70 Days and Counting

The Big Sur International Marathon is 70 days away. Gonna be rough. My knee is still healing and my miles are not increasing like they should be. My "spring" cold-thing and covering for sick employees at Romp n' Roll didn't help either. Well, since I already plan to finish dead last, I have nothing to worry about!

The temps are warming up in the mornings, though, so I'll get out more this week. I also went to see Dr. Anna for an adjustment and some electro-stim on the knee which helped. One funny thing is that I turned the electro-stim up so high that it gave me a blister on my leg. Felt kinda good, though.

The main reason I'm writing is to post a link to a story about the organization with which we've teamed in the Monterey area. The more I learn about the Children's Hospice and Palliative Care Coalition, the more I think we've made a good choice. The article definitely gave me a "moment" while reading in the living room tonight.

This is a group making a difference in families' lives and it's actually saving money in the surreal world of California economics.

On another note, if you're in the Richmond, VA area on Saturday, Feb 26, and you've been longing to get more involved with the Foundation, please come by our house at 9 Slash Ct. in Ashland at 4pm for the big "Volunteer Recruitment Event." There will be refreshments, productive assignments, and a dozen trained monkeys knitting humorous cummerbunds for all.

Ok, one of those things isn't true.

Last but not least, I now have my own FUN-raising page for Monument Ave 10K and Big Sur!!! Please click on the link, laugh at me in a pink skirt, and donate if you'd like.

Enjoy the end of winter and don't forget to hug your babies.

Mood Swings and The Double Marathon Challenge

Roger here,

Our trip to Colorado was really wonderful and I can't tell you how great it was to see my beautiful niece, Cerisa, walking down the aisle all grownup and stuff. She's a married woman now. Congrats C-Weed! It was an honor to sing at your wedding.

There were some very bittersweet parts, though for obvious reasons. CJ should have been there.

Coming back to Virginia was actually kind of tough on me for some reason and I'm still not completely over it. I've had quite a few "moments" the past few days and it's been harder than usual to think about Charlotte and what she had to go through. Tuesday was the worst day I've had in a long while. It all started when I was looking for a template of the CJSTUF letterhead and came across the letter I wrote to Disney. It was all downhill from there. I was loosing it at the drop of a hat and really feeling a distinct lack of self control. I had to sit in my car in front of Romp n' Roll for a few minutes and let it all out of my system before going in (probably feeling a little sorry for myself, I must confess).

The strange thing is, the moment I walked into Romp n' Roll, I started feeling better. Rachel was teaching my Babies! class because I had to come in late and it was so nice to see everyone laughing and playing. All the positive energy really bolstered me.

Another thing that doesn't help is that it popped into my head how we used to gauge Charlotte's pain level. The scale of 1-10 and the happy-to-sad face graph really didn't work for her but she would respond pretty accurately when we asked her if her pain level was "a little" (thumb and forefinger apart), "a lot" (hands spread several inches apart), or "alotalot" (hands spread wide apart). I so hate the fact that we had to use that system. Any system at all for that matter.

I've had a few more ups and downs since then but nothing like Tuesday. I'm sure it's just my every six month meltdown that comes about once a month or so now. I'm sure getting back into running will help that.

Hey I think I smell a segue!

Some of you may have heard about my "Double Marathon Challenge" (or "Double Marathon Madness" as Rachel calls it) where I will be running the Chicago Marathon in October and then the Richmond Marathon in November all to raise funds for CJSTUF. Well, training begins on Saturday! How would YOU like to be involved?

We'll need TEAM CJ members for spirit groups along the routes of both marathons and if anyone else wants to run in any of the races (there's also the McDonalds 1/2 Marathon, HCAVA 8K, and a Kids Fun Run in Richmond), let us know. Anyone raising $1,000 or more will get registration fees reimbursed!

I'm tweeking the pledge form to include a few extra choices. (More on that later but think "VT vs UM!")

It's a three day a week program that worked very well for me a couple of Richmond Marathons ago. Anyone is invited to come running with me. I will be running every Tuesday, Thursday, and Saturday morning bright and early Starting at 7am. Short runs to start off adding mileage as time goes by.

If anyone isn't part of an official training team, feel free to come out and mosey a while with me. I might be going slow but at least I'll be going.

I would love for some Richmonders to come with us up to Chicago and/or Chicagoans to come down to Richmond for the respective races. It'll be a heck of a party in both cities!

Did I mention my goal is $10,000? I really have no fear that we won't reach it.

Here's a great idea that I'm shamelessly stealing: PLEDGEWARS! I think most of you know that Rachel and I are both graduates of the University of Miami and when I'm not bleeding orange and blue for the Denver Broncos or green and yellow for the Packers, I'm mixing them and bleeding orange and green for the "U." For some strange reason, I have run into a certain amount of resistance from people in this part of the country; especially from those turkeys in Blacksburg. Well, to be fair, I want to give all you Virginia Tech fans the chance to show me who's boss, I'm throwing down the gauntlet. If VT fans raise more money than UM fans then during the Richmond Marathon, I will wear either a turkey outfit or neck-to-toe, including socks and underwear, Virginia Tech garb (I shudder at the thought!). The hat will be a pink or purple Charlotte hat no matter which side wins.

C'mon Canes! You must save me from this fate. We will be keeping a running tally going and we'll have to see what colors I wear on November 13th! Stay tuned.

Here's a GREAT memory we have of Charlotte: When we would say, "We've got some Canes over here," we taught Charlotte to say "Whoosh! Whoosh!" If that's not inspiration for you, I don't know what is.

Last but not least, Coco's Chocolate Dream Chocolatiers, the company letting us use "Chocolate Makes Everything Better," has begun making butterfly chocolates! I don't think I ever told her about the butterfly connection. Please go to her website and thank them or just say hi from a CJ fan. If anyone wants to do a "Chocolate Stand" as a FUN-raiser, let me know and we'll get it set up.

Thanks for letting me rant. I'll keep searching.

Where does the time go???

With everything Roger and I have going on, time for blogging has been difficult lately. Being busy doesn't even begin to explain it. Things are definitely gearing up with Romp n' Roll's move to Mechanicsville. So far, so good. Everything seems to be running on schedule and in line with only a few minor glitches here and there (all manageable). It's still a LOT of work. I don't even want to imagine what it would be like if we didn't have things moving smoothly.

For those who haven't heard, we will be closing the Virginia Center location on May 9th and using that next week to move our equipment and any remaining furniture over to the new site. Those of you who offered trucks: that's when we'll need 'em. We'll be contacting you. We are slated to open for business in the new location on May 17th. Mark you calendars and cross your fingers.

The CJSTUF Benefit Concert at RMC was last night. I didn't make it until near the end. It was kind of a small crowd BUT they raised over $450 for us. Thanks to Mu Phi Epsilon and all the musicians for their work on this endeavor.

Today and tomorrow is the Kid Stuff Yard Sale at St. Thomas Episcopal Church. You can get more info about it in the last blog post but if you're in the market for any maternity, baby, or kid stuff, head over there tomorrow morning. Proceeds benefit many local charities, including CJSTUF.

Slightly further down the horizon is the Moms Club Used Book Sale on May 6th. This will be at Romp n' Roll (right before we move!) from 3-7 PM. If you're a book lover like I am, you will want to check it out. They will have books for all ages plus some videos and other media.

