Moving Forward

              

Our New Logo

Can’t do much else can we?  As Bruce Barton said, “When you are through changing, you are through.”  We’re hardwired to keep moving forward; to continually try to make our situation better even though sometimes all we do is repeat the mistakes of the past.  But move forward we must and that is what we’re doing here at CJ’s Thumbs Up Foundation (hopefully not with the whole repeating-past-mistakes thing).

Thanks to our generous Network (that’s YOU, generous reader) we’ve had a very good first half of the year.  Revenue is exceeding expectations due to increased donations, more successful fundraising events, and the release of Rachel’s book, Four Seasons ForCharlotte: A Parent’s Year With Pediatric Cancer.  It seems that so far, we have been doing things the correct way and our mission is being well-supported.

The Cover of Rachel's Book

                With all that in mind, it’s time to take some more baby steps forward.  This year, we will award a total of at least 25 financial assistance grants.  This almost doubles our impact from 2011 (so maybe “baby steps” is too conservative a term).  We also have plans to expand our Board of Directors and have welcomed some extremely capable members to the current board.  Our fundraising initiatives like the Butterfly Socials, the Thumbs Up Ball, and the Fall Art Auction continue to evolve into our primary annual events and we continue to seek ways to improve upon the last event’s success.

We are also modifying our online presence a bit.  In the near future, you will see more regular (weekly) blog posts covering various aspects of CJSTUF.org.  We are currently gathering stories and profiles of our Board of Directors, staff, local medical professionals, events, partnering non-profits, and most importantly, the reason we exist - our families.  We will spotlight these courageous families in an attempt to inspire the reader to do more, to dig deeper, or simply to help the healing process by making the families aware that they are not alone in their struggle.

You will soon be seeing small updates (in both look and function) to the website and social media outlets to include software upgrades, calendars, new widgets, and more efficient ways to keep up, and become involved, with CJSTUF.org.

One thing we are NOT changing is the mission.  We will also never forget the curly-haired, sweet-voiced little girl whose strength and courage is the inspiration for what we do every day. (We still miss you, Charlotte!)

It’s an exciting and bittersweet time for us here at CJ’s Thumbs Up Foundation as we continue to move forward, or as Jonathan Agin signs off of daughter Alexis’, Caringbridge posts, “…we are one day further, yet one day closer…”

We are so thankful to all who are helping us make unbearable situations a little more bearable.

Check out our new look!

We are excited to announce some big changes for CJ's Thumbs Up Foundation. In April of this year, CJSTUF was selected as one of 12 Richmond area nonprofits to participate in the CreateAThon on Campus project. Each team of marketing and advertising students worked with representatives from the respective organizations to help develop marketing materials.  

At our quarterly board meeting on July 19th, the Board adopted the new logo and color scheme created by our CreateAThon team. We love it. We hope you do too.

The original CJ butterfly will still be around in various forms but look for changes in the coming months to our website as well as other marketing materials. You can see some of the immediate changes on our Facebook page! (Are you a fan already?)  

This also means that all of our current t-shirts containing our old logo have now become limited edition collector's items! Get 'em while they last.

Stay tuned for more announcements with our August newsletter (coming soon!)

Here In Monterey! (Seaside, Actually)

Rachel and I arrived in San Francisco, CA very late last night (in the wee hours of the morning, truth be told) and were promptly picked up and carted away by Shelley Wilkinson, our most gracious host, chauffeur, cook, and tour guide (not to mention West Coast Chairperson for TEAM CJ). We wasted no time completely collapsing into bed when we got to her and husband David’s house in Seaside but my body wouldn’t let me sleep past 6:00am Pacific Time (which is 9:00am Eastern) so it was another short night.

I’ll be napping as soon as I get done with this post!



Rachel, Shelley, and I went down to Monterey to check out Cannery Row, scope out wineries in the area, and find lunch. If you find yourself out here, I strongly recommend you stop off at the Pacific Grove Chamber Of Commerce Visitor Center across the street from the Science Museum and have them tell you stuff. They love to do that kind of thing and will give you awesome coupons to use at area establishments; like free appetizers at local restaurants, discounts for whale watching (might use that Monday), and maps. (I LOVE MAPS!!!) They also have a statue of John Steinbeck and Rachel couldn't help flirting with one of her favorite authors!

