Marathon Update-CHICAGO!

Hello friends! We apologize for not updating earlier. Not only have we been busy but we haven’t been near a regular wi-fi connection so this blog post is a little late in coming. BUT HERE IT IS!


First of all, a fundraising update: the Double Marathon Challenge has raised over $300 in the last few days. Way to go and much thanks for the donations. We still have some donations coming in from Chicago folks and we will give you an update by Monday (hopefully) with totals.

Our trip to Chicago was very stress-free. Our good friend Carolyn offered us a ride to the airport even though we had to leave our house at 4:30 AM. It was so nice to have a chauffer that early in the morning (not to mention not having to leave one of our cars in the park n’ go lot). Both flights were smooth and easy. Once we got to Chicago, we hopped on the L train and made our way downtown to find our hostess.

Carolyn also hooked us up with a friend of hers who lives right down on Michigan Avenue. She is our hostess for the weekend. Her loft is just down the block from the 25 mile mark and Grant Park where the race begins and ends. Perfect!

The rest of Thursday was spent resting and settling in. Mid-afternoon, we journeyed out to the ‘burbs on commuter rail to see our college friends, Mike and Rebecca. We had a great dinner with them and were more than entertained by their almost 18-month old son who is chattering like a parrot these days.

Friday was a WALKING day. We walked to the Convention Center (probably about a mile or so from our place) to get the race packet and “walk the gauntlet” (as Roger likes to say) with all the vendors hocking their wares. We got lots of yummy food samples, pulled in lots of swag and met a few other charitable organizations that are fundraising through races. It was great to get in touch with these people and swap stories, business cards, and ideas. You never know where a contact like that may go.

Roger wore his new BALD CHICKS ROCK shirt that came from the New Mexico cancer walk earlier this month. His sister Becky designed the shirts and they look great! Roger got lots of interesting comments and inquiries about the shirt throughout the day. You can't tell in this picture, but the back of the shirt has one of Charlotte's pics in her 'bald chicks' shirt along with the CJSTUF logo on the back.  We saw one woman in Grant Park that commented on his shirt. When she saw it, she pulled off her own wig and showed off her bald head! She is not a cancer survivor but has alopecia.

After our trip to the convention center, we played tourist for the afternoon, walking through Grant and Millennium Park and then down Michigan Avenue and out to Navy Pier. By the time dinner time rolled around, we had walked at least 6 miles (whew!) so we headed back towards our lodgings via bus and L train and ended up at an Irish Pub across the street from our loft for dinner.

I must have been exhausted because not long after returning to the loft and changing our clothes, I was ASLEEP!

So today we begin the final countdown for the Marathon. We have been invited to a matinee performance of Candide and then a carb-loading dinner for Roger with our friends. Tomorrow will begin bright and early. The race starts at 7:30 AM (Central Time); however, Roger’s corral will probably cross the start line at about 8 AM or so. If you text and want to receive text updates of Roger’s progress, you can go to http://www.chicagomarathon.com/ and click on runner tracking. Enter Roger’s bib number (26761) and updates on his progress will be sent to your cell phone. I will try to keep facebook updated as well.

He is hoping to finish in about 5 hours.

Transition Update

No, your eyes are not deceiving you. The time-date stamp is correct. It's 1 AM...

My flight out of Atlanta was delayed (I guess due to that line of thunderstorms crossing the US) so we left Atlanta about the time I should have been landing in Richmond and landed in Richmond at midnight. And now I need to wind down before I can go to sleep.

Roger's and my "crossover" was very good. Aunt B, Aunt Lynn, and Uncle Terry arrived early Saturday afternoon and we made a grocery run and got some lunch while we waited for Roger to arrive. Charlotte was very amusing. She walks around with her baseball cap slung so low over her face I don't know how she can walk without bumping into anything. But somehow she manages to hide her eyes AND not walk into anything. It's funny.

When daddy arrived, she steamrolled to the front of RMH and attacked him with gusto. She missed her daddy! We did some visiting and then I swept Roger off on our date. To the Melting Pot!!! We hadn't been to the Melting Pot in a long time (it's definitely a special occasion thing for us) and I like it because the "slow food" thing and intimate atmosphere really makes for a good place for conversation. We talked a lot about all kinds of things...but mostly Charlotte. It was a great meal and a great date.

