Three Years (Pt. 1)

On January 6, 2010, CJ's Thumbs Up Foundation was officially incorporated, the first step in our process towards 501(c)3 status.  In the three years of our existence, CJSTUF has provided assistance (financial, material, and emotional) to well over a thousand people (children with chronic and life-threatening illnesses, their caregivers, and families).

We couldn't have done it without the support of our fabulous and generous Network.  You have answered every call for votes, donations, and time and for that we are grateful beyond measure.  We blew away all of our budget/revenue projections for the year and are extremely stable heading into 2013.

More importantly, you have helped us ease the burden of many families facing the worst scenario anyone could imagine.

The future is looking extremely bright for the Foundation and our pipe dream goals are seeming a bit less like pipe dreams than they did before.  Please stay tuned for some great upcoming events including CJ's Thumbs Up Ball in February, TEAM CJ's participation in the Monument Ave. 10K on April 13, and CJ The DJ's Bluegrass (Mostly) Boogaloo on Sat, July 20.  There will be a few surprises as well so pay attention.

Thank you, also, for helping US deal with our own grief as well.  Doing what we do is as much therapy for us as it is beneficial for our families.

We wish you peace for the coming year but hope you will also help us partake in a little excitement for CJSTUF along the way.

Love,

Roger and Rachel

Charlotte Jennie's Grownups

"One G*# D*&#ed Chocolate Chip Cookie"

Or better yet, "That Damned Kiss." - A Mighty Wind

Or slightly more diffused, "You know you've ruined it for me..." - Out Of Africa

We all have had events in our lives where one little detail eventually became more than just a detail in the overall fabric of our experience.  It morphed into an major element of the plot, influencing further development and screwing up your plan for where you thought you were going.  This butterfly did that to me:

A few days ago, Rachel came in the house and said, "Have you seen the new butterfly?"

We both went out and she showed me the purple butterfly that someone had covertly attached to Homer the Pine Tree overhanging CJ's Butterfly Bush.  We occasionally find things on or around CJ left by people we didn't see and they are always appreciated but I think I must have been in a certain frame of mind to receive this certain butterfly because it changed the course of my psyche.

Rachel and I had just come back from our vacation (it was fabulous, in case you hadn't heard) and I wasn't ready to get back into reality.  On top of that, I had been having lots of little "moments" that were weighing me down.  Moments brought on by the weirdest things.  Like hearing a song or being in a place where Charlotte had been. The bus was certainly back, parked squarely on my chest, and my "woe-is-me" song writing machine was picking up speed.  And a part of me was ready to stay on that path for a while. There's value (at least to me) in feeling the pain.  At least when I feel the pain, I know I'm remembering her. (I hate "at leasts")

And then I saw that damned butterfly.  It wasn't like the weight was lifted or anything too dramatic like that but it reminded me that people are thinking of us, which is comforting, and that I need to get my head on straight.  It even altered the direction of one of the songs I had been working on for a long time.

The problem is that it was fixing to be a pretty good sad song before then.  Now it's all confused and I may have to break it up into two different songs that sound a lot alike.

Be that as it may, the song writing machine (along with my attitude) has come out of its nose-dive and has leveled off for now.  The moments are still there, nothing has changed in that respect, but I'm at least able to deal with them for the time being.

Thanks to whoever placed that damned butterfly.

In other news, the Foundation is ending the year with both good and bad news.  The good news is that we were able to help 30 families, one way or another, to the tune of $14,000. That takes the total amount of aid since incorporation to around $27,000 in two years.  (We thought we were closer to $30K for a while but it still ain't too shabby)

The bad news is that we still have 13 families on the waiting list.  That's $6,500 if you want an amount.  We're really hoping that some last minute fundraising opportunities will help narrow that gap.

One not-so-last-minute FUN-raiser is the Ukrop's Monument Avenue 10K on March 31, 2012.  TEAM CJ will be in effect and there are different ways you can get involved:

1 - Join TEAM CJ, collect pledges, and run in the 10k.  If you commit to raising $500 or more, CJSTUF will give you a code to register for free!

2 - Go to MY fund raising page and make a pledge.  My goal for all of TEAM CJ is $10,000 but if I could do that personally, wouldn't that be totally cool!?!  The Mother Runners are going to be involved somehow. We haven't solidified details but there may be a pink running skirt involved! :-)

3 - Be a cheer-er for TEAM CJ along the route.  We need spirit, we know we do! We need spirit, how about YOU!?!

By the way, there are new racing shirts (real running shirts!) for all Team CJ participants!

GO TEAM CJ!!!

January will also be "Remember CJ Month" when participating stores will be donating up to 5% of sales for the month to CJSTUF.  Our first participant will be the Bed Corner in Stonewall Square in Mechanicsville.  Come buy a bed or mattress in January and help CJSTUF!

If you own a business or know of one that would be interested in participating, have them contact us asap.

I think that's all for now.  I'm sure Rachel will be back on with something I've forgotten.

Bye for now,

Roger

p.s. If you want me to explain the chocolate chip cookie reference, please let me know.

A Donor Profile

A Donor Profile: The Horn Family

When Charlotte Reynolds passed away in January of 2010, the Horn family knew that they wanted to find a way to give to CJSTUF in honor of her memory. They set an initial goal of giving $500 to the organization; however, they soon found this goal to be very challenging. Every month, they would try to save towards their $500 target but something would interfere: the dog needed to go the vet, the car needed new brakes, other unexpected expenses filled the budget.

The Horn Family: Fred, Lisa, and Abby

Finally, Fred and Lisa realized that the best way to give to the Foundation would be a little at a time. The family committed to $20 from each paycheck, drafted by their bank and sent automatically to CJSTUF after each payday. As Fred says, "In the end, we never missed the $20 out of each paycheck. As the months went by, the donations added up. We continue to give each month and we have now surpassed the original goal that we set for our family's contribution to the Foundation."


Thanks to their generous contributions, the Horn family has already helped to provide at least one Financial Assistance Grant for another family in need. They did this through small regular contributions that add up over time.


With our new online donation page, you can set up a recurring donation of any amount. Donations can be made automatically on a weekly, monthly, or annual basis.


Please consider an ongoing contribution to CJSTUF in your family budget. Help us continue to provide assistance to families in need.

Butterflyaway

To all our local network:

Kathy Lesher, the social worker from Noah's Children, suggested we have an event for children before Charlotte's passing as a way for them to prepare for it and to say goodbye. There will probably be more than one and the first will be this Sunday, December 27th at 2pm. For want of a better title, I'm calling it, "Butterflyaway" and it will be short and simple. We'll read the Very Hungry Caterpillar, do some butterfly arts and crafts in the art room, and then the kids can play in the gym for a while.

Charlotte will not be there which means either Rachel or I will not be there but the other one of us will be.

Kathy will also be available to answer anyone's questions. She might also enlist the aid of an organization called Full Circle Grief Center.

This event is free and open to absolutely everyone. Please email me if you plan to attend. We will open the 4:00pm slot as well if there is signifigant interest. A third possible event could be Sat, Jan 2 at 5:00pm.

This is extremely short notice, I know, so I'm hoping I could talk everyone into spreading the word.

