Things are Going Very Well at Home

First off, Sorry about the lack of update. We are having trouble getting on to Caringbridge from home. Not sure why when the rest of our internet service at home works fine. Anyone have an insight into why that may be?

Other than that, things are going very well at home. Charlotte was extremely mellow yesterday and we kept an eye on her just to make sure she wasn't getting sick or something but she seemed fine. Her BM last night was very healthy!

As with the second surgery, she's now going through a bit of an "emotional" phase. Devon came by and spent some great quality time with CJ, snuggling with her, reading to her, and watching videos but she had a couple meltdowns when things didn't go exactly the way she wanted them. Like when the Sesame Street Halloween video ended. It took a moment to figure out exactly why she was bawling but we did and it's par for the course of recovery.

We went to Qdoba to get the official check for the burrito eating contest from Lisa. Everything added together, we raised $975! Thanks everyone who helped. CJ has such a following, the Army recruiter from across the parking lot actually came over just to see her when he found out she was there. A couple other people did as well.

We're very excited about the upcoming events at Romp n' Roll and in the surrounding community:

Our free week of preview classes has been received with a great deal of excitement and there are not many spaces left. I think the most vancies are with the babies class but we booked several of those yesterday.

The Ashland Strawberry Faire is looking to be a very nice change from this rainy weather. Forecasts call for partly cloudy skies with a high of around 81. Couldn't ask for a better outlook. We'll be there with face painting, crafts, and the bubble gun!

Rompy's Summer Concert Series kicks off on Thursday the 11th with Clay Mottley and the Taters. Food donations for the Central Virginia Food Bank will be accepted as well as donations for Charlotte's fund. There will also be a bloodmobile on site starting at 3pm.

Gotta go get ready for "Big Friday!"

Rog

As a followup to the last post:

There's now a sign-up sheet at Romp n' Roll for the Bloodmobile. Appointments start at 3:00pm and there's an average of 6 slots for every hour which equals 26 pints of badly needed blood. If you're available and eligible to give blood, please call the store to sign up. Think of it this way, after this, you get a 3-month break from VA Blood Services calling you every day to come in and give blood! :-) You're giving in CJ's name but not for her directly as she has mercifully needed very little. I'm sure, however, that that will change when we move into the next phase of treatment, whatever that means.

On another tangent...We're gonna pass 100,000 hits today!!! How exciting! You guys are amazing. Wish I knew how to save and print the page when it goes over.

I would like to paste an email I received from the father of a child who passed away from a brain tumor. They have a very active foundation and I would engourage you to learn more about what they do. I saw them featured on the Golf Channel while Charlotte was recovering from the last surgery.

"Reynolds family,

Thank you so much for writing on Payton’s blog and it is strange how these things happen to bring people together. Flipping through the channels late at night is something I know all to well about.

It sounds like your daughter is getting great care. We did the same as far as getting several opinions and ended up at Duke Hospital at the Preston Robert Tisch Brain Tumor Center. I was recently there and spoke to Payton’s doctor, Dr. Gururangan and he said they are working on a vaccine that may have helped Payton. I could introduce you to him if you like to see if your hospital is collaborating with Duke on any of their studies. M.D. Anderson is another top notch hospital. I have been invited to meet the president and tour their hospital soon and can’t wait.

Payton was first diagnosed with a PNET as well and after two weeks of collaboration between 5 different hospitals they determined it was a Medulloepithelioma tumor.

I know how you feel and what your family is going through so stay strong. That is an easy thing to say, but much harder to do. I don’t have any magic words that can make you feel better or to help you get through this. There just isn’t any. People always say I couldn’t do what you both did, I wouldn’t of made it through, I can’t believe how strong you are….many things along those lines…well you just do it. As you know, you just get through each day and take it on. There is no other choice. I am sure you have said to your daughter that you would take this cancer if you could. I said it every day. CANCER SUCKS. But you guys keep fighting because I am sure your daughter will.

Sorry if I didn’t make sense in this email or offended you in anyway. As much as I do it, it is still hard for me as someone who has lived through the horrors and seen the things you have seen to communicate with folks living through it now. Hang in there and let me know if I can help.

www.paytonwright.org"

I especially like the fact that many of the things in Mr. Wright's email are things we've found ourselves saying like "CANCER SUCKS!" I understand the last golf tournament they had raised over $70,000!

The ball is rolling again to get "CJ's Thumbs Up! Foundation" up and running. We hope it will be a "fun-raising" organization that will privide financial (and sometimes personell) assistance to individuals and other organizations that already do the things we were thinking of doing. We'll let you know when the tires hit the road.

So here's to 100,000 hits, the Strawberry Faire, and the Concert Series!

Thanks for everything past, present, and future!

Roger

Charlotte had a Pretty Good Night

Always have to lose one post per round.

Just had a fire alarm so I posted what I had typed but failed to realize that my connection had "expired." So off to the great ether went my morning's thoughts.