Not long after that is the Chick-Fil-A Cow Drop. Have you bought your tickets yet? If not, you can stop by Chick-Fil-A at Virginia Center any time. You do NOT have to be present at the Cow Drop event on May 8th to claim your prize, but if you DO come out to the Hanover Airport, you're in for a treat. The event is always family friendly and fun. There is more information about the Cow Drop on our website.

Speaking of which....if you haven't heard or seen, we have a newly remodeled and relaunched website for the foundation. Included on the site is the new video, updated information about our fundraisers and events, as well as the applications for our financial assistance grants. I think we've worked out all the bugs and broken links, but if you find anything amiss, just drop me or Roger a line.

If you know of any families served by VCU Children's Medical Center (MCV), please let them know that our applications for the first round of grants are due (postmarked by) May 1st. We want to give away $5000 by June 1st so spread the word. The application process is very simple (only two pages and no financial information is required).

Future developments with the website will include the CJSTUF merchandise area (CJ STUFF...), ways to hook into our volunteer database, and more. Stay tuned! Big thanks to Jay and Ruth Campbell at Jade Enterprises for all their support in hosting our server and developing the website.

In family news, my parents are coming for a 3-week visit starting next week. We are very excited to see them and in true fashion, we will put them to work straight away on long-delayed home projects and help with the romp n' roll move. We never cease to appreciate their generosity and their talents! Hopefully they will get to relax a little too.

Before we know it, Roger and I will be heading out to Denver for his niece Cerissa's wedding at the end of May. We are very excited for her and Patrick although Roger has a very hard time realizing that his niece is all grown up. This might be our only "vacation" for a while so we are definitely looking forward to it from that perspective as well.

Ok, I'll end this now because...guess what? I've got more work to do!

Happy Weekend, everyone.

There's No Such Thing As "Closure"

That word should be stricken from the Earth. I think people who throw around the term, "closure," should be forced to watch interpretive dance chronicling the Middle East peace process...in REAL TIME...while having to pee.

(Look at that, already digressing)

Warning, long rambling post ahead.

The Richmond Jazz Society answers the phone or greets audiences at official events buy saying, "Bright Moments" by request, and in memory of local jazz legend, Joe Kennedy, Jr. I've always liked that. It's a simple thing but it has helped center me every now and then.

I could certainly use some centering right now. The ups and downs and the swings from light to dark and back again are kind of getting old.

Rachel and I are still trying to juggle everything (CJSTUF, moving the business, wrestling with bills, the many other responsibilities and chores we have) while not killing each other, and the "CJ moments" keep happening. Pretty frequently these days. They aren't all bad, some are downright heartwarming. Like the child at Romp n' Roll yesterday who took a castanet, opened it up, and held it to her ear like a cell phone that flips out. Charlotte did that all the time very early on. It made me stop and do an inward, "Awwww." I even showed it to another child tonight.

But as I was driving home from a very long day of ups and downs, it really nailed me between the eyes that I will never hold her again. It was just a very sad thought as I headed north. It's nothing that debilitates me or makes me curl up into a fetal position (decidedly inconvenient when driving) but it still really, really sucks.

On top of that, we keep finding out about new members of "The MCV Vacation Club." They don't really have to be at MCV, just battling cancer.

Lots of musician friends are having biopsies or radiation or chemo or all of the above. One in particular is Judy Kushner, wife of Gantt Kushner, music engineer of the two Uptown Vocal Jazz Quartet CDs and Ginny's solo CD. A beautifully spiritual family. Judy just had surgery for brain cancer. From Gantt's reports, she's doing very well and has started PT and OT. Please feel free to contact them as they can use the support (moral and otherwise). He also has a FB site: http://www.facebook.com/gantt.kushner and his studio is called "Gizmo Studios"

There's also a little boy named Ricky who just moved onto the 7th floor and is now under the care of Dr. Tye. He's got TWO tumors working and they aren't the same kind (can't even fathom the odds of that happening). They came down from a homeless shelter up north and have very little. I haven't had the time to give them the attention they deserve but they at least are hooked up with the names of people and organizations that could help them. They all need your positive energy.

Thanks to ASK, Starlight, Reesestrong, Child Life, LINC and the other organizations helping them, and other children, out in one way or another.

Out of the blue today, a child at Romp n' Roll To Go said, "Mr. Roger, I'm sorry your son died." (a little confused, maybe, but very touching nonetheless). I think it kind of freaked out the staff person assisting me which I actually found slightly amusing.

There are some good things happening; part of the "swings to the light." The money keeps coming in for TEAM CJ. The Monument Ave. 10k has now brought in somewhere between $5,000 and $6,000 and still counting!

We didn't win the Spirit Group contest but we had a great time and those who won were very deserving:

This is froom an email from the Sportsbackers -

"According to the judges from Hirschler Fleicher:

First Place Winner - All Saints Catholic School

Second Place Winner - Martin Luther King, Jr. Middle School

Third Place Winner - Dance Masters Diva Dance Team"

NEXT TIME!!! Sat, April 2, 2011. SAVE THE DATE NOW!

Free Babies and Toddlers week at RnR is going gangbusters! It's been great seeing all the new (literally) faces. (still waiting till someone comes in looking for their free baby)

Chick-fil-a is holding their 3rd annual Cow Drop on May 8 at the Hanover County Airport. Tickets bought at the VA Center Marketplace CFA will benefit CJSTUF!

Guess this isn't as long as it could be. It's still rambling, though.

One Month

Yep, yesterday was a month (It was also Peter Gabriel's Birthday). As Rachel says, it seems a lifetime ago. What has been happening to me, lately, has been that I'll look at a picture of Charlotte and be surprised, "Woah! She's gone, that's right. Man, that's weird." The "moments" are always there.

Her stuff is still in her room, no real need to do anything with it just now, kids at Romp n' Roll still ask about her including one at a Birthday Bash yesterday who I didn't even know had met CJ, and I still think about her constantly.

The child yesterday asked, "Where's your kid?" Who knows, maybe it was just a generic question kids ask. They do that sometimes. Mom was very cool about it. Sometimes, parents who know our story whither in embarrassment when kids do that but I have no problem with it. I love talking about Charlotte.

I answered the child, "Well, here's a picture of her." and showed her the picture box Annette made with CJ's framed picture and all the great quotes (Thanks, again Annette. You're so amazing!) And that was it. I think kids just need to be reassured sometimes. About what, exactly, I'm not sure. Just being "present" counts for a lot.

We really didn't think a lot about the actual month out thing although it did cross our minds. Mainly because we were SO busy. We held classes at RnR, Rachel and Emily organized (I escaped that!), I got a replacement coat for the one that started falling apart on me, and there were two Birthday Bashes, one of which was a 2-hour party instead of our normal 90-min.

Both parties were a blast and very therapeutic. Every moment I spend in classes or parties at RnR seems to help me deal.

The weekend weather made us cancel Saturday morning classes for the second week in a row. There will many makeups to schedule.

Also as Rachel said, CJSTUF is moving right along! We seem to still be doing things the right way and when we finally get our official non-profit status, the flood gates of activity should open wide on all fronts. It just takes a while to get everything in place and thanks to our wonderful advisory council, it IS being done the right way.

