effect and with physical therapy and the right shoes (potentially braces for a short time - we'll see) should resolve itself.

After clinic we made a brief visit to our friend Emily who has been in 1N lock-down for F&N for the past week or so. It was great seeing her, Gianni reads her blog every night and was excited to be able to bring her a little "get well" gift. She was in one of the rooms where we have spent many a week with Gianni's F&N, weird, but good to see Emily doing so well.

Gianni and I went shopping after clinic to get the "right shoes" - and no shopping trip is complete without a rootbeer stop... big fun.

We had a great family night, wonderful dinner and the kids and I salvaged some old bananas by making banana bread - always good kitchen time.

More later, thank you for checking in.

Vote for Project Brain Child

2008-09-22T09:43:00.000-07:00

Project Brain Child is an initiative of the Pediatric Low Grade Glioma Association.

Members Project is a program sponsored by American Express where cardmembers submit innovative ideas for projects that make a difference. Cardmembers vote on the projects, and the winning 5 projects will receive up to $1.5 million in funding from American Express.

The Pediatric Low Grade Glioma Association (PLGA) submitted project idea is to conduct a feasibility study to create a National Pediatric Genomic Brain Tumor Registry. The information collected in this registry would allow scientific researchers and medical experts to target specific genetic abnormalities with existing drugs most effectively.

The registry will embody all brain tumor types, not just low grade gliomas.

Project Brain Child was selected from over 1190 other projects to be in the top 25. As of today, September 22, they are in 9th place.

They need to be in 5th place or better to receive an award. You can vote up until Sept. 29. The winning projects will be announced Oct. 14.

Any American Express cardholder may vote. No donation is required to vote. If you don't have an American Express card, you can still help by spreading the word to your friends.

Brain tumors kill more children every year than all other diseases combined. Please help this effort.

More information:

* Project BRAIN CHILD information from PLGA
* Project BRAIN CHILD information on American Express Members Project site
* How to promote Project BRAIN CHILD on your site

So please consider taking two minutes of your time to vote for this worthy project.

* Thank you Steven's mom for sharing this valuable opportunity.

Jes' B-Day

2008-09-21T16:01:00.000-07:00

More hair, cabin fun, and baseball

2008-09-19T06:15:00.000-07:00

It has been a fun week. Last weekend was another beautiful 48-hours at the cabin. The highlight had to be the "camp-out" at the firepit. I've never seen so many marshmallows consumed in one sitting (and that was just Bruno)! Nothing screams good ole fashion fun like fire + sharp metal skewers + sticky, gooey, molten marshmallows. They did us proud.

I sure hope this is enough marshmallow!

No Bruno, you hold the extremely sharp implement with the molten sugar
blobs on it THIS way... here let me show you...

Once back in the Bay area, we've made an attempt to maximize the after work/school hours with the kids by incorporating trips to the pharmacy with a trip to the ice cream store, and extra time at the park before dinner. In addition, my employer was kind enough to offer my entire team seats in a luxury box at the Oakland As game last Wednesday. That was fun - we brought our friend Jessica and all three kids had a blast. Much debauchery in the form of popcorn, hot dogs, and soda was had but the topper was the blue cotton candy (we left just moments after that escapade). We missed the very exciting 7 - 9th innings (As pulled out a victory) but everyone really had a great time.

Note: Bruno's Giants apparel... and don't worry Uncle Timmy, his intentions are pure!

Although the As game was fun, we Gheno's are Giant's fans to the core and are REALLY excited to be going to the Giants vs. Colorado game next Wednesday - courtesy of Mr. Kevin Frandsen. The Walker's are joining us and we plan to make quite an evening of it! No cabin for the kids and me this weekend, we will be whooping it up at Jes's 4th B-day.

Clinic is planned for next Tuesday - I'm hoping for great blood chemistry and enough weight gain to chuck the NG... I'll keep you posted.

For the past week or so, every night when I check in on Gianni,
I find her sleeping in this Minnie Mouse hat - cute.

Many thanks to all of you who keep checking in on and sending your good thoughts to our Gianni.

Hair Fairy

2008-09-13T04:35:00.001-07:00

Okay, so this has been some blogging hiatus ...! I will chalk it up to post-treatment bliss/stress. This Tuesday will be 3 weeks, 21 days since Gianni has been to clinic - no owies, no pokes, no nothing! The entire past 10 months is already cloaked in a surreal fog (what happened?!?!?). She still has the NG tube; we give her nightly feeds (but no regime of water) and meds 3 times a day... Although her meds consist only of a few supplements now (Potassium Chloride, K Phos, and Magnesium Gluconoate - most items that could be bought OTC). Her appetite is slowly but surely returning - once she starts to maintain her mass on her own we will be able to remove the NG.

Last day of chemo

The 'hair fairy' is working double time - every morning I swear she wakes up with a few more millimeters of fuzz. It is coming in blond so it is difficult to see, but it feels really soft! I read that hair grows about 1.25 cm (~1/2 in) a month - at that rate I'll be pulling her bangs out of her eyes again in no time!

We have been easing into some semblance of normality at the Gheno residence. We've made our weekly trips to the cabin - shorter for me and the kids now that Bruno is in "real" school - but complete family time. Gianni has had a few play dates at Miss Martha's, a great way to ease her back into "the rules". I even treated the kids to a movie last night, something we have not done since last October.