We used said coupons at a place on the bay called Fish Hopper Seafood & Steaks and had a VERY yummy lunch that included clam chowder in a sourdough bread bowl (almost can’t come out here and NOT get that at least once), calamari, and artichoke heart. Rachel had fish, the name of which I can’t remotely remember (I had never heard of it before but it was good!).

We ate outside on a deck overlooking the bay and watched the waves come in and out and various birds do the same.

Then we headed around the bay to get a look at the “beaches” and snap some pics of the water smashing against the rocks but we didn’t stay out long as it is unseasonably cool with a brisk wind that made it a bit uncomfortable to be out for too long. What was amazing was what looked like this pink creeping flox (although I think Shelley said it wasn’t flox) covering a good portion of the hills up from the water. The blanket of pink wrapped all around the southern point of the bay and was striking to say the least.

Rachel was strongly reminded of the day we were in Daytona Beach after Charlotte’s Make-A-Wish trip to Disney World and CJ was sitting in a chair on the balcony all day, just enjoying the peace of the water. We asked her if she wanted to come in several times but she was comfy and we let her sit.

I agreed with Rachel and that photo is my Facebook profile pic again for a while.

Next was the short trek to the Fitness Expo to pick up race packet, shirt, and bus pass for the marathon on Sunday. It’s a smaller race overall (if you can call 13,000 participants small!) which translated to a much faster check-in experience. Strange but I was actually wanting more of “The Gauntlet.”

On an aside, here's a video of some of what we're in for.

Tomorrow we will join up with James Staudte and family for a day of Aquarium exploring and carbo-loading later at Shelley’s house. Some of the staff of the Children’s Hospice and Palliative Care Coalition will be coming over to the pasta-party and we’ll be presenting them with a check for 25% of the funds we’ve raised so far. Donations are still coming in and we’re so grateful to everyone who has helped.

Speaking of that, time for another bit of a family story:

“Yulisabel (Yuli) is a 3 year old with Acute Lymphoblastic Leukemia (ALL). She routinely needs rides to treatment (a considerable distance) as her father works and is the main driver and supporter for the family. She has a 4 year old brother and they live with 3 other families in a house on the outskirts of town. They share one bedroom.

Yuli loves to listen to the radio. Her mother also has music on her phone and she puts it up to her ear and this young girl is mesmerized. Her mother has recordings of her son singing and Yuli making noises around the house which keeps Yuli happy during the long rides to treatment.”

Yuli’s is one of four local Monterey Bay area families who will benefit from TEAM CJ’s FUN-raising efforts this week. We always like to say that we aren’t finding a cure but we are helping to make an un-bearable situation more bearable. Please don’t forget that YOU are a big part of that “WE.” CJSTUF couldn’t do it without your help.

Wanna help some more? Demand for what we do has increased dramatically this year as word of our mission and success has gotten out. We are already on track to receive double the number of applications we received last year and we would like to fund them if possible. If you’ve donated to any of our events, that’s wonderful and we’re not asking you for more. We ARE asking that you tell your friends and families about us and see if they’ll send us just 4 bucks ($1 for every year of Charlotte’s life) or a multiple thereof: $8, $12, $16, etc… You’d be amazed how it adds up. Here's the link

As usual, Rachel and I can’t thank you enough for helping to keep Charlotte’s legacy alive so we can “take care of the living.”

Love on your little ones like there’s no tomorrow.

I’ll blog atchya later.

Love,
Rog

p.s. Finally: Good luck to all doing the ASK 5K tomorrow morning. Our thoughts are with the Parents of Lois and Abbie as they begin their own marathon

Charlotte's Birthday

On July 9, 2005 at 1:05 PM, Charlotte Jennie Reynolds was born.


She was an amazing child.

Today she would be 5 years old.

We miss her every day. We know that her friends and family miss her too.


We are comforted by the legacy that CJ's Thumbs Up Foundation is creating in her honor.

