Charlotte has Done So Well today!

Charlotte has done so well today! She didn’t eat much of anything this morning before she had to go NPO but she did drink a container of apple juice at a little after 11. (fudged the 11 o’clock cut-off just a little). The sugar in the apple juice must have set her off because she came alive after that. Chatting and telling everyone plots of shows/books, who in our family is related to whom, and general CJ stuff like that. When the Bonitas came by, I walked to The House and did some domestic stuff including making CJ’s bed, check the mail, stuff like that. Also got a change of clothes for me. The Bayer folks were providing lunch today and were handing out bags with little teddy bears in them. They also gave out little squeezy stressball eagles. Who would need something like that? :-P
When I got back to CJ’s room, I heard that she had taken the Bonitas on quite the little jaunt. She had been on a ride around the floor in the wagon already but when they took her out to go back into the room, they found she wasn’t quite done and she led them off on a walking tour of the floor this time, followed by yet another ride in the wagon.
Then it was time for the ambulance ride to the proton center which has already become old hat for her. The crew was different and the woman could have been our neighbor, Abby’s, big sister. Charlotte didn’t see the resemblance.
At the proton center, Charlotte played in the toy area and made me give up my shoe for “lace time.” She has the most disgustingly sweet, Shirley Temple, cavities for the rest of your life way of asking, “Daddy may I PLEASE play with your shoestring?” Then after she completely deconstructs my shoe, she turns around and asks, “Is it ok if I play with your shoestring?” I mean, who can resist it. The police should isolate it and use it as a non-lethal weapon. “Mr. Bad Guy, would you PLEASE freeze?” “If done right, no can defend.” (Movie trivia time…)
After a while of great playtime, she ran out of steam and just wanted me to hold her on the couch in the lobby. But not just any couch, mind you. It HAD to be the couch we had chilled on (“on which we had chilled?”) every day we had been there. So we got settled with her wrapped up in the sheet we got from the recovery room and I must admit, I don’t mind doing it. Unfortunately, we had been settled no more than 10 minutes when they called us in.
The traditional singing of Frosty ensued. They’re starting to get pretty good at it and CJ sang along. Of course, it’s all about making her going to sleep a good experience. “If they go to sleep well, they wake up well.” It’s kind of a mantra here. All these treatment places have traditions and ways for patients and their families to stay focused on the end like the bell that chemo patients ring at the end of treatment (Dog! Dog! Dog!) Anyway, the proton center has a gong and they make these calendars for the patients that count down to the last treatment and they made a beautiful one for Charlotte.
Side note: That was actually the second time Frosty had been sung to her today. The other ambu-guy, Doug, had an earworm going that was really odd. “Santa Clause Is Coming To Town” was going through his head so I decided to manipulate him a little. I told him about Frosty and CJ and I sang the first verse. Buy the time we were done with the first set of “thumpity thump thump”s, we were at the center and Doug had a new earworm! (how does one do an evil face?) Olive Sacs would have a field day with this guy!
Treatment #4 (29 to go) went very well and we headed back to the hospital.
Then the munchy flood gates opened! After we got resettled, I pulled out mac n cheese, she ate it. Mandarin oranges? Gone! Snuck in some magnesium citrate. No hesitation. She ate pretzels, brownies, an entire chocolate milkshakeshake, a tortilla and she took her senna with almost no trouble!
This is a tale of two Charlotte’s. The difference between three days ago and now is so profound, even Dr. Wolf was forced to reconsider things. He came by last night (does the guy ever go home?) to see about CJ and was very happy with her progress. The neck is still stiff but whatever was making her nauseous and not interested in eating has passed. Yea! Looks like we may get out tomorrow (Saturday).
(It’s now Saturday and I will see my wife in just a few hours!)
Accutane is definitely the chemo drug happening starting Sat (today). Dr. Wolff wanted to start it last night but there wasn’t any in the hospital. Also, they’re going to compound it so we don’t have to worry about cutting the top off the pill and mixing it with something. The MRI from just after the third surgery hasn’t showed up yet so it’ll have to wait until next week to do the comparison.
Off to left field…Watching Pres. Obama talk about the newest education initiative. Lots of big ideas and fancy talk but I have yet to hear him say much about music. When is everyone going to realize how essential the arts, music in particular, are to education? More and more research comes out all the time saying how important music is to brain development, socialization, gross and fine motor skills, you name it. Multiple areas of the brain are utilized when experiencing/making music, parts of the brain actually grow larger when one studies music. You want a cause to support, get school boards and other LOCAL government officials to make the arts a priority in public schools instead of always making them the first thing to go.
OK, I’m done. Have a nice day. Fly safe and comfy, Dear.

You're Awesome for Keeping Up with Us

Sunday morning and we're about to go over 76,000 hits. Don't you people have anything else to do? :-)

I KEED! I KEED! You're awesome for keeping up with us and we feel so supported even by just that number continuously rising.