I've been dreading the call from the clinic to schedule her next labs, check-in with Trish, and the always looming MRI...BUT, since it kept popping up in my mind - I called them today ("Oh, good morning Mrs. Gheno, I was just about to call you"). Not a big deal its just that (even with all that has happened, and the ever present reminder of the NG) every once in a while - usually while I'm listening to the kids playing in the background while I'm occupied with an everyday task or chore - I think I forget or regress to a place where none of this ever happened. I don't come crashing back to reality or anything like that, it's just good to be living with a more even cadence.

Her labs will be on Tues, 23 Sep, she'll have another visit near the end of October and then her 2nd post-treatment MRI on 21 Nov.

The LPCH neuro-oncology service's annual picnic will be the 1st weekend in October - I'm looking forward to bringing the kids.

First trip back to G'Ma and G'Pa Walker's (we had 3 birthday parties!)

Daredevil

Batman

Just one nickel for every one of these pics...just one...!

MRI is Clear!

2008-09-02T11:59:00.000-07:00

Just a quick note for those of you who continue to send such positive wishes our little girl's way. Her 26 Aug MRI came back clear - she continues to fight the good fight!

Bruno's begun Kindergarten, and we've had a few great weekends at the cabin . . . I'll follow up soon with lots of pictures and "Funny Gianni".

All done...

2008-08-15T08:47:00.000-07:00

Tuesday (05 Aug) was the last chemo - 8 rounds... she did it! Our super NP (a.k.a. "Auntie" Trish) sat and visited with us during the administration, we took pictures, the staff gave Gianni balloons and a stuffed unicorn ("Uni-Corny"). I cried, Gianni did not.

I equate this round to the 9th month of pregnancy. You've hit the milestone, but you still have to do the time... So now we just have to finish out this round (clinic, blood chemistry, transfusions, etc.) with no major bumps.

The plan is to have one (Tuesday) clinic a week until August 26th. Aug 26 will be her post-treatment MRI; after that it's 1 clinic a month. The port has to be flushed a minimum of once a month, plus we'll be able to monitor her electrolytes and perhaps get her off some of the supplements. Once she has had 2 or 3 clear MRIs, we'll take the port out.

So... nerves and fear of the future not withstanding - we are moving forward!

We celebrated last weekend with a trip to G'ma and G'pa Walker's - lots of fun shenanigans (we had lots of catching up to do)!

Last Tuesday's labs yielded "adequate" numbers (RBCs, platelets, etc.) - not great but not low enough to transfuse. We are hoping that she will come up on her own. Her head is getting fuzzy, her appetite is slow but sure, and her energy remains high.

Cycle 8, Day 12

2008-08-01T20:35:00.001-07:00

Super Heros

Clinic and day hospital went well, however to quote Gianni, [as we walked in the house at the end of the day] "Whew, what a day! Sometimes I go to the hospital and it makes me sooooo sleepy!"

She's still neutrapenic (read: still needs nightly shot), she needed both RBCs and platelets (read: 6 hour day hospital visit), and for the cherry on top ... her gut infection (C-diff) is back (read: no big deal just more antibiotics and kind of a bummer). But all in all the day was fun. I love having the solid one-on-one time with her and knowing how close we are to the end of this treatment phase makes all the bureaucratic stuff seem just not as frustrating.

Brisbane has "Friday Music Night at the Park" so her and I swung by before we came home. I figured she's about as tanked up as she's gonna get and she had TONS of energy. I had to keep her away from the other kids but we enjoyed walking around the park and just watching all the neighbors "shake their booties!"

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

Cycle 8, Day 11

2008-07-31T21:00:00.000-07:00

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

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

Cycle 8, In it to win it

2008-07-26T23:54:00.000-07:00

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

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

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

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

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

Balloons AND streamers... its a REAL party now

SURPRISE!

Blueberry Birthday Pie

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

Wednesday night - shenanigans...

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

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

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

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

Gearing up for Cycle 8

2008-07-16T04:20:00.000-07:00

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

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

More party.... still no streamers!

2008-07-13T23:52:00.000-07:00

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

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

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

Bongos and brownies, but no streamers = no party!

Gianni's MJ tounge... pure concentration.

If I had a nickel for every popsicle picture!

We are home now, ready for action.

------------
Funny Gianni

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

Cycle 7, Closer to the end than the begining

2008-07-09T06:38:00.000-07:00

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

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

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

Glorious Independence Day!

2008-07-05T09:26:00.001-07:00

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

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

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

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

Cycle 7: More fusion...

2008-07-01T22:36:00.000-07:00

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

2008-06-28T05:21:00.000-07:00

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

2008-06-26T06:52:00.000-07:00

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

2008-06-23T22:10:00.000-07:00

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

2008-06-20T21:48:00.000-07:00

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 = )

2008-06-18T21:24:00.000-07:00

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!

2008-06-13T12:15:00.000-07:00

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

2008-06-09T00:45:00.000-07:00

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

2008-06-07T15:53:00.001-07:00

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....

2008-06-05T17:00:00.000-07:00

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

2008-05-28T22:05:00.000-07:00

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

2008-05-28T02:39:00.000-07:00

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

2008-05-23T05:20:00.000-07:00

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!

2008-05-20T02:27:00.000-07:00

F-U-N Time!

2008-05-19T09:19:00.000-07:00

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...

2008-05-17T17:27:00.000-07:00

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

2008-05-14T06:30:00.000-07:00

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!

2008-05-13T07:15:00.000-07:00

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

2008-05-04T15:12:00.000-07:00

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

2008-05-01T12:49:00.000-07:00

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

2008-04-29T23:28:00.000-07:00

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

2008-04-29T04:20:00.000-07:00

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

2008-04-15T17:47:00.000-07:00

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

2008-04-06T17:25:00.000-07:00

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

2008-04-03T03:35:00.000-07:00

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

2008-04-02T03:41:00.000-07:00

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!!!

