I told you August would be busy!

So the Wine Down Wednesday last week was a BLAST!  Final total for the fundraiser was $575 and it was a great way to get the word out about CJSTUF to a new crowd of people.  A huge thanks to Kate Hall from RichmondMom.com and the folks at Skirt magazine for sponsoring and promoting the event. 

As the saying goes, time and tide wait for no man so we are headed for MORE fun events this week.  As mentioned in the previous blog post, our Business of the Month for August is Mary Kay cosmetics and Nichole Frise is our Mary Kay representative.  Here are the details:

As you can see, there are opportunities to order online, in person (at the Fall Frenzy party on 8/12 or at the summer concert), or by phone. 

Speaking of the Summer Concert, make sure you have your calendars marked and join us for this great event.  We just added a new sponsor this week: Richmond BMW!  We are excited that they have contributed to our efforts.  Can't wait to see the sample car that they bring to the concert.

Finally, our PayPal account has been re-activated so the DONATE button on our website is fully functional again.  Spread the word!

With everything we have going on, you might be wondering how Roger and I are doing.  As might be expected, we are both extremely busy, easily working about 60 hours a week at the three jobs we are each balancing.  Roger and I can go for a day or two without even seeing each other.  Thank heaven for text messages and email!  I think we're both pretty exhausted and there just isn't enough time in the day. 

Thankfully, Roger's gig with Kings Dominion should end soon and we are slowly transitioning my Romp n' Roll duties to others.  We kind of see a light at the end of the tunnel (September) and hopefully things will calm down a bit.  Until then, we just keep pluggin'.  We are in the process of assembling a team of individuals who will compose our CJSTUF Advisory Council for the end of 2010 and going into 2011.  This team will work with us and our board to plan events, help with publicity, and help us organize and coordinate other volunteers.  Are you interested?  Some of you have already told us that you are. If we haven't called on you formally yet, don't fret.  BUT...if you want to make sure that we know you want to help, please go to the volunteer section of our website and become a part of our database.  I will be using this information over the next month to pull together some committees and get organized!

Roger and I had a chance to work a birthday party together today for the first time in months.  As usual, Roger was completely engaging and silly with the kids and we made a good team.  We had an interesting moment when one of the guests at the party turned out to be a little blonde girl of 4 or so named Charlotte...wearing a t-shirt with a purple butterfly design.  She really didn't look anything like CJ but it was a funny coincidence all the same. 

AUGUST is gonna ROCK!

So who is ready for a fabulous AUGUST?

Now that we have our non-profit status, we are gonna rock the tax-deductible world! Bring it on!

A few of you have asked about our "official" address for reporting to the IRS. Our official address is: 9 Slash Ct. Ashland, VA 23005. I am guessing that they will also recognize our PO Box 854 address as well.

Roger is working feverishly to repair our PayPal account (must send in needed documents, etc.) and then we hope to have the donate button and online ordering available for our CJSTUF products. Remember, you can still place local orders (or even out of town orders) and pay with a check. I understand that a Bald Chicks Rock shirt has already made its way to a cancer patient in Memphis! Awesome!

August seems to be skewing to the ladies with some of our upcoming events. This Wednesday (August 4th) is the Wine Down at the Wine Loft. $5 admission gets you a raffle ticket, great appetizers, and access to a fabulous cash bar with unique and tasty wines. Additional raffle tickets are available for $1 each and I know that Kate Hall from RichmondMom.com will bring some fabulous swag to give away. There will be a brief presentation on CJSTUF (courtesy of moi) as well as a presentation by the authors of Feng Shui Love, a new book that tells us how to keep the "love corners" in our lives uncluttered. Bring a friend! Bring a date! Bring your neighborhood! (FYI, while the event is geared towards ladies, men are certainly welcome.)

Our Business of the Month for August is Mary Kay cosmetics and Nichole Frise is leading the charge. About 40% of each sale will come back to CJSTUF so now is a great time to get pampered, stock up on some of your favorite products, or even get a head start on your holiday shopping. You can get more information about how to order on the Business of the Month section of our website. Nichole has scheduled a pampering party on August 12th so make plans to attend!

Nichole will also take Mary Kay orders at the Rompy's Summer Concert featuring VINX! on August 19th. A huge thank you to our sponsors, including:

Atlee Chiropractic Center

Jade Enterprises

C&F Bank

Michelle Donachy Photography

Stroller Strides of Richmond

Renovation Resources

Clearsight Ultrasound

The Caboose of Ashland

Battlefield Auto Service Center

Each sponsor will have a table distributing information and/or selling merchandise to raise funds for CJSTUF. The concert is FREE but we will be selling CJSTUF t-shirts and decals. We will also have kids activities, opportunities to donate blood to VA Blood Services, firetrucks and ambulances for the kids to check out (courtesy of the Hanover Fire and Rescue) and tons of other fun stuff. It will all take place in the Stonewall Square parking lot (home of Romp n' Roll Mechanicsville) on Thursday, August 19th, 5:30-7:30 PM.

Very soon, Roger and I will be purchasing our airline tickets to Chicago for the Chicago Marathon on 10/10/10! As football season approaches, don't forget to take a pledge form (downloadable from our Double Marathon page on the CJSTUF website) to all your tailgate parties and football watching gatherings.

I think that the VT crew is leading the charge but there are plenty of UM folks who won't stand for Roger to wear the Maroon and Orange (even though he would look cute in a turkey suit)! Furthermore, I know some Cavaliers who don't take too kindly to Hokie colors either. Roger's goal is to raise $10,000 with these two marathons. Let's make it happen!