CJ is resting comfortably. There have been many, many wonderful readers through the house and she has been awake about half the time. We've moved her Dexamethosone back up to 3ml from 2ml to see if that will help her swallowing difficulties.

There is an accupressurist/accupuncturist coming over tomorrow who has been recommended by Dr. Anna. Her name is Elizabeth and she told me that she has worked with a patient with swallowing troubles before and has had significant but temporary success improving the patient's ability to get food down. Temporary is all we need.

As I type this, I realize this is the anniversary of my Grandpa Homer's death (Dec 23-This will probably post after midnight). This kind of stuff puts quite the surreal tint to the holidays, doesn't it Gramses?

Three Days Worth of News...Long Post Ahead!

First of all, Beth has sent us a link to the pictures she took on our first day at the Magic Kingdom. Enjoy! Again, we are so grateful that she came to Disney with us and shared her time and talent. Thanks also to a whole host of people who helped her with accommodations, airfare, etc.

Now to pick up where we left off:
Charlotte slept until about 7 PM Wednesday night. We woke her up because we didn’t want her sleeping till 10 or 11 and then being up all night. Our plan was thwarted anyway. She was awake until 5 AM. Yes, you read that correctly. 5 AM! She just kept eating, watching movies, reading books. And NOT falling asleep. Roger and I took turns staying up with her but neither one of us really got much sleep. We finally decided to take her for a drive and she was out less than a mile down the road. Looks like we are back to resorting to infant sleep strategies.
Anyway, we decided to let her sleep and Roger and I went back to bed as well for a bit. My cousin Sarah, her husband John and their almost 3 year old daughter Tricia were on their way to join us for a day of fun at the Magic Kingdom so we diverted them away from the park and towards GKTW. We showed them around the resort and Tricia got to check out the Candy Land playground while Charlotte and Roger slept. Tricia had never met Charlotte (or CJ as she calls her) but it was so cute that from the moment she got to the resort she kept saying “Go see CJ? Where CJ?”

Charlotte got up about 10. We grabbed some breakfast/brunch and finally headed off to the park. We piled into one vehicle to save on parking. I think we made it into the park right before noon. The plan was pretty much a re-do of the day before. We went back to Mickey’s Toon Town Fair to see Mickey, Minnie, and the Fairies. This time, Tricia joined us in the experience. Yet again, we got great “star treatment” with our access pass. I think the park may have been even busier on Thursday and it was good not to have to wait HOURS to see the characters. When we went back to see the fairies, Rosetta was the same cast member as the day before, and as soon as Charlotte walked in, she said “Charlotte! You came back to see us again!” It was so great. This time I caught the whole experience on video and will post that soon on our new YouTube site (links will be provided). Her visit with the Fairies was still, I think, the highlight of the trip.

We got some lunch and then headed over to Fantasyland again. We repeated a few rides from the day before (Winnie the Pooh, Dumbo), tried a few new rides that we missed the day before (the 3-D movie Philharmagic which CJ LOVED), and we met Tigger, Pooh, Eeyore, and Peter Pan.

At this point, we headed towards Adventureland so we could scope out a good spot for the parade. We found a good “accessible” point and then Roger and CJ kind of camped out while we kept Tricia busy browsing Adventureland and getting ice cream.

The parade was fun and fabulous. Because of our great seat, many of the “walking” characters (those not on floats) came up to Charlotte and greeted her personally. She really loved seeing Stitch and waved at many of the other characters. Ariel even noticed (way up on top of her float) that CJ was wearing her mermaid dress today and blew a kiss right at her!

After the parade, we made our way with the crowds out of the park, got some dinner at Cracker Barrel (yum) and hugged goodbyes to Tricia, Sarah, and John. We’ll see them again next week but it was so great to be able to pal around with them in the park. Tricia was a doll and so much fun to play with. She really made Charlotte laugh with her jokes and funny phrases too. We were on our way to dinner when we started telling jokes. Roger tried to teach her the “interrupting cow” joke (it’s a knock-knock joke) and Tricia’s interpretation was to say in her toddler voice, “Knock knock. Who’s there? (long pause) MOO!” It had all of us (including Charlotte) in stitches!

Friday dawned bright and…rainy. It was raining from early on and the forecast was pretty much rain all day. The original plan had been to meet up with a bunch of people at Animal Kingdom but we pretty soon nixed those plans. Through conference calls and logistical arranging, we decided to all go to a lovely mall in the area that has nice holiday decorations, a kid area, and a food court. The crew included two of my friends from High School (Cara and Kim) and their kids, my friend Jamie (our current paparazzi), and cousin Julie, Aunt Jeanne, and Julie’s 17 month old Chloe. We pretty much hung out at the mall for about 4 hours talking, letting the kids play, window shopping, and eating lunch. Despite the diverse group and the abrupt change in plans, I think it all worked out pretty well.

As the rain continued, we said goodbye to Kim and Cara and the rest of our “crew” caravanned back to GKTW. Roger, Jamie, and Julie went to get ice cream when we got back to the resort while I stayed at the Villa with CJ, Chloe, and Aunt Jeanne. It was a great visit with everyone.
Around dinner time, we left Aunt Jamie in charge of CJ and Jeanne and Julie drove Roger and I over to Epcot to drop us off for our “date”. The plan was to trek through the Nations of the World and sample the food and beverages (mostly beverages) of each country. We knew we would both drink so we planned to take a taxi back to GKTW.

Here was our itinerary:
Mexico (margaritas and flautas)

Norway (no eating…we just rode the Maelstrom)

China (plum wine and noodle soup)Germany (beer and brats)

Japan (warm sake)

Italy (a sampling/tasting of three white wines)

Morocco (Coffee with hazelnut liquer and baklava)

France (cognac)

England (ale)

Ok, so yes, that’s a lot of alcohol and yes, we were pretty inebriated by the end of the night. In our defense, at most of the countries we shared one drink and shared one serving of each of the food. On that note, I don’t remember much of what happened after England. Roger got me to the car and we got home safely but we both definitely woke up this morning with a bit of a hangover. I rarely drink like that and can probably count three other times in my life when I’ve had that much to drink at one time but Roger and I had a great time. We really enjoyed ourselves!

CJ was up bright and early at 4 AM or so. She watched TV for most of the morning while mommy and daddy “recovered”. It was still raining and we knew the rain was supposed to last most of the morning so we had already changed the Sea World plan to Sunday. Eventually, we ventured down to breakfast and then took in some of the Magical Castle at GKTW that we hadn’t checked out yet. Unfortunately, horseback riding was canceled due to the weather, but we rode the carousel, Charlotte got a “touch up” on her manicure at the La-Ti-Da Kids Spa, and she made her special pillow. We also got to make her star. The ceiling of the Magical Castle is covered in 70,000 gold stars that are about 2” in size (each). Every wish child who has stayed at GKTW gets to put their name on a star and then the Star Fairy puts the star in a special place. Each star is barcoded so they will always know where her star is and she (or Roger and I) can come back and visit it anytime now that she has stayed at GKTW. While we can’t ever stay here again, we can come back to volunteer and visit.