We relieved our babysitter around midnight only to find Charlotte still awake (!!!) [We're going to have to rethink hiring that babysitter again...HA HA!!] but she fell asleep soon after we got back. We all slept in on Sunday and then met up with the rest of the family for brunch at Jason's Deli. When the NM crew arrived for lunch, they were all wearing pink and purple with coordinating pink/purple baseball caps that had "CHARLOTTE" embroidered on them. Too cute! Charlotte was wearing her brand new pink BALD CHICKS ROCK shirt (thanks Megan!) and her light purple skirt and purple Tink cap so I think the folks at Jason's Deli thought we were holding the inaugural meeting of the Charlotte Fan Club. It was great.

After lunch, we went to the Gymboree next to Jason's and the Aunties proceeded to spoil Charlotte by buying her an adorable outfit complete with accessories. We also found a very cute cowgirl hat that actually met with the Diva's approval. Pics to follow, I'm sure. The day was topped off with a trip to the chocolate store across the street. Then we headed back to RMH to hang out until my Ground Angel came to sweep me away to the airport.

So I'm back in Richmond. I have work to do and mail to go through.

But first I must sleep...g'night.

Update:

(Just read Rachel's post AFTER I posted this one. We keep doing that! :-) )

Pretty good couple of days. Aunt B, Aunt Lynn, and Uncle Terry came in from New Mexico on Friday and were promptly pressed into babysitting service. Daddy came in Friday night and Mommy surprised him with the Melting Pot! It was very nice to just sit and talk for a while. We talked about Romp n’ Roll, interesting things we had heard on the news, and, of course, Charlotte. Lots and lots of Charlotte.
Charlotte has been doing pretty well even if her head now has a Marine, “jarhead” haircut with a soul patch on the back. I’ve noticed her attitude seems much more “Charlotte-y.” Not always good (she gets very irritated by the smaller kids who always want to be around her!) but much more normal.
We went out to Jason’s Deli for lunch yesterday and that was just awesome. Mommy and Daddy absolutely LOVE that place. Then we went to the Gymboree children’s clothing store next door and it was hard to keep Aunt B and Aunt Lynnard from buying out the place! They got all kinds of cool stuff for CJ and most of it was on sale, which is always good. One of the women working there was great with Charlotte and even took down the caringbridge information so we guess we’ll see her here eventually.
Next we went to the chocolaty goodness store across the way and as we were walking in the door, Charlotte started our family mantra, “Chocolate makes everything better!” Needless to say we were very full by the end of THAT excursion.
We went back to The House to get Mommy ready for the trip back to Richmond and, again, Charlotte was beautifully Charlotte. She loves her new lacing animals but it wasn’t long before she asked to play with Daddy’s shoe laces!  We found out later that Daddy is actually known as “The man with one shoe” among the kids at The House!
Mommy got off to the airport fine and CJ actually threw her kisses without prompting as she got into the Houston Ground Angels’ volunteer’s car (thank you again, HGA!). That's kind of a big deal. Her flight from Atlanta to Richmond got delayed so she didn’t get home until way late! But home she got. (huh?)
Daddy pulled out the guitar after Mommy left and entertained the kiddies for a bit including a set of twins who are new to The House. Only one is in treatment. Cute as all get out! We also met another new family had just who moved in. The daughter has a rare (it’s all rare) type of bone cancer in her hip. Charlotte really seemed to warm up to her so maybe that’s a relationship worth cultivating. She had a spot on her lung as well but it’s now gone and she’s cleared for proton! Yeah for good news!
Daddy has a lot to say about recent developments in his head and he’ll pen that epic when he gets it mostly straightened out but for now, this will have to do. Call it the “Transition Update.”

Happy Monday!

Damn, she's adorable!

Wow! What a day yesterday. As usual, our friends and family get here and we immediately make them work. Amy was no exception. She got here Friday morning and was watching Charlotte almost before she got her luggage.

Yesterday morning, both Rachel and I were running around like proverbial chickens getting ready for classes at Romp n' Roll (Rachel) and the Ashland Strawberry Faire (me) so Amy was on duty early. It definately helps that Charlotte, who had never met Aunt Amy, seems to love her to death.