That brings me to the latest CJSTUF stuff. The Monument Ave. 10k planning and TEAM CJ organization is progressing. We have a good problem which I might have already mentioned. Some enthusiastic members actually registered more runners/walkers on their codes than I had planned so if you have not registered and have trouble once you try, please let me know. I'll bet it's getting close to full.

I officially registered for the Chicago Marathon in October. That means I'll be doing Chicago in October and Richmond in November. Oi! No fundraising for these yet. We'll let you know. If anyone wants to do either one/both of these with me, let me know.

Thought I'd let you all know about the efforts and sentiments of others:

James Staudte is a friend from U of Miami and has been training like a mad dog and collecting pledges for CJSTUF. He's been blogging about his experiences on his own page.

We also got a wonderful note from a member at Romp n' Roll which pretty much recounts several stories we've heard about Charlotte and her activities when we weren't looking. With her permission, I've pasted it below:

"Dear Rachel and Roger,

My thoughts and prayers have been with you for the past year. And it is with a heavy heart that I sit down to write to you how deeply sorry we are that Charlotte has passed. While I have no way of understanding what you are going through and will continue to go through as you grieve, I can share with you my memory of your sweet daughter.

Molly and I were visiting Romp n Roll for one of the first times at Open Gym. We were the only ones there until a charming little curly-headed girl bounded into the room. She immediately introduced herself…not waiting for me to initiate. When I learned she was your daughter, I thought what a lucky little girl to have parents who own this awesome kids’ gym. (The only thing cooler would be if you lived in a castle and owned a pony farm. J) Molly was just a baby so she wasn’t able to do much in the gym. And Charlotte took it on herself, as the proud owner, to show us how to utilize each piece of equipment. The funniest part was that she used her impeccable charm and manners to ask my assistance in “spotting” her or giving her piggy-back rides. I can still clearly see her adorable smile and hear her angelic “please”. And it worked. Almost to the point that I kept temporarily forgetting about baby Molly just sitting over by the little rompers area. Through her exuberance, Charlotte was able to show me what fun being a toddler was! I wanted to take her home with us. I couldn’t wait for Molly to get to toddlerhood so we could laugh and play like sweet Charlotte did!

So it’s a simple and brief moment in your child’s life that I am recounting for you. But I am sharing it because I want you to realize what a lasting impression she made on me in that brief 30 minutes or so. I imagine that’s how she lived her four years…to the very fullest when she could; charming people along the way. Charm is not always easy to find in other people’s children. Cuteness, sweetness…yes. But charm is a sign of someone special. How fortunate you are to be Charming Charlotte’s parents! And I know you realize that every day.

With our deepest sympathy,"

We LOVE stories like these. Please keep sending them if you have them.

Want to talk about the weather?

It seems like that's ALL anyone is doing these days. And for good reason, I suppose. If you haven't turned on the TV or radio in about a week or two, you may want to know that the mid-Atlantic is getting the biggest snowstorm of the year...decade...century...millenium. Oh, you hadn't heard?

Fortunately, we just keep Rompin' and Rollin'. The work schedule has had everyone in a tizzy and we've had to cancel Saturday classes two weeks in a row. Friday's classes were cancelled this week as well and we will have to see about Sunday. Most of our birthday parties have simply been rescheduled (rather than cancelled outright) and we even had some brave souls who came out in the rain and sleet yesterday for Max's 2nd birthday party. It was a blast! Roger and I hadn't worked a party together in ages. Open Gym was hoppin' earlier that day too before the weather got too nasty.

Yes, work has been busy and it's been a very good distraction. I think I've said that before but I think it also bears repeating. We have also been rolling along with the Foundation stuff. Our bylaws were approved by our Advisory Council/Board this week which means we can now begin to officially work with the IRS on our non-profit status. The members of the Board have also been meeting in their subcommittees to get things rolling. We have heard the requests and I promise that CJSTUF t-shirts and other merchandise are all coming soon!

With all of this going on, it's a sharp reality check to realize that today is February 6th and tomorrow will mark one month since her death. It really blows my mind. This month has been so busy that I honestly feel like it's been a lifetime since her death. I miss her every day. I see her in everything I do. I am sad but not distraught. I am so glad that Roger and I have something like CJSTUF in which to sink our energy. It definitely keeps the misery at bay. I was listening to one of my favorite podcasts yesterday: This American Life. If you've never heard it, it's a fascinating and fabulous public radio magazine with stories wrapped around a theme each week. Their show from the first week of the year was called 2010 and it contained stories surrounding "predictions" for the coming year. The first story is by Shalom Auslander about his neighbor and friend who was dying of cancer. The story really touched a nerve for me (in a good way) and I encourage you to take a listen (you can click on the link to get to their website and archive).

So now that I have your attention with our latest blog post, I will make sure you know about a few important announcements:

1. The THUMBS UP BALL is Saturday February 13th from 4:30-7 PM at Shady Grove Methodist in Mechanicsville. You can't get in without a ticket but you can get tickets at any Romp n' Roll location for just $10 each. This is a family event with food, live music, a visit from the Dance Fairy, a silent auction with lots of great sponsors (bring your checkbook!) . I am sure it will be a blast! Huge thanks to the MOMS Club of Mechanicsville for putting this together. I am hoping that it will be successful enough to turn it into an annual event!

2. If you are running for TEAM CJ in the Monument Ave 10K, don't forget to download your pledge forms. We have over 57 runners taking part in this event, not to mention the cheering squad that is forming as well.

3. Good news on the ReeseStrong front: she had her latest MRI on Friday (2/5) and continues to be cancer free. She got a very clean bill of health from the docs and we are so happy for them!

I think that's it for now. Roger is upstairs working on some music stuff and I'm sifting through emails, paperwork, and correspondence while I laze by the warm fire. If you're somewhere surrounded by snow and ice, stay warm. If you are somewhere warm, count your blessings!

No business like SNOW business...

Well, it's the end of January and we have a forecast for SNOW this weekend. There was a hilarious article posted in the Richmond Times-Dispatch (online) about the phenomenon that is SNOW in RICHMOND. If you live in Richmond, you will understand this and appreciate it (in all its humor). If you don't live here, this will give you an inkling as to why we are all so crazy when it comes to snow here...everybody have your milk and bread?

The latest forecast seems to be on the lesser side in terms of accumulation and that's just fine by me. We have a full slate of birthday parties this weekend at Romp n' Roll and I'd rather not reschedule them!

Speaking of Romp n' Roll, Roger and I are back in the saddle and couldn't feel better about it. The past two weeks have been great. We have been energized by the kids and feel so supported by our families. Plus, spring registration is rolling so we are excited about that.

Roger's birthday is this weekend and we have a friend from our old college days (Becky!) coming to visit from Chicago so we are excited. Aside from our normal work obligations, we are planning to take in a concert by the Atkinsons at Ashland Coffee and Tea and probably just do some hangin'.

Everyone keeps asking us how we are. I surprise myself every time I say, "I'm ok." but I really am. I have those moments where I miss her (every day) and those moments when I think about her (at least once an hour) but I'm not in a puddle on the floor and I guess that counts for something. Staying busy definitely seems to help, my new exercise routine seems to help (hooray for the Wii!) and working on the FOUNDATION definitely helps but otherwise there is no way that I can truly explain how or why I feel the way I do. It just is...

