Charlotte has had a rough few days.

Roger here. Charlotte has had a rough few days. I think the various drugs she has been forced to take have finally caught up with her. She had been doing so well and everyone had been so amazed at how well she was tolerating the chemo, it was hard to imagine they were actually working. Guess we can put that notion to rest.She has been constantly lethargic and easily fatigued, hardly eating or drinking anything, and not really wanting to go anywhere much (she did, however, seem to perk up when she found out she was going to Anja's. Thanks Meredith). She's been very patient with Mommy and Daddy dragging her around to various places mostly because we had to when all she really wants us to do is hold her.She's had a few bouts with moderately severe abdominal pain, which we believe to be not much more than really bad gas but when she's writhing in pain and crying so hard it scares you, it's hard not to panic. We've had to resort to infant 101 training and bicycle her legs and rub her belly to get relief going. It seems to work.Yesterday was very busy as Rachel had to teach in the morning and I had to dress up as Rompy for the Mascot Mile at Children's Hospital in Richmond, zoom up to Short Pump Middle School to drop off the outfit to the Romp n' Roll tent at the Touch-A-Truck event, head down to John Tyler Community College for a duo Southern Horizon gig with John, then get back home in time for Mommy to get to RNR for a Birthday Bash.Rachel was pretty beat from the morning classes so I did the BB instead (she has covered plenty of classes and BB's for me and will do so again so it wasn't hard to decide). It was a Superhero Adventure Birthday Bash and although there were chaotic parts, it was a great time. I got to wear a cape the whole time and at the end, at least three kids were already browbeating their parents to have their parties at Romp n' Roll. Gotta love it!Mommy stayed home and took good care of Charlotte making sure the IV fluids pump was set up and running correctly. It didn’t take long for her to zonk out last night after I put her to bed. I don’t think she even made it through two books.Charlotte got up about 9:30 this morning, after I left to go teach and Rachel brought her down to the store so we could all go to lunch to speak to a friend about getting Charlotte's Thumbs Up Foundation rolling at a meaningful pace. We went to Panera (yum!) and although the meeting ended up not happening, Rachel, Charlotte, and I actually got to eat lunch together. Kind of a rarity these days. We jotted down a few more ideas about CJSTUF and we got CJ to eat a bit. Granted it was only a container of apple sauce but I was very happy about it. Tonight, after we got all her meds and fluids going, I got her to eat a container of Mandarine oranges and a half of a Honey Stix cracker. Not a 7 course meal but, again, something. Personally, I think she has gotten over the hump of this round.We had our Rompy's Rainbow Station Adventure Party tonight (open house, really) and CJ came down for the first part. She didn't do much and mostly she wanted to watch videos but at one point she asked to go into the gym where I tried to referee the mayhem of a gym and art room packed to capacity with kids and grownups.I think it was a great event and both RNR and Rainbow Station got some business out of it. We're thinking of making it an annual event. Don't see why not.Chick-fil-a gets an extra shout out because, with all the stuff going on yesterday, I forgot to go pick up the chicken nugget trays for today. D'OAH! Remember, they're closed on Sundays. (I think there's a song in there somewhere). Well Pam took pity on me and actually let me in on a Sunday(!) to get those trays. Yes, she was in the neighborhood and all that but it certainly wasn't something she had to do and because of her kindness, we didn’t have to go out of our way to get trays from Food Lion or Kroger that would not have been what we wanted. So go to Chick-fil-a at VA Center Marketplace and tell them how awesome they are.Tonight, CJ sat with me on the couch to see the end of the Denver Bronco/New England Patriot game (GO BRONCOS! 5-0 even in those godawful hideous uniforms!) and then slowly faded as Mommy and Daddy watched “The Soloist” On Demand (Wonderful movie). Just brought her up to bed and here I am.Side note-The Randolph-Macon College field hockey team won their fifth game in a row yesterday 5-1! Congrats ladies. Sorry CJ couldn't be there. We'll try for the next one. I would like to encourage as many Richmond area fans of Charlotte to try to make to a game. Check out www.rmc.edu and click on athletics for more info.Now about that Mascot Mile…I was placed at the first turn on the grass right by the traffic cones holding up the big sign with the arrows on it. I was being Rompy, waving at passing cars and pedestrians, and waiting for the kids to come running my way so I could bark my encouragement as they went by. The announcer said, “Go!” and they were off. Unfortunately, it doesn’t seem as if they were told to stay on the grass because as soon as they came to where they were supposed to get onto the grass and head my way, they simply stayed on the road around the parking lot and never even came close to me. So much for that. I’m very glad I went up to the start/finish line area to schmooze and pose for pictures or I would have thought it was a tremendous waste of time.The weather’s cooling off and I’m looking foreword to getting under the big comforter! Nighty-night.

An Update

Very good day overall yesterday.

Charlotte slept in a bit and, when she did wake up, took her accutane in the morning with only a minimal of drama. It DID take a little piece of chocolate to seal the deal but you know what we say about chocolate...

Our appointment for the "weekly see" with Dr. Mahajan was at 11:30 so the New Mexico contingent came by right at 11 and took us over. Aunt B came into the exam room with us and Uncle Ted and Aunt Lynn stayed in the lobby. Rachel had drawn up a small list of questions/concerns to cover including what chemo drug to have CJ on after the 2 week regimine of accutane ends (today). It's obvious that Dr. Mahajan and Dr. Wolff don't see entirely eye to eye so decisions are made with a certain amount of blood loss. The proton beam protocol is still so new and some of the chemo agents have been out such a short time that they are in the dark about many of the radiation/drug interactions. The worst part is when Dr. Mahajan says, "We just don't know." It's honest and makes me understand their hesitation but it's still an urgh. So I guess I'll be the squeeky wheel today, trying to get someone to make a decision because what is completely unacceptable is Charlotte NOT taking anything because they "just don't know." Dr. Mahajan reiterated what I've heard many of her team say about thinking "outside the box" but I think whenever they look outside the box, they feel like they're flopping around like fish outside the aquarium. Very intelligent, well educated, and highly compensated fish. Fish who drive BMWs and Mercedes 700 class sedans!

We also talked about possibly squeezing the last treatment (which is on Monday, August 31) into the week before so we might be able to come back that weekend. I’m pretty committed to CJ getting all of her treatments so just lopping the last day off is not an option for me. Dr. Mahajan said they could possibly do two treatments on one day but that would be two happy juice sessions which would be pretty hard on her. Something else for her to ponder.
Overall, she was pretty happy with Charlotte’s progress.
After the “weekly see” we went back out to the lobby to wait until they called us for the treatment. The appointment was supposed to be at 1:30. At 2:10 or so, I finally asked one of the medical professionals to get me an update. Apparently, it was either a bit beneath her or she has a shorter memory than me because after she went into the back for a bit, she came out, walked right by us, didn’t acknowledge us, and went through another door on the other side of the lobby. Finally, I saw Trish from CJ’s team walking by and grabbed her. She went back and it must have been time because she and another nurse both came out to get us. It was 2:35. CJ wanted Frosty sung which I guess has been something of a rarity the last couple weeks so they were happy to oblige. Any excuse to hear CJ do her famous “STOP!”
One humorous observation is the occasional nurse/doctor/technician who just obviously doesn’t feel comfortable singing with the rest of us. Yesterday, one nurse actually tried to separate herself and stand all the way across the room near the door. I DON’T THINK SO! Lyrics were thrust into her hands and she at least gave it a go. Once CJ gets into the gantry, she’s a queen. Maybe that’s why they’re behind so often. I’m sure they treat all their patients that way.
After handing over CJ, we went out to get lunch. I tried to navigate but I ended up making us drive 10 miles to go 2. We ended up driving through the medical center to go to Chipotle (your choice of pronunciation) just down the street from the proton center. Mmmm! After not eating much all morning, it didn’t take me long to polish off the entire burrito.
CJ had just come out and was sleeping in the recovery room when we got back. Aunt B and I had a great little “small talk” conversation waiting for Charlotte to wake up.
Here’s an Awww moment…I pick on my sister quite a bit. I’m the little brother, it’s my job. But I’ve said it before, Becky quite often gives me fresh perspectives on things and I’m sure she usually has little or no idea she does it. My brother Vance does that too but he’s much more obnoxious about it! ::-) While I’m here, I should also talk about Uncle Terry (Ted, Tedricks, Pieface…) and Aunt Lynn (Lynnard). They’re sister and brother too…not in that order…then again… I admire them both very highly; mostly for how hard they work and their dedication to the family. The whole family is that way. My mom was pretty formidable when it came to defending her kids and my Aunt Moreen raised two pretty awesome kids as a single mother. My Aunt Debbie passed away relatively young and dealt with kidney transplants, dialysis, needles, and all the typical medical indignities. Hell, Grandma Jay is still plugging along in spite of a stroke she had several years back. She is one tough bird! It all makes my family pretty strong. We’re quirky but strong.
Back to our story…Charlotte work up slowly and was kind of surly until we got back to The House and got some Chocolate milk into her. She perked up after that and then promptly peed on me. She was sitting on my lap and her diaper must have been more full than I thought so all of a sudden I felt to wetness! Not too much of a mess and it was a great excuse to get her into one of the MANY new outfits the NM contingent got for her. She was pretty damned cute in the new pink dress.
THEN it was off to Costco for the traditional pizza and ice cream. I just wanted to get dinner but Aunt B and Aunt Lynnard kept finding stuff they or we had to have. I don’t mind. I got the second season of Flight Of The Concords out of the deal!!!