After our time venturing out, we headed back to our Villa for a little more rest. We ordered lunch from Katie’s Kitchen (a GKTW favorite that is really Boston Market) and then trekked out to Downtown Disney just as the weather started to clear. We did some window shopping and souvenir shopping at Downtown Disney. Charlotte got a cat nap and we enjoyed the beautiful weather. The sun finally came out!

Our return to the Villa has included getting caught on our updates (hence this posting) and some more R&R time. This was a good “down” day.

Tomorrow’s agenda is Sea World (finally) and an informal reunion with some HS friends at Downtown Disney. Monday will include packing up from GKTW and if time and weather permits, we may finally return to Disney to check out Animal Kingdom. Then it’s off to Daytona Beach for the second half of our vacation.

To close this post, I’m going to re-copy some of Roger’s posts from Facebook from Thursday. This was after her “long night”…

She had a moment early this morning where she got confused and started to cry "I don't know what I want." Today, to kind of give her a way to explain it, I told CJ she was a caterpillar getting ready to go into her chrysalis. Soon she would go to sleep and when she woke up, she would be a beautiful butterfly. She seemed ok with this. In reinforcing the butterfly analogy, I was talking to Charlotte about it outside of Cracker Barrel and I talked about how things are going to get harder and harder to do because the cocoon is going to wrap around her closer and closer. At that point I made a face like I was getting squished and she found that highly amusing. She laughed a lot today and that’s good for everyone.

We hadn’t really officially decided how to explain what is happening to Charlotte to her but I think Roger’s analogy really nailed it. It’s perfect! Yet again, he amazes ME with his patience and vision. Charlotte had so many moments today when she was chatty and “with it”. She also has times where she just seems to regress or drift inward, not wanting to interact with anyone. She has taken to putting her Romp n’ Roll sport bottle in her mouth like a bottle sometimes (with chocolate milk in it, of course) and I think some of that infantile regression is coming out in all its shapes and forms. It’s been so great to enjoy this vacation with her. I’m glad she has all these moments of happiness!

Magic of Magic Kingdom!

So to start where Roger pretty much left off, Charlotte did, indeed, wake up at about 2 AM. Rather, she was awake when I went in to check on her. We read some books and I struggled to keep my eyes open but about 3:30/4 AM she was asking for chocolate milk and wouldn't you know we hadn't stocked up before our evening ended. Roger was a saint for going out to Wally-World (that gift card we just got sure came in handy) and getting needed supplies.

I went back to sleep for a bit but we were rarin' to go by about 8:30. I just hoped that she wouldn't melt down before lunch. We picked up Beth, our paparazzi for the day, and navigated our way to the Magic Kingdom.

Once we got there, we immediately got on the train and journeyed over to Mickey's Toon Town Fair. This was where we got to meet Mickey and Minnie and see their houses. After looking through their houses (a self-guided tour), we got to the the line for "THE MICE" and immediately our super-duper-ooper-schmooper GKTW access passes kicked into action. The Disney employee ushered us into the secret passageway and we had a much shorter wait. When we went in to see Mickey and Minnie, they were so sweet and spent so much time with us and Charlotte. Roger and I both got very heartfelt hugs from Mickey. You could tell that even though he doesn't "talk", he was empathizing with us and sending his good wishes. So sweet! After many pictures and the signing of autographs, we made our way to the next area of characters. We had the choice of seeing the princesses or the fairies. Since we knew we would be lunching with the princesses, we selected the fairies. Again, access is a good thing. There was over an HOUR wait to see the fairies but we got in after about a 15 minute wait. We took Charlotte out of her stroller as we made our way into "Pixie Hollow" and as soon as she saw the fairies, she let go of Roger's hand and went straight to SilverMist. The three fairies there today were SilverMist, Rosetta, and (of course) Tinkerbell. If you don't know these characters, you better brush up on your Tinkerbell movies! Charlotte talked to all of them and she was immediately a little chatterbox. Roger and I were just kind of left in the background to watch. I, personally, saw how happy she was and just started crying. I couldn't help it. The tears were just flowing. I'm not sure how long we got to visit with the fairies but it seemed like forever. They really took their time with her and made every effort to make her feel special. It was so great!

After that, I almost felt like I could leave and be happy. It was that good!

Then it was off to Fantasyland where we rode many rides, got to meet Ariel in her grotto (again, a fabulous meet and greet) and see a smokin' brass and drum marching ensemble play Disney favorites. Those Disney musicians are the best! We pretty much saw all of Fantasyland before it was time for lunch at Cinderella's castle. We had a brief meeting with Ashley, the mom who arranged our Princess lunch. It was nice to meet her in person and be able to thank her. Their family is vacationing at Disney this week as well and gave us their reservations to Cinderella's table. We feel so blessed!

We went through to another meet-and-greet with Cinderella and then up to our lunch. The meal was true fantastic Disney cuisine: I had a mixed green salad with pan-seared salmon, craisins, and blue cheese. Roger had the same salmon but with jasmine rice, and Beth had the pork tenderloin. (Charlotte had a hot dog: fine cuisine, indeed!) Dessert was a cream cheese-chocolate torte that was DIVINE. During the lunch, all of the other princesses (Snow White, Jasmine, Aurora, and Belle) came around to each table and talked, took pictures, and signed autographs, We also had a fabulous view of Fantasyland from our table. All of the princesses gave Charlotte smooches, leaving their lipstick imprints on her cheeks. By the end of lunch, she was covered in kisses!

After lunch, we made it downstairs but Charlotte was asleep after less than 20 minutes in the stroller. We decided to walk a little bit (if for no other reason than to burn off some calories). Roger and I took the opportunity to ride Thunder Mountain and then we headed back to the entrance. We did get to see a little bit of the parade. We headed back to GKTW and Charlotte just woke up about 7 PM.

I can't even begin to express what a great day this has been. It's so nice to be able to enjoy the park with Charlotte and see the joy on her face when she meets the characters. Another nice thing is that since Roger and I have "done Disney" many times before, neither one of us feels the need to see every aspect of every park. We're just kind of taking it at HER pace. Tomorrow will be another day at the Magic Kingdom and my cousin Sarah and her husband and daughter plan to join us.

I apologize that there are no pictures to post (yet) but I promise that there will be some coming. Beth took over 300 (!!) pics of us today and I've already seen a few that are great. We will be posting pics and video soon although much of it I'm sure will not get downloaded until the end of our trip.

Thanks to everyone continuing to keep up with our story. We promise to post when we can but if we don't, it's just cause we're having too much fun!

Rachel

More of the Same?

There isn't a whole lot of news to report but I suppose an update of some type is in order.

Charlotte spends her days eating, reading, watching tv/movies, and sleeping. Roger and I have been puttering around getting things ready for our upcoming trip, doing Foundation "stuff", staying on top of activities at RNR....sometimes I wonder where the time goes. It's very nice to just snuggle up with her and watch movies sometimes.

On Monday, we journeyed out in the rain for story time at the Ashland Library. We saw a few friends and it was good to get out of the house. Later, I met with our social worker from Noah's Children and then went to RNR to catch up on some work. Charlotte's Devon came by to spend the day and she had a great visit. They read books, Charlotte ate, and they watched a few shows together. Good bonding time.

