FAQ about donations:

Thank you to everyone who has inquired about donations to CJSTUF and other donations in Charlotte's honor. There have been a number of questions so I am going to address them here:

1. To Whom Should I make a donation in Charlotte's honor?

There are a number of worthy causes that have benefitted us this year. Besides CJSTUF, donations can be made to Make-A-Wish Foundation, ASK Clinic at MCV, or Noah's Children. Other worthy causes not mentioned in the obituary include ReeseStrong, Connor's Heroes, Ronald McDonald House, and Caring Bridge.

2. How can I make a donation to CJSTUF (or any of these other organizations)?

You can bring your donation to the memorial service on Saturday. There will be a lockbox at the service and reception with the logos of all the organizations that have benefitted us (as well as CJSTUF). Donations can be accepted there. All cash donations will go to CJSTUF unless otherwise specified.

A donation link will be set up on the website soon (we are working on this). This will allow for online donations via PayPal. Other donations to CJSTUF can be sent to our home address: 9 Slash Ct, Ashland, VA 23005. Checks should be made out to Charlotte or to CJSTUF.

3. Are donations to CJSTUF tax-deductible?

While we are an officially incorporated organization, we do not yet have 501(c)3 status. Donations are NOT currently tax deductible; however, our board is pursuing tax-exempt status and we expect to have this before the end of 2010. We will definitely make sure everyone knows when we have tax-exempt status.

4. I work for a company or volunteer for an organization that raises money and/or matches funds for other organizations. We would like to help CJSTUF. How do we go about this?

We would love to work with you and your company/organziation. Most companies or other organizations require that a benefitting organization be tax-exempt or have tax-exempt status in order to qualify. CJSTUF is not going anywhere and we would be happy to work with you once we reach tax-exempt status! Just keep your eyes and ears open.

Thank you, again, for the momentum and energy and giving spirit that has been put forth in Charlotte's name. We are humbled and appreciative!

Rachel and Roger

Another Busy Day & CJSTUF Kickoff Meeting!

Well, first I must update you on Thursday.  Roger and Charlotte went to the library and spent some quality time reading books.  We also had Thanksgiving dinner at RMC with the Field Hockey team.  What a wonderful, generous bunch of girls (young ladies!).  The RMC Thanksgiving meal was fabulous and Charlotte enjoyed seeing the girls, especially her buddy Walker.  We came home and watched the Wizard of Oz before Charlotte headed up to bed.

On Friday, Roger took Charlotte to MCV to get her stitches out.  In true hospital form (I think this happens every 2nd or 3rd time we have an appointment) nobody seemed to know we were coming.  I guess there was a communication mixup but her appointment was at 9:30 and Dr. Tye doesn't even get there on Fridays till 10. Anyway, Roger was a bit miffed but used the opportunity to take Charlotte to Nurse April and get her dressing changed.  She always does a wonderful job.  They got home a little after noon.  Stitches in her head are out and everything looks great.

Meanwhile, we have our flights booked to Florida.  We will leave here on December 1st (pretty early in the AM) and return home late on the 14th.  We get to fly through Charlotte (Joy!) but it shouldn't be too bad.  They are working on getting us in to a princess breakfast/lunch at Disney.  Those book pretty quickly and since we are making our trip kind of last minute, that has presented a challenge.  I know they will do what they can.  We know from others who have had the MAW experience (including Reese who is there right now) that it is just AMAZING.  Disney itself is pretty cool but the MAW folks definitely go all out for their families and word on the street is that the Disney employees keep an eye out for the MAW families and make sure to treat them with extra TLC.  I'm not opposed to that at all!!!  This is one of the few times in my life when I will take advantage of any and all special treatment Disney wants to give to our family. 