On the anniversary of her birth, I want to take this opportunity to thank everyone for your unending support during the past 18 months. We continue to need your emotional support in our time of grief and we appreciate the many ways in which our community (our Network, as we fondly like to call it) holds us up.


Some of you have mentioned giving donations to CJSTUF in honor of Charlotte's birthday. That is a wonderful idea. I do understand that our Pay Pal donate button on the website is currently disabled. We are working to fix that and I will let you know when it is active again. In the meantime, donations can also be sent to: PO Box 854, Ashland, VA 23005


You can also support us by spreading the word about our foundation. Invite your friends to find out about us on Facebook. Share our video (also posted on our website) so that others can find out about our mission. Finally, we have launched an offical volunteer database on our website. If you want to help our organization, please take the time to fill out this small form so that we can add your name to our database. When a need arises, we will use this list to rally the troops.

Roger and I plan to spend the afternoon with some close friends and family, eating some of her favorite foods and watching a few of her favorite movies. While it won't be a "party" per se, it's a opportunity to celebrate her short life and take comfort in the things that brought her joy.

In closing, I want to share the Shel Silverstein poem I read at CJ's Memorial Service. This is for my beautiful daughter, born in the height of summer, who loved Frosty The Snowman.

Perhaps we can think "cool" thoughts in the middle of our summer heat:

Twas the first day of springtime
And the snowman stood alone
As the winter snows were melting
And the pine trees seemed to groan
“Ah you poor sad smiling snowman,
You’ll be melting by and by.”
Said the snowman, “What a pity,
For I’d like to see July.
Yes I’d like to see July, and please don’t ask me why.
But I’d like to, yes, I’d like to, oh I’d like to see July.”
Chirped a robin, just arriving
“Seasons come and seasons go,
And the greatest ice must crumble
When it’s a flower’s time to grow.
And as one thing is beginning
So another thing must die,
And there’s never been a snowman
Who has ever seen July.
No they never see July, no matter how they try.
No they never ever, never ever, never see July.”
But the snowman sniffled his carrot nose
And said, “At least I’ll try.”
And he bravely smiled his frosty smile
And blinked his coal black eye.
And there he stood and faced the sun
A blazin’ from the sky--
And I really cannot tell you
If he ever saw July.
Did he ever see July? You can guess as well as I
If he ever, if he never, if he ever saw July

The most stress-full-est week ever

Wow! I can't believe it's been so long since our last blog post. At the same time, we've been a little busy. I will try to update everyone.

First of all, a big thanks to the Mechanicsville Moms for the Used Book Sale last week. We raised almost $300 for CJSTUF which is not bad for a bunch of books priced at $.50 and $1 apiece. The remaining books were donated to the Ashland Library for their annual book sale at the Hanover Arts and Activities Center (July 4th....mark your calendars!).

Secondly, the Cow Drop raised a little over $1000 for CJSTUF. That will help two families! How great! I didn't win the Disney vacation or the Romp n' Roll birthday party (oh, wait...) but Roger had a great time at the event. Huge kudos to Pam and Sharon, the Virginia Center Chick-Fil-A marketing gurus who help to make this event a success year after year. Much thanks to them for including CJSTUF in their in-store sales.

In the middle of all these foundation events, we have been armpit deep in moving the business. Anyone who has ever built a house knows the stress that comes with construction. Take that and magnify it a few 1000 times when you move a business. Not only are you trying to get everything up and running in a timely manner, but you still have a business to run, vendors to pay, and a staff to manage. We're getting there but this is not my favorite thing in the world. I have HUGE thanks to offer to:

My parents: Not only did they help with painting and moving but they always had dinner (or lunch) ready for me and for Roger when we came home each night. Plus they're always good for a laugh or two!

Our Romp n' Roll staff: They roll with the punches and have displayed their many talents in this process including painting, shop-vacing, and packing.

Our many helpers and volunteers: Along with our paid staff, we have recruited a few volunteers to help with loaning us LARGE vehicles and painting and hauling and unbolting shelves and hanging bulletin boards and....

My husband: Roger is a pretty handy guy and he is doing a lot of the "grunt work" these days. I, in fact, have felt pretty useless lately and he is just a bundle of positive energy. I really appreciate all his hard work.