A very good day

First off...very good day yesterday. Don't think I got irritated once that wasn't my fault. :-)Charlotte kind of slept in (9am) and I got some laundry done in the morning.We walked to the main hospital and caught the shuttle to the proton center. Walter Johnson the shuttle driver was on duty and I passed on what I had learned about his namesake. On the way back, I got to meet the famous Imelda the shuttle driver. She already knew CJ and knew about me from Rachel. It's a little disturbing when you're getting to know the drivers by first name.Everything was totally smooth at the proton center and we saw some of the regular crowd, Alex, Talia, and another new friend of Charlotte's named Halle. Halle is a kick! I understand she has had a very rough go of it post-surgery (she had a similar kind of PNET as Charlotte) and has been feeling very sick for quite some time. Well, just recently, like, this week, they finally found a drug that keeps her stomach settled and, according to her mom, she's a completely different kid (Where have I heard THAT before?). When I met her yesterday, she was vibrant, energetic and handing out food to people in the recovery area (that's OK) even though she was still NPO and must have been hungry, herself.
The treatment started at 10:30 and only lasted 30 minutes or so since they are done with whole head and spine and now will concentrate on spots in the brain. I didn’t go anywhere and read a little out of my newest acquisition, Inkhart by Cornelia Funk, a moderately OK movie was made of it but the concept is kind of cool so I had to make Aunt B buy it for me when I saw it in Costco! I didn’t realize there were three books in the series. Probably should have picked them all up.
Another nice thing about the proton crew is that they made these calendars for all the patients to cross off days until the last treatment and yesterday, I noticed they had hung up all the current calendars on the wall low enough so that kids could cross off their own days if they wanted. 12 treatments to go!
When Charlotte woke up, Halle came over to talk to her and Nurse Tye (I've since realized, SHE was the one who was handing out chocolates in the lobby THAT DAY!!!) had Halle bring Charlotte a huge chocolate muffin piled high with chocolate frosting and sprinkles. (I think Nurse Tye has Italian grandmother in her in that she doesn't seem to feel right unless people are eating something. She really seems taken with CJ)Charlotte usually only munches lightly on pretzels or crackers or other little snacks when she first wakes up but when she saw that frosting, she woke up pretty quickly! It was piled up on top and I'll bet there was nearly a quarter of a container's worth on there, no exaggeration. She pretty much polished off all of it and “helped” me eat the actual muffin. I'll admit. It was pretty darned good.Halle's mom was very much amused at her "reinvigoration" and let her run amok which nobody seemed to mind. I'm sure it's a very welcome change. I clearly remember the first couple days of feeling better after being whomped by the flu. It’s nice.Back to the main hospital on Imelda's shuttle and we (CJ) had lunch at Chick-fil-a. Yes, after eating that huge muffin, she was still ready to eat more and she did. It was so nice to have a "normal" lunch with my daughter. She even took off her hat and put it on the table. That's pretty big as my PSYCH 101 tells me she's feeling more confident.This has been slowly happening and I've seen her come out of her shell more and more, play with ("tolerate," more accurately) other kids, and do stuff like the art projects in the lobby. She even posed for, not one, but TWO pictures yesterday. One made its way into a frame colored by Mikayla.It was still pretty early and Charlotte was feeling tired so we headed up to the room. She didn't nap but chilled with nearly every book in the room and then a Sid The Science Kid video. (LOVE those!) I was feeling pretty toasted too so I tried to nap. CJ must have a problem with that because she constantly wakes me up to tell me that she finished another book or that the latest episode has ended and here's what happened...At least I got a little nap.Oh yeah, and she pooped! It had been 4 days and I was going to slip her a gastronomical mickey but before I could, she gifted me with a regal defecation!Another uncomfortable realization: It's bad enough to talk about CJ's bowel movements with everyone, but what does it say when one finds oneself discussing another person's "troubles" with that person, right alongside that person's family; and it doesn't seem weird to anyone there? Such is the surreal world in which we exist. People, kids mostly, routinely and unconsciously show each other their scars, compare central line ports and Hickmans, and talk about poop (grownups do it plenty, too). Back to PSYCH 101, it's probably a way to make things feel normal.
On a whim, we (me, Charlotte, Mikayla, and Halle) decided to have a Tinkerbell fest in the big TV room upstairs. The girls got pillows, blankets, and permission from their parents, I got the Tinkerbell movie (graciously lent to us by the wonderful Beasleys), and we headed up. But before, we did, I checked our mail and what should happen to be there but a package from the Schools family: a Costco gift card, some very nice cards and drawings, and a super cool (and timely) Tinkerbell “art portfolio” shaped like wings chock full of pencils, pens, markers, etc…It was a big hit and all the girls played with it while I flailed away trying to get the DVD player working (turns out I had the wrong remote).
I think there’s something of a power struggle brewing between friends of Charlotte. EVERYONE wants her to pay attention to them and that’s not a skill she’s developed yet. Rachel and I might have to run interference or set up individual playdates or something. I guess it’s a good problem to have.
We have proton at 10:30am again and then we’ll head over to the Children’s Center to start topotecan.
Updates as they happen (or at least in a day or so!)
p.s. I’m looking for singers for a song I’m doing at Rompy’s Summer Concert Series on Thursday, Aug 20. It’s one, moderately easy song and I need all parts. The rehearsal is Monday evening at 7:30 at Romp n’ Roll VA Center if you can make it. Part are already written out and it won’t take long to learn. Feel free to recruit! I wouldn’t mind a cast of thousands! :-)

A Big Day

Big day followed by big day.

