Tuesday, September 23, 2008

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.

Monday, September 22, 2008

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.

Sunday, September 21, 2008

Friday, September 19, 2008

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.

Saturday, September 13, 2008

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...!



Tuesday, September 2, 2008

MRI is Clear!

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".