2008-03-27T17:25:00.000-07:00

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

2008-03-27T15:34:00.000-07:00

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

2008-03-21T12:16:00.000-07:00

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

2008-03-12T00:09:00.000-07:00

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

2008-03-05T06:18:00.000-08:00

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]

2008-02-28T21:06:00.000-08:00

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!

2008-02-25T10:38:00.001-08:00

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

2008-02-22T13:10:00.001-08:00

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

2008-02-20T01:05:00.000-08:00

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

2008-02-17T14:56:00.000-08:00

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

2008-02-16T13:42:00.000-08:00

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

2008-02-15T21:57:00.000-08:00

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]

2008-02-14T05:35:00.000-08:00

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

2008-02-12T01:33:00.000-08:00

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

2008-02-08T22:24:00.000-08:00

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!!!!!

2008-02-07T17:58:00.000-08:00

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

2008-02-02T16:18:00.000-08:00

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!

Cycle 2, Days 15-16

2008-01-22T02:21:00.000-08:00

Gianni Gheno

Monday was a rainy, dreary day - good day for a movie . . . or say, a transfusion. . .whatever! Transfusion went well. It was our first trip to the day hospital and it was quiet, being MLK and all. Tony met Gianni and I there so that I could go to work after she was accessed. She seemed to perk up after the RBCs and was predictably a little irritated by the platelets. We got to go home around 5 PM.

Bruno had a fun day with Auntie Jen (got to see the Chipmunks Movie; A-L-V-I-N!!!!)

Tuesday morning we were planning on letting Gianni go to Miss Martha's, but I noticed a bit of blood in her morning diaper - not as alarming as it sounds, but it does warrant another trip to the hospital. The concerns include dehydration, reaction to the platelets, infection, or some myriad of combinations of the three. Because I had already packed for Miss Martha's, we were amply supplied and had everything we needed as we waited for the tests to be run. The big challenge was getting her to pee in a cup . . . oh my, the nurses will have to establish a plaque on the clinic bathroom for us - we stayed on that pot for 3 hours! The nurses were funny though, we had every old wives tale implemented in that 10x10 room . . . peppermint oil, tubs of warm water, running water, ice, juice, you name it! Eventually we had success and were able to go home. She was super dehydrated so the infusion of fluids was a good thing.

The good news (there always seems to be good news!) is that her counts are up which means we can now forgo the s-h-o-t until the next cycle (hallelujah!! - although, I've gotten so I can even administer the shot all by myself - who knew!?!)

Our main challenges now are to keep her feed, hydrated, and pooping; its funny how there is this big C-A-N-C-E-R to fight and all we obsess with are the most basic bodily functions.

The picture was taken during Christmas-time (I think it was while we were there for her F&N); a few 49er players, coaches, and their wives and significant others distributed "Build-A-Bears" that they had made to all the kids. Gianni picked a "Princess Bunny" (of course), and had a nice visit with one of the coaches wives and her baby boy.

===Funny Gianni===
Miss Martha has always called Gianni by her middle name, Bella. When Gianni spent some time with Miss Martha last week, she had to correct Miss Martha by saying, "Me not Bella, me Gianni Gheno!"

1st Access

2008-01-18T03:21:00.000-08:00

Dont' bother me, I'm sleeping.

Today's (well I guess yesterday's by now) clinic visit went well. The access was not as bad as I had anticipated, she did really well, very brave. To help her out, the doctors gave us a numbing cream to place on the area where the poke goes about 45 min to an hour beforehand. As with the previous port, stickers (i.e., implements of torture) are generally used to hold things in place. Removing these stickers ends up being the most traumatic part of the procedure. Our oncologist suggested using Glad Wrap "Press N' Seal" instead of a sticker to keep the numbing cream in the right spot for the duration. I bought the JUMBO sized box of "Press N' Seal" at Costco and Bruno, Tony, Gianni, and I played "stickers and lotion" for two days getting her prepared for the big day. I won't share all the fun body parts that can be stuck with Press N' Seal, but you can imagine the fun. Bruno wore his "sticker" to school (I did not even try to explain); Tony, Gianni, and I showed up at clinic all with matching stickers. And even though Tony and I tried the actual numbing cream to make sure it worked, the role playing stopped when the nurse pulled out the needle!

Her counts are low (as to be expected) and she is neutropenic, she will have to go in for transfusions (platelets and RBCs) by next Monday. The results of te LP were negative (that is VERY good). She is not responding so well to the drug they give us to stimulate her white blood cells (G-CSF, the s-h-o-t), but that has a bad news/good news element. The thinking is if she does not respond well (some kids don't), then why bother? Dr. Trish will take a look at how well she does this cycle and assess the usefulness during future cycles. Barring an F&N (please knock on wood as soon as you read this!), the next big milestones are:
- Clinic next Monday and Thursday
- Clinic the following Monday and Thursday
- Our 1st MRI since post-surgery

The picture is actually of us coming home last Saturday, but its so funny, I wanted to share. Note the cookie (untouched) in her right hand.

Love you all - thank you for keeping us in your thoughts and prayers!

Cycle 2, Day 9

2008-01-16T15:43:00.000-08:00

Chillin' with the work mommy brought home...(nice hair do!)