Charlotte did very well yesterday considering her anti-social tendencies these days. The football player visit at the clinic ended up being very cool and video of the crew singing "Frosty" was on CBS 6 yesterday. She was singing right along.

Then we headed back to RNR to get things set up for the concert. We cut things a bit close but it all worked out. Even the weather cooperated!

When I couldn't be at the concert last night, CJ hung out with Uncle Kolbey or Mommy. She was very excited to see "Mr. John" John Robison who heads up Southern Horizon (my Civil War era band). When Rompy showed up, Rachel had to tell her it was Daddy before she would come close.

Rachel already gave you the numbers but it doesn't really tell the story of how cool the vibe was last night. Everyone was having a good time and I think we surprised the Chick-fil-a folks with how successful the evening turned out.

Thanks to everyone involved. Definitely a group effort. And today will be just as nuts!

Now for get well wishes to someone else: our wonderful utility infielder and ebullient front desk staffer, Margie Madrigal has been quite under the weather and is recovering at Henrico Doctor's Hospital. Please put her on the lists.

I'm including a photo of the 501st Legion of Vader's Fist, Rompy, Mommy, and the princess in front of the VA Blood Services bus. The storm troopers kept aiming their weapons at Rompy for some reason and Obi Wan tried to "fix" Rompy with his light saber!

A very good time and more will be had tonight. Hope to see you all there.

Update:

What a great party! I don't think Charlotte's birthday party could have been much better. Thanks to everyone who was able to come out and give the princess her send-off to TX. We had a GREAT crowd and I think even Charlotte had fun for a bit. She certainly ate a lot of cake!

There are many people to thank. First, thanks to Jeni for making the beautiful (and yummy!) Tinkerbell cake and to our NM/CO family for ordering the yummy DQ ice cream cakes. There is some (but not a lot) left over. That goes to show you what a crowd we had!

Next, a HUGE thank you to our staff, many of whom were there tonight and worked hard to make this party a success while being "off the clock". Roger and I appreciate the time and effort you all put into your work and especially the time you put in "unpaid" on Charlotte's behalf. The party would not have been quite the success it was without you. BIG thanks to Annette for guarding the desk, Anna and Lindsey for guarding the moonbounce, Anthony for doing a lot of cleanup and blowing up balloons, Kolbey and Annette (and Michael and Babz too!!!) for assisting big-time with cleanup, and I'm probably forgetting specific things but THANK YOU to all the Romp n' Roll VCM staff who were able to be there tonight. This warrants a further shout-out to Margie who is still very under-the-weather. We missed you this week and wish you a speedy recovery!!

Another big thank you to the family and friends who just helped with every little thing tonight (putting out napkins, blowing up balloons, taking out the trash...you name it!). Many of you have future careers leading romp n' roll parties...

Thanks for the cards and (yes there were a few) gifts. Some of you even got sneaky and brought presents "for Roger and Rachel because you only said no presents for Charlotte." Nice. Some of the cards that were handmade by the kids are really great! I got an extra SPECIAL present this evening. A bunch of you (and you know who you are) all chipped in and got me a FULL SPA DAY at Divas which I plan to use sometime after I come back from these first few days in Texas. What a very special and much needed gift. You bet I will use it!!! I understand Meredith was the Queen Bee organizing this effort but thanks to all who contributed as well.

So we are home. Charlotte is asleep. We are (mostly) packed. Just down to the final few items and then it's time to get a few hours' sleep before a big trip to the airport EARLY in the AM.

Our next post should be from TX.

Rachel

A Really Good Day

Today was a really good day for everyone, I think. We made it to church and then spent the afternoon catching up on various projects. I worked on some RNR stuff and even wrote a few thank you notes. Roger watched some tennis and golf and caught up on some emails, and Charlotte pretty much entertained herself with books, drawing, and (her new favorite) toting around daddy's shoelaces which she removes from his shoes. At least it's good OT practice.

We had a lovely dinner at the Smokey Pig (thanks to Gramps) and just got back.

We asked Dr. Khan if it would be possible to postpone the TX trip so that our first day in clinic (even though it wouldn't be the first day of radiation) would be the 13th. This would make coordination on all our parts much easier. He did email me back to say that would be fine. SOOOOO....here's the plan:

We WILL have the Rompy's Summer Concert Series on July 9th at 5:30 in the Chick-Fil-A parking lot. Give blood at the bloodmobile in Charlotte's honor (if you can...they'll be there from 3-8 PM), bring some non-perishable food for the food bank, or just come out for a good time. The weather and the music should be GREAT.

We WILL have her birthday party on July 10th at 6 PM as originally planned. Tinkerbell theme. NO presents. Everyone come to romp n' roll and wear pink and/or purple. This will be her big sendoff.

We will plan to leave for TX sometime on the 11th. I am looking into flights right now. We have a few folks investigating some free options for us too but if it doesn't work out, Roger and I will have many other opportunities to take advantage with our new "commute". I will try to help get everything and everyone settled over the weekend, stay for the first day of everything on the 13th, and then catch a flight back either late on the 13th or early on the 14th. We will switch sometime on or around the 25th of July.

So now Roger and I need to get travel plans together, make lots of packing lists, figure out where we will stay while in TX, etc. etc. etc. Please be patient if we are minimally responsive to emails, etc. at this time.

