Thursday, October 30, 2008

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.

Sunday, October 5, 2008

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!

Wednesday, October 1, 2008

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!