For the sake of plot development, I need to wander off track for a bit.

The weather the last few days has been rainy to say the least. We had a couple of thunderstorms that were worthy of the Illinois storms I remember from when I was little. Samantha, Emily, and I, along with a "grownup" member were stuck in Romp n' Roll Wednesday while the heavens open up. The wind was blowing, the trees were boogying (sp?), the rain was going sideways, and, to our amazement, a Target shopping cart got loose and was slowly being pushed around the parking lot area in front of our door. It was moving in an almost nonchalant manner, as if the ghost taking its purchases to the car (ghost train?) could care less about the weather (I guess they wouldn't, would they?).

When the cart passed the front of RNR, we were amused and then got distracted by the hope that there wasn't a tornado setting down in the parking lot. When, a few minutes later, the cart passed by again, going the other direction, in the same nonchalant manner, then it started getting bizarre. Maybe the ghost forgot where it parked the ghost train.

This poor, indecisive cart passed by our front door no less than four times! We never saw it turn around and the fact that it did kept us nervous about tornados.

We also had some ceiling tile casualties in the back right next to the garage door. If it's not a leak, it's probably rain that got blown up under the awning and got in via the top of the garage door. But MAN! did it rain!

It kept raining and spitting and threatening to rain and didn't stop until Saturday morning. I was telling everyone how nice it was going to be for the Strawberry Faire during my Friday classes but it was hard to convince people with the gloomy weather right outside the window.

Which conveniently brings me back to my original story (How 'bout DAT fer a Segway?! Hemingway, eachyer heart out, eh?!).

I couldn't set up the tent and tables for our booth at the Strawberry Faire until Saturday morning since it was still drizzeling off and on so I had to get up extra early and head over. Good thing we only live 1 mile away. :-)

Everything got set up with a minimum amount of drama and the Ashland Jaycees helped a great deal Their booth was next to ours and they always have someone willing to help out. When scheduling made me leave early and there was no place to put our stuff, they didn't hesitate a second. The Flanagans, fellow founders of the chapter, stepped right up and all our junk is sitting in their family room (guess I need to pick that up sometime today).

Charlotte (oh...right...this is supposed to be about her, isn't it?) and Aunt Amy walked down to the faire and talk about an attention hog! Amy said she had trouble actually getting TO the faire what with all the people recognizing CJ and stopping them to see the little princess. It didn't hurt that she was wearing a NEW red "Bald Chicks Rock" that Megan Blake's mother made for her (I told her she could get a cottage industry going with those) and her yellow wide brimmed hat "with the bow in the front!" Of course, Amy doesn't know any of these people and they keep coming up and talking to CJ like they know her which they probably do. Amy was a champ and resisted the urge to tell everyone, "Stay away from my child!" Very funny.

In the end, they did get to the faire and Charlotte walked all over the place and saw lots of friends, teachers, and RNR members all morning. I bought a slab o' strawberries (who didn't?) and we schlurped on them all day. CJ had developed the habit of only eating the skin of strawberries. Not sure why. But I encouraged her to take a big bite of these strawberries and once she did, there was no stopping her!

Another side note: I'm not fond of strawberries. Never really have been. I know they're really good for you and I can tolerate them without gagging but I never reach for a strawberry if I've got the munchies. Not like blueberries. (Mmmmm...blueberries...oohhhh!) But the strawberries they had at the Ashland Strawberry Faire yesterday might have changed my mind. Wherever they were from, Hanover or California, I don't care. They were sweet through and through and I think I ate a couple of little baskets by myself. Never in my life have I had a taste turnaround like that (except maybe with cottage cheese but that's another story).

Charlotte ate a bunch too.

Amy finally took her home after a good long while and when I got back to get ready for my Southern Horizon gig at Cold Harbor, Charlotte was presiding over a tea party with Amy, Rachel, and Uncle Kolbey. I got suckered into sitting down for a little bit too.

Damn, she's adorable!

The result was that Charlotte had a great day as did Romp n' Roll, the Greater Ashland Jaycees, 30,000 Ashland Strawberry Faire guests, and all those folks at Cold Harbor who got to see that incredible sunset followed by an amazing moonrise! (I haven't even heard about Kids Night Out yet!)