So, yes, this past weekend was Mother's Day. I pretty much tried to ignore it. At the same time, I felt extremely loved and supported by many friends and family. I think between keeping myself busy and the many positive notes, small gifts, and other gestures of kindness that were nudged my way, I made it through. The extra stress in my life certainly doesn't seem to help with my wanting to cry (or scream) at the drop of a hat. Today we had to take the cat to the vet (more on that in a moment) and as I was waiting to pick up Mr. Tigger, this other woman comes out to the lobby to pay her bill and makes an off-hand comment about "having to sacrifice her first born child" to pay the vet bills. I almost let loose with a snarky comment like, "You think vet bills are bad...try REALLY sacrificing your first born child to brain cancer." but I held my tongue. I know the woman meant nothing by the comment. In another age, I probably have made comments in the same vein and never thought about the actual words.

So why, you might ask, did I have to get Tigger from the vet? Well, Roger came home earlier today to get a needed tool and grab some lunch and found Tigger very injured. Apparently, he had tried to climb a fence (or something like that) and seriously hurt his foot. The tendon was actually exposed! Roger dropped everything and rushed him over to the vet (did I mention how wonderful he is?) and they took him in for surgery. Now he's wearing a funny cat collar and has to stay isolated in a room for 10-14 days. Oh, and we get to give him kitty meds. Goodie. The ladies at the vet's office said he was a really good boy and when I picked him up, he was meowing at about 100 decibels. He's resting in the spare bedroom right now, looking awfully pitiful.

In Foundation news, we have received our applications for Financial Assistance Grants. We do have at least 10. We will review them at the board meeting next week and we will be very excited to award the $500 grants to our recipients in early June. More on that to come. Roger is talking with a local business and we may have some great PR events lined up soon.

Also, we are slightly further along in the process of getting our nonprofit status. Still nothing official but we're one step closer. AND I think that within the next month (or two) we should have some SWEET CJSTUF t-shirts and other merchandise available for purchase. Stay tuned.

So, in closing, please keep the positive vibes flowing for our move. We are aiming to be open by Monday with a ribbon cutting at NOON on 5/17. Come on out if you're around. You can always become a fan of our new location on Facebook for the latest updates and moving pics. If you haven't heard, we are dedicating our moving week (this week) to ReeseStrong. 10% of any birthday bookings or summer class/camp bookings through Saturday will go back to this Mechanicsville based organization that is very dear to our hearts. SOOOO...if you live in Mechanicsville or know anyone that does, check out our Romp n' Roll website and call us to register today (shameless plug, I know, but it's for a good cause!).

Clarifications, Expositions, and Compositions

First off, I guess I need to clarify a few things. More than one person was a little confused about my Facebook post concerning January 22, 2009. That was the date of Charlotte's first surgery to debulk the tumor in her brain. 6:30am was about when they started getting her ready.

Aunt B mentioned CJ doing her princess wave as we walked by the 7th floor lounge at MCV. I had almost forgotten that. I was so freaked out inside that my head was feeling fuzzy (the way it does when I REALLY get upset). I remember feeling that I needed to keep it together as we walked down the hall to the elevators. I'd seen this scene before in countless movies and TV documentaries wondering which way the dramatic shoe was going to fall at the end. (Does my life completely revolve around mass media!?) The real terror is light years worse in person, believe me.

Down in the pre-op area was where Mommy sang Frosty to her just before they wheeled her into surgery.

I remember shaking inside. Not shivering like being cold but more like a constant vibrating; like there was a humming going on inside me. Weird, I know.

I also remember feeling so completely helpless.

So that's what Jan 22, 2009 was all about.

On to other things...It's great to commemorate, bad to dwell.

Here's my Facebook post from 4:00-something this morning:


"Yesterday was halfway decent, considering... Spiritually, musically, financially, geographically, gastronomically... I'll do a full blog post later today but I just got back form Shepherdstown, WV and I need sleep." Can't believe I could even type at that point.