Oh yeah, I found out that they were trying to get us a limo for our date night but the Tim McGraw concert at Reliant Stadium snapped them all up. What a great thought. Thanks guys!

Charlotte was definitely feeling better. We got pizza and after I took off the cheese and scraped off plenty of sauce (real and imaginary), she ate more than her half of the slice. Costco slices are huge! She also ate all the ice cream I gave her and finished off a good handful of animal crackers before bed. She even took all the accutane as long as I put drops of it on her animal crackers. Go figure!
Need to mention that to the nutritionist at our appointment this morning.
Then she proceeded to stay up until 1:30AM!!! What did Aunt B do to her?!?
Time to get her up. May not be pretty!

Another Good Day

More FUN facts about proton radiation therapy:

1. Protons are injected via a vacuum tube into a linear accelerator and in a few microseconds, the energy equals 7 million volts!!

2. The energy increases to 70-250 million volts which allows the beam to enter the body at various points.

3. Protons move through a series of magnets that shape, focus and direct the beam.

4. At maximum energy, a proton beam travels 125,000 miles per second (or 2/3 the speed of light)!!!

5. From the Hydrogen canister to the patient, a proton travels 313,000 miles!!!

And we thought the trip from Virginia to Houston was far!
***************************

Another good day. Today started out early because of our check-in at the clinic with Dr. Wolff. He is very happy with her progress so we are down to 1x/week checking in with the radiation oncologist and 1x/week checking in with the the oncologist. Plus the daily proton treatments. We will discuss further chemo next week and he is going to begin working on her plan for when we leave and go back to MCV.

The hair just keeps falling out but in typical Charlotte fashion, it doesn't seem to bother her. She was really hungry when we got out of radiation today so we stopped at MDA for a snack (cheetos and apple juice) and then headed back to RMH. I cleaned our room and did some laundry and Charlotte was actually pretty social today.

My friend Kim sent her a farm animal lacing set and she is LOVING it. A good replacement for those shoelaces. Her OT practice is going very well and today she spent a LOT of time lacing and unlacing the horse and the pig. The other kids were really interested in what she was doing too and we had a bunch of the RMH kids working on their fine motor skills. I'll just hang out a shingle and open a clinic here.

The evening was fun because the University of Miami Alumni
Association (Houston Chapter) hosted an ice cream social for the kids here at RMH. Got to meet some fellow 'Canes (none of whom went to school during mine or Roger's tenure). Lots of recent grads. Charlotte ate a LOT of ice cream (chocolate in a pink cone with sprinkles!! and she socialized with everyone.

By the way, she keeps telling everyone "I have two boyfriends...Larson and Wyatt." Depending on the day, she changes who her "favorite" is. Of course, if anyone asks if she has brothers or sisters, she tells them that her two "brothers" are also Larson and Wyatt so I guess she's a little confused. I get lots of weird looks when she says she has 2 brothers but I say she's an only child. She also says she has "two girlfriends" but doesn't say their names.

She also has developed this adorable habit of getting my attention by saying "Tweet Tweet mommy!" That means she wants to tell me something. She's my baby bird!!

So we are settling in for the evening and getting ready for the family to come tomorrow. Hooray! I know she will be very happy to see Daddy and we are looking forward to the visit from Aunt B, Aunt Lynn, and Uncle Terry too.

OH! I learned a very good thing tonight: proton therapy patients get to stay at RMH for up to 60 days before having to vacate so we won't have to worry about appealing for more time or finding another place to stay. I also talked to one of the other moms whose kid is getting proton radiation and she said that their last treatment was supposed to be on a Monday but they are "concentrating" his last 5 treatments so that they can finish on a Friday. I'm going to have to ask about that as her current schedule has her finishing on a Monday. It would be really nice to finish on a Friday and spend the weekend packing up for home...

Lots to do and must rest too (hey, that rhymes).

Happy weekend, y'all!

Rachel

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.

This One Will Be Another Epic

Wow! Y'all had to wait nearly two full days for an update. Sorry it took so long. This one will be another epic. In Word it was 4 pages long!

Just got done trading harrassments with my wife so now I'll concentrate on the update.

To start off, Katie Udell down under, the t-shirt was made by the mother of one of our friends and Romp n' Roll regulars, Megan Blake (also, and most unfortunately, another Caringbridge member). I told her she could start a little cottage industry making those. By the way Megan's mom, any way we could get a new pink one in a 5-t for Charlotte (her's is getting a little grimy and she loves wearing it) and a matching one in Large for a woman here at The House? I'll GLADLY pay for both. I'm telling you, they would be lining up if they could get them out.
OK, wow, where to start. Yesterday, we sort of slept in and still noodled around part of the morning after we got up. I was going to try to go the big dog show that was going on at the Reliant Center just down the road. If figured CJ would like it and I knew I would totally love it. Especially if I got to see some of my favorite breeds up close.
Things were progressing nicely, we were getting dressed, snacking, reading, watching videos…Then I tried to get CJ to brush her teeth. Holy Mother of Rhodes! Saying she had a melt-down is like saying the QE2 is a big boat! And we had been doing great up till now.
Thus started about a two hour wrestling match during which I actually got her to promise that if I didn’t make her brush her teeth, then she had to take her vitamins. That lasted until she got a vitamin, which she used to LOVE, near her mouth. Melt-down Part Deux! Then it just dissolved into crying and screaming for no apparent reason. She told me that. I asked her why she was crying and she said she didn’t know but she certainly was shedding a river of tears. I tried to take her downstairs to play…no deal. When I finally did get her down to the lobby, she found occasion to cry at every turn. She wasn’t mad at me as she clung to me on the couch and didn’t want to let go.
I had spoken to a woman earlier about bringing her daughter with us and “carpooling” to the dog show (her daughter was to undergo brain surgery on Monday-today) but I wasn’t sure we’d even get out the door the way things were going.
When it got to be now or never time, Charlotte settled down and told me she still wanted to go to the dog show so we packed up and headed out. I wasn’t feeling very optimistic that CJ would last very long but one cute thing she did was leave Mickey on the bed saying that Mickey was a mouse and we were going to a dog show. Then I suggested we take Rompy and she thought that was mildly amusing.
From here out, she was an angel. Guess she just had to get it out of her system. She sat in the stroller and actually wanted to be where Calle and her mom were and paid attention to the dogs we were viewing. She really like the obstacle course where the dogs jump steeples, go in and out of slaloms, and zoom through tunnels.
We saw dogs of every shape and size including a great dane that seriously considered devouring Rompy and I got to see some of the most beautiful animals I have ever seen in my life. Alaskan huskies, bull mastiffs (one was 225lbs!), and the biggie, Bernese mountain dogs! Ah, yes. Go here and feast your eyes. http://www.google.com/search?q=bernese+mountain+dog&rls=com.microsoft:en-us&ie=UTF-8&oe=UTF-8&startIndex=&startPage=1
I didn’t get to see any Irish wolfhounds which are the other favorite of mine but there we lots of Bernies to behold. There were booths with the various breed rescue organizations and I saw the beagle booth but they only had one very old beagle that wasn’t very representative of the breed. Seemed kind of strange. I saw no other beagles the whole time we were there. Beagles and beagle mixes are just about the most common kind of shelter dog (at least around Virginia) and they make awesome pets. We’ve rescued all of our animals and totally recommend everyone do the same. I love looking at the purebreds but in the end, a shelter dog is a better choice for us.
So, back to the story, after a bit, Charlotte actually got out of the stroller and walked quite a while. We then decided the kids had seen enough and we headed back. It was a very nice event and the fact that it was 5 minutes from The House was bonus.
Later that night we went to the airport to pick up the Beazleys and relinquish the truck. It was coming up on 9:30pm by the time we picked them up and started back and Charlotte zonked on the way. In the confusion of the load-out at The House, I left my cell phone in the truck! Talk about fortuitous circumstances, I didn’t have either of their numbers memorized and almost panicked BUT, it just so happens that I had started compiling a list of our Houston contacts “just in case.” I was actually going to leave the Beazleys numbers off because, hey, they’re already programmed into our phones…Good thing I ignored that impulse. They just happened to stop off at a nearby drugstore and were still close so it wasn’t a big deal to swing back around.
Silly me. Lucky me!
Now to today (which by now is yesterday!).
This morning I woke up at 3am wide awake and it took a long time to wind down. Then as I was dozing back off at about 4, Charlotte decided to wake up. And I mean with vigor! She started talking and singing loudly, very clearly and very wide awake, and as soon as she realized I was awake, she just HAD to be in my bed. So over she came. Fortunately, she fell back asleep sometime around 6 (not sure because I dozed too) and slept in until almost 10!
She had about as lazy a day as ever while I puttered around doing laundry (did the sheets, pillowcases, etc…as well), playing online and cleaning the room. I figured we need to straighten things up and clean for when CJ’s counts plummet which they’re supposed to. Back to germophobe 101.
One of the better events of the day, as usual, was poop. Three sizable poops to be exact and every time, she turned into a different Charlotte, a little bit happier each time. Quite honestly, I can’t say where it all came from. It didn’t seem she had eaten enough to account for all of it but I’ll take it.
Another thing she’s been doing is taking my running shoes (it HAS to be the running shoes) and pulling out the shoelaces. She plays around with it for a while and then re-laces the shoes, CJ style. This activity has taken up HOURS of her time the past week. It’s good for her fine motor skills, keeps her in one place, I don’t mind wearing one shoe at a time around the lobby.
The one not so good development I’ve noticed is that she has gotten stiffer in her legs and although I’ve been stretching and massaging them, she needs a real PT/massage therapist to work on her. I’ll check into that tomorrow.
Speaking of tomorrow…The past 3-4 days have been days I'll never forget for as long as I live. I didn't think I could bond with Charlotte any more than we already had but especially today, it has been filling me up. We’ve been doing very little, actually, but the whole “vibe” today has been next to magical. Just little things like honking noses, following each other aimlessly around the lobby, her telling me over and over, the subplots in her Dora and Blue's Clues videos, etc…
There's a certain bitter-sweet quality to it and the last part of the movie "A.I. Artificial Intelligence" keeps intruding into my thoughts, the part where the androids bring the “mother” back to life for one day so the “son” can see her again and have that one perfect day and, of course, nobody in the audience wants it to end.
These have been her last few "good" days before starting up the proton radiation/chemo and I can’t help but dread the inevitable downward spiral (which, by the way, is becoming her favorite shape. How deep is that?) waiting for us as treatment, and the family fun side effects, begin to take their toll. I’m so appreciative of having these special days with Charlotte. I’m sorry Rachel wasn’t here for them since she will be coming back after the treatments begin and will have to deal with the “sunburn,” the chemo, the oh-so-fun temozolomide (there are chocolate bars in the bin in the fridge) pretty much as soon as she steps off the plane.
I just want to hold her and kiss her all the time (I think she’s getting irritated with the kissing part). It’s 1:30am and I don’t want to go to sleep, even though we have to get up super early to eat something before she goes NPO at 5:30am, because she’s over there less than three feet away from me sleeping like a little angel and I can’t get enough of her.
Fortunately, there will be support here for us during the most trying times as Grandpa and Grandma Bonita are headed this way and the New Mexico contingent will be here the 8th of August. We are also developing quite the Houston based network of people who know people following Charlotte’s progress.
The letters and packages are starting to come in. Thanks to all for those.
Now for something COMPLETELY different! I NEVER do these sorts of things on Facebook (surveys, quizzes, junk like that, especially where you’re supposed to tag people to do the same quiz or whatever). I really LOATH doing those, but one finally caught my interest. It’s the “put your ipod on shuffle and make a list of the first 15 songs that come up” game. Now, I had seen this before and I was like, “Whatever.” But local Richmond musician, Desiree Roots did it and sent her list to me. Her list was so cool, I figured she'd appreciate mine. I didn’t “tag” anyone or anything like that. I just put there for her and all to see. And it came out very cool! Here’s what came up…
1) Bills, Bills, Bills - Jonathan Coulton
2) London Bridge Is Falling Down - Romp n' Roll training songs
3) Union House Branch - Allison Krauss & Union Station
4) Digging In The Dirt (Live Version) - Peter Gabriel
5) Southern Soldier Boy - Southern Horizon Civil War Band
6) Simplicate - Upper Left Trio
7) On Your Way Down - Little Feat
8) Happy Trails - Veggie Tales
9) Hold On - Yes
10) Bangs - They Might Be Giants
11) Story Of Little Boy - Tommy Emmanuel (story, not a song)
12) At The Still Point - The Story
13) A Token Of My Extreme - Frank Zappa
14) In A Silent Way (DJ Cam Remix) - Miles Davis
15) Come Over To My House And Play - Veggie Tales
16) Speak Low - Dianne Reeves (bonus due to 11 not being an actual song)

