The following post was written about this time of year, seven years ago -  I'm not sure why I did not post it then, however I don't think I could reiterate any better what past-Karen has written.

Gianni continues to bring happiness and joy to her family and friends. She continues to run the show.

~~~~~~~~~~~~~~~~~~
11/19/2011, 11:14 AM
Pacific Standard Time

The last time I made an official blog post was over two years ago - seems like yesterday. I've been planning on publishing this last posting for a long time, it just never seemed the right time... I could never motivate myself to sit down long enough to capture the floating anxieties into a coherent thought. Last week Tony and I took Gianni to her post-MRI follow up and were told that the Tumor Board had recommended to move us to yearly MRIs versus every 3 months. Our doctor and NP had been slowly creeping up the time between MRIs (every 3 months to 4 months to 6 months) - and I have been more and more comfortable with the increased time between scans. The plan going forward is: an annual visit with NeuroOnc in 6 months, annual MRI in 12 months. This means they think Gianni has a very low probability of recurrence.

I am nothing short of stunned... and what an amazing thing to be thankful for. The reasons I've been reticent to update are complicated - I am so grateful for our blessings. Most children diagnosed with brain tumors don't survive, the few that do survive the tumor are plagued with the short and long term effects of the systemic, invasive treatments.

It's a small community we joined when Gianni was diagnosed and began treatment - the natural response is to reach out, find others who are sharing the nightmarish experience and find families with positive outcomes. In progressing through that journey, I've made many friends and connections with mothers and fathers of children - most of which are suffering the devastating loss to this horrific disease.  Although we shared a similar journey of fear, disgusts, angst over the decisions that had to be  made, and not being able to shoulder the suffering of your own child; we did not share the same journey at all, because for reasons which I may never understand, our daughter has, for now, been spared. These few words are the ones that have been so hard to write. Every time I even think it I "knock-on-wood", for I know children who have "earned their wings" - that is an easier way of saying, they died. They are no longer are here to hug and kiss their loved ones, play, laugh,  run, share, grow and experience. The hole in the hearts and souls of their families is unimaginable. I often tried to imagine that feeling - part of coping is managing the expectation of, "what's the worse that could happen" and that exercise, and knowing that there is no certainty that I could survive "the worst that could happen" is what kept me going much of the time. But I know I am not unique, that my love for Gianni is not what spared her. A mother's love for her children is not measurable or comparable across individuals. The mothers who lost their sons and daughters loved, fought, prayed, wished every bit as hard as we have.

I'm leaving Gianni's blog up for that parent who has just received their child's diagnosis and is sitting in the hospital, desperately Googling the horrific search terms will eventually find this page [brain tumor, PNET, medulloblastoma, supratentorial primitive neuroectodermal tumor, (sPNT), childhood cancer, chemotherapy] and if they are patient with my ramblings they will also find some useful information, kinship through shared experiences, wisdom from good, bad and similar choices made, and a story.

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!

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!