August Part II

As I write this, I'm listening to Tchaikovsky's"Pathétique" Symphony (#6 for you music geeks). Might not be a good idea. We'll see.

August is so crammed with stuf that we needed two blog posts to get it all in. The most immediate thing going on is Rompy's Summer Concert to Benefit CJSTUF. That's TOMORROW! All the final details are coming together and even if it rains, it will be a great time. Our featured performer will be Vinx. He's not to be missed.

It will be at Stonewall Square Shopping Center at 6300 Mechanicsville Tpke in Mechanicsville from 5:30-7:30. We've got a boatload of generous sponsors who are making it so that CJSTUF doesn't have to pay a thing which means all raffles and such are going to the Foundation 100%. We can't thank them enough.

There will also be other organizations present. The VA Blood Services Bloodmobile will be there so if you're eligible, please plan to give blood. I understand they will be bringing the "big" bus where people can do a "double" donation. That's a lot of lives affected by just one act of kindness. Many of the friends we've met in clinic or even via the internet still have serious struggles ahead of them including frequent blood/platelet transfusions. It's gotta come from somewhere so let's roll up our sleeves! I plan to be first in line.

The other cool organization is the 501st Legion Vader's Fist. A group of Star Wars enthusiasts who dress in officially sanctioned Start Wars costumes and raise funds for good causes. They were at one of our concerts last year and were a huge hit!



(TANGENT: As I listen to this music, I am reminded from where John Williams "borrowed" his theme for Indiana Jones. There might even be ideas for Star Wars lying around in there as well.)

So where was I? Oh yeah, the Star Wars guys will be on hand for photo ops and general tyrannical oppression (Suggested $5 donation, please).

That reminds me, we need some volunteers to help them collect money. That way, they don't have to mess with it. If you want to volunteer in any way, please show up sometime between 4:30-5:00pm. I'm sure we can find something for you to do.

Another fine organization coming to the party is the Hanover County Fire/EMS Engine #7. They'll be bringing at least one truck and will let the little ones climb on to check things out. No cost there.

Other possible vehicles showing up might include:
C&F Bank's "Toaster" car
A race car from Battlefield Service Center
A BMW from Richmond BMW on Midlothian

Romp n' Roll will be open

We are planning to have the concert outside but there is a chance for isolated thunder showers. If that happens, we'll move it inside Romp n' Roll and the vendors can set up under the overhang. It will happen no matter what and it will still be a hoot!

Please bring folding chairs if you'd like. We might actually need an extra table or two. Just throw one in the back of your car just in case! :-)

The next pressing item on the agenda is the Bluemont Concert Series in Ashland. The next concert, to be held at the Hanover Arts & Activity Center will be this Sunday from 7-9pm and CJSTUF has been invited to occupy a bake sale booth. We already have some folks baking things but small batches of very creative, butterfly themed (or just pink and purple) goodies might be very nice to have. They all have to be individually wrapped for sale (groups of things are O.K.). The concert is $10 and we get to keep what we make from the bake sale. We're actually as interested in raising awareness as anything so if you come, don't hesitate to let people know about us. The group is called Mandalele and looks to be very interesting.

Next (in the fourth movement, now. This is the one that really gets to me)

We are planning a special event in cooperation with the Ashland Police Department. It will be on the morning of Saturday, October 2 from 9-12 at a location yet to be determined.

Here's how it will work: We will have a clearly marked area in a parking lot or bus pick-up/drop-off area of a school or church and drivers will voluntarily pull in to be handed a "ticket" by an officer (looking suspiciously like Chief Doug Goodman). The levels of "fine" will be:

$5 for a minor traffic infraction
$10 for a "good tail chewin'" by an officer (think smackdown talk by pro wrestlers)
$25 for a full sobriety test (touch your nose, walk a straight line, ABC's backwards, etc...)

Then you'll proceed to our celebrity judge where the "bailiff" will conveniently take your fine...I mean donation to CJSTUF!

We also hope to have car-side entertainers in case you bring little ones with you. There may also be a playground nearby but that will only be bonus happenstance (love that word!) Any jugglers, stilt walkers, or acoustic musicians out there? Hanover Kids will probably play a roll in the festivities as well.

Here's yet another very cool thing that has just popped up. Unbeknown to us, the website kidsdinefree.net has been setting aside a portion of sales of their discount card for CJSTUF. It seems she has set the deadline for TODAY! So if you would like to get a deal and help out CJSTUF, hop on over to www.kidsdinefree.net right now. That's ok, I'll wait!

Good, now you're back.

Of course, this update has taken me all day and I've gone through several playlists, all of which were good but not too "moment" inducing. Kind of a nice relief.

I'll sign off for now but I'm sure we'll be back soon enough.