This last few days at home has been remarkably "normal". We've taken advantage of the main benefit of Gianni's new port and dumped that little booger right in the TUB. I can not express what a relief that is - her and Bruno have really missed that simple, nightly ritual. She seems to feel pretty good, she is tired but all in all keeping up with a relatively normal schedule. In fact, Gianni spent a few hours at her old stomping ground yesterday (Miss Martha's). She got to spend time playing with her buddies, picnicking outside, and brushing up on her old tricks. She really did well and it was a great homecoming with Miss Martha.

Tony and I are getting pretty good at the s-h-o-t-s, at least it feels a little less traumatic (for us - I'm sure Gianni would not agree!) and we are getting closer to finding a handle on the whole poop issue.

We go to clinic tomorrow which will be her 1st access to the new port - not looking forward to that. She will also get another "bump" of chemo, so this weekend will be pretty low key.

Thanks for all the good thoughts, prayers, and wishes!

Cycle 2, Day 7

2008-01-14T00:45:00.000-08:00

Super Gianni

Home again, home again, and boy does it feel good! This round seemed to go a bit smoother than the last; the doctor's cut down her chemo a bit and coming home with no tubies attached was a bonus. We are back to giving daily s-h-o-t-s but it seems a small price to pay for having her home longer. She did pretty good with the chemo, some nausea, a few headaches, and a bit of sleeplessness. We have a day or so of dealing with the mood swings and irritability that arises from the steroid she takes . . . but honestly, not much different from the mood swings and irritability that arises from her being three. All in all, she did just great.

We are trying to stay ahead of the constipation issue (who knew what a BIG deal pooping could be), so far so good (I won't gore you with the details!). Her appetite is good, although strange. We are back to salami, frozen waffles, "cold" macaroni and cheese, dried fruits, and MILK, MILK, MILK. I'm learning a few tricks for loading calories . . . ever tried mac n' cheese made with condensed milk...? Yummy = )

The docs also gave Gianni some relief on the "pokes" this week by allowing us to postpone her Monday blood draw until Thursday's clinic visit. Her new port requires a "poke" each time we access the port. Most pain is (allegedly) alleviated by using a numbing cream before hand, but I guarantee the first few times we have to "access" her will not be fun.

The big news this week (if her counts cooperate) will be some playtime with her mommy #2 (Miss Martha) and her ole' gang (Giancarlo, Clair, Baby Paul, and Elodie).

The picture of Gianni was taken on Saturday (last day of hospital stay). She is showing her Super Girl muscles.

====Funny Gianni===
This morning after pulling her shirt down to show me where her "old" port had been and the bump where her "new" port resides; "Mommy, I fell down and my Broviac fell off!"

Cycle 2, Day 1

2008-01-08T15:57:00.000-08:00

Gianni and mommy at the P-A-R-K

Today was a big day. Gianni's surgery was scheduled for 7:30 am this morning - good because she doesn't have to fast all day - bad because she and mommy had to get up at the crack of dawn to be in admissions by 6:00 am. She was a TROOPER! She slept during the car ride to Stanford, helped the nurses with her vitals, and even entertained mom with a little SpongeBob dance. Of course I had to be Patrick, what's up with that?!?!?

Gianni was taken to surgery promptly at 7:25 am; she got her new port and the first chemo dose of cycle 2. The first dose is administered into the spine (lumbar puncture, or LP) and therefore requires Gianni to be under anesthesia. She had had a pretty rough time coming out of anesthesia today but once she was able to calm down, all was well. Her new port looks good, we'll see how that transition occurs over the next few days. The diagnostic results of the LP will be available tomorrow or Thursday.

She ate about six packages of crackers (Saltines) and another six packages of "cookies" (graham crackers) in the car on the way home . . . what an adorable MESS. . . . at least it wasn't in bed! She had some cheese and two big bowls of ice cream once we got to the house. Lunch of champions.

We will be admitted tomorrow sometime and be at LPCH for 3 - 4 days.

Bruno is looking forward to being spoiled by Uncle David and Auntie Patricia.

We love you all, thanks for the good thoughts, prayers, and wishes.

Gearing up for Cycle 2

2008-01-06T13:54:00.000-08:00

Family Gheno

Our Nurse Practitioner warned us that Gianni's best days would be these days leading up to her second cycle, and boy was she right. Gianni seems to be feeling close to her old self. She is eating, sleeping, and getting into all kinds of trouble with her brother. We've had the opportunity to play with some of her friends and even try out her scooter.

The plan next week is to change out her Broviac port for a less bulky, internal Mediport. This will allow her to get back in the tub, lower her risk for infection, and eliminate the need for daily flushes. Because the mediport is internal it does mean she'll get a poke each time it is accessed. However, we use a numbing cream before each poke so she will not even feel it.

Because of the added procedure, our "regular" schedule is a bit upside down. We will go in for the procedure and 1st administration of chemo on Tuesday - we then get to come home and don't admit for the rest of the chemo until sometime on Wednesday. The good news is that if all goes well, we will be home on Saturday or Sunday.

The picture was taken at Elly's house on New Year's Day. The whole family got together to celebrate her 16th birthday.

More later!

No place like home III

2007-12-29T15:02:00.000-08:00

Bruno & Gianni: Ready to shred (Gianni's hand on her pink scooter)

Well this stay was not so much fun and we are oh so happy to be home! Gianni was feeling pretty crummy for the majority of the time and she has had it up to her eyeballs with people "touching her body"; and to top everything . . . all her hair came out! She looks cute, and does not seem to mind too much. Some fun was had: Santa Claus visited (she practically climbed to the top of my head to get away from him = )); we made a new friend (our roommate was a little girl Gianni's age); and Gianni (with a little help from daddy and mommy) became the new champion of 2-North wagon racing.