To expand...
Spiritually - I was ready to be very mopey, grumpy, and unhappy all day yesterday. Just didn't happen. I thought about Charlotte all day and had a "moment" on the road just south of Shepherdstown, WV but for the most part, I was moderately cool.

Musically - Uptown had a workshop/gig at Shepherd University yesterday which went VERY well. The workshop was supposed to be aimed at the vocal students. They don't have a jazz vocal group yet but seem very ready to jump in and try. Ginny and I were going to split the time with me giving some fundamental, before-you-form-the group homework and Ginny guiding the group singing portion. We were also asked to touch on the career aspect of music, being honest but not terrifying the students! :-)

Well, of course, I kind of got on a roll talking shop and hogged most of the time. We did the other stuff but it was more like 80% Rog and 20% everything else but the students were responding and we were learning stuff. Some were even TAKING NOTES!!! Uh-oh...

Funny side note: I also spread the Pomplamoose word. I was doing the shortest possible bit on improv and mentioned that the easiest way to start getting licks under the belt was to sing tunes they already know with just syllables. I started with quick examples like the ABC song, Happy Birthday, etc... Then I started "scatting" "All The Single Ladies" which really seemed to amuse them. Then I digressed, as I usually do, and told them about Pomplamoose's version. (Jack and Nataly, I'll expect a check (or maybe just a bar of soap) within the week.)

The evening concert went very well and we got a standing "O!" There was also good, moderately healthy food in the dressing room including a bag of Gala apples! Yum! (That's the "gastronomic" part)

Because of circumstances I'll go into later, I drove myself up to the gig. I ended up taking Highway 340 into Shephardtown which unexpectedly found me in Harpers Ferry. I was inspired and pulled up "Tom Burleigh's Dead" by Eddie From Ohio. I think I listened to it 4 times in a row. Perfect! Here: You should too! :-) OK So it's only a snippet - Go buy it for Pete's sake!

By the way...what a GORGEOUS area of our country!

To close out the musical portion of this epic, here is a message I got from Julia Dollison. Though you'd might like to see it.

"Thinking of you lots today...

Kerry and I just finished tracking a cappella vocals for his transcription of Keith Jarrett's live (improvised) solo piano recording of "Radiance 8" (commissioned by Long Beach Poly). I added lyrics to it this past fall, but now that we're finally laying it down, it occurs to me that they're really about CJ.

As much as I wanted to post this on your wall, I didn't want to take up that much space, but you're welcome to share it if you wish. We'll send you our recording as soon as we mix it down... :)

xo,
JD

(Roger's note: Kerry and Julia are mutants! In a good, musical way, of course)

**

Sometimes in her sleep, she smiles.
Is she dreaming? is she far away?

Sometimes in her sleep, she laughs.
Is she happy? does she wish she could stay?

Sometimes in her sleep, she cries,
and you hold her and pray.

Morning comes, and she'll forget -
Things we dream about never make much sense.
Then the sun shines in, so bright,
just like her radiance.

All these moments fly by so quickly,
but she never seems to mind -
as long as you're by her side.

Sometimes in her sleep,
She awakens to find you were there all the while.
With a smile, she returns to her dreams."

Beautiful. I'll leave you with that for now. More later.

My turn. Lots on my mind. (Rachel)