Noah's Children came to visit yesterday.  They are a palliative care and hospice program for children exclusive to the Richmond area.  We met with "the Cathys" (both named Cathy, one a social worker and the other a nurse) and they shared some information about the organization, met Charlotte, and got some info from us.  They have their own doctor (Dr. Archuleta), a pediatrician specializing in palliative care, who will now coordinate with Dr. Khan from this point forward regarding Charlotte's care.  We talked about our desire to stay at home as much as possible at this point as well as other things that may come up in the weeks to come.  Their staff (consisting of a chaplain, social worker, and a team of nurses) will be available to us 24/7 for anything we might need including emotional support, medical care, respite, etc.  They will visit weekly (at least for a while) and continually update our plan based on our needs.  They will also help, when the time comes, in planning Charlotte's final days and what will happen upon her death. 

That seems incredibly bizarre to type that last sentence.

I have said before that this whole experience is very surreal to me.  It really is.  I've never had a family member (grandparent, parent, etc.) experience dying in this way (at least not that I was old enough to remember) so this whole concept of knowing that the end is coming but not quite knowing when is very strange to me.  It is so odd to talk about the end of her life in such a matter-of-fact way.  SIGH.

We also had a visit from Katie Reynolds, one of Charlotte's old babysitters.  Her mom came along as well.  They shared some books and had some quiet visiting time. 

Yesterday evening, the Advisory Council for CJ's Thumbs Up Foundation met for the first time.  I just want to recognize the folks that were there and are now a founding part of the group.  They are:

Meredith Hayes
John Toscano
Dr. Anna Madland
Jay Campbell
Emily Starrett
Kim Thies
Lauren Coe
Pam Myers (not able to attend yesterday but she's part of the group!)

We had a great meeting and discussed moving forward on a number of initiatives, capitalizing on the positive buzz that this has generated on Facebook, Caring Bridge, and within our community.

Long story short, the website is in process and should be "live" very soon.  We are working on getting an official blog (you're reading it now!) that will eventually navigate us away from Caring Bridge and directly on to the CJSTUF website.  This is mainly because we will have a lot more functionality for social media, etc. with our own blog.  We LOVE Caring Bridge but we are moving on to bigger and better things...

The Advisory Council members are working on a business plan, bylaws, and incorporation.  They are going to meet on their own and report back to us, probably after the Disney trip.  I am so excited!

I think that is the main stuff to report for now.  I must get ready as we have another busy day today.  We are going to the Coliseum with one of Charlotte's boyfriends (Wyatt).  She has a date to see Disney Live!  Then we will be off to Fredericksburg for the prayer service at Trinity Episcopal Church.  This will be a very informal prayer service (Compline) in Charlotte's honor at 5 PM with a small, informal reception to follow in the fellowship hall.  All in the Fredericksburg area are welcome to attend.  The church is on College Avenue, across from Mary Washington. 

Hope everyone has a wonderful weekend. 

Rachel

Crazy Weekend

I guess it's my turn to update today. It's been kind of a crazy weekend in many ways.

Friday, I kind of had the day to "myself". I ran errands for work and home, went to visit our friend Wyatt in the hospital who (poor thing!) was bit by a copperhead snake! Wyatt just turned four and is such a dear. It was sad to see him in pain in the hospital. Good news is the antivenom seems to be working and he went home for recuperation that day (basically just 24 hours in the hospital). Finally capped the day off with a long-overdue pedicure (yay!) at Divas.

When I got home, I found Meredith and Phyllis organizing Charlotte's new art/table area. Meredith had this great idea to use the wall space to install a peg board (painted to match our decor) with some fun organizer containers for storing note pads, books, crayons, art gear, etc. So far it's looking great. Between that and moving a few other pieces of furniture around, the downstairs is looking WAY more organized.

Saturday was a morning of work for me. Then I read Roger's post and made the mistake of going to Zach's Caring Bridge site which sent me into a seriously emotional tailspin. I think between all the frustration of the week combined with his very sad situation, I just lost it. Fortunately, Roger and I were already planning a date for the evening and my aunt and I spent the afternoon getting some retail therapy. We went for a mini shopping spree at Kohl's and got some great deals. Got a few other necessities while we were out and about and headed home.