Tuesday we had a nurse visit from Noah's Children and then ran some more errands to get out of the house. One ominous errand was to go by the doctor's office and get Charlotte's DNR (do not resusciatate) order signed by the physician. It seems very strange to have something like that in our posession. I just look at it and it makes everything very REAL.

Lunch was at Chick-fil-A (of COURSE!) and Charlotte ate well. She eats slowly but well. Sometimes it's very difficult to be in a place with so many other children because you immediately see the differences between her abilities and those of typical children. It's still a shock to me to see kids much younger than her who are able to manipulate stairs, climb the playground equipment, and feed themselves. It kind of slaps me back into reality. Yesterday it made me really sad. After our day out, we returned to the house and Charlotte and I watched the Tinkerbell movie (the new sequel, actually) to rest.

Last night, Roger and I had a much-needed date night. We went out with some friends to Emilios Tapas out in the Short Pump area. It was a small group and Roger was the only guy. (poor thing!) We had a good time eating, drinking Sangria, talking, and generally enjoying one another's company. It was a great escape and much thanks to Jan Light and her friend Anne for coming over to hang out with Charlotte. I think they had a great time with our girl as well.

This morning we are off to Children's Hospital to get a new stroller and (hopefully) a walker that may help Charlotte get around a little more independently. Her balance is WAY off right now and she can't walk well without holding one of our hands. We don't have huge plans for Thanksgiving but we've got a LOT coming up in the next week so it will give us some time to get ready.

Gotta go take a shower and face the day.

Up and Down

It's been an up and down day for me emotionally. It hits me at the strangest times.  I'm ok for a while and then BAM!

Disney Live was FANTASTIC.  Charlotte dressed up as Ariel/The Little Mermaid.  She got her picture taken with Wyatt and the Mickey/Minnie cutouts.  I guess it's like their Senior Prom pics.  :-)
The kids had a great time and even the grown ups did too. 

From there, we scooted home and made a quick turnaround to head up to Fredericksburg.  Our friend (and UM Alum) Jan drove so we didn't have to.  The church service was very nice.  Quiet, contemplative, and simple.  (Compline always is).  Doug played the piano in his jazzy style (as usual) and the reception afterwards was great.  The church was decorated with pink and purple balloons.  Rev. Kent wore his purple vestments, and most everyone who came wore pink and/or purple. 

There were many "old friends" in attendance and it was very nice to see both Trinity family and some former co-workers from Stafford County.  Charlotte held up through the entire thing, eating cookies and letting folks read to her and talk to her in the fellowship hall.

We got home.  Charlotte had a little nap in the car and now she is reading (surprise??).  I'm just relaxing and Roger is up at his UVJQ gig. 

It's been a good day.  Thanks again to the volunteers at Trinity who made this event possible and especially to Kent for helping to bring it all together.

 

- Rachel

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

New Day, New Experiences

I think we're at the place in our "mourning" that usually happens the week or so after someone passes.  We're mostly very peaceful with it and then all of a sudden, out of nowhere, WHAM! We get blindsided by the realization of everything that's happening.

Happened to me driving back from DC yesterday.  Rachel got it last night.  Nothing to be done except try to be there for each other.

The DC trip was great!  Uptown rehearsal was theraputic and I think we should sound pretty good on Saturday. (Come up to the Bethesda Theater to check us out if you're in the neighborhood)

Yesterday we got up really early and headed up north to the National Zoological Park (more official name).  We got there about 7:30 and Randall was waiting.  He took us over to the Panda House to meet Enika, the NZP PR person, and the panda keeper Nichole (sp?).  She let Charlotte hold a little tuft of panda hair and we got set up in our safe and still VERY close-to-the-cages spots.  There was this small, mini-maze of cages the pandas can travel to get from one enclosure to another depending on where the handlers want them to go.  When Nichole pushed a button on the wall, we heard a door open somewhere around the corner and in just a moment, Tai Shan came aound the corner to the cage where we were sitting.

Tai Shan was born the same day as CJ but at 175lbs (did I get that right) and with really big teeth and claws, I don't think they would be able to share clothes.

Charlotte was pretty amazed at first and then just wanted to eat.  Seems both of them did, so Rachel got pics of Nichole shovelling apple pieces into Tai Shan's mouth and me shoveling Fruit Loops into Charlotte's. Those shots were taken with CJ and I standing foot from the cage.  I think I was more excited than CJ (which happens a lot these days).

After a little while, I think it was when the food ran out, Tai Shan decided he was done with us and headed back into his enclosure.  It was pretty amazing to be hanging out so close to such a rare (and famous) animal.

After we left the panda house, we wandered around the park a bit because it was still early and nothing was officially open.  We saw the Asian (not Indian as I was dutifully corrected), elephants, zebra, and a spectacled bear.  We also saw some of those Przewalski's horses from Malaysia which is both cool and disturbing because they are extinct in the wild.

Then we got cold and went to Starbucks until the animal houses opened up.  Nothing like a Hazlenut Latte to shake off the chill.

There weren't many people there (being a cool, weekday morning) so we didn't have any problem getting into and around exhibits.

We headed out at around 11:00 feeling that we had had a pretty remarkable experience.  And we weren't done yet (I feel like the TV infomercial guy saying, "But wait!  THERE'S MORE!!!")

We came home and chilled out until the Wings Of Hope folks came by with a couple of horses for Charlotte to ride. She got on Wings (the little horse) by herself first, being held on both sides by us, and then they saddled up Razin ( a full sized horse) and she got on with me.  Both times we walked most of the way down street and then came back.  Lots of pics were taken so we'll get some posted as soon as we can. Thanks to Fred Horn and anyone else responsible for organizing that.

Last night we had food delivered from Ruby Tuesdays.  Thanks to Kim Chestnut and the Richmond Moms for coordinating that.  Mighty yummy!  CJ, of course, settled for mac & cheese and peas. Kim also sent raw chcoloate chip cookie dough and a bottle of Purple Cowboy wine (some kind of inside joke between her and Rachel).

To close out the evening, Rachel chose the movie for the evening and out came "Matilda." CJ watched the whole thing and seemed to like it.  We decided, Matilda is CJ especially in that she LOVES books.

Inspired, I am taking the princess to the Ashland library today.  Feel free to come meet us there.

Tonight is the big Thanksgiving dinner at Randolph-Macon College.  We'll be sitting with the field hockey team.  It's so highly anticipated by the students that they chose it over letting us buy them dinner at Chili's.  CJ is looking forward to hanging with Walker and the girls.

Tomorrow is the first big meeting of the steering committee for CJ's Thumbs Up Foundation.  We're very excited.  As we were driving down from DC, I turned to Rachel and asked if she wanted me to draw up the agenda or needed me to help with it.  She informed me she had already done it!  Why am I NOT surprised?

One final reminder: Beth Boston is holding her "Just a Little Something" craft sale at her home from 10 am-8 pm TODAY.  She is offering lots of inexpensive crafts, cards, and gifts that she made that make great holiday (or anytime) gifts.  Profits from all snowman-related merchandise will be donated to Charlotte.  Please come out and support her if you are in the Richmond area.  Her address is 9423 Charters Gate Dr., Mechanicsville (in the Kings Charter neighborhood).  THANKS!