Today, Charlotte and I will be headed to her boyfriend Wyatt's 4th Birthday party. That can only mean that Charlotte's is right around the corner!

Hope this post hasn't strained your eyes too much.

Rog

p.s. I have added a new skill set to my resume...FACE PAINTING! I've never done it before and I was expecting someone else to do it yesterday but as fate would have it, I was the one available when someone asked for it. I'm attaching a little example of my new skill! :-P

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

It was a Decent Night

It was a decent night. Charlotte is still spiking a fever and the Tylenol seems to keep it "artificially" at bay for a while. Then it goes up again. It's been as high as 103! She also keeps complaining that her "bum bum" is hurting and the area is very red. Nurse Nicky made up some special "booty paste" that is even better than the sensicare cream and that seems to help a little. My guess is a UTI but they're waiting on cultures to come back. Also, her latest blood counts were even lower. I guess yesterday, they were low but not quite low enough for platelet or blood transfusion. Today they were VERY low so she is getting a blood transfusion right now. She slept ok considering all of this and I got a few hours of shut-eye too. Now she's watching Sesame Street and drinking some water. Yay!

At least we are back on 7 East this time. It's so much quieter here and it's nice to be with a crew of nurses who really seem to know how to work with younger kids and really know how to interact with Charlotte. Such a difference!

I actually gave myself a "home manicure" last night. I had a fabulous coupon from Bath & Body Works and treated myself to some good stuff, including a manicure kit. Then it was off to CVS for buy 1 get 1 free nail polish. Can't beat it. I offered to paint Charlotte's nails but apparently that's only Miss Heather's job.

It seems that Auntie Retta and our friend Lauren will both be stopping by for a visit today. We will definitely be here through tonight and, of course, we just take it one day at a time. The view from the room is beautiful so I hope everyone enjoys the day!

I realized last night that we (meaning Charlotte) has spent more nights IN the hospital than OUT since January 20th. We've actually been in the hospital over 45 days and out for only 40. And during about half of those 40 days, we have been to clinic or therapy....quite a life!

Well, my tummy is grumbling so I need to round up some breakfast...

Rachel


Overall, it's been a very exhausting but OK day here at Camp MCV. The highlights:

She keeps getting a fever although it is taking longer for her temp to go back up each time after the tylenol. That should be a good sign but it's still frustrating that she's still having fevers.

She is on heavy duty antibiotics and she had her last dose of Vincristine for this cycle today. No poop yet today but we're definitely hoping for one. She's due. Her "bum bum" is still very irritated and we had the doctors take a peek just to make sure we don't need to be more concerned. Right now we are just watching it and slathering with cream. Her cultures have not come back with anything positive and her counts are a little better since the transfusion. They just took more blood/cultures this afternoon.

Her appetite has been very hit or miss all day. Not eating much at all. Her color is better since the transfusion but it seems more hair is falling out. We've been noticing the eyebrows and eyelashes thinning out a lot this round. It really stinks when the lashes get stuck in her eyes. Frustrates her a lot.

Thanks to Auntie Retta for coming to visit for a while as well as Lauren (one of our Romp n' Roll buddies) for bringing mommy lunch. Sweet potato chips....yum....We also got to chat about LOST for a bit. One of my favorite activities ever these days.

She has been quite the couch potato today despite everyone's best efforts to get her up and moving. We did go to the playroom one time and she got up to walk and ride in the wagon. Besides that, we've been coloring, watching movies, and reading books. She's also talking everyone's ear off. I guess she comes by it naturally. I, on the other hand, at least got some activity by going downstairs a few times and taking the STAIRS up on the way back. Seven flights up each time. My only exercise for the day so I'll take what I can get.

So now I'm just counting the minutes until Roger gets here. Should be relatively soon. Then changing of the guard and home to a full day of Romp n' Roll tomorrow. It seems based on everything going on that we will probably be here through Sunday.

A happy birthday to Ian. We are sorry to miss his party tomorrow, especially with the weather as it is.