When I got home, Roger was making Charlotte's dinner and we still hadn't settled on any evening plans. I did some research and realized that the Dance Space was having one of their Swing Dance evenings SOOO....we got kinda dressed up, went to Mekong for dinner (one of my faves) and then went upstairs to the Dance Space. For those who have never been before, basically you just pay $7 per person (on the honor system) and the dance floor is open to anyone. They play swing music for about 4 hours. There are apparently some "regulars" there and folks at all levels of dancing ability. For those who don't know, Roger and I have taken a few lessons (back in the day) and we do love to go dancing. Just haven't done it in a while. It took us a little while to find our "groove" again but it was a LOT of fun, great exercise, and I think we picked up a few new moves watching the others. It really was a great evening.

This morning and afternoon has been all about playing catch up. The office has needed a big cleaning out for a while so that has been the biggest project. Roger raided the neighbors new wood pile (they just cut down a few trees and let him take whatever he liked for firewood) and Charlotte is puttering around the house staying very busy. She's currently playing with Uncle Kolbey.

I am hopeful that this week will give us some more answers because the last week was definitely one of the most frustrating I've spent in this whole process. I'm just tired of living in limbo and I don't want that tumor to have ANY more chance of growing. While I tell myself to live one day at a time (and really that's all I can do), I can't keep living like this. Emotional fatigue has definitely set in and it's driving me CRAZY. Thanks again to everyone offering moral and emotional support. The counselor and I have a "date" tomorrow morning and (as usual) it will be well-timed.

Hope everyone's enjoying the weekend. The weather is fabulous!

Rachel

Charlotte is Finally Home

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

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

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

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

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

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

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

WHEW!

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

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

Rachel

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!!!

Care Calendar has Been Updated

Needs to watch Charlotte over the next two weeks have been posted on the Care Calendar. Please go there if you think you can help. There are some morning and evening needs. You can also email me if you can do some of the time but not all. Some of the timing is flexible.
Instructions for accessing the Care Calendar (you need a code) are in the RESOURCES section of this Caring Bridge site.
I think I have also figured out how we can post a calendar with fun-raising events. More on that soon. Gotta go teach...
Rachel

Update:
Charlotte is sleeping. I hope that's not a bad sign but my kid never naps! She had a busy day,though. Roger took her to PT and she did very well. The therapist was very impressed with her progress and she got to ride the tricycle.
Then it was off to lunch with her "boyfriend" Wyatt at chick-fil-a. She actually climbed up the play area and went down the slide. She hasn't been able to do that for a while. We also ventured over to Romp n' Roll for some playtime. Needless to say, when she got home, she went to snuggle with Daddy and CRASHED.
Oh, and she POOPED this afternoon. Hooray for poop.
That's all the news to report so far.
Rachel

A Few Quick Notes

Very quick note.
The Randolph-Macon College bookstore (now owned by Wal-Mart! :-) ) has Charlotte bracelets!

There are also lots at the store and we'll be happy to deliver any where!

Thanks,
Rog

Next very quick note.
Ashland Breakfast and Lunch (Formerly Pete's Restaurant) on Ashcake and US 1 now has pink bracelets. (and pretty good chicken noodle soup as well).
Had a cool event in my babies class today. One of the more serious babies actually gave me a little bit of a smile while I was tickling her during Rompy's goodbye song. That was a first and it made my day!
Other news, I've confirmed the participation of the Uptown Vocal Jazz Quartet as the "headliners" for the final concert in Rompy's Summer Concert Series. The concerts will take place on the second Thursdays of June, July, and August. UVJQ will perform on August 13 and Gypsy Roots Swing (with Thomas Wakefield) will open the fun with their own brand of "jazz manouche." Both bands are donating their services.
All concerts will be used to gather food donations for the Central Virginia Food Bank and monetary donations for CJ's fund. They'll be in the Chick-fil-a parking lot and we're always looking for more sponsors!
As I get all the other bands confirmed, I'll send out the big press release. Just thought you get excited by the Uptown/Gypsy Roots development. Gotta love those guys!
OK, not such a quick note.