I can't remember if we've posted this yet, but mark your calendars for the THUMBS UP BALL on Saturday, February 13th from 4-7 PM. This is a family dance for all ages at the Shady Grove Methodist Church in Mechanicsville and will be a great fundraiser for CJSTUF. The Moms Club of Mechanicsville is organizing it. There will be a silent auction, live music by Triad, and a visit from the Dance Fairy! Kids are encouraged to dress in their festive attire! Tickets are $10 and available at any Romp n' Roll location. There is an event link on our FACEBOOK fan page and more details will be posted on the CJSTUF events page soon (we're fixing some link stuff...). You can contact me or Roger if you have further questions. The event hall holds about 1000 people and we would love for this to be a SELL OUT!

Ok, I think I've babbled on enough and need to get back to work. Hope everyone has a good weekend.

Rachel

What I MEANT To Say Was...

Here is the text of what I was trying to say at the service today. I did a little on-the-fly editing so it's not exact but most of it is there and some stuff I left out.

I'll let Rachel post her own. Thank you all for coming and being a part of our CJ Celebration.

There Was Just Something About Her

Can’t say it much differently than that. Charlotte Jennie Reynolds was an amazing presence, and continues to be even now. She touched so many people from all over the world whether you knew her personally and got to spend time with her or just met her once or even those who merely saw her picture and heard about her only after she got sick.

We’re not talking a Nobel laureate, world leader, or some guy who did something to get into a history book. We’re talking a 4_ year old kid. One who was no more precious to her parents than these kids down front are to their parents (Maybe our experience has helped them to be more so). There was just something about her.

We all wanted to pour ourselves into her one way or another and one that seemed very popular was her name. Or “names” shall I say.

Charlotte was named after the spider in the classic book, Charlotte’s Web by E.B. White. It’s one of Rachel’s favorite books and one of the first movies I ever remember seeing as a child. Jennie came from the grandmothers. My grandma’s name is Jenny, Rachel’s great-grandma’s name was Jennie and it is her middle name as well. I remember being so proud to tell my Gramses (My nickname for Grandma Jenny) Charlotte’s name.

Even before she was born, she had names.

Once we discovered we were pregnant, we decided we didn’t want to learn the sex so most of what we called “it” was gender neutral or at least both masculine and feminine were given equal time.

I’m sure Rachel will correct me if I’m wrong (and of course I’m wrong, I’m the husband), but I think our first name for her was “Peanut” for multiple reasons. Ya know when you open the peanut shell and sometimes you get three instead of two? That third peanut is an unexpected bonus and we liked using that as kind of an inside joke when something good would happen, like finding a five dollar bill, like finding out we’re gonna’ have a baby. “That’s a third peanut!” It also described kind of what she looked like in the first ultrasound. Others have used it as a name for her independent of our journey.

Next was the “Little Jumping Bean” because as this thing grew inside Rachel’s belly, it became pretty active even before I could feel anything from the outside. As time went by, she would sometimes react pretty strongly to various types of music. (More about that later)

We wanted to reveal the baby news via our annual Christmas letter so we were going to have to keep it quiet for a little bit. Not something at which I excel. I wanted to at least let Grandma Jenny know so I called her up one night to tell her. Well Jaybird (which is another one of her nicknames) was in bed recovering from a recent stroke and I guess I should have waited when there weren’t so many people hanging around her bedside. I told her I had something to tell her and that she couldn’t tell anyone else yet. She said “OK” but when I let her know, she let out such a whoop and a holler that just about spilled the bean right there. Everyone present guessed what I had told Gramses but we still didn’t want to ruin the surprise. So “Zazou” was born.

I went out to Farmington, NM for an early Christmas that year and started weaving a deception for which I’m still proud! I slowly began leaking the news that I had auditioned for The Lion King – The Musical and had won the part of Zazou in the European touring company and we would be moving there for three years starting in the spring. I don’t even know if there IS a European touring company! I have just enough credibility with the few connections I have in the music and theater world that with repetition, I think I got most of the family off the baby track.
Then of course I went and confirmed everyone’s original suspicions the night before I left. After that, CJ was often referred to as ”Zazou.”

Still not knowing what sex Charlotte was, we came up with “The Creature”. That was actually a term of endearment we had for a monstrous tomato plant we had back in Boone, NC when we lived there but that’s another story. What’s important is that the name moved with us and stuck to CJ in utero.

Charlotte LOVED music before she was born. Surprising? J We played Miles Davis’s Kind Of Blue for her (among other things) and often went to concerts where she would boogie in Rachel’s belly like she was dancing the Can-Can. For example: Once at a choral concert at Randolph-Macon College, Zazou was quiet throughout the Chamber Singers and Concert Choir sections of the performance but once the Jazz Vocal Ensemble started up, she started jumping around in there making mommy’s life very interesting! Not sure if she liked the music or not.

So we started calling her the “Can-Can Dancing Creature” which somehow morphed into “Zazou, the Amazing Can-Can Dancing Creature.”


“Mater” was a gift from our friend, Dr. Anna Madland. Charlotte was due around July 25th but due to complications, the docs at St. Marys induced Rachel with Pitocin on Friday, July 8th. I was at WHAN the radio station getting ready for our live broadcast at the Tomato Festival the next day, when Rachel called me and said, “Guess what? We’re having a baby! Today!!!” So I never did that broadcast and Charlotte was born the next day around 1:30pm. Right in the middle of the "Mater Festival!” So that’s where that came from. If you would ask her what ‘Mater was afraid of, she would shout out, “THE GHOSTLIGHT!!!” in her best ‘Mater voice.

And speaking of WHAN, I used to do an afternoon show every weekday and I would often take Charlotte with me. Most of the time, she was very quiet and well behaved. Then again, sometimes, she would just be the wonderful wild and crazy girl that she was and I couldn’t help but put her on the air. Sometimes, she got on accidentally like the time I forgot to turn off the microphone and she went over the airwaves right along with the latest version of Whisky For Breakfast. A gentleman named Charlie I Cry Taylor would come into the station every once in a while to visit and promote one of the many events with which he was involved and, fell in love with CJ. It was he who came up with “CJ The DJ.” Definitely one of my favorites.

Rachel sometimes called her “Doodle Bug”. No real reason that I can tell except that it’s really cute. Just like CJ!

Her preschool friends had a few nicknames for her like, “Char-char” or just “Char” for short and “Custard” which is Strawberry Shortcake’s cat!

She was “Princess Charlotte” and “The Drama Queen” to everyone at Romp n’ Roll

“My Baby Girl” had various permutations but it’s probably the one I used the most. “I love my Baby Girl” or “Yes, my sweet Baby Girl?”

Then there’s “Monkey Butt” which, I must admit, came by much less organically. I think it was the host of Survivor (or was it American Idol? Not sure) who was on The Ellen DeGeneres Show one day and he mentioned that he called his daughter “Chicken Butt.” I thought, “That’s cool! If I ever have a kid, I want to call him/her that!” Unfortunately, Chicken Butt never really seemed right once Charlotte came around and it evolved into “Monkey Butt” somehow. No idea. But “Monkey Butt” it was and she would tell you proudly that that was what I called her. And now I understand the Ululating Mummies have a song called “Monkey Butt.” How exciting!