My turn. Lots on my mind. This could be a mini-novel. We'll see.First of all, a very sad note. Our good friend (and chiropractor), Anna, lost her mom to cancer yesterday. We are thinking heavy thoughts about her today and wishing the Madland family peace and comfort. You can pass a note to the family at www.caringbridge.org/visit/joanmadland Charlotte had another good day yesterday. She worked very hard at physical therapy where they introduced the Wii Fit! She tried some of the balance games where she had to rock from side to side in order to get marbles in a hole, hit soccer balls with her head, and catch fish (as a penguin) on an iceberg. She also did the ski jump which worked on her bending her knees, holding the position, and popping up (this was very challenging) and also worked on walking. I wonder if there is a Wii in our future? I'm not usually much for video games but I had to admit it was cool and really seemed to motivate her!Yesterday evening I ended up spontaneously meeting a friend for dinner. She had posted on Facebook that she was looking for someone to have dinner with her down at the Iron Horse. I realized I was available and I thought, what the heck? We had a great time talking about everything from parenting to jobs to relationships. I've been having a rather rough time lately and it's been kind of hard to nail down the root of my problem.I guess if I had to boil it down to one word it would be "motivation" but that doesn't really seem to capture it completely. I think I have finally reached the limits of myself. For those of you who know me well (and some of you have known me a L-O-N-G time...), you know that I have always been Type A, motivated, efficient, and hyper-organized (maybe even to a fault). I have always been the kind of person who could be super-productive, met deadlines, got stuff done, and was two or three steps ahead of the game. My house may not have been immaculate but it was usually organized. I could work full time with even a few part-time gigs on the side and still have time to invest my energy in church or other service organizations (usually in some kind of leadership capacity). Yes, that was my life before and while it did take effort of a certain sort, I enjoyed it and I THRIVED on that busy kind of energy. It felt natural to me and that's just how I lived my life. It wasn't effortless but it was relatively easy for me. Lately, not only do I not seem to have the "time" to do these things, but the motivation and the energy just isn't there. Piles of mail sit unopened. Emails go unanswered. Tasks on my to-do list wait until tomorrow (and the next day, and the next...). I get distracted VERY easily (damn you, Facebook!). Some days all I want to do is vegetate on the couch. Part of me tells myself (and others tell me) that this is "normal" given our life situation and everything that we have been dealing with for the past 8 months. Part of me tells myself that I'm being too hard on myself. I should give myself a break. These things (in the grand scheme of it all) are relatively unimportant. And yet, I can't make myself truly believe it. It makes me angry (at myself) and I get frustrated. I want my old life and my old "self" back. I'm tired of living in crisis mode. I get frustrated at the fact that I've gained 20 pounds in the last 8 months (yes, ladies and gentlemen...20 pounds!!!! UGH!!). My body is in constant anxiety mode and not only craves comfort food but doesn't want to lose the pounds, even when I DO eat healthfully. I get frustrated that I'm tired all the time and when I try to sleep my mind runs in circles. I get frustrated at having no real schedule. I can't seem to figure out what we will be doing two weeks from now, let alone 6 months or a year from now. Roger and I were trying to look at the calendar and find ONE day in October to "get away" and we couldn't do it. Not even ONE day when we don't have something going on for work or for Charlotte. CRAZY. Work does help and I love my job (I say quite often that I have the BEST job in the world...i'ts true) My life shuttles from work to Charlotte's therapy or doctor's appointments and then home. And when I get home all I want do is sit on the couch. I have all these things that I want to accomplish but they just don't happen. I couldn't even begin to think about where we would be if we didn't have the fabulous network of family and friends who have been taking care of us. We continue to get great meals delivered to our home on a regular basis (Thanks!). We continue to have family visiting us regularly to help with...anything we might need (Extra Thanks!). We continue to get sweet notes or gestures of motivation and comfort in the form of letters, cards, and small gifts (Oh, thank you!!!) and I can't even begin to imagine where we would be without all these things. I would say "I want my old life back" but I know that is never going to happen. From this point forward, life will always be about having a child with cancer. Even once she is a SURVIVOR, our lives are forever changed by this experience and we may never look at our lives or our priorities the same way again (I know I am already changed in that respect). So that's where I am right now. I guess my purpose in this post is to say if I seem distracted or forgetful or if you sent me an email weeks ago and I never responded or if you never got a thank you note for some awesome, wonderful thing you did for our family please understand that it is not meant as a personal slight. On that note, I must get on with my day and get ready to go to work. Busy day ahead...and a busy weekend as well.--Rachel

Rachel is in Houston Too!

My turn!

The trip out to Houston was mostly uneventful. The flight coming into Richmond was late so I made my connection in Atlanta (to Houston) with only minutes to spare. Fortunately, I only had to walk about 8 gates to make the connection. I also upgraded to business class last minute (yee haw) so it was easy on/off the plane.

On the second leg of the flight, I sat next to a mom with a 3 1/2 week old (!!!) and across the aisle from a couple with a 10-month old. If I didn't miss my daughter before, MAN!!! I was getting some serious Charlotte withdrawal so I thought the plane couldn't land fast enough.

