September is Childhood Cancer Awareness Month

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!

"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

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.

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!

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

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

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

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

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

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

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More hair, cabin fun, and baseball

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

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...!