So we step into the next part of the journey in just a few hours. I can't tell you how much we appreciate all the thoughts, prayers, beams of gold and silver light, etc...sent our way. We certainly don't feel alone.

A Journal Post from Rachel

So I realized that I hadn't done a journal post in quite a while, so here it is...

Life without hubby and daughter is surreal, kinda lonely and VERY quiet. I'm definitely busy with work so when I come home I pretty much just veg out in front of the TV or on Facebook or something brainless like that.

It's funny how much longer it takes the dishwasher or laundry basket to fill up and it's SO much easier to keep the house clean (especially when nobody is living in it). It helps that my parents and Kolbey did a major house cleaning while we were in TX so I came back to a sparkling pad (thanks).

I have really appreciated all of the kind words and support that have come to me through emails, facebook updates, folks stopping in at romp n' roll, etc. I've had invites out and meals cooked for me (thanks, Beth!) and I am really feeling nurtured and supported. That is great. I think I am also (finally) accepting the fact that it is OK for me to take some time to do NOTHING on occasion. That's not a natural way for me to live my life but constant stress will help you realize how important a break from work and daily activities can be. I'm learning how to "treat" myself and put myself first every once in a while. As any mom can tell you, that's not an easy thing to do.

Yes, I'm still sad. The news of the week was definitely not a morale booster. This cancer keeps hanging heavily over our heads and our hearts and it still makes my heart (and body) ache. I am convinced that we are in the right place and I think of all of the fortuitous events that got us here:

If Charlotte had been older, we would have started radiation immediately (rather than waiting and starting chemo first). If that were the case, we would most certainly have stayed at MCV and probably would never have explored the option of proton beam radiation. It probably wouldn't have even hopped up on our radar (yes, pun intended!). By going the chemo route first, we have been able to see how aggressive and mean this tumor is but it has enabled us to connect with the amazing doctors at MD Anderson. I am grateful to Dr. Khan for his knowledge, experience, and connections to such a fabulous facility. I don't think we would be in Texas right now if it weren't for him. Also, while it's hard to be away from each other right now, I think Roger and I have now developed a better rhythm in terms of how we are dealing and coping with this event on our lives and that makes the separation a little easier right now (as opposed to six months ago). Yes. Tomorrow will be SIX MONTHS since her diagnosis. We have reached the half year mark.

I just want to segue for a moment and brag about my husband. Yes, he is a GREAT DAD. You all know that and helped to get him the recognition he so deserves. He is also my partner, my teammate. We've been married for almost 12 years and we've been together for almost 15 years. That's a long time. We don't always agree and we frequently drive each other crazy but I could never imagine my life without him and we wouldn't be dealing with all of this as well as we are without that strong bond. I just wanted to take a moment to get "mushy" (as Roger would say) and acknowledge what a great person he is and what a great team we are.

Ok, collective: AWWWWWWWW....

I must switch gears, close up shop, and get ready to go to work. My next "day off" from romp n' roll will be in a week. When I will be in Texas. Crazy life we lead....

Rachel

Some Bad, But Not Unexpected News

Hi all,
Huge post ahead.
Some bad, but not unexpected news: While Charlotte was in her neurocognitive assessment playing games with the two ladies (whose names I've already forgotten, sorry), I got to look at the latest MRI scans with Dr. Vats (Dr. Wolfe's colleague). We didn't have the post-3rd surgery scan for comparison but the tumor is definitely still there in bits and pieces and possibly still growing. I'm going on the assumption that it's growing.

Dr. Vats also said that there was evidence that it has spread into the upper spine (again, not altogether unexpected) although the computer he used to show me the scans didn't have enough resolution to pick up what he saw on his own computer so I didn’t actually see it. I’ll take his word for it.