The last two are known to most of you and probably how she will be remembered forever: “The Caterpillar” and “The Butterfly” The story was simple and thought up while negotiating a rough spot during CJ’s Make A Wish trip to Disney World. We had stopped at a playground in the Magic Kingdom where dozens of kids were running around, playing, climbing, etc... I know Charlotte wanted to go play but she knew she couldn’t do most of what all the other kids were doing and I could feel a very deep sense of frustration coming from her. I felt helpless and kind of just pulled the infamous “Butterfly Analogy” out of my shoe on the spot. I made sure she knew what happened with caterpillars and butterflies and then told her that she was like a caterpillar and that soon she would be changing into a beautiful butterfly but first a cocoon had to close around her. It was already starting to close around her and one day she would go to sleep and when she woke up, she would be a beautiful butterfly. I told her most of us won’t get to be a butterfly for a very long time but she gets to do it before almost everyone.

That must have done the trick because she was fine with just about everything for the rest of the trip. Whatever muse touched me on the shoulder and put that analogy into my head deserves a beermosa. (HA!)

We talked many times after that day about how she was changing. She even occasionally substituted her ongoing Dora, Diego, etc… video plot-point recaps with the announcement that she was a caterpillar and would soon change into a beautiful butterfly. Always preceded by, “Daddy?” Then me: “Charlotte…”

While she could still answer me, I would ask her, “Are you my caterpillar?” and she would nod.

“Are you excited about becoming a beautiful butterfly?”

Nod

“It’s hard changing into a butterfly isn’t it?”

Nod

“I’ll bet you’re going to be the most beautiful butterfly that ever was.”

Nod

“We probably won’t be able to see you, but will you come visit us when you’re a beautiful butterfly?”

Nod

“Want a boot to the head?”

Shake head

That’s about the gist of it.

There are probably many others I have left out or never knew. I’m sure I’ll be hearing of other people’s special, secret CJ nicknames for some time to come.

Gives me something else to look forward to.

Charlotte is still here, sort of.

She's reacting less and less to questions and her breathing goes through these periods of slowdown and then it comes back up. I'm sure this will increase.

Nurse Cathy checked her out today. She said CJ's heart rate is slowing and her body is to the point where it won't take any food/water and wouldn't know what to do with it if it had some. Her blood pressure is very good which means she's in no distress or pain. Cathy confirmed for us that Charlotte would probably pass within the next few days. There will be noticable additions to the website when that happens so that everyone will know without having to read the blog because who knows what shape we'll be in?

Charlotte and I have a certain way of holding hands that I think she got from watching the movie, Wall-E. The concept of holding hands and interlocking fingers became a major theme and Charlotte developed this way of wanting to hold hands with me. I'll assume she did that with others but I'm not sure. Yesterday, she initiated that with me which made my day.

I quite possibly heard her last words the other day as well. I may have already mentioned this but at one point, she actually opened her eyes and said, "Daddy?" (preparing to tell me a plot point from one of her books or videos the way she had done so many times in the last few months)

Just about falling off the chair, I sputtered out something like, "Yes dear?" or "yeah, Baby?" or "Charlotte?" or something like that. I was pretty flustered by hearing her little voice which was raspy from dryness and lack of use.

"Marianna (I think) put on her crown and ..." didn't understand the rest. I asked her to say it again but the moment was gone. Haven't heard her speak since then except to grunt "Mm Hmm" (yes) once when we asked her if she wanted some chocolate milk.

The reading vigil continues and it's become so much more than I ever imagined. I came up with the concept to have voices filling Charlotte's last few days with stories because books/words are her favorite thing in the world. Since she couldn't manipulate the books very well anymore and I knew we weren't going to be able to read to her all day so I figured we'd get other people to help.

What has happened is people from all over, some we've never met before, have come in/Skyped in at all hours of the day and night. Some of you have brought your children and have used the opportunity as a very healthy way to introduce them to the concept of death. Some of you have sent in recordings or videos of yourselves reading stories and the energy of this house has remained. The only thing missing is a Skype from Holland. (Let us know when you're available Karin. Needs to be soon.)

The food, which has become healthier (mostly), keeps coming in and the wine bottles have been multiplying. Rachel and I are determined to bring our physical selves (fat tubs of goo) back up to the level of our spiritual selves (growing ever more peaceful).

I helped with Winter Camp at Romp n' Roll this morning which was great. It was a total parade of cuteness and it was so nice to feel the warmth of the kids when they saw me. Next week we start back big time and I think I'll be taking over some of Rachel's classes for a little while. I think Samantha, Annette, and Emily (who have taken over the lion's share of work at Romp n' Roll) can't give up the responsibility and extra hours fast enough!

Speaking of Emily, she's gone and done a very cool thing. She is a student at Randolph-Macon College in the Drama Dept. and is directing the upcoming production of Alice In Wonderland. She has coordinated with Prof. Joe Mattys to donate all ticket sales to Charlotte's fund!

So go see it! :-) It runs March 17-20, 2010 at the Black Box Theater on R-MC's campus. Tickets are $5. Can't beat it with a stick! I'm thinking we might pick one of those nights to be CJSTUF Night Out At The Black Box. We'll let you know. Call(804) 752-7316 to reserve your tickets. It's a small venue and large crowds are expected every night.

Here's another thing coming up for runners/walkers. For anyone who wants to use the races for fund raising, we will have registrations available for the Ukrop's (What are they going to call it next year?) Monument Ave 10K in March and then more for the Suntrust Richmond Marathon, McDonald's Half Marathon, and HCAVA 8K in November. All those interested in participating who raise $500 or more in pledges will receive their 10K registration free. Not sure what the limit will be for the Nov races.

For the 10K, we will have pledge forms available very soon or you can make your own. Make sure all checks are made out to Charlotte or CJSTUF. For the November races, we hope to be a little more technically advanced. We're working on our own race accesories and everything.

Please let me know if you're interested in participating and what race(s) you want to be in. I'll be doing the 10K, the Richmond Marathon, and probably a few other races during the year. I even want to try the very questionable act of running the Chicago Marathon in October as well.

That's all for now.

New drug, Velcade

Hi everyone,Not too much in the way of updates but here is the latest:Charlotte got her new drug (Velcade) yesterday. It took a while to get everything set with the meds and the infusion but once they got everything they needed at the clinic, the whole process took about 5 minutes. The biggest side effect for her right now seems to be sleepiness. She fell asleep around 5 PM yesterday and woke up about 7 PM (just as I came home from work). Then she was up until almost 2 AM and at 11:40 AM on Thursday, she is still asleep! So needless to say, her schedule is a little "off". Otherwise, she seems to be ok. The word from the pharmaceutical company that administers this drug is that successive doses have to be given at least 72 hours apart so she will get the next dose on Monday and then probably Thursday of next week. Then another the following Monday. I am stil nursing my infection/cold. The antibiotics are hopefully doing their thing. The cough is S-L-O-W-L-Y fading and I still can't hear anything out of my left ear so my tube must be completely clogged. Joy. I am slowly getting some energy back so that is good. We have a busy fall session coming so I must convalesce quickly!!Some other news is that Three Oaks Montessori has given Charlotte "Honorary Student" status. They are going to include her in as many activities as she is able this year and are going to try to help us with meals as well as bringing her baskets of activities at home from time to time. We are very grateful to Kim, the director, for this offer and hope that we will be able to have Charlotte participate as much as possible. A few of Charlotte's friends from her old "Montessori House" are at Three Oaks so we hope this will be a good transition. Plus they are trying to get a Romp n' Roll 2 Go mobile program going at the school so it should be great all around!Thanks to Meredith for bringing us dinner yesterday. It was YUMMY!!! (and healthy).So she has PT this afternoon. Roger went in to work this morning and I have the PM shift. Busy weekend ahead. No news on the MRI but we will let you know when we know. Rachel

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!