My Houston Ground Angel was waiting for me when I got down to the terminal and in just a few minutes, I was "home sweet home" at RMH. Roger and I left Charlotte with her grandparents and headed out for a last-minute date. we ended up just going out for some good ol' Texas BBQ and talking. These are the best dates, in my opinion, because we rarely get a chance to really just talk with each other without tons of distractions. Plus: major bonus when the restaurant served Fat Tire beer. We hardly ever can get that in VA. It's a Colorado favorite!!

We came home late and relieved our wonderful babysitters then settled down for a quiet evening together. It was SO nice to have all three of us under one roof...if only for an evening. We slept in late (if you consider 8 AM late...it is in our house) and then got up for breakfast. Roger made eggs and Charlotte didn't eat much. She explored the play area and walked around downstairs.

Then we decided to take advantage of the car we have for the weekend and headed over to the Galleria. This is a mall to behold! Quite the experience and a nice, cool indoor place to window shop. We did make a few purchases. I had a Godiva gift card burning a hole in my pocket so we bought some chocolate covered strawberries and a few yummy truffles. Charlotte did a good number on the strawberries. Yay calories! We also stopped in Borders and Charlotte found a Melissa and Doug horse playset with 12 different 3" felt horse figurines. We got this for her and she has spent the evening playing with them. She decided that I got to sleep with the "grown up horses" and she is going to sleep with the "baby horses" (the horses are all the same size but somehow she decided that some are grown ups while others are babies. Whatever!

So back to the mall...we made our way down to the ice skating rink where we met up for lunch with my friend Cara. Cara and I went to high school together and we have kept in touch loosely through the years. The "keeping in touch" part has been made immensely easier lately with Facebook so when we found out that she would be spending her family vacation in Houston about the same time that we would be here, we decided to try to meet up. She got to meet Charlotte and we got to chat while eating at a Mexican restaurant by the ice rink. I think Charlotte's favorite part of the day was watching the kids ice skate. We might make a return trip to the Galleria just to do that again.

Time was getting short so we made our way back to RMH so Roger could pack last minute essentials and get ready to meet his ride (another Houston Ground Angel...actually the same one that brought me in last night.) We said our goodbyes and as far as I know, Roger is making his way home.

Charlotte spent the rest of the afternoon in the playroom with me, Granpda, and Grandma Bonita. She spent a LOT of time resting on the giant stuffed cow (it's practically lifesize and very comfy). A youth group from a local church came in to make dinner (burgers, dogs, and salad and YUMMY brownies and cookies). Charlotte's dinner consisted of a hot dog bun, about a dozen pickle chips, and a brownie and a cookie. So nutritious but at least she's eating. We said goodnight to the grandparents and headed up to our room to settle in for the night. Now she's watching Diego and resting in bed. What a day!

Tomorrow will be full of follow up appointments, her next radiation treatment, and (of course) a day full of NPO. Let's see what I can get into her by 6 AM. Hopefully, she and I will find a rhythm soon enough.

I almost forgot to mention that we actually had "coordinated outfits" today. Miss Devon (or Charlotte's Devon as she is sometimes called) sent us a great care package with a purple Dora shirt for Charlotte (that says Princess Power), a pink Peace Frogs shirt for me that says "Faith, Hope, and Love" and a big pink shirt for daddy that says "Tough Guys Wear Pink". We couldn't resist the opportunity and decided to all wear our Devon shirts today. You can see our full ensemble in the picture.

So that's all I have to report.

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.

A Great Day

I can't figure Charlotte out. She starts to look zombiesque and then turns around and has a great day.

We went to the Home-based Business Bazaar and she didn't seem to do that well. We made the rounds and saw a few friends and RNR members like the Flanagans, Bridget, Evan, Malia, Xavier. We ended up in the nursery where we stayed for a while. There were some very nice things for sale and I know Granny did her share to make it a successful event.

Then we made our exit and I promptly pulled something in my back somewhere between the front door and the end of the sidewalk. I have no idea what I did but it started really bothering me by the time we got to the car.