Now, before anyone totally freaks out, it's certainly not good news by any stretch of the imagination but the proton radiation protocol has already accounted for the possibility and now we know that it was necessary to plan for head and spine after all. That starts next Tuesday.
Dr. Vats was still very positive and confident that we’re headed down the right path. He did say that he would bring Charlotte’s case before the “tumor board” on Monday to elicit opinions and also that he would explore the possibility of injecting chemo drugs directly into her spine via an LP once every two weeks, adding to Dr. Tye’s recommendation of “throwing the book at it.”
On a good note, CJ wowed them in the assessment with her vocabulary. They’ll get back to us with the official results of the testing as soon as they tally up everything. Dr. Vats was also happy with the recovery of CJ’s left side.
I’ve had several messages from people worrying about how I’m doing emotionally and all that. First off, thanks for the concern. It does mean a lot to me to have so many folks concerned about us.
I’m hanging in there. I’m nowhere close to thriving and I have my off moments but I feel like I’m dealing pretty well. I’ve been thinking very deep and hard about my/our situation and I feel about as focused as I’ve ever felt in my entire life. Crisis sure brings perspective down to a pinpoint, doesn’t it? Nothing else matters besides my daughter’s fight against the cancer. If I have any concerns for myself, it’s how I will deal with things after everything plays out (however it plays out). Different scenarios (best and worst) run through my head all the time but so far they haven’t distracted me from the here and now. I guess I’ll have to figure that out when I get there.
I can’t really speak for Rachel but I think she’s doing a little better. Today’s news didn’t help but she’s using her resources at home, MCV (mostly Dr. Matt), and within the circle of friends & family, and finding more solid footing. Romp n’ Roll is keeping her occupied (my turn when we switch) and Meredith orchestrated a day at Diva’s for her so that will help too! Anyone wanting to donate to that cause can send checks to me.
We will need support in Houston as the proton therapy and chemo kicks in and leaves CJ less functional. My dad has offered to come out as early as next Wednesday and stay for about a week. If anyone was planning to come out, we could use someone after that. Don’t ask me when we want you; tell me when you’re available and willing to come out between then and the end of August and I’ll plug you into the schedule.
The Beazleys have been fabulous and will continue to be. Merrilee is watching CJ tonight so I can go see Harry Potter (Brought my “Muggle” t-shirt and everything, just in case!) and they’re letting me borrow a car this weekend in the guise of having me take them to the airport tomorrow.
Now back to the important stuff, Charlotte. We went to the circus last night and although she liked the pretty horses and she got downright excited to see the elephants, she didn’t make it to the intermission. She was pretty mellow through the pre-show stuff but perked up when the lights went down. Unfortunately they were definitely trying to be Cirque de Parfait which didn’t work in such a large venue and they lost CJ pretty early on. The ringmaster was actually a pretty good Broadway-style singer from Houston who had been with the circus for a couple years now. There was a lot more song and dance stuff than I remember from the one time I saw Ringling Bros. before. There was a moderately silly Jets vs Sharks thing during the Act I finale but one thing really grabbed me. One group of clown “henchmen” came out bouncing on what I can only describe as innertubes with saddles. They did some very cool flips and such off and onto them and now I want one for my own. They also did the motorcycles in the ball trick but they kept adding more and more riders until there were 7 in there. I can’t for the life of me figure out how they all fit in there without knocking each other’s ankles.
Throughout Act I, Charlotte became more and more clingy and finally just climbed onto my lap facing me, put her head on my shoulder and zonked. She slept through the extremely loud finale so I just grabbed everything and headed out when the lights came up for intermission. I was quite the site heading up the stairs with CJ’s unconscious body in one hand, the stroller in the other, and the backpack on my back. At least she was awake on the way down to the seats.
I was going to just call a cab and go back to The House but I just happened to run into the manager of the outing and she called the bus to come get us.
A nice side line, the bus driver told me her story as we rode back to The House last night. Her son was diagnosed with leukemia back in 2000 and spent the next 4 years being treated at MDAnderson. She lived in The House for 4 years while he was treated. She gave up everything to be with him including a successful business and most of her friends and family back home. He’s now 18 and going into college and she now drives the bus for The House. She feels such a connection to the families here that she’s always willing to come in on her day off to help or cover shifts or whatever it takes to make the families’ lives just a little easier. Yet another inspirational story out of a sea of them.
So keep the positive vibes aimed at Houston (with a little left over for Richmond). We’re keeping up the good fight from our end.

Love to everyone,
Rog, Rach, & CJ

p.s. I'm using Facebook for photos and Caringbridge for updates (mostly). If you don't have Facebook and want to see pics, please have someone show you. I don't want to fool with photobucket or the others.

Good Appointments Today

Oi! I keep not learning my lesson.

Had a really long post done and I had even highlighted and copied it just in case but the computer updated itself when I was doing something with Charlotte and restarted, which I guess reset the clipboard. Drat!

Suffice to say we had good appointments today including audiology and a followup with the Children's Cancer Center.

Charlotte will NOT have to be NPO for chemo which means she can eat breakfast.

Her topotecan will be administered via IV just like at MCV.

Her temazolamide (sp?) will be compounded into liquid form. (More chocolate for breakfast!)

She won't have to tace accutane while on proton therapy due to its effect on the skin.

They hadn't read the MRI scans as of her appointment time but it should be available on Mymdanderson.org very soon if not already.

Tonight we are going to the circus at Reliant Stadium courtesy of THE HOUSE. The tree huggin hippie in me says we shouldn't go because of animal rights issues but the exhausted dad in me says my daughter will love it so we're going. I'll try to re-compose the long update later.

Happy Birthday to Charlotte!

Happy Birthday to my Beautiful Baby Girl, my Monkey Butt, my 'Mater (she was born during the Hanover Tomato Festival), Zazou the Amazing Can Can Dancing Creature (long story)!

Today will be one of those ultimate special days. We get to meet former Redskins football players at the clinic (OK, it's more for Daddy than CJ!), we get to see a concert at Chcik-fil-a with great music, great food, and Star Wars characters walking around. Really, the 501st Star Wars Regiment will be there for pics and all!

Charlotte will be there for a little while, not sure exactly how long, "Big" Rompy (strangely Daddy sized) will be there as will a parade of folk/bluegrass musicians. Bring your "axe" and someone might let you jump in! Music should commence at about 5:30pm

Romp ' Roll will be open for free Open Gym starting at 5:00pm so if you want to take a break from the festivities, come on over!

Mommy and Daddy are giving her a kid-themed digital camera because she was showing a definite interest in taking pictures earlier. Good occupational therapy as well. (SHHH! Don't tell Charlotte.)

THEN!!! The big O' Birthday Bash on Friday at 6:00pm! Charlotte's official party ar Romp n' Roll. EVERYONE is invited. There will be enough cake for both the Hatfields and the McCoys (Chek yer wepuns at the door). Don't bring presents, just love and an appetite for cake and pizza.

Concerning the trip: we are getting our appointments lined up bit by bit and we've found out that Monday the 13th will be a simulation run to give everyone a chance to organize exactly what's going to happen. Then she gets an MRI on Tuesday and then...nothing until NEXT Monday. That's right, they say they need a few days to plan everything so we will be doing just chemo at that time. (JUST CHEMO?!?!)

We have a temporary place to stay until an official agency comes through with an appartment thanks every so much to our guardian angel, Meredith, for getting that going.

I've contacted the Washington Nationals and the Houston Astros about covering the Sunday game between the two. (Why not multi-task while we're down there, eh?) If it happens, I'll let you know where to hear/read it. Most probably WHAN 1430AM on Monday morning.

Update:

What a day! Busy and good...and did I mention BUSY?

My day consisted of a haircut, many errands, and then off to Romp n' Roll to work.

Daddy took CJ to the clinic where they got to meet some retired Washington Redskins. Charlotte actually got to hold a Super Bowl ring in her hand. I'm not sure who was more excited about this visit (Charlotte or Daddy) but I think the icing on the cake was when the football players sang "Frosty the Snowman" to Charlotte in honor of her birthday. Our nurse (April) was back from vacation and everyone made a big deal out of the birthday girl's big day. She got a present from the clinic (wrapped in SNOWMAN paper...too cute!). And, of course, Charlotte got to see Dr. Khan (her favorite doctor). Rumor has it that the moment with the football players was captured by WTVR and was on the news but I haven't seen it yet. Couldn't find it online.

In medical news, we have our first appointments for next week so things do seem to be lining up. We are in email communication with our nurse practitioner out there and the Houston Angel Network is coming out in full force. We continue to get messages from people who know us or know of us and are helping us make connections for ANYTHING we might need in TX. I know that we will be well cared for.

Our local Angel Network is hopping too. The concert was a success. God served up some beautiful weather, Chris Fuller and Charles Arthur played their greatest hits, Childtime had some fun kid's crafts, the 501st Brigade was there (Darth Vader, Storm Troopers, even an Obi Wan Kenobi) taking pictures to raise money for charity. I even saw a few storm troopers directing traffic! The Star Wars group raised over $200 for Charlotte PLUS, Chick-Fil-A donated 10% of the evenings proceeds to us (a little over $100) PLUS over 23 people donated blood today! Yay! Even Rompy got in on the action and came to visit all the kids.

Our biggest Angel of the evening came in the form of plane tickets. I am not sure if this Angel wants to be acknowledged yet so I will let her remain anonymous, but let me tell everyone that almost ALL of our remaining plane tickets for travel to and from Houston have been bought and paid for. We will only need to purchase Charlotte's and my return trip at the end of August (and we just don't know the date for that yet). What a gift! What a blessing!

So 36 hours from now, we will actually be IN Houston (that's scary!!). I've got a lot of packing to do and before that we are going to party like it's on sale for $19.99. Romp n' Roll: be there or be square. 6 PM. We may have to call the Fire Marshall :-)

Gotta run and be productive (oh and rest...)

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

Letter to Caringbridge and Update from Houston

Here's an email I sent to the Caringbridge folks about the thermometer over there to the right. I realize that in the scheme of our lives, this is not that high on the list but it's kind of important to us.