Granny and Gramps plan to stay in VA until after I return from TX so that will help with the transition too.

That's all for now. Her comes Monday. What a week this will be!!!!

Rachel

Low Key Days

A moment to breath between things.

Charlotte is hanging in there. She's definately starting to show signs of chemo side effects. Less energy, dark splotches under the eyes, etc... You wouldn't have known it by looking at the pics Deb took of her last night, though! As soon as they get all uploaded and to us, we'll share a few or you can go to Facebook and see them on my, Rachel's, or Deb Mead Harper's site.

Aunt Phyllis is back home and Granny and Gramps got here safe and sound yesterday.

Next week starts the next level o' crap. CJ finishes Accutane and starts on a new, far more toxic, drug. We have to mix it into applesauce or something but we have to wear double gloves and masks, prepare it in a room far away from food, have no air movement, click our heels three times and say, "Peace in our time" over and over again.

Rachel took CJ into the clinic this morning and it seemed to go well enough. Qdoba and Costco were also on the agenda. They saw her "other boyfriend" Cole at Qdoba which was a nice bonus.

Enjoying it while we can. The sequestering begins soon. Yesterday, she was saying something from the back of the car that I couldn't understand and she wouldn't say it louder even though I asked her three times. Finally I turned off the air and radio and heard her say, "Daddy, I don't like being alone." Where she got that or from where it came, I have no idea but I tried to reassure her several times that someone will always be with her. Could be time to have her sit down with Dr. Matt. Maybe it's the chemo talking. Not sure.

Don't forget the Bazaar tomorrow at St. Anne's Catholic Church in Ashland 10am-2pm.

Enjoy the heat!

Update:

If I were to describe the last few days with Charlotte in two words, I would say "low key". The good news is she seems to be weathering the current chemo regimen fairly well. No nausea, no vomiting, we FINALLY had a poop today (hooray for poop) but she's definitely been more tired and more likely to want to just "chill out". And that's OK!

We had a photo shoot last night with Deb Harper. She's a romp n' roll mom who also takes fabulous pictures. Some posts ago, we announced that she is doing "Pictures for Charlotte" where she will do a photo shoot with your family, edit the pictures, and give them to you on a CD in exchange for a donation in Charlotte's name. She has already booked 16 families (!!!) and last night it was our turn to mug for the camera. She has posted some of the pics on Facebook (they are awesome!!).

On a photography note, a Star Wars enthusiast group called the 501st Legion is going to be taking pictures (in costume, of course) at the next Rompy's Summer Concert Series. For a suggested donation of $5, you can get your picture taken with Darth Vader, storm troopers, or a whole host of characters from the Star Wars Brigade. Big thanks to Jim Woods, RMC soccer coach and RNR customer, for organizing this on Charlotte's behalf.

On a more clinical note:
Yesterday's and today's clinic visits both went pretty well. It was a busy day in the fishbowl but they still got us out of there by 11. We saw Reese and her mom the last two days. Sherry and I got to commisserate (sp?) a bit about the draining treatment regimens. Draining on our kids as well as us. We are advocating for some "adult life" services in addition to the fabulous child life services available at the hospital. I mean, why can't we get a little Tiki Bar put in the clinic? While our kids are getting their infusions, we can get ours...

But I digress...

After the hospital, we went to Qdoba for lunch and had a very chance meeting with Charlotte's friend Cole. He goes to Charlotte's preschool and they just happened to be getting lunch at the same time. They seemed to have a good time seeing one another and talking a bit. From there, it was a few more errands and now we are home. I'm quite exhausted and need a nap (or more caffeine?) and Charlotte seems to be keeping herself busy.

We found out that the Accutane will stop tonight. No chemo over the weekend and then on Monday she will need to go in for blood draws and THEN (assuming her counts are good) she will get the two meds (one oral and one IV) so it could be a L-O-N-G clinic day on Monday. At least they warned us this time.

Roger is working a MARATHON day at RNR with 4 classes in the AM, a birthday party, and THEN Kid's Night Out till 8:30. What a blast! I'm sure he will come home tired. My turn for the marathon day tomorrow.

Big reminder about the Home Based Business Bazaar at St. Ann's church from 10 AM-2 PM tomorrow. Big thanks to Jackie Plank for organizing this and all the vendors for putting it together. This is a great time to start your Christmas shopping or find the perfect birthday gifts for everyone on your list.

Gotta go seek out some mid-afternoon caffeine.

Update:

Ok, so if you didn't notice, Roger and I posted separate but similar journal entries only minutes apart. Yes, our strange synchronized brains work like that somehow...enjoy the weekend!

Rachel

Charlotte made her "Wish"

The last couple of days in the Nelson Clinic have been much smoother. We've been calling in ahead to give them "warning." Dr. Kahn wasn't there today so we didn't get to ask our latest questions but nurse April promised to corner him this afternoon and make sure he addresses them.

Saw Nile and his mother today. He was furiously playing video games in the waiting room. He looked pretty good.

Also saw Reese's Mom. She was back and forth taking loads to the car in hopes of going home. Hope it happens soon.

There were others we passed here and there who we knew or at least knew CJ. Drs., nurses, parents, staff. I actually am starting to really hate the fact that we know so many people there. As I like to say to those we meet, "Not that I don't want to see you but I sure wish it was at Ukrop's or something."

Charlotte is resting comfortably and watching Big, Big, World. I'm starting to notice "the look" creep back in. She's smiling a little less and looking more tired. Fortunately, the nausea and other problems haven't materalized yet. I'm sure they will be by soon. She's still eating so that's good. No poop for a couple days now. Can't be long as the topo-stuff is supposed to make her stool very, very loose.