Mommy's turn:
Charlotte's days continue to be good. I can only assume that the overnight IV fluids that we have this time around have something to do with it (and maybe the glorious power of prayer). She continues to keep up her energy, appetite, and a poop at least every other day. We got permission today from our NP for IV fluids to continue until her clinic visit on Friday.
We will be very sad to see Granny, gramps, and Kolbey leave tomorrow. for Florida. Kolbey will fly home on Monday but Granny will not return until the end of the month....hopefully timed well with our next round of chemo.
As mentioned, i will be posting some "needs for help" on the care calendar soon. Hopefully by late tonight/early tomorrow.
ALSO, our fun-raising team has been busy, busy, busy. First of all, the checks keep floating in from the Head Shaving party with additional donations for Bob Flanagan and Mitch Hayes. Way to go! We also have a LOT of upcoming events in the remainder of April, May, and even into June that will benefit Charlotte. I am thinking that the best way to get the word out about this is through a published calendar; however, I'm not sure WHERE I can publish it. There are no spaces on Caring Bridge and Care Calendar doesn't seem to be the most user-friendly thing in the world. If anyone has any ideas about this, please email me directly. I was thinking of something in Publisher/PDF format that I could post online somewhere...I'll work on that.
Tomorrow morning it's RnR for mommy and PT for Charlotte (and Daddy). Then we'll do the big switcheroo in the afternoon.
I'd like to see the sun but I really won't complain...
Rachel