Off to find The Wind In The Willows!

- Roger (Charlotte's Dad)

Make-A-Wish for Charlotte

YAY!!!!!

Just got off the phone with the Exec. Director of Richmond Make-A-Wish and they are going to make our wish happen (the way we want it to). 

We will be flying to Orlando/Disney on December 1st.  We will stay at Give Kids the World (at Disney) and tour the parks until about the 7th.  Then we will head over to the Daytona Beach area and will stay with my family until about the 14th/15th.  Make a Wish will get back to me soon with final details on flight times, etc. 

Our current plan is to spend the first week at the parks.  Many of you have asked: if you are a Floridian and have Disney passes or want to join us somehow, you are welcome.  We will try to solidify our itinerary (which parks on which days, etc.) closer to the time.  All subject to change, of course, depending on the Princess's wishes.  The second week will mainly be in Daytona.  Itinerary to follow...

We have also had many volunteers for "paparazzi" to follow us and document the trip with photos.  Beth (our Mary Poppins photog) is planning to come for the first part of the trip and we should know soon when she will need to leave.  I may call on a few of you other volunteers to help us fill out the experience. 

Our airfare, rental car, lodging, and much of our food, etc. is COVERED.  Between individual donations and the Make A Wish funding, we should be set.  I am so excited! 

Disney, here we come!

-Rachel (Charlotte's Mom)

She Did it Again.

Wow!  What a day!  Where to start?

Our trip up to DC was leisurely.  Thanks to an early morning meeting, we missed the rush hour traffic and the journey into downtown DC was a dream.  Charlotte read book after book in the car.  We thought for a bit that she might settle down and take a nap but no dice...

I love driving into DC.  For the longest time, you drive North on I-95 and you could be anywhere.  It's just typical suburbs.  Then you hit the Pentagon and the Washington Monument and the huge expanse of the Potomac River and you feel the spirit of our Nation's Capital.  I felt the spirit of my parents kicking in as I tried to get Charlotte to pay attention to all of it: "Look, Charlotte, that's the Washington Monument! Look at the Jefferson Memorial".  And Charlotte says: "Can you PLEASE read me another book????"  Ha!

Thanks to our fabulous connections, we got to park at the Natural History Museum and met our host, Randall, inside the Rotunda.  I never stop my continual amazement at the Smithsonian Museums.  What treasures! Randall greeted us with a care package full of Smithsonian "Swag" including a Mammal picture book for Charlotte.  We decided to grab some lunch before seeing the rest of the museum, but before we could do that...

She did it again.

Charlotte just has this way of capturing people and pulling them in.  Some of you have commented on it as well and Roger has mentioned it a few times.  I don't know what it is.  It's not just the cancer diagnosis either.  I fondly remember those first days after she was born.  All of the nurses in labor and delivery just couldn't stop talking about how beautiful she was.  She truly was.  Most newborns are, quite frankly, pretty ugly.  They're little wrinkled beings that look more like aliens or little old men than adorable babies.  Not Charlotte.  She had this gorgeously round head (amazing for a natural birth), clean complexion, and beautiful face that just drew you in from the very beginning.  Yes, I'm her mom but that is a FACT! As she grew and we took her places, the same thing would happen.  She just seemed to pull people in.  She had this natural ability to attract positive attention.  Must be the eyes...

Anyway, as we stood there talking to Randall in the crowded Rotunda, a woman came over and saw Charlotte sitting in the jogging stroller.  She had a hat on so you couldn't really see the scars or the bald head, but I'm sure she could tell something was not quite normal.  Out of the corner of my eye, I saw her just staring at Charlotte.  Then she came up to Roger and asked how old she was.  Roger told her.  Then she bent down and started talking to Charlotte, asking her a few questions.  Finally, she turned to Roger and inquired a little more about her.  What was going on? Was there something wrong with her?  She didn't ask in a mean or condescending way.  She was just genuinely curious.  Roger shared that she had a brain tumor.  The woman asked if she was getting treatment and Roger very calmly and matter of factly said, "Not anymore."  The woman asked, "What do you mean by not anymore?"  and he shared that we were out of treatment options and that she had terminal cancer.  Well, the woman just broke down crying and was visibly upset.  She had this purple and blue beaded bracelet in her hand that seemed recently purchased (it still had a price tag on it) and she asked us if she could give it to her because "it matched her outfit".  We said yes and thanked her. 

That is the effect Charlotte has on people.  Yeah, the cancer diagnosis pretty much intensifies it exponentially.  I don't know any kid in Charlotte's situation who couldn't probably invoke a gallon or two of tears.  But it's still interesting to watch people's reactions.  I think Roger and I have reached this certain level of immunity to the whole situation.  It's not that we are apathetic (we most certainly are not) or robotic about the whole thing but we are fortunate in that we are with her EVERY DAY.  Almost 24/7.  We have had plenty of time to get used to what this cancer is doing to her and we get the benefit of sharing this time with her.  I know that it is sometimes more difficult for those who are more distant or who only see Charlotte on an occasional basis.  Our grief comes and goes in waves but I think it hits others like a tsunami when they are face to face with her.  We often find ourselves in the position of comforting others rather than needing the comfort ourselves.  Strange. But I think we also draw some power from that opportunity. 

So anyway, I digress.  Where was I?

After our event in the Rotunda, we headed to lunch where Charlotte downed pickles, mac n cheese, and a hot dog.  She then graced us with a huge POOP (yay).  That was our cue to finish lunch and begin our exploration of the museum.  We parted ways with Randall so he could go to a few meetings.  Then we headed to the carousel out on the mall.  Charlotte really enjoyed riding on the horse there.  We tried to get pictures but that was one of the fastest carousels I've ever seen!  We also walked around the mall for a bit and ventured into one of the sculpture gardens. 

On the way back into the museum, we spotted a street musician playing a rather interesting instrument. It looked like an inverted steel drum that fit into the player's lap.  The music was melodic, rhythmic, extremely minimalistic, and absolutely mesmerizing to Charlotte.  She was really grooving.  We asked the musician about it and he said it was a Hang (pronounced HONG) and it was from Switzerland.  If you want to see more, you can go HERE for the Wikipedia reference.  Anyway, we initially just wanted to drop a few bucks in his music case but then noticed that he had a CD so we bought one.  It's very relaxing music so maybe that will help with the sleep a bit!

When we went back inside the museum, we checked out the main sections including the dinosaurs, ocean life, and mammal areas.  Just as we were reaching the rocks and gemstones, Charlotte fell asleep.  Of course, this was just minutes before we were scheduled to meet Randall again for our appointment at the Butterfly exhibit.  Sigh.  We woke her up as we tried to go in with the hopes that she would perk up for the butterflies.  She did wake up a little but she REALLY perked up after leaving the humid/hot butterfly area and re-entering the cooler part of the museum.  From there, we were able to get a backstage look at some of the bugs.  We got to touch and get up close to a tomato worm, a millipede, and a HUGE Malaysian walking stick.  That was a neat experience and our "bug expert" (Nick) was very knowledgable.