An Update

Doing a whole lotta nuthin' sure makes me tired!

Charlotte didn't settle in to sleep until after midnight last night (sheesh). I did manage to get her to eat a few veggie straws before bed in hopes that it would sustain her a little longer during the day. I woke up and got myself ready, going downstairs while she was still sleeping to eat breakfast. I figured a hearty breakfast would help me hold out till proton therapy so I ate the leftovers from Roger's Mexican lunch the day before. They were good....and filling!

Then I roused the princess and we set off for the children's cancer center. We didn't have an appointment but Roger insisted that I should just "show up" and they'd work us in. About 10 AM they got our labs (we had come in about 8:30) and about 11:30 Reh, our nurse, let us know that her labs looked pretty good and instead of seeing a doc at the clinic we should just go ahead over to the proton center. Her weekly "checkup" with the radiation oncologist was scheduled for 11:30 and Reh figured as long as some medical professional was following up with her, they didn't need to see her till Wednesday.

So we trudged over to the proton center. The shuttle ride was not bad, actually. Got there, checked in, they took her vitals, and we waited.

And waited.

And waited.

Finally I asked someone what was up and they looked into it. Turns out that Dr. Mahajan is out this week and so Charlotte is supposed to see Dr. Woo and HE is seeing all his patients on Tuesday. Nobody had told us this, but it was on our newly revised schedule. BUT the newly revised scheduled had not been posted online. I was told the solution to this is to get a new printout of the schedule every Monday morning to assure accuracy. I'm not sure how I can get a printout before coming TO the proton center for my Monday appointment but somehow that has escaped everyone else's logic. Maybe the radiation gets to their brains a little in this place.

Anyway, so we were just MEGA early for her proton appointment that was scheduled at 1:30 (and of course, in true form, they didn't see her till 2:30). I did ask about moving up her time slot but they don't have anything available earlier for two weeks when she will then have a 10:30 AM slot.

Through all this, Charlotte never complained once. She never asked for food. Never said she was hungry. We did snuggle and cuddle a few times, which was nice given the cold shoulder she usually passes my way. We read some books and she entertained herself in the play areas. Finally it was her turn and Grandpa and I headed off in search of lunch for me (at 3 PM). She finally roused around 5-ish and we headed back to RMH for dinner. She did eat some cheese slices, applesauce, and a bunch of crackers tonight. And some chocolate milk. Her belly is getting VERY full and kind of rigid. She has not been able to bend down all day and she tells me that it hurts her tummy. the kid needs to POOP!! We keep giving her mag citrate and getting her to walk as much as possible. She told me that she "doesn't like to poop" so I hope she's not holding it in voluntarily. That could be a problem. I told her that she doesn't get to watch her "new favorite" goodnight video until she goes poopie so hopefully we will get results soon.

Other than that, she doesn't seem to be demonstrating any ill effects from the radiation (knock on wood). She is full of storytelling today and the bulk of our conversations revolve around her retelling some facts or plot points from Dora, Diego, Sid the Science Kid, SuperWhy, etc. It's very cute! Especially when she says things like, "Condors are the largest flying birds in the world."

Today I was the chauffer (stroller pusher), chaperone, and master chef. Plus I got in some light reading. Nabbed a book from the book exchange that has been very good so far. It's the newest Wally Lamb book and I've enjoyed his other two novels. We'll see. Oh, and I did payroll. The romp n' roll employees will be happy. Thank goodness for remote internet and quickbooks online. So I actually did some "work" today too.

Charlotte looked absolutely ADORABLE in the dress Aunt Phyllis sent. She wore it today and wowed everyone. She was a purple princess today. I will attach a photo. In this picture, she is making a grilled cheese sandwich using an iron. Very creative, I thought!

We did get to end our day with a skype chat with Daddy. That was fun and Charlotte was actually engaging for a few minutes. Seems like things are going well in VA as well. One day down....how many more to go? September seems a LONG way away.

All is Much Better

We all had a much better night last night and day today. We keep getting rides in ambulances and I think Charlotte is developing a thing for one of the "Ambu-Guys," Isreal. It must be the ponytail, goatee and earring. Hey, wait a minute!!! ::-)
The Bonitas are uber-helpful as usual. When we got settled in the hospital room, Juanita stayed with Charlotte and Dad and I went to get dinner downstairs. It was wonderful because I got to have Chick-fil-a for the first time in 2 weeks or so. It was also bad because I haven’t had hardly any fast food in that amount of time so the fried food sure did a number on me! Still working that out (so to speak).
Sitting down with Dad was so strange. Mostly because I wasn’t sitting next to Charlotte and I wasn’t freaking out about anything. And boy, did I feel tired!
So this am she ate a little and we had a relatively quiet morning. She still seemed a little sullen but her fluids sure are "fluiding."

The ambulance folk showed up at about 1:30 to take CJ to the proton center this time Isreal came with Laura (who reminded me a huge amount of one of our fellow Romp n’ Roll franchise owners). This time we got there very early and waited for about an hour until our appointment time. Grandpa held her on his lap for most of that time. She sure loves her Grandpa!
After she went in (with the accompanying rendition of Frosty. I hope she doesn’t get sick of it but her little hand out for “STOP!” just tickles the staff to no end) the Bonitas and I went back to The House so I could check mail (stuff keeps coming in, thanks), get a few things, and eat. Juanita made me some amazingly good stew and we were treated to another big o’ hairy thunderstorm that dumped a large amount of rain on our area.
Radiation treatment #3 went fine and CJ was in the recovery room when we got back. The Bonitas (isn’t that a kind of sport fish?) had to go check on the dog and awnings on the RV so they left planning to meet back up at the hospital.
Not much else happened until the ambu-guys showed up to take us back. It was Laura and Isreal again (that guy keeps showing up! Gotta go clean my shotgun! If I had one, that is). One thing I’m going to say about the drivers, they have to have super senses of direction because the maze that is MDAnderson Cancer Center is mind boggling. I do pretty well with directions and I’ve been so turned around multiple times, if I had been alone, I would have ended up like Jack Nicholson in The Shining.
Charlotte was actually feeling much better and was chatting up a storm. Laura had never seen the real Charlotte and was amazed.
So after we got resettled in the hospital room, Dr. Wolff came by to do what he does and work out what he thought might be a good plan of action. The short-term plan is to keep watching her at least one more day, do the new routine of hang out here, ride the ambulance ( Isreal is off tomorrow so I don’t have to worry about him!  ), and see how she improves. He was happy with the looseness of her legs but her neck is still stiff. She interacted with him pretty well and smiled for him. It definitely helps that he’s a friend of Dr. Kahn, “one of my favorite doctors!”
As far as the chemo goes, he is deferring to Dr. Mahajan (radiation oncologist) who feels uncomfortable having her on the multiple drugs for which her protocol calls so I think they will only be doing one. Dr. Wolff mentioned Acutane but that’s the one that really dries out the skin so that may not end up being the one.
After Dr. Wolff left, the Bonitas came back and Dad and I turned right around and went to the Target for sinus headache stuff for me (nothing happening now but just in case) and a Clifford video. We didn’t find one but I found a cheap Thomas video and one with several Nick Jr. characters doing bedtime stories including, but not limited to, Wonder Pets, Blue, and Dora. Perfect.
We got back to Juanita teaching CJ about swimming in chocolate pools (not a bad thing at all) and to say “AWESOME!” (could be a bad thing). She was feeling restless so we went for a walk!!! She was raring to go and didn’t have to asked twice. It’s the first walking she’d done since Wednesday and that wasn’t much. I guess it was the first real walking since Tuesday night.
The rest is actually nice and boring. The Bonitas left, Charlotte and I snuggled on the bed for a bit, I got into my jammies, and here I am typing the update. I can deal with boring for a few days.
There! Got it done in under 3 pages!