Can't beat the weather the last couple of days. Tomorrow should be more like normal - Hot, humid, and icky.

Make-a-Wish is coming by soon so we'll be one step closer to that.

Phyllis is upstairs ripping carpet out of the closet. I didn't know there was anything left to do! We've got an electrical project for Grandpa next time he comes up. Our hall light looked like it needed a bulb so we tried to get the cover off to change it. I don't think we had done anything to that fixture in a very long time and it sort of fell apart when we finally got it loose. It's salvagable but I don't do electricity so Dad get's to! :-)

Got to chop a little wood yesterday. Might run out and grab some wood from a neighbour who just cut down a tree.

The business front is looking a bit better. We hit our overall membership goal, which earned the staff an ice cream party, and our Awesome Adventure Party promo is cooking along with great vigor. We've booked a large number of parties as far forward as mid-late 2010! There are some other great things coming up that will amaze and mystify you! :-) Stay tuned.

The Home-Based Business Bazaar is Saturday at St. Anne's Catholic Church from 10am-2pm.

Update:

So Charlotte made her official "wish" today. The Make-A-Wish ladies (Toni and Emily) came by to visit. Emily helped us fill out the "grownup" paperwork (releases and such) while Charlotte and Toni chatted it up. She told her that she wanted to go "Where Annette and her kids went". When probed for more clarification, Charlotte said "Minnie-Land" or "The place where the princesses are". AKA: Disney World! It was definitely her wish and her decision. Roger and I are both excited as well. We are tentatively looking at a winter date (Dec/Jan/Feb) to be solidified once radiation is over and we have a better idea of how her treatment plan will play out. We will get to stay at Disney for about a week and we will stay at the Give Kids the World hotel. It is a resort on the Disney property that was started by a man who wanted to make sure that kids with medical needs could have a great Disney vacation. They have a doctor and nurse on staff and (word has it) you can get ice cream sundaes 24/7. My kind of place. I think they also have characters who visit the hotel from time to time. Did I mention I'm excited? We are basically not getting a vacation this year (surprise) so this will be something special to look forward to. Once we have dates, anyone who is in the immediate area (or anyone who wants to travel to join us) is most welcome. I know we have a pretty big Florida fan club.

In other news, our nurse at the clinic called back with the answers we had about her protocol so that was cleared up. She will start a new medication next week (temozolamide) and will only be on the accutane till Sunday. Dr. Khan assured her that he is working on the insurance "stuff" and will update us when he has more news.

Charlotte is playing it pretty low key right now but managing to keep herself busy. She needs to poop but otherwise seems fine. She's gnawing on a HUGE apple as we speak. As Roger mentioned, we are getting ready to be pretty germophobic as her counts will soon plummet so be aware that playdates will be kept to a minimum.

Granny and Gramps will arrive tomorrow (hooray) and we will be on the official countdown to her birthday. Can you believe it's two weeks away?

Remember: two upcoming events for her birthday

1. The Summer Concert Series on July 9th (her actual birthday) in the Chick-Fil-A parking lot. Come out for the concert, donate blood, and bring food for the food bank.
2. Her birthday party at Romp n' Roll, Friday July 10th, 6 PM. All are welcome! We will have cake and some assorted food goodies, we'll put up the moonbounce and let the kids (and grownups) P-L-A-Y. No presents, please. We just want to celebrate HER! OH and the theme will be Tinkerbell. Charlotte wants everyone to wear pink and/or purple to the event so come decked out.

That's all I have to report for now. Some very good news.

Rachel

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

Every Day is a Bonus

We keep having big days but I guess they can't help but be big when every day is a bonus.

Yesterday morning as I was getting Charlotte ready for our day, I noticed something odd on her belly and found it was a tick! Rachel and I tried to get it out but it was embedded pretty deep so we resolved to get professional help.

So we went to the vet! I mean, who is better at dealing with ticks than a vet?

Well I actually had a breakfast meeting with Cate Newbanks from FACES of Virginia at the diner formerly known as Pete's and CJ tagged along. The tick wasn't going anywhere, the vet is literally right around the corner, and she wasn't showing any symptoms of anything, so we had a very nice breakfast. Charlotte had pancakes (surprize!)

We went to the vet right after breakfast and although they were sympathetic, they weren't comfortable working on a human. The chemicals they use on animals aren't appropriate for children.

So I called the pediatrician and they fit us in as soon as I got there. They weren't incredibly busy right at that moment so it was convenient for everyone. We saw Dr. Map (not kidding). I don't think I had ever met him before. Charlotte wasn't very interested in cooperating with anyone who had a stethoscope around their neck so I had to pick her up while Dr. Map worked on the tick.

It took a moderately long time and CJ was quite the champ despite her anxiety. We counted to 20, sang the ABC song, and spelled her name. I could tell it hurt a little as she counted/sang/spelled through gritted teeth but she didn't stop. I was very proud of her.

We didn't quite get through "Reynolds" when he announced success. He got the head, hooks, sucker and everything.

For the record, Dr. Map recommended Vaseline or nail polish to get the bad boy out. Unfortunately, we had probably killed it with our attention so it wouldn't have worked for us. It's a very bad year for ticks already so everyone check each other thoroughly after being outdoors. (I have the image of monkeys grooming each other in my head.)

So after that, we ended up at Romp n' Roll to bring lunch to Mommy who had taught the morning preview classes.