Dear Caringbridge,
Thank you for your reply to my email concerning your "thermometer" on the website.
I have no problem with Caringbridge fundraising and as I've said, we and our support network have donated and (until recently) planned to continue our support past the end of Charlotte's treatment. My problem is with the use of Charlotte's name as if the donation will be going to help her directly. It is very misleading. This has already been a problem as a friend of ours clicked on the link and sent a donation to Caringbridge thinking it was going to Charlotte. He is not happy and several of our fellow Caringbridge users aren't either. We've heard that other users have complained and have also been refused by you. Not the way to garner loyalty.

I will make my request only once more, please take Charlotte's name off of the thermometer ad. Paying or not paying a fee for the service is not an issue for us. Having our name associated with an organization with questionable ethics is. The thermometer idea is great. Just take the names off of it and make it clear that it's for Caringbridge and not the user. It's especially confusing when the users (like us) are frequently in the middle of fundraising themselves.

In case you didn't notice, we have over 90,000 hits from about 700 independent viewers. How many more people are following other patients as well? I would say it's very bad business to piss off that many people at once.

I've been shouting the praises of CB all over the place. I even told someone about it this morning so I have not given up on you yet. Do right by us and it could be very good for you. Refuse us, and our friends, again and we're gone. Your choice. Personally, I really like CB and don't want to leave but I have discussed it with my family and we will.
Instead of forcing this on us, why not enlist our help? Obvoiusly, there is a great deal of organizational experience here.
Sincerely,
Roger Reynolds

Don't hate them yet. We'll give them a chance to work with us. CJ update later!


Alright, here it is now, your moment of Zen...

I will warn you that I have had a very long day (and two margaritas) so I apologize in advance for any typos or "crazy talk".

We made it to and through the behemoth that IS MD Anderson fairly well. The shuttle got us to the hospital without much ado and with the help of some handy greeters, we found our way to the children's clinic.

WOW! It's quite an operation. Similar in scope to the ASK clinic at MCV but even more impressive. There was a LARGE playroom and lots of books to keep CJ more than amused. While we were there, the music therapist stopped in for a session with the kids. It was well attended and Charlotte joined in the fun after some encouragement. She even got in a request for Frosty the Snowman.

The receptionists and all the staff just LOVED her bald chicks rock shirt that she wore proudly today. She made fast friends with everyone and charmed the pants off of just about everyone in breathing distance. That's our girl.

I filled out oodles of paperwork, summarizing for the umpteenth time Charlotte's birth history, health history, developmental milestones, etc. Seriously...can we not get electronic records that automatically transfer this stuff from doctor to doctor???

I also dropped a check for $2500 for the evaluation. Turns out we are out of network here in Houston so we will start paying down that $8K deductible. Thanks to the fundraisers...we couldn't be here without you!

Our appointment for paperwork was at 9:30 and our appointment for Dr. Wolff was 10:30. We made it in to see the doc about 11 am (not bad for getting squeezed in at the last minute). Dr. Wolff came in, met us, greeted Charlotte, and got the "low down" on her history and scans. He explained the procedure with the evaluation of her tumor and how the process works and then decided to send us immediately over to see Dr. Brown in the research area of the medical school. He told us to wait and that he would get us directions and then he promptly left the building...

We were kind of left in limbo land for a while but eventually got a medical data specialist to walk us over to the medical school herself (it was about a four block walk). Meanwhile, we got to hear her interesting story: she was living in New Orleans during Katrina and ended up needing to evacuate. Interestingly (still..) she stayed during the hurricane at Nicolas Cage's house (a friend of a friend) in New Orleans and then ended up borrowing his car to get out of the city since their cars were flooded out. Crazy! She ended up in Houston and hasn't been back since.

So we met with Dr. Robert Brown who is a researcher at the University of Texas Medical School. He is also a graduate of MCV (go figure!). He shared a few journal articles which he has published on this process. The official term is morphoproteomics (for any of you interested in googling it). The science behind it is pretty much beyond my capability but basically this is a VERY new and VERY experimental process used for cancers and other diseases for which typical therapy is not successful. According to Dr. Wolff, only about a dozen people have been through this process before Charlotte and maybe only one her age. The doctor will look at the tumor markers under a microscope and analyze the life cycle of the tumor. By this process, they will recommend directions for therapy which may include drugs that are off-label (i.e. they are not typically used for cancer treatment) and/or drugs that may not have been tested on children. All the drugs are FDA approved but they may not have been through clinical trials with kids.

SOOO...we basically told Dr. Brown that we wanted to move forward with things. He gave us things to ask for (more tumor slides after Charlotte's next surgery) and we headed back towards MD Anderson for lunch. We ended up at one of the many eating establishments available on this campus where there was (surprise) a Chick-Fil-A! Hooray.

After lunch, we went back up to the clinic. We weren't exactly sure when Dr. Wolff would see us again but we knew that he was expected back from a lecture about 2 PM. Charlotte resumed her playing in the playroom and we met volunteers and child life folks who helped give her (and us) some extra TLC. The highlight of the day was getting to see this girl named Bailey ring the bell for the end of her treatment. Not sure of the diagnosis but I'm guessing Leukemia or Lymphoma. She was another cool bald chick and looked to be in her mid to late teens. There was a big announcement made as Bailey came out to ring the big bell for the end of her treatment. Charlotte walked right up to see the events and even ran up to Bailey and gave her a big hug. There wasn't a dry eye in the house. Ok, well, I was bawling!!

Then we waited...and waited...and waited. Finally about 4 (or so) we got back into the clinic again and we met with one of the other oncologists on staff. He finished taking Charlotte's health history and THEN we met with Dr. Wolff again. He helped talk us through the next steps as we discussed possible options.
We learned that there are certain chemotherapy drugs that she may be able to take very soon after surgery (depending, of course, on how the surgery plays out).
We also discussed radiation options (whole head and spine vs. localized and proton beam radiation which is only available at about three places in the country...MD Anderson is one). No decisions made today, of course. All of this depends on how the surgery plays out, how the initial rounds of chemo go, and what the morphogenesis results tell us.

But here is what was made very clear to Roger and to me: Charlotte has a very dangerous, very aggressive tumor that is (frustratingly) not responding to many of the typical therapies. We are embarking on pretty much unexplored territory when it comes to therapy options but this is pretty much all we have. There is much danger of the cancer metastisizing (into her spinal fluid or other areas of the brain) and there is much danger of the cancer continuing to grow.

Slight segueway...there is an episode of the Simpsons where Homer actually tries to gain weight so he can go on disability and work from home. In his attempt to gain weight, he goes on a super fat diet and takes the family along with him. In a scene where Homer tries to get the kids to eat fat-upon-fat, Bart responds "Dad, my heart hurts!" and Homer replies, "Butter your bacon!!!"

Well here we are....my heart hurts. And not from the buttering of the bacon. Over the last few weeks, we keep digging deeper into this process and I continue to realize how grave her conditino is. The fact that her tumor is not dying despite the poison we put in her body. The very fact that we are having to resort to experimental, aggressive, and potentially dangerous medicines to keep her alive. That makes my heart hurt.

I feel this weight in my chest that won't go away and I am genuinely sad. I fought back many tears today (and a few slipped out anyway). I know that there is still hope. I know we are not at the end of the line. But I am not nearly the picture of optimism that I felt about 3 months ago. This is hard stuff and it will take me a while to process this.

Ladies and gentlemen, the eye of the hurricane is getting ready to pass. Get ready for the rest of that oncoming storm. We can't prepare for much because EVERYTHING...every step in the next part of our journey....hangs in the balance of the step that comes before. Her chemo treatment will be determined by how well she responds to the surgery. And radiation will be determined by the success of the surgery and the results of the analysis. And all of the experimental stuff will hinge on how everything else plays out. I can't plan ANYTHING anymore...

So, just to finish the story of the day: we FINALLY left the hospital at about 6:10 PM (after being there since before 9 AM) and the hotel shuttle never came to pick us up (despite 3 telephone calls) so we eventually decided to hoof it the 1/2 mile or so back to the hotel on our own. Not a bad walk and thank goodness for Google maps on our phones.

Just so we don't end on a downer, we did have a lovely evening with Roger's Uncle Tom. We went to dinner for Tex Mex (Roger and I had been craving fish tacos and, yes, Margaritas). Charlotte was a doll and was serenaded by the mariachi band. She really loved it when they played Old McDonald!!

We will leave tomorrow and journey back to Virginia. More to update later.

Rachel

A Lot to Consider

Hi all,
Feeling very beat at the moment. There are a lot of questions and we have some things to consider.

The good news is that her blood counts look GREAT. Everything has come up where it needs to be.

Dr. Tye does want to attempt another surgery. Given that her brain has had time to heal since the last surgery, he should have a better view of the tumor and will hopefully be able to get as much as possible. The odds of defeating these types of tumors are greatly increased when they are smaller. Obviously, the risks of surgery (coma, seizure, blood loss, weakness or paralysis, etc.) are there and were discussed. We also talked about the option of getting a second (or third) opinion and we got names of colleagues/peers at UVA, DC Children's and Johns Hopkins with whom we could speak if we want to go that route. If we don't feel the need for a second opinion, she could have surgery as early as May 13th (next week). Roger and I are currently weighing these options.

