Gearing up for Cycle 6

Looks like we won't get off totally scott free this cycle - Our NO called today to let us know that Gianni will be getting a replacement drug for the Cisplatin we dropped last cycle. The new drug is called Carboplatin and is in the same family but has less effect on her hearing. Her hearing test results show that she is holding pretty steady with just a little additional loss in the higher frequencies than last month - and mostly just the right ear. The addition of the new drug is a stark reminder of how thin the line is that we are balancing; she needs enough "medicine" to obliterate the cancer but not so much that she looses significant quality of life. We can not afford to back off. It is an insane way to think, an impossible trade. It is a tough choice to make, especially since she is feeling so good - I am grateful for the experience and judgment of Dr. Fisher, Trish, and all the others who have made it their life's work to make these calls. The addition of the Carboplatin will not significantly affect our schedule, so we are still hoping for the one night stay (home on Friday) with a short trip to the day hospital Saturday.

Because she will be under anesthesia tomorrow she's required to be NPO (nil per os, nothing by mouth or NG I guess) after midnight tonight so I am just waiting to turn off her pump before going to bed. We have an early day tomorrow. Her LP is the 1st procedure of the day at 7:30 am. I like that schedule the best - we don't have to withhold food and water from her all day and when you are first there's rarely any waiting. I'll bundle her up around 5:15 a.m. to head to LPCH and before we know it Tony will be chauffeuring her back home in time for lunch.

Gearing up for cycle six . . . !

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).

Cycle 5, Update

Hmmm, does this t-shirt make me look
like I could ditch the NG tube?

Ready for action

Has it really been over a week since I updated?!?!?! Bad blogger!

We’ve had a blessedly uneventful week. Gianni has been her joyful self. Daddy even looks a bit harried at the end of the day, she is running him ragged.

Our first Monday clinic post-admit was uneventful and Tony took her solo on Thursday for her blood draw and chemo bump - - - whoops “we” forgot about the chemo bump and had her de-accessed before seeing Trish for the chemo. No worries, I had to take her to the day hospital on Friday for a RBC transfusion anyway, she was able to catch up with the chemo then.

Tony felt good enough about her well being (even on a chemo week) to hike himself and Bruno up to the cabin this weekend. This meant another girls weekend for Gianni and me – Saturday we decided to hit the zoo and had a great time. With all the amazing and wonderful animals at the zoo, I think her favorites were the turtles and the turkeys. She had a bit of emesis and some NG issues on Sunday so we just laid low until the boys arrived home Sunday afternoon. Sunday night we crashed Auntie Jen and Uncle Timmy’s for some quality food and play time with Jessica.

Tony and Gianni made it to yesterday’s clinic solo again; also uneventful. Trish called Monday afternoon and told me I’d get a gold star if I could guess Gianni’s “numbers” – I don’t know whether to be totally proud or completely depressed, I hit every number on the button. So the upshot is that her counts are where we expected them to be – and no more s-h-o-t this cycle! We removed the “arm band-aid” (sub-Q catheter) after dinner and all did a little family jig to celebrate “no more owies” for Gianni. Actually the sub-Q band-aid worked pretty well, I’m not sure Gianni gets any relief from shot anxiety but it sure helps me!

Funny Bruno: I brought Gianni with me to pick up Bruno from school the other day. There was a new parent (had not yet met Gianni) who could not take their eyes off of Gianni’s bald little head and finally asked her what had happened. Bruno quickly interjected and said, “Gianni had to shave her head, she lost a bet.”

Last weekend at around 2 am Sunday morning I’m watching TV and a commercial for the upcoming “Brain Tumor Walk and Angel Adventure® - A Walk and Community Day to support the brain tumor cause” in San Francisco grabs my attention (What . . . are you talking to me?!?). I felt like someone had just walked into our home and slapped me upside the head – of course I was going to participate! Now that our family is putting one foot in front of the other again, it is time to put that forward motion to work. I am participating in this walk to support the fundraising efforts for the National Brain Tumor Foundation and to help make a difference in the fight against brain tumors (and because I have so much free time, I’d just go crazy sitting at home on a Saturday afternoon with nothing else to do!). If you’d like to learn more, just follow this link http://www.firstgiving.com/giannigheno, or the link at the top right hand corner of this page.

Bless you all for your thoughts, prayers, wishes, and hospital goodies (especially puppet theater, homemade cards, and jewelry – you know who you are!). We are filled with gratitude.

Cycle 5, Day 5

One of G'Pa's girls, out on the town.

We're baaaack . . . home that is! Gianni did just great - Tony brought her to PEC on Thursday around lunchtime and we were out of there by Friday afternoon. Gianni and I hiked back to LPCH Saturday afternoon, stayed for a couple of hours and had dinner at home.