New Caring Bridge Page

Oooh....NEW CARING BRIDGE!!!
There are updates to this site as you may have noticed. Some great features include:
o We can now put over 50 pics on the photo section (before we were limited to 12)
o The links section has been changed to RESOURCES and has more flexibility. Our Care Calendar, bracelets, and other information have been updated there (it disappeared for a while).
o We get to see some pretty interesting stats about our website and we can also track the other Caring Bridge sites that we are following regularly too!
Anyway, on that note, I thought you would be interested to know that the 61K+ hits that our site has generated is the result of over 630 unique visitors! Just goes to prove that 1) Charlotte has a lot of fans and 2) You folks are repeat offenders (if not addicts!). Thanks again for your continuing support.
I haven't written in a few days but Roger has kept you updated. Yes, I am sporting my new haircut. For those of you who know me well, you know that my hairstyle seems to change with the season. Until Thursday, my hair was the longest it had been since before Charlotte had been born (after which I proceeded to go much shorter and then gradually grow it out again). Anyway, while I am not brave enough to shave my head, this was the next best thing, I guess. I'm getting used to VERY short hair again but I think I like it. Charlotte seemed to like it too as she gave me a big smile when I came back from the haircut. I even brought home some hair "for the birds" from the hairdresser's. So a quick shout-out to Karin at Diva's for always helping me look as beautiful as I can possibly look! She's been cutting my hair for over 5 years and she's great!
Roger is out in WV as we speak and playing a Civil War Ball with Southern Horizon. For those of you that know us, that sentence just doesn't seem bizarre, does it?
Charlotte had a fabulous day with a playdate with her friend Abby from church that included lunch and lots of kid time. I understand from my mom that she has had a wonderful appetite all day and stayed VERY busy. She finally conked out around 8:30.
I have been very on the fence about trying to get her in for PT/OT next week. First of all, it's very difficult for them to try to get us "in" as Children's stays very busy with their clinic but I also feel like she has just been doing so well. We tried to get her back into therapy the week we ended up back in the hospital and it was oh-so-frustrating to have that setback. Anyway, I have decided that maybe we will just enjoy this upsurge and let Charlotte rest and rejuvenate as much as possible before Thursday/Friday's craziness.
As many of you know, my parents are now here and oh is life so much easier again! It just allows Roger and I to focus our efforts on work and not have to worry quite as much about Charlotte (As evidenced by what will be almost 20 hrs of work at Romp n' Roll on my part over this weekend alone!). This is the first opportunity they have had to see Charlotte since her diagnosis (she had seen them in Florida just prior to her first hospitalization) so I think the Mutual Admiration Society is very much in effect on Slash Ct.
Many of you have inquired about further details for the Head Shaving party on April 10th. Plans are definitely still in the works but we have to hash out some final details. My guess is that timing will be late afternoon/early evening to accomodate work schedules, etc. Jackie, our fun-raising guru will hopefully meet with us in the next few days and give us some solid news...we appreciate your patience as well as everyone's willingness to help and support!
The piano-moving may move (HA) to after Easter due to logistics with schedules. We will let you know when we have a different date.
FINALLY, I want to give a shout-out to Melissa, Katherine, Liz, Miriam, Amanda, Anna, Kim, Bruce, and about 50 other people who I am forgetting to mention by name: These wonderful women (and even a few men) just spent the last few days organizing and running the Mid-Atlantic Regional Music Therapy Conference in Richmond. This has been a labor of love (I'll use that term a little loosely!) on the part of the members of the Virginia Music Therapy Association for over a year and a half. Melissa and I had been local co-chairs of the event and had been in the middle of LOTS of planning, budgeting, and all kinds of other craziness when this speed bump hit our lives. One of my first calls was to Melissa (mainly because she works at MCV and I knew she would find out sooner or later that we were there) and her first directive to me was to STOP worrying about the conference. Anyway, the rest of the team rallied around Melissa and from what I understand, the conference was a giant success. I was sad to have missed it all and I owe everyone on the local committee a drink (or 3). I owe Melissa a whole KEG! Thank you from the bottom of my heart for everything that you ALL have done!
Ok, I have written enough of a novella for one evening so I promise to sign off! Let's pray for some sunshine, eh?
Rachel

March 27th, Dad's Birthday

OK, so I'm doomed to lose at least one post per week. Let's try it again.
It's March 27th. Dad's Birthday. Happy Birthday! CJ has a little something coming to you in the mail.
I was saying that every good day that Charlotte has is such a gift. I have really come to appreciate every day as it comes especially knowing what's coming up next week.
Today she took a couple walks with the grandparents before the rain moved in and then ran up and down the hallway at Uncle Koldey's house like a wild child.
In a great example of just what we're willing to do for our little princess, at dinner tonight, Charlotte was shoveling in dinner and came up to the broccoli and cheddar on her plate. She wanted to eat the broccoli but not the cheese. So Gramps gathered up all the broccoli, rinsed it off and delivered it back for her to eat, which she did. And not only did he rinse off the broccoli, he did it twice.
For those who were wondering, the Youtube videos of the Uptown Vocal Jazz Quartet are back up and now all 6 are there. Here's the link to the search page:
http://www.youtube.com/results?search_type=&search_query=uptown+vocal+jazz&aq=f
Please remember Megan Blake as you send out the positive vibes. She had her second round of chemo this week. Katie came to RNR and was her usual adorable self.
http://www.caringbridge.org/visit/meganblake
Off to West Virginia tomorrow for a date with Southern Horizon. Taking the new guitar. Thanks Aunt B and Uncle Not-So-Hairy.
Gramps is already doing yard work so for those wanting to help with that, you'd better get over here and tie him down or there won't be anything left to do. Good thing it's raining. :-)