On the oncology side of things, Dr. Khan met with his former supervisor and mentor at MD Anderson Clinic in Houston, TX. They have a new method for treating PNET that would probably benefit Charlotte. What they do is take samples of the tumor and treat it in the laboratory with multiple agents to determine the "best" method of treatment for her specific type of tumor. Instead of using a standard protocol, she would get a customized treatment just for her tumor. This tends to work better in cases where the tumors are "ill-behaved". Here is how it would work: Once Charlotte was well enough to travel (but before we would need to begin chemo/radiation), we would travel to Houston and they would see Charlotte as well as get a set of slides with the tumor on them. That part of the process would take just a day. We would return home and within about two weeks, they would develop a treatment protocol for Charlotte which would involve some combination of radiation and chemo. They would share this treatment plan with Dr. Khan and we would proceed from there (with her continuing to get her treatment at MCV).

Meanwhile, in all of this we "lost" Mickey Mouse. We accidentally left him in the lobby of the clinic and by the time we realized he was missing, he was gone. Kinda interesting because he had a name badge on him with her name on it. Anyway, we have already received a "loaner" Mickey and are probably getting another one very soon thanks to some Disney connections (thanks Annette!). Just one more thing to slam us down while we're already on the ground. Roger's pretty upset about it.

Anyway, hope everyone is enjoying the weather. It is GORGEOUS. Roger and I have to get to work and we will update everyone as we know more.

Rachel

We are strongly leaning on this option. We just have to consider timing, logistics, and the reality of leaving our business for about a week's time.

Right now we have a lot to think about and we let everyone know that we would consider our options and let them know on Monday.

MRI Results

I apologize in advance for our lack of update. It's been a busy 24 hours (or so).

VERY excited to see that there are at least 12 contestants in the burrito eating contest! Hooray! Come on out and support these crazy eaters! That's wonderful!

Yesterday was a busy day all around. Charlotte was active and feeling pretty good most of the day. Her methotrexate level was about 2.1 which is good (it has to be .01 before they can start the next part of chemo but usually after "day 1" it was around 3.). That means her body is flushing the "stuff" out of her at a good rate. They were monitoring her blood pressure for a little while as it seemed to be high...BUT then she pooped and the pressure seemed to drop back to normal. Again, hooray. Her appetite was good yesterday and she ate lots of fruit so I am sure that helped.

Auntie Retta visited in the morning and brought mom coffee and yogurt for breakfast. YUM. She and Charlotte played some Candy Land and we all had some good visiting time. Granny arrived at the hospital around noon. We took a few walks, went to the playroom, and she was in a very "artsy" mood, drawing and doing collages with stickers. I understand that the rest of her day was very active as well.

I left after signing the consent for her MRI today and headed over to Romp n' Roll where things were hoppin'. It was a very busy afternoon and evening with our registration event. Lots of fun and we didn't stop until after 8 PM!! It was good to see many of our regular customers and a few new faces as well. Lots of people asking about Charlotte.

Roger and I got to spend another night together. That is a rarity these days so we try to appreciate it. Now it's off for another busy day and a weekend ahead.

Many of you have commented to us about hoping that the MRI will show shrinkage of the tumor. Interestingly enough, my understanding from Dr. Khan is that we really don't expect a lot of shrinkage during the first stages of chemo. They just hope not to see any additional or new growth. Today they will be looking specifically at her spine to make sure that none of the remaining tumor has spread to other areas of the central nervous system. Until she starts the high dose chemo, they do not expect the tumor to die and/or shrink. Kind of depressing when you think about all that she has been through and how this really doesn't do much (visually) to solve the problem but I know and trust that this will be the right thing for her.

Gotta go get ready for a busy weekend. Can you believe it is May already? When we started this process, it was cold, wintry, and January. Now there is green everywhere and flowers in bloom. And we're starting to think about summer. Crazy!

OH an update about the cruise: I think we are pursuing options for a 5-day Disney cruise that will leave out of Port Canaveral (Florida) sometime in Mid-June 2010. There are more details to come but start to think about whether you and your family would be interested. We know that not everyone will be able to go but Charlotte would love to celebrate her recovery with you on a Disney Cruise! I've already got an idea brewing in my head for t-shirts...

I'm sure there would be some kind of initial deposit but the balance would not be due until April of next year so you have a year to save for the big event. We are working with our travel agent on this and will distribute more information when it is available.

Happy Friday!

Rachel

Charlotte went in for her MRI at about 12:30. I got to the hospital just in time to see her off into the capable hands of the radiologists. She was really funny when they gave her the "sleepy juice". As we may have mentioned before, it has about the same effect as a fast acting cocktail. So true to form with most of the women on my side of the family, she's a "fun drunk" (Roger can elaborate on that) :-) Anyway, she was very giggly and talkative and cracking up me and Granny.

Granny and I went upstairs to wait. She had a pretty good night from what I understand and slept well. Much thanks to Granny for staying with her and giving me and Roger a break.

She came back from the MRI still loopy but has since had some juice, most of an apple, and most of a hot dog. Now she's in Backyardigans Land (at least she's branching out from Dora).

No report from Radiology or Neurology yet about the MRI results but I did talk to Dr. Massey for a bit about her current levels. It looks like Potassium is good again but her Vitamin D is low. Not surprising because the chemo tends to deplete this nutrient a lot. Combine that with the fact that she isn't getting her normal daily dose of "outside" and we have low Vitamin D. Apparently we need to watch this pretty closely as long-term studies of kids with these kind of treatments sometimes result in low bone density down the road. So she'll probably get started on a Vitamin D supplement in addition to her multivitamin regimen.

The subject of radiation was once again broached as well. Looks like this will be even more of an inevitability. As she gets older and we see how the chemo progresses, they will tighten the plans for her protocol but since we weren't able to get 100% of the tumor out and the PNETs tend to be very aggressive, I think they are already looking forward to what type of radiation protocol we will need to consider. I don't have any more info on that yet but I'll find out and you (our loving fans) will be some of the first to know :-)

That's all I have to report for now.
Rachel

Big PS: (and the whole reason I signed on in the first place)...

The Fundraiser at Everything But Water (Short Pump Town Center) has been postponed until May 17th. More info to come soon.

Ok, folks...not so good news:

We got the MRI results back. The long and short of it is: the tumor is growing. It seems that the chemo has not done anything to stave off the growth of these cancer cells. PNET tumors are, as Dr. Khan says, "Notoriously Ill-behaved". And this one is no exception.
SOOOO...what does this mean, you may ask?
We are stopping chemo for now (no sense in putting her through more of this if it's not working). She will go home tomorrow. We may still see her counts drop a bit but hopefully not as much since she didn't get the full round of chemo this time. We will be back in the clinic next week to check levels. We will also have a consult with Dr. Tye next week. He is out of town at a conference this week but has spoken with Dr. Khan and while he has not seen the scans, they are already talking about the possibility of another surgery to debulk as much of the tumor as they can. This would be probably two weeks from now (we have to wait for the chemo to completely get out of her system and for her levels to come up). They have to weigh the pros and cons of a third surgery that will remove as many cancer cells as possible vs the risks of surgery, etc.
Whether or not surgery is an option, the next step will be RADIATION (yes, indeedy, we are there). It will probably be pretty localized (not full head or spine) at this point but probably about 30 days worth. This could start as early as four weeks from now (if no surgery) or later if she has to have surgery. This should be outpatient but just about every day.
And then we reassess and probably jump at that point to the high dose chemo. Hey, at least we're not in a time crunch to get the insurance company to agree with us now (see, I can see the bright side of things....)
Needless to say, this has been very disappointing to me. Roger knows the "scoop" but did not have the advantage of seeing the scans. We will get to meet with Dr. Khan again on Monday to go over questions, etc.

In good news, Charlotte has been in great spirits all day. Thanks to Granny's conversations with the nutritionist, we got some extra strawberries ordered for her and she ate them ALL (not to mention all the berries granny brought yesterday). She also had a visit from Lisa Branner (the Marketing Director at Qdoba who is organizing this great burrito eating EVENT on Sunday). She brought Charlotte chocolate ice cream (YUM!) dinner for me (YUM YUM!) and stayed and talked for a while. She actually got here while I was meeting with Dr. Khan so it was good to have someone to talk to immediately after taking in all this bad news.

Charlotte is deep into her sticker collage creations and made pictures for Lisa AND Dr. Khan. Now it's Dora Time. Anything for this Princess, that's for sure!!!

HUGS and Deep Breaths to everyone. May the prayers for healing continue.

Rachel

In the Hospital for Chemo

Ok, so I'm running on fumes with about four hours of sleep two nights in a row thanks to allergies and other factors so I will keep this brief but as informative as possible. And then go crash.