That, by the way, has been a tremendous success attendance-wise. Very exciting.

I left CJ at RNR with Rachel and came home to do some work. Aunt Phyllis came in from Florida (Rachel and CJ went to pick her up at the airport) so we have our latest in-house support person. She wasn't here an hour before the reorganizing glint came into her eye. She'S REALLY good at that sort of thing.

Then I headed back to RNR to teach my evening previews. The posters for the concert series came in and man! do they look great!

Today is another big day with a meeting with Drs. Kahn and Chung at MCV to discuss latest protocol options (we had a deep, emotional discussion about that last night), Camp, and the 1st Concert Series concert (which might be moved indoors due to weather. Either way, it'll be a hoot with Clay Mottley and the Taters!)

Rachel and I will be first in line at the blood mobile which opens at 3pm.

As always, we'll update everyone as to what we decide for our next step. Our positive energy need level is back up orange. That indicates a higher level of need for thoughts, energy, prayers, meditations, visualizations, puppies, kittens, balloons, chocolate, ice cream, chocolate ice cream, etc...in other words, we're feeling kind of down right now.

Not necessarily important to tell us. Just do it. Please.

One thing CJ is not lacking is cuter-than-all-getout clothes. They just keep appearing. And we keep putting her in them. She keeps being cute.

While I mentioned the amazing things going on throughout the CB community, there are still many sorrows being handed out. Please keep those in your thoughts too.

Thanks,
Rog

p.s. For those not connected to us via Facebook, there are several with which we are associated. Rachel and I both have our own, there's Get Well Charlotte, and Romp n' Roll at VA Center. The last two you need to "become a fan" to join. Just in case you didn't already have information overload.

Update:
Rompy's Concert Series is currently rockin'! The Taters and Clay Mottley are jamming inside romp n' roll. There was a threat of some summer storms so we moved the concerts inside "just in case". Sun is shining all the same but no matter. We've had a great crowd and lots of fun!!!

In addition, over 25 people have given blood at the bloodmobile today (include Annette, Michael, Babz, and myself). Roger tried to give but his blood kept clotting up...oh well. Final count on the blood drive is 25 came in, 19 gave and 2 of the 19 gave a "double dose" through a special system where they can get double the usable blood without completely disarming the donor.

Thanks again to everyone for coming out for the fun!

So, I'm sure everyone is chomping at the bit to find out the "news". Well....let's just start by saying it was one of the more frustrating trips to the hospital. We were told there was an appointment at 12 PM with Dr. Khan and Dr. Chung but we were supposed to meet up on the 6th floor (neurosurgery). We did as we were told and finally about 1 PM met with a DIFFERENT doctor who didn't really know why we were here.

FINALLY, Dr. Chung arrived but while he claimed to have been following Charlotte's case and be "in the loop" about things, he didn't seem to be able to tell us much about what we would do for Charlotte's specific situation. We asked him about proton beam radiation options and again he was pretty nondescript and didn't seem to have an opinion or much information. Basically I got a "Radiation 101" tutorial but nothing specific with a timeline or other information regarding Charlotte's treatment plan.

Finally, I was pretty abrupt and asked some pointed questions about 1) Where Dr. Khan was in all of this and 2) Why we weren't getting any answers when we had felt this HUGE sense of urgency since the news of tumor regrowth for us to get things DONE. In short, he couldn't really help us and he tried to page Dr. Khan. After about 2:30 (yes, we had been there since NOON), we settled on going down to the clinic to search out Dr. Khan and see if we could reschedule and/or find some answers.

Once we got down to the clinic, I explained why we were there and they got Dr. Khan for us. Apparently there was a wonderful series of miscommunications. Dr. Khan wasn't planning to come to the meeting while we were expecting him and (blah blah blah). I expressed my concerns and he was very understanding. Here is what I HAVE learned:
1. Dr. Khan just received the new protocol from Dr. Wolff at MD Anderson. They have some new ideas and information which he will share thoroughly with us once he reviews it and gets some clarification/follow up questions answered (hopefully by Monday).
2. Charlotte will have a spinal tap sometime next week (probably) to insure that there is no tumor cells in the spinal fluid. She will also probably start some oral chemotherapy next week (based on the protocol).
3. Based on this plan, it looks like MD Anderson is recommending localized radiation which Dr. Khan is thinking towards proton beam radiation, mainly because it offers the best chance at minimizing harmful effects of radiation while allowing higher doses of radiation to be used on the tumor. Of course, now we are going to have to figure out WHERE we will get the radiation done because it is only at certain places in the country. MD Anderson is one option but we know that they are out of network for our insurance. We might be able to find an "in-network" option.
So that's where we are. We don't have a lot more answers and it was a rather frustrating day but at least it's a tiny step in the right direction.

I gotta go clean up the gym and head home so I"ll sign off...

Rachel

Staying Busy, Fundraising Update

Charlotte had a great day yesterday and a very good am this morning.

Yesterday consisted of CJ going out and about with Aunt Amy on her last day here. They went to lunch at (guess where?) and then Barnes & Noble's to read stories and play with the train table, then back to (guess where?) for milk shake shakes. Then they came home and hung out here until Rachel and I came home.

Rachel worked at Romp n' Roll and I went around putting up posters for the concert/blooddrive. I was getting it done pretty well until I got a call from Rachel letting me know there was something wrong with the AC. So I headed home to gather up the fans and then to the store.

One side seemed to be working properly but it's not enough for the whole store so the art room was sweltering. We called the AC company and they're supposedly sending someone out today. Sure hope so.