Oh! A big plug for Megan Blake. Many of you know her from pics of our head shaving party. She's the fabulous woman who gave Charlotte her Bald Chicks Rock t-shirt. She also has her own Caring Bridge page and posts frequently in our Guestbook. Anyway, she was nominated for Supermom of the Year on Richmondmoms.com and totally deserves to win. Please go HERE to vote for her. You don't have to live in the Richmond area to vote for her. She gets a fabulous prize package (including stuff from Romp n' Roll!!) We have a great network here on Caring Bridge so I think if everyone who follows our page votes for her (and get some of YOUR friends to vote for her as well) she has a great chance!!

That's all I have to say for now.

Rachel

It's amazing the effect music has on some people.
We have been playing music for Charlotte since before she was born (surprize!). She was listening to Miles Davis "Kind Of Blue" in utero.

Throughout the tumor journey, we've been trying to keep music going most of the time one way or another whether it's a CD, videos, or me playing Frosty and Battle Cry Of Freedom on the "kitar." Just lately, though, we just haven't had as much straight music going and I wanted to remedy that. I also wanted to play something "normal" for her and in my experiments, I've found two ladies who have captured the ear of the princess.

One is Maggie Drennon (http://www.maggiedrennon.com/). I think she's only OK but we were listening to her CD on my iPod the other day and CJ got quite irate when I wouldn't repeat one of the songs for her.

Another singer with whom CJ has fallen in love, and the best example of "huh?", is Angelique Kidjo, an African pop singer with a seriously edgy voice who can sing intensly rhythmic tunes and beautiful ballads equally well. I played it for her the other day telling her it was her "Happy Music" and she just loved it! Tonight I put on a Kidjo CD and the effect was almost immediate. She settled down and went right to sleep and it wasn't during a slow, soft song either. It was during one of those intense, rhythmically driving songs.

So she's asleep and I thank Angelique Kidjo (http://www.kidjo.com/).

Both Mommy and Daddy are pretty worn out. I had a full day of absolutely WILD classes at Romp n' Roll along with a very fun Birthday Bash. I think there are pics and videos of today's events on Facebook. Lots of fun!

Well, as usual, it has taken me a very long time to get this done and I now need to sleep. See you all in the morning.

zzzzzzzzZZZZZZZzzzzzzzzz!!!

It's been a good day for the most part.

It's been a good day for the most part.
Camp was AWESOME at Romp n' Roll today. We had a great crowd of kids and a lot of fun was had by all. Then I got to have lunch with 2 of my girlfriends at a park in Church Hill (more Christophers...YUM).
Charlotte slept a LOT last night, going to bed before 9 and then getting up after 9 the next morning. The medications are STILL an issue and we ran into an even bigger issue after the new strategy (sneaking the medicine into chocolate milk) completely backfired. She tasted it right away and was very upset at the nurse who told her "there isn't any medicine in it". We did get her outside a bit on this BEAUTIFUL day. She is getting the last bit of her chemo tonight and we should be getting loaded up with fluids and will go home sometime tomorrow. Hopefully earlier rather than later...
Very much looking forward to the Head Shaving party tomorrow. There's been so much good energy behind it and I think that is having a positive effect on my energy and mood. To me, it doesn't matter how much money is raised (but I am EXTREMELY grateful and excited by everyone's efforts. It will REALLY help us a lot). The most important part of it all is an opportunity to show some "solidarity" for my favorite little bald chick and have a chance to play, laugh, and socialize.
We are playing a Charlotte "appearance" as a wait-and-see depending on many factors. I would love for her to be there but we don't want to overdo things.
I keep thinking that I have something else to say but it's not coming to me right now so I will just sign off...Charlotte is watching a Best of Elmo video and it is great. Lots of vignettes with Elmo appearances on Sesame Street including making Angry Faces with a very young Julia Roberts and talking with Whoopi Goldberg about her "fancy hair" (dreads). Too cute!