Charlotte and Grandpa journeyed to the clinic this morning while Roger and I journeyed to Romp n' Roll activities. I made it to the clinic by about 1 PM and in true form, they were STILL in the clinic (not admitted yet). We got admitted about 3 PM which is actually a record on timing, I think. Not only that, but we arrived at our room on 7East to find everything "prepared". We are in one of the "nicer" single rooms with a good view, a REAL pull out bed for the parent (a rarity outside of the PICU) and Charlotte's bed already prepared with a new Elmo & Zoe pillowcase and Heather's Care Bears waiting to say hi. (Charlotte "borrows" these Care Bear Figurines from Heather every time she comes to the hospital. It has become their little ritual.

I guess being a "frequent flyer" gets you a (hopefully good) reputation that starts to pay off. We got folks watching out for us.

Our nurse (Caroline) has worked with Charlotte a lot before as well so that helped the process too. We got her situated and got everything moving and she officially started chemo (after fluids, pre-chemo meds, etc.) at 9 PM tonight. Again, another record (usually we "start" at about midnight or later on the day we are admitted).

Charlotte spent the afternoon in a very artistic mood. She painted with watercolors, drew pictures, and made sticker collages. Lots of concentration and creativity.

This was also good because she didn't seem too in need of 1:1 attention from mom. Mom didn't have the energy...

Dad came to relieve me at about 9:30 and now I am home.
And signing off....

OH!!! But wait! Before I forget:

Many of you know about the burrito eating contest at Qdoba on Sunday. I know that many of you have expressed an interest in coming out to support us (mainly by eating dinner there). IF you are in any way interested in participating in the burrito eating contest, PLEASE sign up soon. All registration fees (100%) go to Charlotte. You will eat as many burritos as you can in 10 minutes but they're not the typical Qdoba burritos. They take a few ounces out of each of them. The top prize package carries over a $1500 value and there are great runner-up prizes as well. It looks like the competition pool is kind of slight right now so your chances could be really good! Plus, it's for a GREAT cause. Anyway, the store would really like to have an idea of how may competitors to expect. I know some of you have given me "Maybes" so turn those thoughts to YESes and go by the store at Willow Lawn to register by Friday!!!

Thanks for your time...
Rachel

Charlotte is Finally Home

Charlotte is finally home after the never-ending-discharge process. We "started" going home around 11 AM and after waiting for orders, getting a dressing change, getting the last bit of antibiotics, and more all around waiting (oh and having to fix and re-do the discharge orders), we FINALLY went home around 3:30. We made it to Sonic just in time for Happy Hour and milkshake-shake (yay). Then I left Charlotte in the capable and enthusiastic hands of Uncle Kolbey and Grandpa while I drove down to Romp n' Roll, got the loaded-up SUV, and unloaded the obstacle course at the Children's Museum for tomorrow's Connections Fair.

Now back at Romp n' Roll and relieving Roger who had a HUGE day teaching four classes, hosting a playdate (happy birthday Gretchen) and doing many other things. (Good job Rog!)

Much thanks to Grandpa for staying the night at the hospital and giving Roger and I a bit of a respite. We are still both running on fumes and adrenaline but somehow we keep going.

Everything about Charlotte looks better and her white count JUMPED overnight so that is good news. We went home with IV antibiotics, oral antibiotics, but no other meds so that is good. She seemed full of energy today and continues to charm the socks off of anyone whoc comes to see her during the day.

Now the "new" news: while we checked out with the Hem/Onc team today, the doctor said, "Well, since we were supposed to start chemo today, I guess we will see you in the clinic Monday and get things rolling then." To which I said, "HUH???????" They did a double check and sure enough, this cycle is 22 days (not 28) so we were actually due to start today after all. SOOOOO, we are going back to the clinic on Monday to check labs. If everything is still a-ok, we will get the dreaded catheter inserted and will probably start things back up again on Tuesday. Now I'm REALLY glad Grandpa is here since he can probably stay a few more days until my mom can get here on Wednesday. Any child care needs for next week are on hold again so we will let you know if you signed up to help. Meanwhile, Roger and I will somehow need to reconnect, look at our schedules, and figure this out.

And now for this weekend's schedule: We are going to try to contain and curtail Charlotte's activities with others as much as possible. As much as she loves social time with her friends, we are ULTRA paranoid about germs right now. Roger and I will be going to the Children's Museum tomorrow morning, then Roger is off to his gig at the Iron Works with Southern Horizon. Then it's off to the Benefit Dinner at the Elko Center in Sandston. Then home to collapse, I guess.

Sunday is a Romp n' Roll day for mom (but not a full one); just a half day I think.

WHEW!

I think that about sums it up for me. Again, we are building momentum for the next big fundraiser at Qdoba on May 3rd. Come on out for the burrito contest or at least to eat dinner that night. This is a great opportunity to support Charlotte and a great business that has really helped us. Lisa Branner, their marketing director who is putting this whole event together, brought me dinner and brought Charlotte balloons at the hospital yesterday, So sweet! Again, you can get more details about this event by checking out the calendar on the romp n' roll-virginia center website (I will put a link in the RESOURCES section of Caring Bridge) or email me or Roger.

Other small fundraisers going on as well. The way things are going with the insurance company, we will need them.

Rachel

Hoping to Leave Tomorrow

Well, now we are looking at leaving sometime tomorrow. Her counts are up and getting better. There are "sub levels" to her white count that they want to improve (her neutrophils). They are going to keep her on IV and possibly oral antibiotics for about 10 days but we should be able to do that at home. Meanwhile, it looks like we are still on track to start chemo (again) next Friday. Sometimes I'm not sure why we bother to leave the hospital.

In other news, we got word from Humana that they officially denied our first appeal so we are off to write more letters. Actually, my second appeal letter is basically written and we are getting Dr. Khan to write another one on our behalf. Humana keeps looking at this as a "convenience" decision on our part and not factoring in anything like Charlotte's age or the intensity of her treatment. Basically, they see it as our "choice" to keep her at MCV and since we are making that choice, we should just suck it up and pay the out-of-network costs. They think that since they are not outright denying her care, they have done everything they need to do. I'm pretty much resigned that will be the outcome at this point but at least we will fight one more round and say that we fought the good fight.

I had a nice walk outside today while Grandpa visited with Charlotte. I journeyed over to the Capitol grounds where it was just beautiful today. Dogwoods, azaleas, and tulips blooming everywhere!

Grandpa brought Charlotte a belated Easter basket filled with Hershey's Miniatures and Charlotte and I have been "sharing" her chocolates with the hospital staff, offering some to everyone who comes in her room. It is so sweet and a great way for Charlotte to engage socially with others. The hospital staff (of course) get all googily when she offers them a candy!

She also had a fun little playdate with the preschool teacher and two other kids on the unit. They played in the playroom and finger painted. Great fun!

Now she is back to her room and watching a bit of TV. Yo Gabba Gabba for a change!

Roger's dad will be spending the evening here so hopefully Roger and I will get a few minutes together tonight. Hopefully we will not be too exhausted to keep from collapsing into bed without socializing for a bit. That has become a big challenge recently.

Let's hope for a discharge from the hospital tomorrow!

Rachel

Charlotte is Back in the Hospital

Crap...crap...crappity crap crap...

We are back in the hospital. Charlotte woke up with a 102 fever this morning. Roger took her to the clinic and her counts are near 0. They also think she might have a Urinary Tract or Bladder infection. Joy.

She has been admitted to 7 East and they will do a blood transfusion plus possibly a platelet transfusion.

No word yet as to how long we'll be in this time. We'll let you know.

In other (much better) news, I met this morning with the Marketing Rep at Qdoba Mexican Grill regarding the fundraiser for Charlotte. They will be holding a Burrito Eating Contest with lots of prizes and opportunities to donate to Charlotte's cause. The date is May 3. More details to come in a future post. Will post on Facebook as well.

Gotta run and get ready for Romp n' roll.

Rachel

Big wheels keep on turnin'....

Thanks to Monica for that post in the Guestbook today about the Alligator Wrestler. Loved it and apparently it touched a lot of y'all too! I guess I can add Gator Wrestler to my moniker now!

Despite the setback, it's been a busy morning for me. I have posted a calendar of Charlotte's Fun-Raising events! It is on the Romp n' Roll-Virginia Center website. Go to the ABOUT US tab and then go to IN THE NEWS. Or you can just go HERE

If there are changes or adjustments to the calendar, I will let you know when an update has been posted. I hope this will help everyone get the word out and know about new events. Also, if you are on Facebook and have not joined the Get Well Charlotte Reynolds group, you can do that and stay up to date on the latest news and events.

About the May 3 event: Qdoba at Willow Lawn (they are a mexican grill with yummy burritos, tacos, etc.) is holding a burrito eating contest with proceeds to benefit Charlotte. Here is how you can help:
0. Enter the contest! There will be a $5 entry fee before May 1st and then a $10 fee after May 1st. All proceeds to benefit Charlotte. There will be "special" (i.e. simplified) burritos made for the contest and contestants will have 10 minutes to eat as many as they can. (Contest will be at 5 PM). There will be a release form available at the store that must be signed when you register. Anyone under 18 who wants to enter needs a parent/guardian signature. There will be great prizes for the winners and participants! Entry forms are not available yet but should be soon.
1. Come out to support the burrito eaters! Have your dinner at Qdoba that night (4 PM-close) and 10% of all sales will benefit Charlotte.
2. There will also be a fishbowl and prize wheel for additional donations.
Charlotte will be in the hospital at this time with her next round of chemo but we are hoping that Roger or I will be able to make an appearance at the event. I will hopefully have posters soon that will have more details about the event so you can publicize and share with others.