She's doing well enough that Tony and Bruno were able to go up to the cabin this weekend to take care of some Mountain business. G'Ma and G'Pa still came to visit Gianni and me today (sans Bruno of course). We had big fun - they brought the kids a giant bag of Spring/Summer clothes and of course the obligatory Pumpkin Pie! We all had a nice lunch out (no BBQ - I don't have 1/10th of Tony's culinary skills and the in-laws are wise enough not to test me!), and a quiet visit over pie at home.

Gianni and I hit the B'bane hills for an afternoon hike/stroll and she is now in deep hibernation.

We're off for labs tomorrow; we will be bracing ourselves for the inevitable neutropenia and associated perils (eff N en.... won't even type the initials for fear of retribution).

She looks tired and we have to stay on top of her anti-nausea meds but she has been into all kinds of trouble, I can tell she feels better than she has in a while. The picture is of her at lunch today wearing the some of her new duds, including the beautiful hat and matching purse. The socks are from St. Patrick's Day . . . I have to wash them at night and sneak them back on her before she wakes up, she loves them so. In the picture she looks exactly like my Grandma Austin, and in real life she was as cute as a button.

Her term of endearment: "Mommy/Daddy, me love you."

Cycle 5, Day 1

Bruno and the girls

Gianni's home and resting from the LP; we had to wait a bit longer than expected, which always stresses her (I should say US) and she had another rough anesthesia exit but other than that she's doing well. The steroid she takes to alleviate the irritation in her spine (from the LP) gives her really interesting mood swings so we have MAJOR battles over the most bizzare details - - that is until I remember that when you pair steroids with a 3 year old your gonna get a wee bit of irrational behavior! She is still full of spunk, causing all kinds of trouble for daddy and Bruno. We stayed with day 1 tradition and ordered a big, fat, greasy pizza for dinner. Bruno ate three pieces and Gianni ate two (another interesting side effect from the steroid is hunger ; )).

Some more good news - Because she is receiving less chemo this round she only has to stay in the hospital one night (Thursday) and we get to come home a day early! We have to go back to the Day Hospital at LPCH on Saturday to get one more dose of chemo but that should only take a couple hours or so.

Even more good news - The nursing staff at PEC found a subcutaneous catheter, normally used for diabetics who have to get daily subQ shots, that they think might work for Gianni's daily G-CSF shot. It will look essentially like a bandaid and if it works, she will only have to get two pokes (that we don't have to give her) and administering the nightly s-h-o-t at home should be much easier for her (and us!).

Last night while reading bedtime stories (the original Horton the Elephant hatched an egg) I must have had a worried look on my face because Gianni stops the story, looks me straight in the eye and says, "Mommy, you need to make the happy face . . . like this..." (as she proceeds to give me a sweet little smile). Needless to say, I made the happy face.

"I meant what I said
And I said what I meant. . . .
An elephant's faithful
One hundred per cent!"
- Horton the Elephant

That's it for now.

[The picture is from Easter, out of time sequence - but I liked it]

Gearing Up for Cycle 5

I can hear you, I'm just not listening!

Today is day one of Gianni's 5th cycle, so we are getting prepared for our (now) regular scheduled chemo boogy. The lumbar puncture is this afternoon; we'll come home tonight then off to PEC for her admit on Thursday morning. Bruno will visit with Uncle David and Auntie Patricia for a few days before G'Ma and G'Pa Walker come to collect him on Sunday. Barring any complications, we'll all be home for a big BBQ on Sunday afternoon.

We are monitoring Gianni's hearing on a monthly basis because one of the chemotherapy drugs (cisplatin) has hearing loss side effects. Her audiology tests show that her ability to hear the higher pitches is consistently dropping - the right ear is worse than the left. Trish (our super oncologist) is trying to avoid any severe hearing damage and has decided to drop the offending drug for this round to see how she does. Now this is the same offending drug that they halved in cycle 4 and we noticed a significant improvement in Gianni's energy level and overall well being this month (even with the F&N admit) so we are hopeful for a strong cycle.

The audiology test (listening game) has been a "fun" part of Gianni's treatment in that there are no owies and Dr. Davis conducts the test more like a game than a procedure. Gianni is set up in a sound proof room with a set of (huge!) ear phones and a pile of blocks; even though the sounds are coming from the earphones, Dr. Davis has told Gianni to place the block next to her ear and when she hears the sound she is to put the block into its “spot” (a board with different sized shapes and holes). Funny Gianni is entirely neurotic – all the colors and sizes have to be organized just right; she’ll take an extra 2 or 3 minutes moving things around after she’s “heard” the block just so that all the greens are together or all the blocks go from shortest to tallest in the same row. The most recent trip, Tony and I were able to take her together – when we got there she decided she didn’t want one of us to sit with her in the little room, she wanted to do it all by herself – big girl style . . .

April Fools was fun, I got the kids (and my mom) with the ole’, “It snowed last night, look out the window!”(only funny because it rarely, if ever snows in the Bay Area). Bruno got Gianni, and a few of the dad’s doing drop off at his school with the old stand by (spoken to someone wearing either no shoes or slip on shoes), “Hey your shoes are untied….”