Gianni's numbers (white blood cells) spiked on Wednesday night (from 200 to 900 - this is very good). This meant we could go home on Thursday; and after she was given her scheduled dose of chemo, that is exactly what we did! Bruno was still with his big sis, so Tony, Gianni, and I just had a quiet evening at home. The first night home is usually a bit rough for her anyway. She's suffered a small amount of nausea and vomiting (from Thursday's chemo), but all in all she just seems to thrive at home.

Yesterday (Friday) Gianni and I made a few of those brownies we promised while we waited for Bruno to come home. She did most of the stirring, and a whole lot of clean 'em up of the spoon and bowl.

We are looking forward to a long string of days with no chemo, no s-h-o-t-s, and no F&N. She will start cycle two during the second week of January. Because she had such a hard time with the 1st round, her doctor's are considering lowering her next rounds dosage, or increasing her recovery time. Either way, we are hoping she has an easier go of things.

----
Funny Bruno:

"Mommy, Gianni's owie looks just like a rainbow on her head."

Merry Christmas!!

2007-12-25T18:31:00.000-08:00

Bruno and Gianni school G'Ma on Sticker Booking

Tuesday (just happens to be Christmas) at Stanford . . . we were disappointed at first, but I think all is well. Grandma and Grandpa Walker came to visit, Gianni and Bruno got lots of presents from Santa [ ;-) ], and we all spent the morning and afternoon together. Bruno and Gianni had wagon races thru the halls of 2 North (that's our floor), the whole gang of us had ice cream and cookies in the cafeteria, and we all sat around and talked around the T.V. (except this year it was Shrek the Third, not football). We missed big sis, but since we still have to have our official Christmas dinner "whenever" we'll add her to the melee then.

Gianni won't be able to go home until her "counts are up"; that means her white blood cells start coming back. Typically that takes a few days so we are dug in for 3 to 4 more nights here at LPCH. She seems to be feeling better everyday, she played hard today and enjoyed all the excitement of Christmas.

The doctor's have all told us to not be alarmed, this type of response is not abnormal - in fact depending on how she reacts it could happen every cycle or not ever again . . .

She is sleeping nicely now, all tuckered out from a Christmas we are all happy to have shared, no matter where we are.

Peace to you all this Christmas and always.

F & N . . . continued

2007-12-24T13:16:00.000-08:00

Gianni "cutting it up"

Well, coming up on our 48-hours and still no definitive answer to whether or not we get to go home. She has had a red blood cell and platelet transfusions, they both perked her up a bit. She still has the cough and intermittent headaches, we will just have to wait and see

She feels a bit better today and we've had some fun coloring and playing scissors (always fun for a three year old).

And just now. . . . Santa came by for a quick visit. I have not seen her move that fast (to me, not Santa) in a long time!

F&N

2007-12-23T00:32:00.000-08:00

Settled in for s SHORT winter's nap

To copy the concept of a favorite childhood book of mine . . . [Fortunately, by Remy Charlip]

Fortunately, our family is enjoying a timely Christmas break from both school and work.

Unfortunately Gianni presented with classical F & N (fever and neutropenia) on Friday night/Saturday morning. This means her immune system is at its weakest (i.e., white blood cells are abnormally low; well I guess not abnormal for someone undergoing chemotherapy) and cannot fight off infections. When this happens, even the slightest fever/infection is very serious. When she gets a fever while neutropenic it means an automatic 48-hour hospital stay.

Fortunately, she seems to be doing well, it is only a 48-hour hospital stay, and we have every expectation that we will be home together for Christmas.

Unfortunately, this means the last-minute Christmas shopping (read: any and all) is post-poned to Christmas Eve. . .

Fortunately, all of our friends and family are very understanding and will just love the brownies we will be making and wrapping on Monday night!

Fortunately, while in the hospital all the stressful home care tasks (i.e., shots, care of the Broviac) are done by the very caring and competent nursing staff (not me!)

Fortunately, we have the love, support, and prayers of all of our family and friends.

Unfortunately, I've broken from the model in the book (Fortunately/Unfortunately) but I guess that means we have a lot to be grateful for!
---
The picture is of Gianni on Sunday morning during a visit with Bruno.

Cycle 1, day 8

2007-12-21T21:17:00.000-08:00

Tony and I took Gianni on Thursday to get her next dose; only one drug this time, and out-patient. Its great to be able to go straight home, but the chemo is still no fun. She's been feeling a bit under the weather, but that is as expected. She is responding well to the chemo; "well" meaning the chemo is working so she is currently neutropenic (her white blood cell count is low and she is susceptible to everything).

We will be laying low this Holiday; lots of movies, table projects, and we time.

She continues to run the show.

No place like home II

2007-12-18T04:29:00.000-08:00

As promised, the folks at LPCH released us from the hospital late Sunday night (12/16). We picked up Bruno from Auntie Jen and Uncle Timmy's and had a late supper of Tony's homemade Chicken Noodle Soup. [Not exactly what the DOCTOR ordered (no fresh vegetables or big chunks of chicken on that list), he sent us home with a whole pharmacy, including a daily S-H-O-T (!)]

She seems to thrive at home, so we are determined to learn to do as much as we can w.r.t. her care so that we can limit the trips to Stanford. This means caring for her port, weekly dressing changes, blood draws, and daily shots. Who knew Tony and I possessed these capabilities?