The "Living With Cancer" Lisa Nichols Richardson Memorial Dinner went very well and at last count, we had a very rough total of over $1000 raised for Charlotte! Thanks so much to everyone involved especially Tina Adkins and Ann Mattio for asking us to be a part of it, constantly treating us as if we were doing THEM a favor. Rarely have I seen CJ overwhelmed by attention! :-)

A band called Fat Skippy played and they were pretty decent. Good party band if anyone is looking. Fatskippy.com (I think)

We had a very nice breakfast this morning at Cracker Barrel and Charlotte, as usual, had people literally gawking at her cuteness in her "Bald Chicks Rule" t-shirt, Ariel skirt, and Tinkerbell hat. The real finisher, though, was her pair of sunglasses. She started pulling this diva attitude thing that would have been really annoying normally but had us all in stitches this morning. It was like she had no time to be bothered with answering questions with anything other than perfunctory grunts. The princess had become a rock star.

And darn if the only ones who could get her to acknowledge them were the cute college boys in the rocking chairs out front as we were leaving! I need to make a trip to Green Top soon (to get my shotgun!).

Mommy went a little nuts (in a good way, I'm sure Dear) and cleaned the downstairs in a whirlwind burst of energy. All except for CJ's living room domain that constantly remains in a state of destruction. We'll get there on that. Looks good.

I am working on RNR stuff and updating the website (as you can read). For those of you with Facebook, please go to one of our sites to see what other events are coming up. I'll get more stuff up tonight.

Obama's 100 days parallels CJ's experience so we'll be marking the occasion at the hospital with methotrexate, vincristin, zofran, and poup. (Not sure of the spelling of any of those.) 100 days of diagnosis...wild.

At the benefit dinner yesterday, I had a profound realization of CJ's physical limitations when a bunch of the remaining kids, including Charlotte, went to play on the playground. I saw children younger and smaller than CJ running around on the equipment and throwing themselves around like nobody's business while at the same time, Charlotte, who still had a tremendously good time, had to move more cautiously. The best example was the slide. The steps were great and designed in such a way to be very easily navigated by everyone but the slides themselves were a different story. They had a handle at the top so children could grab it, swing under, and drop down the slide really fast. I saw several kids do this including the very young ones I mentioned before. Then as Charlotte got up to the top, it was a challenge just to sit down and get her to push herself over the edge.

I had gotten so used to the way she is, and have been so impressed by/proud of how far she has come, that I lost sight of how far there is to go. What's funny (odd) is that it didn't make me sad or feel sorry for myself or anyone else. Just kind of blew my mind in the way realizing the surreal nature of our lives tends to do. It also made me re-determined (real word) to help her improve physically as much as I can. As I've said, she's come so far already, I can't imagine she can't come that far again.

That's my mushy diatribe for the day. Get away from the computer and go enjoy the sunshine!


Well here I am at Romp n' Roll....(get ready for some FUN???) [Yeah, that's a little in-joke for all you die-hards out there!]

It has been a very good weekend after a very stressful week. Saturday was just an amazing series of events and everything worked out well. Roger already filled you in on the major details. I am very appreciative to Anne Mattio, Tina Adkins, and everyone else who helped to put the fundraising dinner together as well as everyone that came out to support it (and us).

Now I'm working on "stuff" at Romp n' Roll and trying to tie up a bunch of loose ends before the week begins. I keep jumping all over the place but at least I'm slowly moving forward.

Here are some ways that you (Charlotte's greatest fans) can help this week:
o I am still looking for someone who would like to design a simple poster or display board that we could take to fundraisers and events centered around Charlotte. It doesn't have to be fancy but it would basically have a few pics of Charlotte (we can supply those), a summary of her story, diagnosis, and treatment path, and then a place to display a calendar or list of other upcoming events. I'm thinking maybe something covered in fabric (?) and then we can use velcro to tack stuff up and trade out info. I would also love to use the board to promote great organizations that have already helped us like ASK, Connor's Heroes, Care Connection, etc. Anyway, if you have skills in this area (craftiness, graphic design, etc.) let me know. I did have one person with graphic desing skills offer up her services if someone was willing to help her.
o Register your child for a summer of fun (or birthday party) at Romp n' Roll! Yes, summer registration week is upon us and Roger and I will be busier than usual. A lot of you who follow us on this board are regular customers and we appreciate everything you do for us! One of the best ways you can continue to support us is by supporting our business or spreading the word. (Shameless plug, I know.)
Some other "official" fundraisers coming up towards the end of the week:
5/3: Qdoba Burrito Eating Contest at Willow Lawn. Register to enter the contest OR come out and EAT that night. Funds raised go towards Charlotte's health care expenses.

5/3: Need a bathing suit? Everything But Water at Short Pump Town Center will be donating 10-15% of proceeds from sales from 4-7 PM towards Charlotte. Go buy your bathing suit and then come to Qdoba!!

5/6: Glen Allen Golf (on US1 between Ashland and VCC) will be hosting an evening for Charlotte from 7-10 PM. Batting cages, mini golf, driving range...all with a portion of sales going back to help Charlotte. I think there will also be a longest drive contest and a closest to the pin contest.

So that's enough for now. I've got to get back to work and then go home.Thanks to everyone for your continued support and driving energy. You are really helping Roger and I get through this (and Charlotte too!!).

We are almost to round 3 which means that we will hopefully be near the halfway point of this marathon.

Happy day!Rachel