So I got to go back out to deliver some more posters/flyers to friendly local businesses.

Then it was back to RNR for our big staff meeting to tell everyone about the new BIG IDEA! which is a new level of Birthday Bash called an Awesome Adventure Party and the accompanying promotional offer.

I feel it was a great meeting I was pretty excited about things afterward. When we got home we just chilled the rest of the evening, talked to Aunt B on the Hopecam, watched my one television guilty pleasure (Primeval from the BBC) and went to bed at a relatively normal time.

This morning, Amy left :-( and CJ and did all kinds of stuff. We took Noah to the vet to check on the gash on his head and get his shots current, we went to the Ashland Library to vote and got to hear a little of storytime with Jamie, Larson, Alexander (but not Bob) and the Morris family, found an amazing book called, Imagine A World with some very good perspective pictures kind of ala Escher, stopped off at the Randolph-Macon College Bookstore to pick up bracelet money (almost $400! And of course they fawned all over her), and then went to Ashland Breakfast and Lunch because CJ wanted pancakes. Unfortunately for us, they don't serve breakfast past a certain hour. BUT! They pulled out the batter just for Charlotte and she got a couple of pancakes! Thanks to Renee and all there.

Now we're home waiting for Mommy to come back from the first day of camp! From what I heard, it was tremendously successful. I have to cover front desk for an hour or so and then teach a couple of our Week-Of-Free-Preview classes.

The weather for the first concert on Thursday is looking like there might be an isolated t-storm here and there so bring an umbrella just in case! Shouldn't be enough to drive us inside but we'll be ready just in case.

Well Rachel is here so I'll sign off. Just letting you all know the initial response to our Amazing Birthday Bash deal has been very strong already.

Keep cruizin' the CB sites. There are lots of amazing stories goin on!

Rog

Another busy day! I spent the morning at Romp n' Roll camp. Our staff was awesome and the kids had a great time! The summer is off and running.

We finally got the AC fixed (hooray) so all is well with the universe again. Not too much damage (physically or financially) so that is good as well.

We wished Aunt Amy farewell as she returned to her family in Ohio. Amy and I met in grad school at ASU and while we haven't stayed in very close touch since graduation, we have certainly remained in each other's hearts. I sincerely value her friendship and it was so good to see her again. (HUGS to you, girl!)

Charlotte has been rather moody the last week or so. Her independent streak has been very strong lately. She has definitely preferred more independent (rather than social) activities and even seems to shy away from some social engagements. I certainly don't blame her. Sometimes I think the attention is a bit daunting. We're just trying to read her moods and let her take things at her own pace.

We have some new information regarding our treatment direction. We will meet with Dr. Khan and Dr. Chung (the radiation oncologist) on Thursday to go over some options for radiation including the timeline. Dr. Khan also indicated that he is in communication with Dr. Wolff at MD Anderson and we should have a report from them soon.

Meanwhile, I thought I would take some time to give some thanks and offer some updates on our various fundraising efforts. Since our first "official" fundraiser with the Head Shaving Party, we have had over $14,000 raised on Charlotte's behalf. This includes money raised for:
o Prayers for Charlotte Bracelets
o the Head Shaving Party (over $5K!)
o Everything But Water and Five Below events (still waiting to receive some more money from the additional Five Below sales)
o 50/50 raffle at the Ashland Coffee and Tea concert
o Qdoba Burrito Eating Contest (final total on that event = $975!)
o Glen Allen Golf Fundraiser
o A bake sale at Trinity Church in Fredericksburg (our "old" home church) organized by the Middle School Youth
o Pancake Dinner held by the Middle School Youth of St. James the Less
o Money collected from various kid's birthday parties in Charlotte's honor (in lieu of presents)
Not to mention the various, random, and very valued donations that have come to us from friends, family, and strangers. Some, like the Head Shaving Party, are rather large. Other fundraisers have produced small sums but every little bit counts. We have paid out plus or minus $10,000 already in medical expenses and travel expenses for Houston.

We are also incredibly grateful for the gift cards for restaurants, cooked and prepared meals, small gifts, and homemade treasures that have found their way to our home. All of these things have helped make our life a little easier at this time. I'm just saying this now because I know that some of you have received personal thank you notes from us. Some of you will probably receive more down the line. And some of you will never receive an actual "card" that says THANK YOU. But please know that our "attitude of gratitude" (as my step-dad likes to say) is ever-present at this time. We are so grateful to our friends, family, customers, the community of Ashland, and all of those people around the country and the world who are supporting us at this time.

If our treatment regimen continues as we think it will, there will be more medical bills (thanks to idiotic insurance). Each round of high dose chemo and bone marrow transplant stands to cost us (out of pocket) up to $10000 so you get the picture.

Not to mention that anything that might be "left over" when all is said and done is going straight into the Foundation that Roger is developing. More on that to come but let's just say that we are already working on ways to "pay it forward" when we're done with all this mess.

Word on the street is that Make A Wish will be coming our way to interview the "Princess" in late June. We will see what she has to say. When we asked her where she would want to go if she could go ANYWHERE she wanted, she said "Carter Park" (which is the park in our neighborhood). All we tell her is to DREAM BIGGER...MUCH BIGGER!

So some big events coming up in the next few weeks:
On the treatment end, we will hopefully get some new direction on dates for radiation to start. That will likely be outpatient for about 6 weeks.