Andther Good (and Busy) Day

Another good (and busy) day. Daddy and Charlotte were off to the Doctor as I went to work. It took longer than expected (what a surprise) but:
0. Her levels are all great, some even at "normal" levels
1. They decided to give another dose of Vincristine so she got her "Day 15"/"Day 8" anyway (a week late).
2. They agreed to send a copy of her protocol to the 7th floor (peds unit) for her chart there to avoid any further confusion (don't ask me why this already had not been done).
3. She will be back again next Thursday for a catheter insertion (oh joy) for another 24 hour urine collection.
4. Next Friday we start all over again with an early morning MRI and then admission to the clinic/7th floor.
WHEW!
Her afternoon also included a trip to Chick-Fil-A and some playtime at Romp n' Roll. Now it's Yo Gabba Gabba time ("What's your Talent???") and mommy's gonna see what we can find for dinner.
Did I mention Granny and Gramps arrive tomorrow? Yay! Hoping for a safe and quick trip up the I-95 corridor tonight and tomorrow!
Many of you have mentioned to us that Miss Virginia is currently launching a campaign to raise $500K for children's cancer. If she raises that amount by April 11th, she will be shaving her head! We are doing some "scoping" to see if she could arrange an appearance at Charlotte's party.
Here's the Link if you want to read more about it.
Rachel


Update #2 for the day:
We have an important errand on the Care Calendar for strong backs and a truck. A dear friend and fellow music therapist has donated their old piano to us (long story) and we just need to get it to our house. They live in Powhatan. SOOO...we need someone with a pickup truck and strong back and another 3 someones with strong backs to meet at our house and then drive to Powhatan to get the piano and transport the piano back to our house. Our friend threw out April 4th as a possible date (a Saturday). Pickup just needs to be completed by 11 AM. If you can help, please sign up via the Care Calendar (see information for this on our LINKS page). Once we have everyone signed up to help, we will put everyone on the team in touch for coordination. THANKS.
Also, our good friend Reese had a wonderful article written about her and her family in the Mechanicsville Local newspaper. Here's a LINK to the article...
Roger and Charlotte saw Reese at the Clinic today and it sounds like she's doing well. You can keep up with her on her Caring Bridge site:
www.caringbridge.org/visit/reeseklauer
Rachel

Charlotte has Rebounded and Looks Great

6:51 AM
Two things:

First: Time Magazine has a very interesting cover story about insurance this week and the author, Karen Tumulty, was interviewed in NPR's Fresh Aire yesterday (Wed. March 11). It was a great look into the problems some (many) people are having in dealing with insurance companies. This is NOT our experience as Humana One isn't denying us coverage but the mindset leaches over the boundaries. The second story is good too. Here's the link to the broadcast/podcast:

http://www.npr.org/templates/rundowns/rundown.php?prgId=13

Next, I know this is extremely short notice but would any Caringbridge families be interested in a free Romp n' Roll Virginia Center playdate on Sunday? I'll open up the time between 2-5pm for any CB kids. It will be like a low-key open house and we'll have the art/party room open for a place to sit/have snack if you like.

Please answer on the guestbook or call the store at (804) 249-1001 to let us know if you're coming so we can get some idea of what kind of numbers to expect.