From there, we left the museum.  We headed out of DC and were very grateful that we could use the HOV lanes.  We checked into our hotel down in Woodbridge (near Roger's rehearsal site) and then went to dinner at Macaroni Grill.  Yum!  Thanks to a wonderful gift card, we didn't pay a thing for dinner but we sure ate a bunch!

Now CJ and I are resting at the hotel while Roger rehearses for Uptown's next gig on Saturday. CJ's watching Dora and I'm...well...catching up on everything. 

Tomorrow is Panda day at the zoo and it should be nothing short of amazing.   

That's the update.  That's the news.

Thanks for all the messages left on CB and via email today.  We are so excited about all the positive buzz regarding the read-a-thon.  I guarantee it will happen and we will even find a way for those far away to participate.  Remember, we DO have Skype and a webcam.  Audio recordings and YouTube videos will be welcome as well.

Love to all,
Rachel (Charlotte's Mom)

Just wanted to echo a few of Roger's thoughts in my own post (if you haven't read his previous entry, read that first).

Yesterday eased my mind in many ways.  I was very relieved to find out that for the most part, we should expect the progression of Charlotte's disease to be relatively easy.  I definitely like the idea that she will gradually start sleeping more and more and eventually will just not wake up.  As Roger said, that's the way to go, right?

I am not really looking forward to some of the actions and discussions that will follow, but to paraphrase Miss Scarlett, that is a conversation for another day.

For now, our lives are so busy with activities and engagements.  Sometimes it's hard to keep up.  Our network is keeping us well fed, well entertained, and making us feel loved.  Thanks to all of you who send notes (sometimes with cookies or brownies attached), help us set up activities, or just support us in so many small but meaningful ways. 

It is both bizarre and relieving to have no more clinic appointments.  It was very odd to have the conversation that we did with her medical team yesterday.  For me, it was almost an out of body experience.  Everyone on her team is so competent and dedicated.  Drs. Khan and Tye were holding back tears (a few slipped out) throughout the meeting and I was touched by everyone's commitment to our daughter. 

Right now it seems our biggest issue is sleep.  The problem is two-fold: First of all, Charlotte's sleep patterns are wacky and she seems to be waking up at odd times.  It's hard to tell if her wakefulness is tumor related, medication related, or just weird sleep patterns.  Secondly, both Roger and I are struggling with getting good rest.  Part of it revolves around getting up with her but the other part is that evening anxiety that just seems to settle in.  You get to bed (or try to go to sleep) and your mind just wanders.  It's a dangerous thing.  That's probably the time when I am saddest.  It makes it hard to settle down. 

I don't have much more to say right now so I'll close and try to move on with the day.  Coffee, anyone?

- Rachel (Charlotte's Mom)

A Very Long Post

First off: On Saturday there are two things happening which involve members of the Reynolds family.  I'm (Roger) singing with the Uptown Vocal Jazz Quartet on Saturday in Bethesda, MD. I'll include part of the email sent out to our fan list.

The other is a prayer service at Trinity Episcopal Church in Fredericksburg, VA starting at 5pm.  Rachel and Charlotte will be there.

The double booking is my fault.

Here's the email that went out:

"Just a friendly reminder to come on out to the historic Theatre in downtown Bethesda this Saturday and catch Uptown Vocal Jazz Quartet in a live show. We’d love to see you there, and even if you can’t make it, please spread the word to your music-loving friends!

Saturday Nov. 21
7:30 PM (one show)
Bethesda Theatre,  Performing Arts Center Boro Stage
7719 Wisconsin Ave., Bethesda, MD
Tickets available at the door ($25) or in advance via InstantSeats ($20)

Today we met with the entire MCV team including Dr.s Tye, Kahn, Massey, and Nurse Joann, Nurse April, and the Nurse Practitioner Debbie Shockey.  The purpose was to go over our options and for them to answer our questions about what to expect during the next few weeks.

The main thing is that they really can't say exactly what will happen or when.  They're just going on what they've seen before.  Everyone's different. Dr. Tye did reiterate that without the shunt, she certainly wouldn't have seen Christmas and might not even have made it to Thanksgiving so thanks to the shunt, as we like to say a lot, every day is a bonus; especially now.  Also, thanks to Dr. Tye and the shunt, we all agreed that there's no reason to think the Disney World trip won't be amazing for everyone.

They have discussed our situation with a neurosurgeon friend/colleague in Orlando and the hospital down there has been made aware of CJ's condition in case we should have a complication of some kind.

We went over whether or not CJ's immune system will recover since she is no longer receiving chemo (maybe), whether she will need any special medications or a respirator at any time (yes, to keep any seizures controlled and no, as it will probably not be necessary.  If she is ever in breathing distress, we'll give her oxygen) We will not be taking any heroic measures when the time comes.

For the most part, we're planning to keep Charlotte at home.  Critical Care will be available to us as well as something called Noah's Children and everyone on the team told us we're welcome to call them any time and even to request a home visit if necessary.  They all love her too.  We also still have the option of bringing her into the hospital at any time if it seems too much for us to handle.

As a concerned parent of a child with a terminal diagnosis, I wasn’t completely ready to give up and I spent a large amount of time researching alternative therapies.  I found a few interesting possibilities and dug into one in particular.  It is all about high dose ascorbic acid (vitamin C) treatments.  There are a few papers about it online and I was intrigued.  I forwarded several links to Dr.s Tye, Kahn, and Wolff and told them to tell me why we wouldn’t try this.  I sort of answered my own question when I found a site that reported another study on the dangers of high dose intravenous ascorbic acid (IAA).  Dr. Kahn confirmed it during the meeting.  The main problem is that the side effects are pretty bad and the track record of IAA is spotty at best and I refuse to put Charlotte through any more of that.

We will be getting her stitches out on Friday morning and occasional shunt checkups but other than that, barring any complications, that should be just about all for the hospital trips.  If she has another seizure, they would still like us to bring her in for a scan to make sure it isn't the shunt getting clogged (which is very possible)

As expected, it was a difficult meeting but one thing that Dr. Kahn said was extremely heartening.  With these kinds of tumors, there is very little, if any, pain. That is absolutely the most important thing for Rachel and me and gave us an extra layer of comfort.  We probably won't need much in the way of pain meds.  Of course, if she is in any pain at all, we'll be ready.

As her condition progresses, we'll probably see a slow but steady decline including a slowdown in eating and drinking and sleeping more and more until one day she might sleep for maybe 24-48 hours and pass in her sleep (isn’t that what most of us say we want?).  Who knows when that will be?

As we said before, it’s so incredibly sad that our perfect little princess will be leaving us so soon but at the same time, Rachel and I have found a certain amount of peace about it all.  We have had the incredible opportunity to spend a great deal of quality time with Charlotte and know that she is still enjoying life.  She is not the Charlotte of a year or even a month ago but she is still breathtakingly beautiful and continues to amaze us with her strength. She laughs when we tickle her, she remembers stuff from when she was two, she still sings to herself (which is one of my favorite things about her) It’s so amazing that we KNOW what’s going to happen and we’ve been able to start saying a long, experience filled, love/hugs/kisses laced goodbye.  We’ve been able to move through a large chunk of our grief (anger, denial, most of the fear-that’s a big one, etc…) already and to know that we gave her the happiest time that we could in the small amount of time that we’ve had with her.