When we got home, I fed Charlotte lunch and took some Vitamine "I." Granny was merciful and took CJ over the Uncle Kolbey's house so I could get the ice going in best Dr. Anna style, "20 minutes on, 20 minutes off."

While I sat on the couch trying to find a comfortable position, I found myself watching, Farrah's Story. This is not a show to watch if you're emotionally fragile but if you want a real look into the life of a cancer patient, with all the ups and down, the side effects, the hopes, the impact on families, etc...then watch it.

It really ran me down though and I found myself slipping into Seriously Bummedsville a few times. Kinda ruined my day. I told Rachel tonight that it's my every 6-month funk which is actually happening once or twice a month these days.

Rachel went in to teach a class and lead Brithday Bashes today and I went in to help with the first ever Awesome Adventure Party! I was pretty much useless with my back/shoulder so I worked front desk and the regular crew wowed them. It was a pretty successful party from what I saw/heard.

When we got home, Charlotte was already saying she wanted to go to bed so we brought her back home and got her ready. She ended up having a great day, pooping, eating, drinking, and having lots of educational fun with Granny. She was just pooped.

Update:

Some of you have asked me to repeat Deb Harper's contact information. If you haven't seen yet, Deb did a photo shoot with us last week and took some FABULOUS pics of Charlotte (me and Roger too). She is doing a "Pictures for Charlotte" fundraiser where she will take pics of your family (wherever you wish) and give you an edited CD of the prints in exchange for a donation of your choice for Charlotte.

If you are on Facebook, you can take a look at the pics on either mine or Roger's sites. We should have some posted to the Caring Bridge site soon.

Her contact info is: Deb Harper (804) 273-0064
Harper3902@aol.com

Update:

Aunt B and Uncle Not-So-Hairy headed off to the Hawaiian Islands this morning and Reesestrong (the doll) went with them. Can't wait to hear the stories and see the pics.

Extra positive thoughts should go out to the Reilly family as their son, Liam, who we met at the Neslon Clinic, passed away on Monday the 22nd. I say again, cancer really, really sucks!

On a more positive note, Nile, the boy with sickle cell anemia I met in the MRI room, has had a good go of things lately as he got to meet the Super Bowl Champ Steelers and received a bunch of stuff from his favorite team, the Washington Redskins. He even got a call from Santanna Moss (wide receiver). The absolute BEST thing is that he will be receiving his bone marrow transplant next week (I think)!

Here's his CB site: http://www.caringbridge.org/visit/nileprice The Redskins visit (Howiette the Hoggett actually) was caught on film and his expression when he realized what was going on was priceless (no pun intended). It's part of Channel 12 About Town. I've asked Nile to forward a link to the video.

Just got notice that Rachel posted another new update to CJ's journal. Hope you don't mind the multiple posts. Don't forget to read Rachel's last post about Deb Harper's photo shoots!

CJ has had two "walks" around the neighbourhood today and is currently next door with Granny working on some of those cookies. She watched "Mary Poppins" again today and when I asked her if she would like Mary Poppins to visit again and bring her tea set, she said "Yes!"

Everything depends on her numbers but hopefully we can get it planned soon.

Tomorrow is a very long day because we're starting a new drug in the mix and they have to do some extra tests and such. Heard from the Klauers that they will be having a long day of it too. It'll be a Dad's day by the looks of it. The two families are conspiring to open a Tiki Bar at the Nelson Clinic as part of our new "Adult Life" department! :-)

So here's to everyone fighting the good fight past, present, and future. I raise a toast to you all.

Now on to an ice cream party!

Low Key Days

A moment to breath between things.

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

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

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

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

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

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

Enjoy the heat!

Update:

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

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

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

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

But I digress...

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

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

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

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

Gotta go seek out some mid-afternoon caffeine.

Update:

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

Rachel

You're Awesome for Keeping Up with Us

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

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

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

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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

Happy day!Rachel

It was a Decent Night

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

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

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

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

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

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

Rachel


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

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

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

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

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

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

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

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

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

That's all I have to say for now.

Rachel

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

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

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

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

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

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

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

zzzzzzzzZZZZZZZzzzzzzzzz!!!