Charlotte Admitted to the Hospital

I know everyone is probably chomping at the bit for some kind of update. I can't do it justice so Roger will need to give the full rundown but suffice it to say it's been a rough 24-48 hours or so for Roger and Charlotte.

Here's the brief update:
First day of radiation ran late and really long.
She got nauseous and started vomiting about 1 AM.
Had second day of radiation BUT also saw oncology doc and there were concerns that she might have some kind of bug. She got admitted to the hospital so they could give her fluids and monitor her progress. Hopefully won't be admitted for long.

That's about as much as I know.

Also (fortunately) Bob and Juanita are now in Houston so Roger has some backup support.

I will let him supply further details. Last time I talked to him, he was really tired. I'm hoping he got some rest.

As for me, I'm hanging in there. Working a lot and can't believe it's almost my turn to go to TX. Had a really good meeting with Dr. Matt yesterday (always helps) and work has been going well. I've had some great angels bringing me meals, flowers, and other bits of sunshine to brighten my days.

Gotta go get ready for another busy day.

Rachel

Update:

Guess what? This one’s tipping 5 pages in Word! Rachel's post was pretty much IT in a nutshell so if you only want shells, that's all you need. Go get some coffee. If you want nuts keep reading. And go get a whole pot!
MAN! I hate it when I'm right (and I'm right so rarely I should appreciate it).

The last couple of days have been brutal. I haven't felt awake enough, or had enough free time while awake to post on CB but hopefully my little blurbs on Facebook helped some of you get at least a partial fix. Not sure I can make it long tonight. (Actually I didn’t. I had to put down the laptop and sleep. It’s now 4:45am)

So we're in the hospital. I mean the actual hospital, admitted for observation because Charlotte isn't eating and threw up four times today. including once right in front of Dr. Wolff.

But I'm getting ahead of myself.