She is scheduled for weekly clinic visits (some with chemo some without), and will start the whole 28-day cycle over again after the new year (including the initial 3-4 days in the hospital). We will repeat this cycle at least five more times, and hopefully (new paradigm again), seven.

She is sleeping well at night and offering the appropriate amount of resistance to the daily meds. Her appetite is not quite back, but Tony is working on that.

The GREAT news is: 2nd lumbar puncture came back negative (means no spreading to the spine).

We keep on keeping on, we appreciate all your thoughts, prayers, and good wishes.

She continues to run the show; her favorite meal seems to consist of "Princess Waffles", which translates to "frozen waffles". Is that even healthy?

Cycle 1, Day 3

2007-12-16T14:40:00.000-08:00

Gianni resting with her new sock monkey

Day 3 of Gianni's 1st cycle. We are being told that we may be able to go home today (Sunday). We were told what to expect, but nothing can prepare you for all the yucky side effects of chemo. She has been quite the trooper (so has Tony, but don't tell him I said so). She began throwing up a little on Thursday night, but we attribute that round to hospital food. She continued to get sick through Friday night (that round we can't blame on the food because she had not eaten - no appetite). The no appetite is no good for her but a boon for Bruno, we have now stocked the house with high calorie foods to entice Gianni - that means lots of ice cream, butter, cheese, milk . . . no more low-fat cooking in our house!

She has had fevers up and down, headaches, some constipation, and all the side effects that go with the pain medication . . . It is entirely miserable to watch her suffer, but she really does seem to be tolerating this as well as could be expected.

Her counts (blood counts) are going to drop as expected which means a blood transfusion is in her near future (probably as part of our weekly clinic visit Thursday).

Hopefully the next update will be from home.

She continues to run the show. When a nurse asked if she had any pets at home (we don't), Gianni responded with a resounding "YES!"; when asked what kind of pet, she says, "A Panda bear and baby, they live in the tree outside my room."

[referencing giant Panda from her Panda Bear classmates]

Love to all of you, thank you for the calls, cards, notes, and good wishes.

Day after day 1

2007-12-14T05:50:00.000-08:00

Spunky

Gianni started her treatment yesterday (12/13) at Stanford. She will be given several drugs over the first 3 days (at the hospital) and then regular installments over the next 3 weeks (at clinic). The course Dr. Fisher is recommending is 8 cycles (i.e., 8 months).

She seems to be doing well, from what we understand she will start feeling progressively worse . . . and then better before we start all over again.

The biggest nightmare yesterday turned out to be scheduling.
Tony and I are splitting the time between her and Bruno while she is in the hospital. He was with her last night. Gianni's 1st administration of the drug happens while she is under anesthesia; that procedure was from 12 pm - 1:30 pm. After she was out of recovery they send her and dad packing . . . Tony and Gianni did not have a bed until 8:00pm that night! Tony, however, is managing this so well, "No wrong decisions, just lessons so that we can do it better next time." He found the children's play room, some well deserved chocolate milk, and a T.V. with the almighty SpongeBob.

The picture is of Gianni's new hair cut; Tony and I took Gianni to see Elly's mom on Wednesday (11/12). Debbie did a wonderful job on Gianni's do! She looks really cute.

My thanks again to all of you family, friends, and friends of family, and friends of friends. We so enjoy your notes of good wishes, cards, and letters. We feel your support and I am continually surprised at how far our network seems to reach. We love you guys!

She continues to run the show, however, her tactics are turning from vinegar to honey. Tony says last night she was showing the nurses how to do it!

Charlie Brown Christmas

2007-12-10T14:58:00.000-08:00

Daddy & Gianni

Enjoyed a great weekend at home; Elly, Gianni, and I stayed at home while the boys volunteered to make a quick round trip to the cabin to get the family Christmas tree. Bruno picked it out and it is beautiful. No Charlie Brown Christmas this year (sort of!). While the boys were working hard, the girls enjoyed a night of pizza, cookies, ice cream, and entirely vacuous television (it was great).

After much deliberation, we have decided to get Gianni's treatments at Stanford's Lucile Packard Children's Hospital. Logistically it makes sense and the doctor's and staff are wonderful. We anticipate she will begin treatments later this week.

Gianni continues to run the show, she looks better everyday (picture of crazy hair day not withstanding)!

Good news

2007-12-07T16:22:00.000-08:00

Just got word from Dr. Banarjee UCSF; results of the lumbar puncture show no sign of tumor in Gianni's spine!

In and out

2007-12-07T06:32:00.000-08:00

This week has blown by us so fast! Just a quick update today.

Last Tuesday Gianni had her Broviac catheter placed - a big port placed in her chest to allow access for the chemotherapy drugs.

It was a long day, we arrived at 5:30 am, surgery at 7:30, a few other odds and ends and we were sent home ( = ) ) around 6:00 that evening.

The Broviac is an impressive piece of hardware, but she seems to be tolerating it okay. It is my job to now care for this contraption (back to the "new paradigm"). This is my greatest pleasure because if I can do the maintenance it means she can be at home instead of the hospital.

She also had a diagnostic lumbar puncture to verify that the cancer has not spread to her spine. We are still awaiting the results of this test.

Her treatment will most likely begin next week.

Bruno continues to support his little sister in the best way possible - - treating her exactly the way he always has. He keeps asking me, "How may days, I mean exactly, before Gianni gets better? Like 7, or 4, or 16?"

I like those choices!