Thanks and take care,
Roger


4:18PM Update
We are in the homestretch of round 1. Charlotte has been doing very well and all the doctors and nurses are happy with her progress. After that little bout of grumpiness and poor color, she has rebounded and looks great. She is currently getting her last chemo medication on this round and should be released sometime tomorrow (hopefully in the morning). She has had a busy day, playing with some other kids on the unit, working with the preschool teacher on cutting and coloring skills, and taking lots of walks or rides in the stroller. She is currently being annoyingly adorable and talking her head off!
We are still trying to sort out the insurance mess. Before I call the insurance company and accept the "out of network" services, i'm trying to get some ducks in a row and make sure some of the advocates who are working with us send us in the right direction.
I finally read the TIME magazine article that Roger referenced today and it certainly echoes some of our experience. I know many people on the "conservative" end of the political spectrum who want to talk about personal responsibility and lack of government control in things like this, but what is clear in this piece is that this has nothing to do with any of the above issues. People get health insurance thinking that they are being responsible only to find out that their coverage basically only helps them as long as they are healthy. Somehow I don't understand the purpose of health insurance for healthy people. We definitely have created a system that reinforces chronic or acute care over wellness care. It's very frustrating.
Anyway, I digress...
Roger and I have looked at our calendars for the next two weeks to see where we might have needs.
To give everyone an update: food-wise, we are a-ok. We either have had meals come in this week or know that we have some more coming next week so I think the Reynolds pantry/freezer will be well-stocked for the next little while.
We also had the services of a housecleaner donated to us and will be utilizing that next week so the house will be in good order.
I know we will have to schedule lots of doctor and therapy appointments in the coming weeks. For the most part Roger and I have worked out our schedules to always have one of us with her. The main exeception is on Tuesday mornings. For the next two Tuesdays (17th and 24th) until my mom gets here, we will need someone to watch Charlotte at our home from about 8:30 (ish) until about 1:30 (ish). If you can help with this, please sign up on the Care Calendar. If you need a reminder or help accessing the Care Calendar, please go to the LINKS section of our Caring Bridge page. A link to the webpage is there as well as the username/password codes that you need in order to access the site.
Aside from that, we do welcome visits from friends, family, and other kids. While we do not need to take out of the ordinary precautions, her immune system will be compromised, especially in the next week so please do not visit us if you have recently been ill or have had a household full of unhealthy people.
I think we are reaching the end of our current batch of bracelets and Melissa will be placing another large (1000!) order soon. This means that we have sold almost 300 bracelets in just a few short weeks! WOW! Her bank account is growing and I just had to write a few checks this week for medical bills that have begun to "trickle in". We are so grateful for all the donations. The money, gifts, gift cards (many times for restaurants or groceries), clothes, and thoughtful cards are all so appreciated. Again, if you haven't received a personal thank-you from us yet, you should soon and I really appreciate your patience!
The 1000 bracelets should tide us over for a while, I think! I spoke with Barclay DuPriest at the RMC bookstore yesterday and she has asked for a large quantity from our next shipment so they can be a central distribution site for the Ashland area. More on that to come soon!
Before I sign off, I want to mention the "Secret Angel Stitchers". I had never heard of this organization before, but last week we started to receive random cards in the mail from this group. Somehow we were nominated and these ladies send machine stitched angels, animals, and other sweet tokens with a personalized card. These people send their gifts anonymously and pray over each token. We have received gifts from as far away as Australia and every day when i get the mail there are 1 or 2 more. So sweet! For more information on their organization, you can go to www.secretangelstitchers.com
Thank you to whoever sent in the nomination. We feel more than blessed!
HUGS to everyone,
Rachel

Charlotte's PT

It's Wednesday.
It's Bidnesstime...(silly TV reference that has nothing to do with anything other than it's Wednesday.)
Reason #42 Why I Love CiCi's Pizza in Hanover:
They are now participating in a Hanover County Schools program in which students with special needs come in with an assistant and are given "jobs" like bussing tables, greeting customers, etc... This gives them confidence, social interaction, and real job skills they can use in the future. Kudos to everyone involved with that.
Paired with our partnership with them at Romp n' Roll and the generosity they have shown to us during Charlotte's "tumor adventure," I'm convinced they need to have a lifetime membership of some kind cause I'd sign up in a heartbeat!
I need help (insert joke here). I was told by an RNR customer of a Caringbridge site for a guy named Jacob but I have since lost the paper I used to jot it down. The dad is now staying at home full time to take care of him. Anyone reading this have the slightest idea what I'm talking about? Please let me know if you do.
Gotta go work on Rompy's Band!
Rog