Suffice to say that Charlotte had a pretty good night in spite of the beeps, diaper/medication changes, and the little baby admitted last night about midnight. I'm not sure if it's a boy or a girl but he/she was having a very rough night. Another one for the positive energy focus group.

I'm copying as I'm going btw.

It was the morning of her 100th day that ran over CJ like a Mack truck. I woke at around 5:30 from a deep sleep and moderately good dream to CJ "yarking" what little she had in her stomach. She was still asleep so it took her a minute to realize she shouldn't put her hands in it.

We changed her clothes, diaper, and bedding and she zonked again.

About 8:30 she threw up again so they gave her an anti-nausea steroid with a little more umph than the zofran.

She's still sleeping and I can only imagine that she will most of the day.

Grandpa left this moring and I understand he left behind some Juanita Bonits goodies. Thanks! I can't tell you how nice it was to have my dad here. He covered CJ shifts Rachel and I couldn't have possibly covered.

Granny comes in today so the family revolving door continues to go 'round which is good.

Do you think the reporters covering the swine flu outbreak from Mexico did something wrong?

In Romp n' Roll news, Rompy's Summer Concert Series has finally been set. Mark your calendars.

Thursday, June 11 - The Taters (LOVE those guys!)
Thursday, July 9 (CJ's Birthday!) - Clay Mottley (the voice of Tumble Tunes)
Thursday, August 20 - The Uptown Vocal Jazz Quartet with special guest Gypsy Roots Swing Band.

There might also be super secret surprize guests.

Concerts are free, start at 5:30pm, and we'll be accepting cash donations for Charlotte and non-perishable food donations for the Central Virginia Food Bank.

Also, we're having Rompy's Bluegrass Jam Monday night from 5:30 until...? Bring yer ax and yer kin. Kids can play in the gym for $5 while anyone can come jam for free.

Another random thought. With all the amazing technology all around us, why can't MCV have showers that don't leak or drip?

OK so Nurse Nikki just came in and tlod me there is an MRI scheduled for today. as that been on the books for a while? Sometimes I feel so out of touch.

I think a coffee mug is calling me.

A Few Quick Notes

Very quick note.
The Randolph-Macon College bookstore (now owned by Wal-Mart! :-) ) has Charlotte bracelets!

There are also lots at the store and we'll be happy to deliver any where!

Thanks,
Rog

Next very quick note.
Ashland Breakfast and Lunch (Formerly Pete's Restaurant) on Ashcake and US 1 now has pink bracelets. (and pretty good chicken noodle soup as well).
Had a cool event in my babies class today. One of the more serious babies actually gave me a little bit of a smile while I was tickling her during Rompy's goodbye song. That was a first and it made my day!
Other news, I've confirmed the participation of the Uptown Vocal Jazz Quartet as the "headliners" for the final concert in Rompy's Summer Concert Series. The concerts will take place on the second Thursdays of June, July, and August. UVJQ will perform on August 13 and Gypsy Roots Swing (with Thomas Wakefield) will open the fun with their own brand of "jazz manouche." Both bands are donating their services.
All concerts will be used to gather food donations for the Central Virginia Food Bank and monetary donations for CJ's fund. They'll be in the Chick-fil-a parking lot and we're always looking for more sponsors!
As I get all the other bands confirmed, I'll send out the big press release. Just thought you get excited by the Uptown/Gypsy Roots development. Gotta love those guys!
OK, not such a quick note.

Mommy's turn:
Charlotte's days continue to be good. I can only assume that the overnight IV fluids that we have this time around have something to do with it (and maybe the glorious power of prayer). She continues to keep up her energy, appetite, and a poop at least every other day. We got permission today from our NP for IV fluids to continue until her clinic visit on Friday.
We will be very sad to see Granny, gramps, and Kolbey leave tomorrow. for Florida. Kolbey will fly home on Monday but Granny will not return until the end of the month....hopefully timed well with our next round of chemo.
As mentioned, i will be posting some "needs for help" on the care calendar soon. Hopefully by late tonight/early tomorrow.
ALSO, our fun-raising team has been busy, busy, busy. First of all, the checks keep floating in from the Head Shaving party with additional donations for Bob Flanagan and Mitch Hayes. Way to go! We also have a LOT of upcoming events in the remainder of April, May, and even into June that will benefit Charlotte. I am thinking that the best way to get the word out about this is through a published calendar; however, I'm not sure WHERE I can publish it. There are no spaces on Caring Bridge and Care Calendar doesn't seem to be the most user-friendly thing in the world. If anyone has any ideas about this, please email me directly. I was thinking of something in Publisher/PDF format that I could post online somewhere...I'll work on that.
Tomorrow morning it's RnR for mommy and PT for Charlotte (and Daddy). Then we'll do the big switcheroo in the afternoon.
I'd like to see the sun but I really won't complain...
Rachel