Happy Birthday

2007-12-03T15:17:00.000-08:00

Gianni had a great birthday, I think a good time was had by all. We did up the princess theme - all her friends wore costumes but after all the talk, I could not get her into her princess dress.

We ate spaghetti, cake, cookies, and ice cream. The kids played, played, and played. It was a great, big, WONDERFUL mess.

Gianni's surgery to put in the central line and gather other diagnostic data (lumbar puncture etc.) is tomorrow at 6:30am. We are hoping to be discharged within a day (or two).

No place like home

2007-12-02T05:49:00.000-08:00

Bruno celebrating early + Gianni striking a pose

We got to come home! The doctor's at UCSF discharged Gianni late Thursday night for a few days at home; we go back to UCSF on Tuesday morning to have surgery to place the semi-permanent port that will be used to administer her treatment.

Tony and I met with the oncologists last Wednesday, I think he may have been a bit more shocked by the intensity of the prognosis and treatment than I was - we have a long road ahead. After the meeting, we talked with some friends and colleagues and have decided to seek another opinion regarding her treatment. We are resigned to the fact that chemotherapy is the appropriate course, we are just looking for another data point. We meet with Doctor Fisher of Lucile Packard Children's Hospital (Stanford University) this Thursday. This will delay Gianni's chemo for a few days, but both UCSF and Stanford have assured us that this does not introduce any risk.

Time at home has been indescribable; just the sounds of our full house are music. I even had to discipline Bruno and Gianni last night for "acting up" at bedtime. Brings tears of joy!

Today is Gianni's birthday, she is 3 years old. We celebrated last night with Grandma and Grandpa Walker and GPs Austin (via phone) - between you and me, Gianni is about the only one who can keep up with those rascals! We will have a low-key "Princess-Style" shindig with a few of her friends at the house tomorrow.

Her coordination and post-surgery neurological "quirks" continue to improve and are most likely only noticeable to me and Tony. I can barely keep up with her (per usual).

I continue to be touched by all your prayers and good wishes, we can't thank you enough.

She continues to run the show.

The "best" worst news ever

2007-11-28T06:45:00.000-08:00

Gianni eating pizza, watching Dora

Monday (11/26) was a big day; the doctor's removed Gianni's "brain drain" (external ventricular drain - EVD) and shortly after we were joyfully kicked out of the intensive care unit. We now have a room on the 7th floor (oncology patients). Gianni has a bit more privacy (checks every 6 hours vs. every hour) and substantially more freedom to move around.

Monday night we also received the results from the pathology report. Gianni is fighting a tumor/cancer named Primary Supratentorial Primitive Neuroectodermal Tumor (sPNT). In our new paradigm, this is good news - unlike some of the other types of cancer she could have been facing, there are treatments (both standard and experimental) available for children with sPNT.

Tony and I meet with the oncologists this afternoon (Wed, 11/28) to lay out her treatment plan. Most likely the treatment will consist of intensive chemotherapy (possibly stem cell rescue). Radiation treatments are not desirable in children, but may become an option later.

The tentative plan includes a few days at home between now and next Monday. Next Monday she will have surgery to implant a semi-permanent IV port (for the chemo) and begin her treatments.

She is doing so well, yesterday we hit the Pediatric Gym where she was able to walk around and play a bit. We painted, played with a giant doll house, and kid's kitchen.

She continues to run the show.

To date ...

2007-11-25T22:46:00.001-08:00

"Princess" Gianni

Hello All,

Tony and I are overwhelmed by all of your support, good wishes, and prayers. It has been an incredible week . . .

Doctor's found Gianni's (now completely removed [sans molecular remnants]) tumor on Wednesday (11/14) at Mills-Peninsula. She was taken via ambulance that night to UCSF.

Thursday was an MRI and Friday was the surgery. The rest is a bit of a blur; night/day following the surgery was an ordeal Tony and I may never forget. . . suffice to say that she is a very strong little girl and has had a remarkable recovery.

The remaining time until now has been a bit of a blur; many neuro checks, CT scans, and pokes later, we find ourselves still here - awaiting removal of a drain that was placed in her head during the initial surgery to relieve pressure and the results of the pathology report.

We do know that the tumor was malignant (requires chemotherapy and/or radiation to mitigate), the full details on the type and treatment will be available later this week.

She is an incredibly strong little girl - she is eating well and is spending her time taking pictures, putting on her pretties (lipstick, nail polish, etc.; even I get a spa treatment periodically from the diva), reading stories, and watching Dora and SpongeBob.

Bruno is doing well; our family and friends are taking such good care of him . . . he may not want to come back!

Again many thanks to you all for keeping us in your thoughts and prayers.

More to come.

--- Funny Gianni ---
- 11/15: Introduces herself to the hospital staff as "Princess Gianni"; all the nurses now refer to themselves as "Princess Dawn, Princess Amy Joe, Princess Stephanie, ..."

- 11/16: In response to having blood pressure taken; nurses tell Gianni that it is just like a "little hug": "I don't want a "little hug!"

- 11/23: "I don't have an owie in my brain today."

Diagnosis and Treatment

2007-11-14T10:03:00.000-08:00

Summer of 2007 my daughter Gianni began complaining of intermittent headaches, however, in true toddler fashion, the complaints usually coincided with a battle of the wills. We were only moderately concerned (she was so healthy!) and brought the symptoms to the attention of our pediatrician who suggested allergies or even just a behavior control issue. Veteran's Day weekend, my husband and I noticed her favoring her right side, a bit of a limp, and limited use of her left arm - we were definitely alarmed and brought her to her pediatrician first thing Monday morning. A CT scan was scheduled for the next day (Nov 13) at Mills Peninsula (the hospital where both our children were born) that procedure had to be rescheduled for the next day so that we could incorporate anesthesia – who ever heard of a two year old staying perfectly still for 20 seconds, let alone 15 minutes!