Not that everything’s all hunkey dory.

Last night I found myself losing sleep worrying about the fact that we don’t have very much video footage of her. “What will I have to remember her by?”  “How will I ever remember what she looks like?” “We should have taken more pictures of her!”  “YAHHHHHH!!!!!” My thoughts did that spiral thing that gets me sometimes.

Then we had a great day today.  Mommy got some great alone time and CJ and I got to go for a long walk.  We went to Randolph-Macon College and stopped off at the fountain (the Frank E. Brown Fountain Plaza).  She has always LOVED fountains and that fountain in particular. We went in to see Barclay in the bookstore where Charlotte got an R-MC lanyard, an apple, a Jakers (PBS cartoon) book, a severed tiger tail (leftover from the Hampton-Sydney game), and $85 from bracelet sales.  She always ends up with stuff!

After that, we went back to the fountain and I started thinking (“A dangerous pastime.” “I know.”).  I really dislike the concept of donating money for the purpose of getting something named after you or a company.  Happens all the time on college campuses and I think even the toilet paper dispensers at the Houston Ronald McDonald House are named after someone.  Seems like an attempt at artificial immortality.  At the same time, I’d like Charlotte to have a cool “thing” so that people could think about her fondly. So, I thought to myself, why not a tradition?  Think we could talk someone into installing pink and purple lights somewhere during the month of July so that we could stand around, eat chocolate, and sing Frosty The Snowman?  Just a thought.

Next we went to the RR tracks to watch a couple of trains go by and CJ said she was really, really hungry.  We were on the path to go right by some pretty tasty eats so we popped into Homemades By Suzanne.  Yummy place.  Charlotte saw the fruit salad and wanted grapes.  But ONLY grapes so we couldn’t get the fruit salad there.

So we went across the street to Cross Bros. Grocery to look for some grapes.  If you don’t know about Cross Bros., it’s been around for 97+ years and I think the original bookkeeper is still in the back somewhere.  It’s the kind of place that still hand-prices items, has signs in the windows painted with tempera advertising pork loin, and will do your shopping for you and even deliver.  (Needs to be a CBS Sunday Morning segment done on it)  Anyway, we bought some grapes and a fire-starting log for $.79 and Charlotte dug in (to the grapes, not the log).

After we left Cross Bros., we started to pass the store formerly known as the Club Car (ice cream place that closed down).  I noticed it has reopened as a place called “The Station Café” so I popped my head in to see what was up.  Actually, I was attracted by the sound of children making joyful noises. Being pleasantly surprised by what I saw, I brought Charlotte in and ordered her a hotdog (not hard to do since it’s the only food they serve right now along with coffee and ice cream). The place actually isn’t all that kid-friendly but the atmosphere is very enjoyable with comfy chairs and loveseats.  Bartlett, one of the infamous “Naked Men Of Ashland,” now owns it and was running his tail off.  The hotdog was large and seemed pretty tasty to CJ (I’m not much of a hotdog guy).  She ate the whole dog and most of the bun.

So we did our part to stimulate the economy of Ashland today.

After the Station Café, we went over to the library fountain and I amazed CJ by moving the big globe around on the water.  I also found the brick Rachel and I bought to help fund the plaza and had imprinted with Charlotte’s name (what was that I said about putting names on stuff?!?)  It was actually kind of cool to point it out to Charlotte and tell her, “This is YOUR brick!” Takes on a bit more meaning now.

We met people we know, or who at least know Charlotte, along the way and it was interesting to observe how some people completely avoid talking about IT and some have no qualms at all.  None of it’s right or wrong and everyone is in a different place so I don’t necessarily judge people for it.  It’s just interesting.  For the record, I usually don’t have a problem talking to people about CJ’s journey.  Sometimes I just want to crawl into a hole but not often.  Not today.

Then we walked home.  The weather got progressively more and more beautiful and by the time I turned the corner into Slash Ct., I was actually in a good mood.  My anxiety from the night before was gone because I’m pretty sure that the many, many awesome days like today that I’ve been able to spend with Charlotte will stick with me the rest of my life and the pictures and videos I have of her will do.

The meeting was after that and things got darker.

On the way back, we stopped off for dinner at, where else, Chick-fil-a (CJ’s request). She ate pretty well again and we came home.

We read some books, watched Charlotte’s Web (CJ’s request), changed her dressing, and finally got her to bed.

I’m definitely going to miss her and when she finally passes, that will be the most awful day of my life, I guarantee it, but that’s me being selfish and she’ll be free.

We’re all about coping mechanisms here and I had an idea about one:  After we get back from Disney World, we’d like to do something to keep the energy as positive as possible and directed at Charlotte.  When it looks like things are nearing a junction, we’d like to have what I call a “reading vigil.” We’d like people to come by and read children’s books to her all day, no matter if she’s awake or not.  We’ll organize “shifts” and feed whoever comes by.  It’s her favorite thing in the world and I can’t think of a better way to send her off.

Also, for those with kids in our area, we think a special event at Romp n’ Roll VA Center might help them (and the parents) cope.  We’ll let the kids know what happened and then probably have a professional on hand to help anyone who needs it (all of us).

We’ll let everyone know when these things get scheduled.

Tomorrow we go up to DC to visit the butterflies at the Smithsonian, I have rehearsal with Uptown, we’re spending the night up there and then we get to visit with the Pandas Wednesday morning at the National Zoo all thanks to some bigwigs with big hearts.

Wednesday afternoon is another pony experience and then dinner brought to us.

Thanks for all the love.  We really feel it.

- Roger (Charlotte's Dad)

Whirlwind Weekend

Saturday was busy with lots of visits.  We went to see Charlotte's godparents (the Walkers) for brunch.  They live on the Richmond Marathon route.  In years past, Roger has been a runner in the marathon and I have always been sure to make a stop at their house.  They are at mile 22 so it's a pretty key point in the race.  The runners need lots of encouragement.

We got there just as the lead runner was coming through (just shy of 2 hours into the race).  He was the leader by a LOT!  After some breakfast, we did lots of visiting.  Roger and I took turns being inside and wandering outside to see the racers.  Roger said it was very bizarre to be on the sidelines and cheering folks on.  At one point, both Roger and I were out watching the crowd and I just happened to see Dr. Tye running down the road.  When I realized it, Roger and I both shouted hellos.  He saw us, came by, and gave us both a hug!  What a guy!  How he has time to train for a marathon with everything else going on, I will never know.  We immediately came in and told Charlotte who we had seen and she just beamed.

Then it was home for a bit and we were off to Wyatt and Heather's house.  Wyatt had not seen his "girlfriend" in months thanks to our journey to Texas, their own travel plans, illnesses, and other unforeseen events.  It was nice to have the two of them together.  They built gingerbread houses and then watched a movie together.  We got treated to yet another wonderful meal.