On this note, I need someone with a crafty bent to help. We would like to make a simple display board or poster with some pictures of Charlotte, some information about her "story" and maybe a way to list other upcoming fundraising and/or brain tumor awareness events. I think this would be a great way to promote ASK and some of the other Brain Tumor Support Groups in the area as well. This would be something that we could take to events held in Charlotte's name and/or her honor. If you are interested in helping with this, please email me at rreynolds@rompnroll.com

I think that's it for now. Gotta go do some actual Romp n' Roll work, I guess! Shhh...don't tell my boss I'm slacking on the job...

Rachel

So here we are.
Hopefully not for long. Let me first say that it's not nearly as bad this time as it was the first time we found ourselves here because of low blood counts. Damned inconvenient but at least she's been pooping regularly and we're back on 7-East which is more her age range.

Yesterday we went to PT and after a full day, as you already know, CJ fell asleep on my chest at around 2pm which was our first clue that she wasn't feeling 100%. Then through the rest of the evening, after she woke up around 5, she was whiny and grumpy untill I put her to bed around 8 or 8:30.

She slept through the night but I noticed that she was really warm when I came down to change her at 1:30am. Rachel got the thermometer but it consistently said around 98 Degrees. When I checked her again at 7:30, she was still hot and I didn't trust the temperal (sp?) thermometer so Rachel got a different one and Charlotte actually let me place it under her tongue. That showed 102.2 so we called the HEM/ONC Clinic. They said bring her in and "pack a bag" just in case. We would have anyway but it was good thinking on their part.

We came into the HEM/ONC clinic around 9am and were there long enough to watch "Over The Hedge" (very funny), and a couple of Doras. There was drama when one of the nurses wanted to look at the rash on her "bum bum" and Charlotte absolutely refused (still traumatized by the last catheter experience I think). This time there was no saying "no," though, so we had a meltdown when all negotiation didn't work and we had to force it. The nurse maybe could have had a slightly better bedside manner but I know it absolutely had to happen.

She also needed a "pee bag" (for want of a better word) and that could have been as bad if not worse but the nurse, a different one, made sure CJ knew that it wasn't a catheter and that nothing was going inside. Once that was established, CJ was almost excited to get it on. The relief was obvious. We even got pee out of the deal.

Right about this time, I finally noticed "the look." That cancer patient look and it didn't surprise me when her bloodwork came back showing lovels down to nothing. It's amazing her blood is even red. Dracula wouldn't want her blood. She will need a transfusion.

Overall, the nurses at the HEM/ONC Clinic were great and we saw Miriam doing a little solo MT action! She let CJ play with the "hamster bells" which were very cool. Also saw Dr. Matt Bitsko (R-MC Alumn) and we chatted a bit. He had hamster bell envy.

On odd behavior: CJ got agitated over the green oxygen tank attached to the IV tower and I can't for the life of me figure out why. It took quite a bit of convincing to get her to believe it wasn't something that was going to cause her pain.

She has eaten a good bit, slept a little and is now in a very good mood. That's good.

Although it's not "fine," I'm feeling much better about this than the last. So much better, in fact, that I wanted to share a trailer for the next movie we're planning to see. I thought, at first, that it was the story of our lives. Here's a link:

http://www.youtube.com/watch?v=wsLqKAvKiQM

Hopefully, we'll only be here a couple days at most. Rachel is coming to relieve me tonight and she'll be spending the night. Then I'll be spending tomorow night. I'm sure Rachel would enjoy some company. Auntie Retta said she can come by tomorrow morning. Anyone interested in spelling her for a bit or dropping off some lunch? Call her cell to confirm and to make sure someone else hasn't jumped on it.

Side line...Heather from child life saw me and said, "I'm going to make your day." We went into her office and I was expecting a new Dora or Caillou video but it was actually a really big cardboard tube she had salvaged for me from a roll of flooring. I had asked her to save the center of the big paper rolls they use for art and she did one better. I'm going to make a rain stick out of for Rompy's Band class.

So off I go to entertain the princess.

What a Difference a Day Makes!

5:27 AM
CJ had a relatively good night. I got here about 9:15-20 after a very full day at RNR (More about that later.), and headed up to the room. I dropped off my "luggage" outside the room because I wanted to walk in with my arms free. When I opened the door, Charlotte was sitting in the chair on Mommy's lap watching, guess what? DORA! What a surprize.
It's rather odd seeing my baby with next to no hair. She's certainly still amazingly beautiful but the look is definately different. I think it's the strands left over that are weird. Once it's all out, it shouldn't be much of an adjustment. I've been ready for it for a while.
After Rachel went home, after promising me she would only take a shower and go to bed (which I think she did), Charlotte and I settled in for the night. I had to rub her back and belly often but she fell asleep much faster than I expected. It didn't hurt that I was actually in the bed with her. A couple of times, I woke up in a slight panic wondering if I had rolled over on her or something (ya know, typical parent stuff) but there she was, snoring away.
She woke up around 3:30am complaining about her back and I rubbed it a bit. She also needed a diaper change so I did that too. Interesting thing is, it got her in what I think is a far more comfortable sleeping position for her: perpendicular to the bed in the crease made when the ends are raised a little. After the diaper change, she sort of settled in to that crease and has been out ever since. Not Daddy, of course! :-) I worked on Rompy's Band. (Tamborines are finally done, Everyone!)
Still no appetite yet. She's eaten a little here and there for Rachel but nothing for me yet.
I think my exhaustion caught up to me today during my mixed ages class. I forgot to sing the welcome/hello song. Instead I went straight to the story bag. Fortunately I did it after that and I think the class forgave me.
Babies class was far worse. I dropped song lyrics left and right, had to grasp for order of things, and generally made a mess of things. Fortunately, it's babies class which is one of my favorite classes to teach so I at least kept the energy up and we all still had a very good time (I think. Not sure. What day is it?)
I had a good lunch and relaxed a little between Babies and the playdate party so I actually felt pretty good the rest of the night.
I have to admit, I think this week has been the hardest one for me (probably for Rachel, too). The unexpected hospital trip kind of blindsided us and I've been frustrated at little (and not so little) imperfections I've been noticing here. One of which is the shower that leaks constantly and sprays everywhere until you get it just right and when the physical plant guy comes by (as he did when Rachel called) he can only say that that's the best it can get and it's fine. No it isn't. The waste of water, energy and money really is pointless and I'll bet the bean counters at the MCV accounting office wouldn't be happy about it.
The absolute biggest thing is the F--- up by someone concerning CJ's medication. I can't imagine why, with the triple redundancy I see happening everywhere, that that sort of thing can happen here. We're all just lucky Charlotte didn't get hurt because of it.
On a very good note, after the conference call yesterday, it looks like the "fun-raising" effort has a serious A-Team in place and there will probably be more than 5 head shavees for April 10th. There's now a golf tournament in the works (I guess). Hope I get to play in it.
Does anyone have experience raffleing off big things like cars or motorcycles? How would one set up something like that?
In other news:
We have multiple pregnant moms at Romp n' Roll who are due in the very near future so we want to send out the best wishes to all of them as they welcome new members to their families and Happy Birthday to Bradley Chang!
Need to steal a few winks before CJ wakes up.

1:02 PM Update
What a difference a day (and a blood transfusion) makes! Charlotte slept very well the rest of the morning and only woke up because of a screaming baby down the hall and slightly obnoxious perople talking loudly in the hallway.
She's been in a very good mood all morning and although she still complains about her back and belly, it's been less. No BM this morning but it's been very loose the last few times so it's not too concerning.
The hair keeps coming out and we have a good little bag full for the birds.
She's eating! Just a little but it's something. This morning she had some Cheerios and Cookie Dough Bites. (Yummmmmm. So did Daddy!) Heather from Child Life came by and kidnapped us to a party being held by some dental college students. They had pizza and Cheetos as well as construction paper and such to make pictures. I did a shamrock and a psychedelic landscape as directed by CJ. She ate about a half a piece of pizza and a Cheeto so compared to the last few days, she's gorging herself!
On top of all that, we got another new Dora that we haven't seen yet.
The Drs. came by and said her numbers keep getting better and better so she'll most likely be going home tomorrow. Then of course we'll turn right around and come back in for the next round of chemo.
I want to reiterate how awsome Heather and her team at Child Life are. They opereate almostly entirely on donations. Here's their website:
http://www.vcuchildrens.org/?id=777&sid=4
Anamazing thing is happening. CJ is asking for "that bread I has having before." Which means pizza crust. There's no pizza left from the party so I've sent the nurses on a mad quest to find something resembling pizza crust. If they can't come up with something, I'll be ordering some pizza here soon. I'd call and ask CiCi's for a pizza but they're a bit far away and they don't normally deliver. They're just being nice to us when they do.
Gotta go find a pizza joint downtown.