Update from Roger:
Well, while Rachel was having her great day at camp, I was having a ball doing Romp n' Roll To Go at Primrose at Atlee Commons. Got yet another new sign-up today (I think it's up to 13 now) so I guess word's getting out. Very cool. I got a very rough estimate about how much their Spring Fling raised. The initial estimate is approximately $2000, about half of which will be going to A.S.K. in Charlotte's name! Awsome folks, thanks!
Now, it's been a while since I've posted, mostly because Rachel has been on it and doing a great job but also a little bit because I got us in trouble with risk management for saying too much secret stuff. Rachel got the lecture from the suits which is very funny (funny - strange, not funny - haha) in a way (not to her) because she could have given them the lecture on how to do their job, not the other way around. Sorry I made you endure that, dear.
I also think they're mad that I sometimes let it slip that some of their medical staff are a bunch of bone heads who tell bald faced lies to my daughter about medicine in her sippy cup. What was with that?!? They obviously don't realize that she's smarter than most of us put together. Her catching them lying to her was damaging and it's just one more insult adding to her injury with which we'll have to deal. That's the kind of stuff people file lawsuits over.
I'll say again, I'm more than a bit underwhelmed with the quality of care we've received this time around. Some child psychology training might be in order before they work in peds. Thank God for Monica who I guess helped smooth at least some of the mess out. She also has really helped our mental status on more than one occasion. With all my griping, the psych Dept at MCV has proven to be top knotch.
So let's try to be positive: Psych Dept. - Good. Hem/Onc Dept. - Good! Pediatric neurosurgery - GOOD! Monica with the meal cart - Good. Child Life Dept. - GOOD!!! PICU - Good! Med students - pains in the asses but one of them will probably save my life one day - GOOD!!!!!
On to other items. Head shaving party. Can't happen soon enough! Gotta get this stuff off of my head. It's itching constantly and driving me batty. Not to mention it's super way disturbingly silver and grey! :-) I knew the white was pretty prevalent in the beard but didn't think that it would have spread to the head. (There are lyrics to a song in there somewhere).
Extra side note: Someone cleaned the house again (thanks probably Granny, Gramps, and/or Uncle Kolbey) and the floor in the office is kind of slick so my feet keep moving of their own accord. Could be kind of creepy if I hadn't already had a little smackeral of something Kalua-esque (sp?)
To the Montesorri clan, I just tapped a pan of lazagna from the deep freezer and BOY! was it tasty! The freezer and all the food in it has been, hands down, the longest lasting utilitarian gift we've received.
So back to the head shaving party...It's going to be a blast and I'm worried it might be too good. Please be patient if chaos reigns. My clippers and electric razor are ready to take care of your cranial exterior and I'll be on WHAN 1430AM again tomorrow at about 7:30 talking about it. Bob Flannagan might make an appearance as well. Any of you competing for the coveted "Bowl Of Hair Clippings Award" may come by too if you can get yourselves out of bed.
Take care everyone. Have a good Good Friday.

Catheter removed, MRI Showed no Growth, & Charlotte Sleeping Peacefully

How about West Xylophone?
CJ had the catheter removed this morning, an MRI which showed no growth (YAY!), and at last message from Rachel was sleeping peacefully.
She was extremely clingy this morning and I just sat on the couch with her for about a half hour while mommy got things packed and ready. She pretty much knew what was happening and didn't want to let go. I talked to her and told her that nasty catheter was coming out and they were going to take a picture of her brain and all of that was good and relatively painless. She seemed reassured. She asked me where I was going to be and I told her at Romp n' Roll and she seemed ok with it. I sang to her a little and then put her in the car with Mommy and Granny. I have a much better feeling about things now than I did a day or so ago.
Some dads from the Yahoo Dads group are here at Romp n' Roll playing around and we'll just keep it going for the rest of the day so there's lots of fun to be had.
Rachel didn't take the laptop so I'm the point person for CB updates. Granny will be staying at the hospital tonight. Mommy and Daddy are going to just stay home, drink wine, and maybe get some rest.
Major cool event during babies class today: got to see Isabelle crawl! She just started this week. We were all very excited. We also welcomed yet another set of twins (girls: Ashley and Amber) to Babies!
Also wonderful to see Megan Blake, Katie, and Katie's Grandma at Tumble Tunes this morning. Everyone seems to be doing a little better. LOVED the scarf and they gave CJ a t-shirt that reads, "Bald Chicks Rock!" Megan has a matching one, I hear. Thanks Grandma (she made them).
Gonna scrounge up lunch.
Come in and play!
Rog