Yesterday (Tuesday) started her proton therapy treatments and Charlotte had trouble from the start. We had to wake up at the buttcrack of dawn to try and get her to eat something before she went NPO at 5:30am. No-go. She wasn’t interested and I don’t blame her. My problem at the time (and there were many on Monday) was that she wasn’t going to get to eat all day and there is always food floating around The House. I wanted to minimize CJ’s suffering by at least getting her to eat something. As I Said, no-go.
So I let her sleep and she didn’t eat all day. It really wasn’t an issue because she hasn’t been eating much and she didn’t ask for anything. Her appointment at the proton therapy clinic was (supposedly) at 2:30pm. On MYMDAnderson.com, it actually said 2pm and, as I have since found out, the clinic had 3:30. But I didn’t know that so let’s not taint the post too early.
She slept in again and I didn’t disturb her to make the time between awake and food as small as possible. When we finally got up, we did the usual, watch a video, go downstairs, play with shoestrings, etc.
I mentioned her “stiffening up” before and it has been slowly but steadily getting worse. I was going to mention it to the Drs. at Wednesday’s appointment. She’s getting to the point that she doesn’t like to sit up. She’s also very lethargic which isn’t a good sign.
There are shuttles that go around the medical center from The House and the only one that would get us to the proton center on time for the 2:30 appt. leaves at 12:45 so we had to take that one and get there early. Not a problem, I always have stuff for her to do. She hasn’t really been the mood to do anything except be held or play with shoestrings anyway.
So we got there very early and checked in. Who knows? Maybe they could get her in early. (Writing that now I think to myself, “you silly, naïve little man.”) At least they got her in to get the vitals. Then we went out the lobby and waited. And waited. And waited…(Remember the John Houston version of the story of Noah?)
Finally, at about 3:30, I asked someone to go check and they came back and told me they were backed up (REALLY?!?) and Charlotte is up next. Well in proton radiation-speak, that could mean a long time. Most of these treatments are at least an hour long, the place has a steady flow of patients, and there are three “gantries.” The hours stack up. Which is why we were sitting there at 4pm waiting for what was originally supposed to be a 2:30pm appointment. Charlotte never complained or told me she was hungry the whole time. She was not feeling well I could tell and I just bundled her up and held her on my lap while she slept and I stewed. It was a very hard time sitting there letting my thoughts spiral around like they will do when I get riled. It also let in the “what if” demons and a couple times I just about lost it right there in the lobby. What really bugged me was that no one seemed concerned enough about us to at least keep us informed.
And then, with a lobby scattered with patients, many of whom are almost assuredly NPO (couldn’t eat), one of the doctors actually comes out and starts offering people chocolate! WHAT?!? I’m sure it was a gesture made with the best of intentions but incredibly unenlightened.
FINALLY after 4:30 (Charlotte was going on 20 hours since she ate last), they took her in and hardly anyone apologized for the delay and the sorries I got were superficial and insincere. I was livid by the time I carried her in to the Gantry that I had a hard time even talking to anyone. I wanted to break stuff, call people names, and write nasty emails. They know from before that CJ love Frosty so they had the lyrics already printed out and waiting and even that didn’t help. Charlotte wasn’t feeling great anyway so we didn’t sing. I really wanted to appreciate the scope of what was about to happen to her but I just took a couple pictures and left. Man! I was mad.
Now that she was in, I could eat something and when I went to get a snack, insult was added to injury. In retrospect, I realize this is a very silly thing to get upset over and a waste of energy but here’s where my head was at the time: In a rare attempt to eat healthy, I was going to get something other than the honey bun I got last time and realized the only thing remotely healthy was a little bag of peanuts and I just didn’t want that. I noticed anything of any “heft” was $1.25 so I stuck my $1 in and pulled out another dollar to chase but the machine wouldn’t take more than one dollar at a time. I didn’t have a quarter. Apparently neither did anyone else around me. It didn’t take $5s. There was no change machine. Internally, I blew up. My thoughts went from dark to biggest, meanest, hurricane storm cloud black. Had anyone spoken to me, or worse, asked me how I was, I think I would have just screamed in their face uncontrollably. I mean, these guys are supposed to be the absolute best IN THE WORLD at what they do and they have taken pains to make the environment as calm and “healing” as possible but they couldn’t think of a little detail like a freaking change machine or machines that take more than a dollar?!?
THEN! Noone called me back to the recovery room once she was done so it was almost two hours later (reminded of the time by my lovely wife) before I popped my head in to ask what was up. She had already woken up in the back and was getting her wits back. Talk about “when it rains it pours!” Things kept piling up so much I was beginning to think I had been set up.
Breathe. In-out-in-out
OK. Now you know how my annual freakout works. As I’ve said in a previous post, it’s turned into a monthly occurrence. I’m actually keeping a close eye on myself to make sure I’m not seriously losing it. That in itself is probably a warning sign, eh. Need to ask Matt about that. I’m doing “guitar therapy” on myself, staying very focused on CJ (once she was out of my control was when I melted down so I will need there distraction of working at Romp n’ Roll all the time) and trying to stay connected to everyone. Not doing regular CB updates takes its toll too. I’m telling you, it’s therapy.
Moving on, I did write that nasty email to MDAnderson and actually got results. They actually have a patient advocate and she filed a complaint in our name which is fine especially if they refine their policies.
OK, I said moving on. Charlotte went through her first therapy with no hitches and when I got back to her, she ate a fruit cup. The process had taken so long, we missed the last shuttle back to The House so they called us a cab. It’s not far and only cost $5 or so. I’m not sure but the woman (and her little boy) who rode back with us paid the fare and wouldn’t take any money from me. “Next time,” she said.
When we got back, they were playing BINGO and giving out some really amazing donated prizes. Charlotte wasn’t interested of course and just wanted to go into the playroom. That didn’t last long and it was off to bed. Good because we had an early appointment in the morning at the main hospital. I was feeling pretty wrung out so I just closed everything up and was asleep by 10.
Now there are few sounds in the world that strike fear into the heart of a parent than the tell-tale gurgling of a child about to throw up; especially in the middle of the night. I heard those sounds at around 1am. It yanked me from my sleep but I wasn’t fast enough with the bucket it went on the bed. I held her up, let her finish, and then got her cleaned up and gave her a zofran. I also stripped the bed and started a late night load of laundry (Man, is THAT a nice perc of The House.)
She threw up again about 4:45 and once more at around 6 but there was no fever and I figured it was just a little side effect of the proton therapy. I think in the end might have been part right. After the last episode, we just got up and got ready.
We walked to the main hospital because for some reason, CJ refused to get out of her stroller to get into the bus. No biggie, I need the exercise. When we got there, what I thought was a regular Dr.s visit ended up being an opthomology assessment. It was a bust because by now, CJ has become the most anti-social, uncooperative patient ever. It didn’t help that the eye doc kept shaking toys in her face and asking her 5 questions in a row without waiting for an answer and she asked “bad” questions at that. Rachel would have had a field day with her. Finally, I had had enough of it and ended the pointless berating telling her we would have to reschedule. My observation: a drawer full of toys doesn’t make you good with kids.
Can you tell I’m becoming disillusioned with MD Anderson at this point?
Next I went next door full of my daddy self determined to get some answers and see some people who, for some reason, weren’t communicating with us after we made it abundantly clear multiple times that we needed that. I checked in, told the receptionist that I really needed to find out what was going on with the chemo schedule and what we needed to do next. She got us squeezed in to see one of the nurses who took blood from CJ and then they put us in a room to wait for Dr. Wolff whom I had already seen running around looking very busy. I wasn’t feeling optimistic.
Then Dr. Wolff went and spoiled my mood. He single handedly renewed my faith in our purpose by coming in relatively soon, bringing his crew including Nurse Reh, who is his version of Dr. Tye’s Joanne, and did what I like second best about him (the best being that he’s a darn good oncologist), he sifted through the crap around the story, compiled information in his brain out loud right in front of us, and in a very short time, convinced me that CJ was actually dehydrated, had a bug that was probably easily treated, decided to admit her for observation and noticed the stiffness without my help. He actually said it was a classic sign of meningitis or a related condition although he said if it were really full blown meningitis, she would be a lot sicker.
He also asked me questions about what I think! Imagine that! I told him the impression I had gotten from my discussion from Dr. Vats about the tumor growing and the cancer cells in the spine. I think what I said jibed with his discussions with Dr. Vats so he finally told me what he thinks. He doesn’t think the tumor has grown but he needs the previous scan to tell for sure. Dr. Kahn was supposed to have sent it but no one can find it. Rachel is going to try to get a copy on disc to bring with her on Saturday.
(And now for something completely different: my belly makes a great laptop table!)
OK, I’m back. Dr. Wolff also suspects the cells in the spine have been there longer than everyone thinks. Another clue that it probably isn’t growing. He also said something interesting. He had mentioned how busy they were and the lack of rooms and I said I was sorry for throwing a monkey wrench into his day.
“Nonsence!” he said. "She’s a sick child, I love to treat sick children. The sicker they are the better.” I don’t think it came out quite right but I know what he meant. He’s up for it.
He didn’t want to interrupt the proton treatments because if it was actually something caused by the tumor, he didn’t want to get in the way of that. So Nurse Reh arranged an ambulance ride for us! Charlotte got to ride on a gurney through the halls and then in an ambulance to the proton center. First time I’ve ever been in an ambulance too. No lights or siren though. Oh well, I’m actually thankful we didn’t need them.
Before we left however, they hooked up a bag o’ fluids to her and she got rehydrated. Talk about a difference! She perked up and became quite chatty. By the way, she can see fine. She can see tiny pictures up close and identified pictures out in the hall from inside the room.
Day two at the proton center was like Charlotte after she poops (I just couldn’t have a post with no poop references!), completely different. We actually got there a bit after we were supposed to be there but right on time for the appointment and they rolled her right in. I carried her in to the Gantry and this time she was into the singing of Frosty (me too). She even did the “STOP!” with her hand when we got to that part. Then the happy juice kicked in and the last I heard was, ”That’s my favorite {zonk!}
In anticipation of the upcoming slumber party, I took the MDAnderson shuttle back to the main hospital intending to walk over to The House to get provisions from the room. I called my dad to see where they were in terms of getting into town and they said they were just getting ready to park at the main hospital! That was handy. So we met up, drove over to The House and I got stuff. We drove back to the proton center just in time to go see Charlotte in the recovery room. When she woke up and saw Grandpa KATIE BAR THE DOOR! I hadn’t seen that much energy out of that girl in a week. She sure loves her men. Grandma Juanita Bonita was all over her too “gettin’ lots o’ sugar.”
We got another ambulance ride back to the hospital and got settled in to our private room with shower. By the time we got here, she had closed back down and I don’t think she’s very happy to be here. Nice facilities, though. That’s another post.
Last night she had some juice and this morning she ate 4 crackers, a large pretzel, and most of a bag of 100 calorie pack Girl Scout cookies so at least something is going in.
So here we are at 8:15am, she went back to sleep pretty easily after some Blue’s Clues. Can’t wait to show her the playroom here. Pretty boss dude! Think she may need a diaper change.

Update:

A relatively short update:

The end

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.