DX + 2 years!

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 sundry fun...

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

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!