THEN it was off to Lake Anna.  We stayed at Bob and Meryl's cabin (also known as Shangri-Log) for the evening.  The goal, of course, was rest and relaxation.  Charlotte had an odd night, though.  I think she ate too much (she had been shoveling in the food) so when she went to bed, she said her tummy hurt.  She did sleep for a little while but Roger and I both got up with her multiple times as she was "muttering" in her sleep.  Then she was awake as early as 2 AM and didn't seem to want to go back to bed.  She also was not content to read by herself and wanted company.  So Roger and I took turns with this (but pretty miserably as we were both tired).  We did finally both get some rest and then it was morning and the coffee appeared (magically!)

We were treated to another wonderful breakfast and Charlotte downed bacon, eggs, and toast.  Then we hung around the cabin, taking in the beauty of the lake and the woods.

Around 2, we set off back towards Ashland, stopping at a horse barn where our friend Kelly had offered a ride on a very mellow horse.  The horse's name was May and she was beautiful.  Charlotte didn't want to ride for very long (she rode with daddy) but Roger got to spend a little time riding.  Then we got to feed the horses (they like peppermints!  Who knew?),  and then we got a tour of the barns and saw a few of the other horses. 

From there, we stopped at Romp n' Roll to take care of a few things, ran into Kolbey, and we all went to Casa Grande for dinner.  I guess this was our "anniversary dinner".  Yes, today is Roger's and my 12th wedding anniversary.  Kind of surreal given the circumstances but we are certainly celebrating the fact that our relationship is strong enough to withstand even this kind of stress.  I am appreciative of my "other half".  Anyway, I had a chimichanga  (shout-out to my bridesmaids...you know what I'm talkin' about!) :-) and Charlotte ate an entire quesadilla and some chips!

With all this eating, i am SURE I gained about 5 pounds just this weekend alone!  Yikes!  But it was all yummy. 

We are now home, taking care of laundry and catching up on emails.  Charlotte is asleep and Roger is watching football.  Whew!  What a weekend.

Tomorrow is a meeting with Drs. Tye, Massey, and Bitsko to discuss some further plans and try to get an idea of what is coming in the next few weeks.  Tuesday we have a trip to the National Zoo scheduled (DC!!) and there are some other small events on the horizon for the week.  I am hoping that we get the Make-A-Wish stuff resolved by tomorrow. 

I can't believe Thanksgiving is almost here. 

- Rachel (Charlotte's Mom)

An Overdue Update

Thursday was a good day.  We were going a bit stir crazy with all the rain so we headed out around noon.  First we hit Cracker Barrel for a yummy lunch.  Then it was off to some errands that included stopping by RNR (just in time for CJ to have a ROYAL poop!), Target, Ukrops, etc. We had a great Kohl's coupon so we engaged in a little retail therapy, getting some warm winter jammies for Roger and myself as well as a few other goodies. 

Then we went to see our good friend and chiropractor, Dr. Anna.  All three of us got "popped like popcorn" (as Charlotte likes to say).  Very important with all the stress we are dealing with. 

Then back home again. 

Charlotte had another relatively sleepless night.  Her brain just isn't letting her fall asleep.  We take her to bed at a reasonable/normal time but she just stays in bed reading books.  I think she fell asleep around 2 AM.  I did get some sleep but woke up wide awake around 1 or so.  Spent some time on the computer.  It's amazing some of the things you can learn on the internet.  I found out some interesting information about the function of the thalamus, including the fact that it regulates sleep.  It's really crazy to think about all those times when Charlotte was an infant and had such trouble sleeping that this tumor was growing there all along.  There's no way that we could have ever diagnosed it earlier and there are plenty of kids who have sleep issues who don't have brain tumors, but the more I think about it, the crazier it seems sometimes.  It certainly explains a lot. 

Charlotte continues to do relatively well.  She doesn't really want to do much more than read, watch tv/movies, and eat.  Pretty much all interest in her toys, coloring/art, other activities is gone.  I'm not sure if she is frustrated by her relative lack of motor skills or if her attention just isn't there.  Her speech is much slower and we have to give her lots of time to process things.  But her personality is still there.  She is still our Charlotte!

There are moments when I just want to take all the STUFF in our house (toys, games, etc.) and clear it out.  So much of it seems so useless these days.  It was nice the other night when some friends came over to play.  They actually made use of the toys that had been sitting in Charlotte's play area, gathering dust.  Anybody want to do some Christmas shopping at our house?  We've got some great, gently used toys!  We won't give up any books, though.  She uses those daily and never wears them out!

Today was another good day.  We got a relative break in the weather.  I got a bunch of RNR work done (paperwork, bills paid, etc.).  The Hayes family came over mid-afternoon for a short playdate and we all went for an early dinner at Pepicellis.  Good pizza!  It was a fun time and Charlotte ate 2 full pieces of cheese pizza!  We came home to watch more movies but I fell asleep on the couch.  Now Charlotte is back to reading and we are all heading to bed.

I think the best part of today was that it was the first day in over a week where I didn't completely break down emotionally at least once.  That's HUGE! 

I can't believe it has been a week since our devastating MRI news.  In a way, it seems more like a month.  Our calendar for the next few weeks is slowly filling with activities.  Tomorrow includes two visits/playdates and then we are headed up to a friend's house at Lake Anna for some RnR of our own.  We'll probably stay there Saturday night and Sunday. 

Monday will bring another doctor's visit with Dr. Tye and Dr. Massey to discuss next steps, including a palliative care plan for Charlotte.  We hope to get a better idea of what to expect in the next little while. 

More events next week as well. 

We got an interesting phone call today.  I think someone from Humana (our insurance company) called to check on Charlotte and when Roger told them what was going on, he received another call not long after from a counselor/patient advocate.  She was not a Humana employee but works for the company to assist families in situations like ours, making sure that we have access to any needed resources and helping us with the process, both logistically and emotionally.  Anyway, we shared with her Charlotte's story as well as the resources we are currently utilizing.  She asked about any fears or concerns we might have, said that it seems like we are on the right track and have access to very good resources (thanks to ASK and our fabulous medical team) but agreed to follow up with us in a week or so just to check in.  We also got her number in case we had any further questions for her. 

I really appreciated it.  As much as we like to complain about insurance companies (and I know I have done my share on this blog), Humana has a lot of resources like this available for their customers.  They also have an on-call nurse available for questions about medications and medical procedures.  I can imagine that if we didn't have access to our current resources and/or the knowledge and support system that we have right now, this service would be really valuable to us right now.  Her manner on the phone was very supportive and comforting.  She seemed to be very good at her job.  Nice to know that some of our premium goes to more than just paying out claims or filing denials...

I guess that's it for now.  Another busy day tomorrow.  I miss work.  I miss it a lot.  This is NOT a normal lifestyle for me.  That being said, I know that if I tried to go to Romp n' Roll and teach, I would probably be a mess and wouldn't be a very good instructor.  If you are part of our RNR family, please take the time to thank our employees (especially Annette, Samantha, Emily, Lauren, and Margie) as well as the crew at the West End and Midlothian stores who have been helping us keep it all together.  While you're at it, don't forget to register for your winter classes or birthday parties (wink, wink!). 

Have a good (dry) weekend, everyone....

Rachel (Charlotte's Mom)