Charlotte is sleeping after a very productive morning.
We went for PT and OT at the Children's Hosptial West End location. She did well working with Ms. Lauren and Ms. Aileen with very little whines or fussing. She is doing SO much better walking on her own. We are practicing standing on one foot, standing up and sitting down, and walking (including walking up and down stairs). Her shining star moment today was when Ms. Aileen brought out the pink princess tricycle for Charlotte to ride. Without ANY prompting, Charlotte stood up from her chair and walked about 3-5 feet just to get to that trike! Then she worked on riding the tricycle up and down the hall. Superstar! Grandpa and I were most impressed.
We capped off the morning with a visit to Costco for our famous traditional lunch of pizza and ice cream (frozen yogurt). She fell asleep on the way home.
Our therapy schedule is (mostly) set for the next two weeks. We are aiming for Monday and Thursday mornings which works very well with our RnR schedule. This should take us up till the time that chemo will start.
We do have a need for some child care help on the next 2 Tuesday mornings from about 8:30-12:30. Roger and I both need to work so we just need someone to come to the house and be with her. Other kids can come as long as they are healthy. We have posted this on the CareCalendar so if you can help, please go there and sign up. (First come, first serve) There is a link to the CareCalendar including login information on the LINKS page of our Caring Bridge site. We may post more information soon as we have needs...
I must sign off and try to be productive...
Rachel

AWWWW moment of the week
Overheard at dinner:
"Mommy, when I grow up I want to be a mommy just like you."
Sniff sniff! She's a doll.

We apologize for any delay in the updates. Between busy days and fouled internet connections, it's been quite an adventure.
She did not go to sleep easily last night and was up at 4 AM this morning. She kept complaining that her "bottom" hurt and we are quite sure that thanks to all her antibiotics, she has a yeast infection. We got her some lotrimin and are trying to push the yogurt but that's not her fave.
She took a small nap after her early morning adventures and then had a fun visit from Holly and her three kids! Then Grandpa and Juanita Bonita arrived and she has been cheery ever since. We have decorated her My Little Ponies with bows and barrettes, colored pictures, and listened to stories.
Speaking of listening, tune your radio dials to 89.7 FM tomorrow morning at 7:30. We have been invited to appear on American Family Radio for an interview. One of the station managers knows the Barnett family and used to work for Romp n' Roll. They have been following our story and want to have us on the air.
Tomorrow should be a busy day at Children's Hospital and I have to stop by the DMV to get our new handy-dandy handicap sticker for the car.
Gotta go answer some emails...
Rachel

Feast or famine...I was just going to post this when Rachel posted hers. Sorry for any redundancy.
Had about as good a morning as we've had yet. Rachel had to get up with her early this time and is probably about to fall over.
Charlotte looked great this morning and has only needed a small amount of Tylenol the last couple of days.
We had a house full of people today including Uncle Kolbey who was officially watching her, and Holly Bingham and the "triplets" (not really triplets but might as well be!) who brought their amazing energy into CJ's space. Thanks a lot for visiting and sorry I had to abandon you.
Dad and Juanita Bonita are here and brought the case for the foamie hockey sticks! YAY!!!
I've been visiting other Caringbridge sights and I'm just amazed at the range and scope of situations. There are amazing stories of strength, courage, and recovery and those (mostly parents and spouses) who maintain the site in memorium long after the person has passed. And there are those of us in between just hanging in there.
I can hold my baby and let her fall asleep on my lap, like she did this morning, and for that I am so grateful. Others have not been as fortunate. Please keep the energy flowing.
Thanks,
Rog


Just a quick note to let folks know that you can go to the LINKS section of our Caring Bridge site for more information about how to get bracelets and how to access our Care Calendar. Since the grandparents are in town, we don't have a huge need for the Care Calendar right now, but we will try to let you know when needs have been posted.
I think we are "officially" out of bracelets although there are a few floating around at Romp n' Roll or at our house. More have been ordered and should be in soon. We have gone through 100 in about a week!
Must sign off for the evening as there is a big day ahead!
Rachel