Fundraisers:
o Come on out to Rompy's Summer Concert Series this Thursday for Clay Mottley and the Taters. 5:30 PM at Virginia Center Marketplace (in the Chick-Fil-A parking lot). As Roger says, we're collecting "Food for the Food Bank, Blood for the Blood Bank and $$ for CJ's bank" We will have another concert on July 9th and ANOTHER on August 20th so if you miss the fun this time, there will be more fun to come.
o The Home-Based Business Bazaar will be June 27th at St. Ann's Church in Ashland. Come out and support some of our friends from Pampered Chef, Arbonne, Avon, Happy Gardener, and MORE. They are selling their wares and donating a portion of their proceeds back to Charlotte. A silent auction will be held as well. Start your Christmas shopping early!
Finally, some folks have asked about Charlotte's birthday (yes, it's ONLY a month away!!!). First of all, she does not need ANY presents. We have a house full of goodies so gifts are completely unnecessary. Any celebration that will be had will be a complete and total celebration of her and her LIFE. We have not made any definite plans yet and we may just gauge things based on how she is feeling and where her treatment regimen is in about a month. It is very possible that we may delay her "official" celebration by a few weeks. As usual, we will keep you updated.

Ok, so that's all I have to say for now. I have a boat-load of paperwork to siphon through and as it's already almost 9 PM I can only imagine how un-productive I will continue to be. Sigh. Where does the day go?

Signing off...
Rachel

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

Surgery

Charlotte went in to surgery at 10:08am.

We woke up at about 4:30am and got to the hospital before 6:00. The valet parking didn't open until 6:00 so we had to wait. In that time I could have parked in the garage, got validated parking, and been upstairs getting ready for the big day. But then I heard the road construction made it very difficult to manuver so it looks like we went the proper route after all.

As we got all ready for the MRI, Charlotte started getting antsy so we watched Caillou videos on the iPhone. Paid for itself several times over as far as I'm concerned.

When we went down to the MRI room, we weren't there long before the anesthesiolgist (woah! There's a $10 word!) showed up to administer the happy juice. At first she didn't want to let them at her central line so I distracted her with pics on the phone (more added value) while they hooked her up. In about 30 seconds, she got this very silly grin on her face and thought everything was extremely amusing!

Then they picked her up, took her in to the MRI room and she was gone. It all happened so fast I didn't get to give her a kiss but it was ok. Rompy, Mickey, and the hand-made pink and purple blanket (I can't remember who made it for her off the top of my head) are with her. Dug the Up! dog waits patiently with us here in the [SQUIRREL!!] 7th floor lounge.

By the way, CJ was very happy to tell everyone that she has TWO dogs now!

So after they took CJ, I found myself without a lot of direction since they sort of mentioned where I should go to wait only in passing and I was a little distracted. So I hung out there for a little while and talked to a young man and his mother waiting for an MRI. Very nice with the "Yes sir" and the "No, sir" and all that. Even with the tiff we're having with Caringbridge, I told them about CB and Hopecam.org. Turns out he is one of triplet boys and has a younger sister in Romp n' Roll's age range. So of course I gave mom my card. (Always workin' it)

So I eventually made my way down to the ground floor waiting room, got a bite to eat and settled in to wait. I promptly fell asleep. My buzzing phone woke me up - Auntie 'Retta was calling trying to find me. Ends up She, Grandpa, and Juanita Bonita were looking for me all over. They were just a floor above in the 1st floor waiting room.

I'm spoiled with the 7th floor so the other waiting rooms just wouldn't do. I pulled Loretta up with me and started the sign-in process early. I got the sign-in sheet filled out and saw plenty of folks who remember Charlotte including Heather from Child Life. They seem to be all ready for us.

CJ will be in room 614 of the PICU which means for now, kids can't visit and we have to space out the number of adults but after a day or so, we certainly want people to stop by. It can do nothing but good for her.

So now we're camped out, waiting for word. They are supposed to call anytime now with an update.

"Charlotte's Devon" is headed over to have lunch with us and Dean from Glen Allen Golf just called to let us know the total from the fun-raiser was $140! Thanks to all who came out.

Just heard from Nurse Janice in the OR. Charlotte is still in surgery and things are going as expected. If she's still in surgery at 2:00 they'll call with another update.

More details as they come up.

Latest update:

They were finishing up and might be done within a half an hour. Charlotte has been stable the entire time and everything looks good so far.

I don't think I'll be making it to Romp n' Roll this afternoon. Anyone in my Wednesday classes will be in the very capable hands of Miss Samantha. (She's been doing so well covering my classes lately, I think I might be losing some of my kiddies to her classes!)

Thanks to Devon for a very tasty lunch.

Stay tuned...

She is out of surgery and looking GREAT!
She is still a little loopy from the anesthesia but that's mostly making her act very funny more than anything else. She is gradually getting tubes, a-lines, ivs, etc. taken out. She is talking and moving all her limbs. Looks a little pale and will probably have a small transfusion but overall we can't complain.

Dr. Tye thinks he got a LOT of tumor. No word on percentage but he is reasonably confident that he got a very large amount. He said the pathway was really clear and he was able to get quite a bit. She will probably have an MRI tomorrow or Friday and they are going to aim for both head and spine to get a full picture.

Her tumor samples have been sent off to the MCV lab as well as a lot that will be going to Houston by Friday.

We have a nice room in the PICU...actually one of the ones we had last time with lots of space and a great, sunny view of the capitol and the governor's mansion.

I think that's all we have to report for now.

Thanks for all the prayers and support.

Rachel and 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.