Her Protocol

Very quick update,
We're going in for the latest LP (spinal tap) this morning and hopefully we'll get to talk to Dr. Kahn about the next move.

If everything goes smoothly and there are no complications, Rachel and I are headed to the Capital Ale House to see a favorite of ours VINX! He's a percussionist/vocalist who was discovered quite by accident when Sting was passing by a club where VINX was playing. Sting heard the very cool music, pulled up short, and went to listen. He eventually produced VINX's first album. I stumbled upon it in college and Choosy Mama from his second album, "I Love My Job," has been used as sort of a theme song in our family.

Tomorrow is the award ceremony at Chick-fil-a at VCM and I think it would be very cool if the fire marshall closed the place down due to too many people! Just a thought. I'm actually feeling a little apprehensive about the LP today. Hope I can celebrate/appreciate it properly tomorrow

Gotta go wake up the princess.

Update:
We are back from the clinic. We were only there for 6 hours today. Sheesh. At least we got some answers.

First order of business was the spinal tap. They asked us to be there by 9 just in case anesthesia was ready early but they weren't so the spinal tap didn't happen until about 11 or so. Let's all remember that Charlotte had had nothing to eat since about 8 PM the night before and had to be NPO for the anesthesia. She really didn't complain too much but as soon as Charlotte was "out" Roger went downstairs to nab some (what else) Chick Fil A.

Speaking of which, y'all come on out tomorrow at 5:30 to the Chick-Fil-A at Virginia Center Marketplace to honor our Great Richmond DAD! Yay!

Back to the story...so as soon as they gave her the sleepy juice, she was pretty much out of it. It was hilarious to watch her engaged in converstaion and then, midsentence, to just flop over and go to sleep.

After the tap, we waited for her to rouse. Dr. Tye and Joanne came by to check in with her. Dr. Khan had taken out her stitches while she was out for the spinal tap so her head looks GREAT. Then Dr. Khan came back with (drum roll, please) her protocol. They are looking at starting some oral and IV medications on an outpatient basis for a few weeks. She will be on Accutane (yes, the acne drug), Topotecan (she will have to have this via IV 5 days a week in clinic because of the dosage needed), and eventually Temozolamide (another oral med). All of these meds carry their own share of side effects, all similar to many of the drugs she has been on before. The goal with all of these drugs will be to neutralize the malignant properties of the tumor (the Accutane does this) and stop the tumor growth.

We are also going to try to get her back into a somewhat regular PT/OT schedule in the next few weeks.

Radiation is tentatively scheduled to start mid-July and will be for 6-8 weeks. Pending results of the spinal tap (and assuming it is clear), we will start to coordinate with our new hospital for radiation. We agree with Dr. Khan that while many of the long term benefits of proton beam radiation are not well known (mainly because it is such a new therapy), it is worth the effort and risk given her age and all the potential benefits. He is going to work on checking with insurance and participating hospitals. She will actually stay on the other three chemotherapy drugs throughout radiation and then will continue them after radiation as well. There is a road map laid out week-by-week with all of the different drugs and when she takes them.

At this time, we don't have high dose chemo on the plan but we have to see how the tumor reacts to radiation and some of these other agents. Potentially, she could be on these medications for up to two years before treatment would be "done" BUT if we are "just" dealing with outpatient meds and an infusion or two, that is definitely more do-able than constant hospitalizations. That is good news in my mind.

In other news, as we realized that we now have a treatment timeline, we figured that we can now plan the Princess's birthday. while we were waiting in clinic, we discussed dates and I think we are going to have a party on July 10th (a Friday) sometime in the evening. Charlotte decided that she wants to have a Tinkerbell party with an ice cream cake and she wants to have the party at Romp n' Roll. So here's your official invitation:

EVERYONE that would like to come is invited to celebrate Charlotte's 4th birthday on Friday July 10th at 6 PM at Romp n' Roll. We will have ice cream cake and some food. Please no presents. This is not a fundraiser and we don't need any gifts. We would just like everyone to come out and celebrate. Hope to see you there!!!

In other event news, the Home Based Business Bazaar will be at St. Ann's Catholic Church in Ashland on June 27th. This is a great opportunity to find that perfect gift or get your Christmas shopping done early. Many home-based businesses including Pampered Chef, Arbonne, the Happy Gardener, Avon, PartyLite candles, and others will be represented and will be donating a portion of their sales to Charlotte. There will also be a silent auction.

Also on the calendar is the NEXT Rompy's Concert Series on July 9th (Charlotte's actual birthday) at Chick Fil A/Romp n' Roll. Chris Fuller and Charles Arthur will entertain and we will have the blood bank there as well as a collection for the Central VA Food Bank.

I think that's it for now. Roger and I need to get freshened up for our date with VINX. Very exciting!

I feel a huge weight lifted just to have some answers and know that we will begin treatment tomorrow.

Rachel