Space Crickets

Who has the bigger grin...?

As time marches on we’ve really gotten ourselves into some form of a routine. However, one great break in the routine was a long anticipated, whole family trip to the cabin! When under duress, Gianni frequently asks to go “home”, we’ll say, “we are home”, or “yes, we know we are on our way home”. And she’ll reply, “No, not the Brisbane house, the cabin!” What a smart cookie! She knows that she’s not going to run into anyone who can poke her up there! I took a vacation day on Friday and the whole family drove up together in the Jeep.

We played baseball, pirates, soccer, checkers, tea party, toolbox, and dollhouse; essentially just stayed outside for every daylight hour. We watched movies, roasted marshmallows in the fire pit, hiked, 4-wheeled, and blew bubbles. We ate wonderful meals prepared on the grill by Tony, big breakfasts that included sugar cereals (put that in for you mom), and homemade brownies from the box.

On Sunday, after we got back “home” to the Brisbane house, my Uncle Ray and Aunt Liz up from San Diego came by for a short visit, so we had a very full weekend!

We slept till 7:30 am on Monday.

The last two weeks have been a regular hodge podge of ups and downs but Gianni has been up and really full of energy. The weekend before last, while the boys were preparing the cabin for our upcoming visit, Gianni and I drove down to Santa Cruz under the guise of buying her some high top tennis shoes. Old School Shoes sells toddler size, high-top Converse, and our Neuro Oncologist, Trish had suggested the high tops to help with some weakness she is experiencing in her ankles as a side effect of the chemo (that’s my story and I’m sticking to it). Trish warned us of this effect (peripheral neuropathy) - it may last for at least as long as therapy is continued, so I read this as a good excuse to buy cute shoes (plus now she has a pair “just like her daddy”). We took Highway 1 and the drive was gorgeous, we stopped a few times along the way to enjoy a random beach here and there, we walked up and down the main drag in Santa Cruz, and had an outdoor lunch on the boardwalk – it was a special trip.

We also managed a "family night" with Auntie Jen and Uncle Timmy; too much pizza, some wine, and ruckus play for the kids (oh and Bruno, Gianni, and Jess had fun too!).

We are preparing ourselves for round six; since the hearing loss drug has been axed we will stay with the same program as round five –

- Wednesday lumbar puncture (day 1: lyposomal cytarabine and diagnostics)

- Thursday overnight admit to PEC (day 2-3: main course of chemo)

- Saturday morning day hospital (day 4: remaining chemo)

This regime is much easier to handle than the earlier full week admit, and last month was the best yet, the first round with no F&N admission… so we are optimistic. However, it still sucks, especially since she has been feeling so well… it is hard bringing her back for the chemo round.

Saturday is also the Brain Tumor Walk and Angel Adventure for the National Brain Tumor Foundation. We have raised nearly $3,400 to support brain tumor research and patient services at the National Brain Tumor Foundation. I am overwhelmed with the support of our friends, family, and just those that have been touched by Gianni.

Thank you.

Bruno and I will tackle the 5K walk as “Team PNET Beater” while Tony and the real PNET Beater are at the day hospital. In addition to supporting a truly meaningful cause, I am so looking forward to meeting other families and patients whose lives have been touched by brain tumors.

Funny Gianni:
One of the tests for her hearing (the listening game) is described as listening to “space crickets”. When describing this game to Trish, Gianni says,

“They took out my brain, so now I can listen for space crickets.”

What do you mean, "Wait till they're cooked",
I thought brownies were raw!

Gianni at clinic - her own version
of "high-tops" (pre-Converse).