Apprehensive.

Wednesday’s CT revealed a large mass in her right frontal lobe. As soon as she came out of the anesthesia we were informed of the seriousness of what they had found and loaded into an ambulance for the 40 minute trip to San Francisco and into the capable hands of the neurosurgery team at UCSF.

Scared.

We were installed in the Pediatric Intensive Care Unit (PICU) and she was put on the books for an MRI to map her brain on Thursday and surgery on Friday (Nov 16). Surgery is the word they used to explain what was happening, but the real term is craniotomy . . . sounds so much scarier! Because of the emergent nature of her symptoms (they were getting worse by the hour), we never even considered the “surgery” as a choice we were involved in, it was an inevitability.

Terrified.

From a biopsy taken during the surgery, our daughter Gianni was diagnosed on November 16, 2007, less than 3 weeks before her 3rd birthday, with supratentorial primitive neuroectodermal tumor, or (sPNT), a highly malignant brain tumor similar to medulloblastoma - Cancer.

Devastated.

After reviewing a post-surgery MRI, Gianni's surgery was deemed a complete removal of her tumor (total resection). Although the tumor was removed, there is always a possibility that some cells (molecules) may have been left behind. The problem - if any cells remain they can start growing anywhere in her brain, spinal column, or bones. Tony and I spent the next two weeks researching/agonizing over a multitude of available treatments, sending her records out for third and fourth opinions, and reading the grim survival statistics and side effects of treatment. Every single option sucked – we were stuck with having to make a miserable choice.

Determined.

We ultimately decided on treatment with Dr. Paul Fisher and his team at Stanford's Lucile Packard Children's Hospital (LPCH). His specialty is clinical neuro-oncology, cancer of the brain – you can’t get any more focused than that! His research encompasses brain tumors in childhood with a particular interest in the neurologic effects of cancer and its therapies. We really felt that his team would allow us to explore aggressive treatment options while focusing on maintaining as high a quality of life after treatment as possible. The LPCH neuro oncology team offered a high dose chemotherapy treatment that could be tailored to Gianni’s response. Although radiation is the "industry gold standard" - at her age the radiation would wreak havoc on her developing brain (terms used to describe the side effects to us included, "inability to care for herself"). She was scheduled for eight 28-day cycles of chemotherapy (read minimum of 8 months). Each 28-day cycle includes eight days of intravenous chemo, one administration of intrathecal (an injection into the spinal canal) chemo, and various and sundry pokes, prods, and checks.

Resolved.

We could not be happier with the team of people - no, the family of people who are caring for her at LPCH. The journey is long and hard – and we are just sideline participants, she is the one on the treadmill. She is doing well; she gives us hope and strength daily. We are so very proud of her ability to adapt and maintain her fighting, fun-loving spirit. She is my hero.

Gianni Gheno

DX + 2 years!

Kindergarten and various asundry fun...

September is Childhood Cancer Awareness Month

11 of n: MRI is Clear!

Clear MRI, a Green Tee (although this year they were blue...), and Gravy

MRI is Clear!

Feels like fall and Fairy Wings

PICNIC

Even more hair, More cabin fun, More baseball, and oh...clinic

Clinic

Vote for Project Brain Child

Jes' B-Day

More hair, cabin fun, and baseball

Hair Fairy

MRI is Clear!

All done...

Cycle 8, Day 12

Cycle 8, Day 11

Cycle 8, In it to win it

Gearing up for Cycle 8

More party.... still no streamers!

Cycle 7, Closer to the end than the begining

Glorious Independence Day!

Cycle 7: More fusion...

Cycle 7, Days 10 - 12

Cycle 7, Chillin' with Dad and Mr. B

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

Cycle 7, Days 2-4

Father's Day and LP is neagtive = )

Gearing up for Cycle 7 . . . Really!

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

Still more Cycle 06

Interesting few days....

**MRI Is CLEAR**

[Still] Gearing up for Cycle 7

Gearing up for Cycle 7

CHEESE!

F-U-N Time!

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

Cycle 6, No More F&N

Cycle 6, Finally an Update!

Green Tee

Cycle 6, Day 2

Gearing up for Cycle 6

Space Crickets

Cycle 5, Update

Cycle 5, Day 5

Cycle 5, Day 1

Gearing Up for Cycle 5

MRI is CLEAR CLEAR CLEAR!!!

Saturday @ the beach

Super Trooper

Cycle 4, Day 7

Busy Week

Cycle 3, Day 23 [clinic]

Cycle 3, Day 20 . . . HOME!

Cycle 3, Day 17

Cycle 3, Day 14

Solitude: sweet absence of faces. - Kundera

The good trend continues

Cycle 3 . . . F&N

Cycle 3, Day 7 [St. Valentines Day]

Cycle 03, home again

Cycle 3, Day 2/3

MRI is CLEAR!!!!!

End of Cycle 2

Cycle 2, Days 15-16

1st Access

Cycle 2, Day 9

Cycle 2, Day 7

Cycle 2, Day 1

Gearing up for Cycle 2

No place like home III

Merry Christmas!!

F & N . . . continued

F&N

Cycle 1, day 8

No place like home II

Cycle 1, Day 3

MRI Is CLEAR