Monday, November 30, 2009

So much to say...

So much to say! First of all, I have a feeling Roger is going to add his own two-cents regarding the last 24 hours or so. Just be ready for some double-postings.

Those of you who have been on Facebook, you've seen some of our pictures from the Baltimore trip. I will post a few here as well.

Sunday started EARLY. She woke up at 1:30 (AM!) and Roger got up with her. We tried to get it in gear for the Baltimore trip and I think we did ok considering our tired-ness. We made it to the Aquarium by 11 or so. It was amazing! There were so many different kinds of animals and lots of creatures to see. We also had lunch with a great view of the Harbor. I really enjoyed the jellyfish exhibit.

I need to detour on this post for a moment and just give a shout-out to the family who made this whole weekend possible. When I was growing up, we were close friends with the Hansen family. They owned a little mom n' pop motel (The Copacabana) on Daytona Beach and our families carpooled and did many activities together. I have fond memories of swimming at their hotel pool and playing with the girls (Summer and April). They were one of the stabilizing forces in my life after my dad passed away and we have always been grateful for their kindness.

Anyway, after high school graduation, I kind of lost touch with the girls but my mom has remained in contact with their mom (BJ). The motel has since been sold and the entire family is scattered far and wide across the country but we reconnected on Facebook right before Charlotte's diagnosis. Throughout this process, they have been one of the many "forces of good" helping us out. From across the miles, they have sent gift cards, meals, notes of encouragement, and (last but not least) set up this Baltimore adventure for us. Thanks to their connections, our tickets to the football game, hotel, and passes to the aquarium and other local attractions were all provided to us free of charge! It was amazing.

So back to the story...after the Aquarium, we headed over to the hotel. It was the Waterfront Marriott...right on the Harbor. We had a Hospitality Suite with full living room and kitchen on the 10th floor overlooking the Harbor. We also had a room with a King bed for us and another room with two beds for Devon and Patrick Mattys (our football guests!). I was only sad that we were able to enjoy the room for only a night.

We weren't there long when we met up with Devon and Patrick. Roger and Patrick headed off to the tailgating area and us "girls" followed along shortly.

After being up since 1:30 AM with only a light nap in the car, Charlotte finally petered out at about 5 PM...just in time for us to get to the stadium. That was ok because she slept until right before kickoff (almost 8:30). We all had a great time at the game. It was a PACKED stadium with crazy fans and lots of fun. Charlotte made it through the 3rd quarter and then we headed back to the hotel. Actually caught the last part of the game in our hotel room. When we got back to the room, we found a plate of cookies, milk, and a cute bear for CJ with a lovely note from the Marriott staff wishing us well. Very sweet!

Charlotte then stayed awake until 5 AM (!) with Roger and I taking turns with CJ duty. This morning we reversed the process and headed back to Richmond. We made it in 2.5 hours (not bad with just some traffic in N. VA and we stopped at Indulgence Salon in Ashland where Miss Heather and the rest of the staff spoiled us. First, they gave us a catered lunch along with some books and presents for the girl. There was a HUGE Frosty sign made by the kids at the Ashland Community Preschool with pink and purple handprints on it. Then, Charlotte got her nails and face painted while Roger and I got thirty minute massages and I got my hair washed and styled. It was a lovely day and the staff there were so generous and accomodating.

Then it was home (finally) where we have been making mad dashes to get all the last--minute stuff done before the trip. The limo will pick us up at 6:45 AM so I may not sleep much tonight but that's ok. I can wait till tomorrow to start vacation mode.

A few final notes before I sign off: 

1. The website is MOVING right along. It is going to be so great when it is done and I think it will be ready to launch before we get back from Florida. It will include a way to schedule our reading vigil for CJ so look for more info on that soon.

2. The Mechanicsville Moms are hosting a Used Book Sale for Charlotte at Romp n' Roll (Virginia Center) on December 10th from 3-7 PM. Please stop by to support these ladies.
3. Finally, Beth Boston held the craft sale a few weeks ago with all profits from Snowman craft sales going to Charlotte. She raised a nice chunk of change for us but she still has some "snowman soup" packets. These are very creative, very cute hot cocoa packets that make great gifts for teachers, friends, and family. Cute stocking stuffers! They are $2.50 for regular packs and $3 for sugar-free. These are local (Richmond area) sales only but if you are interested, please email her at

Ok! I'll stop it now...I mean it! (Anybody want a peanut?)

HUGS, Rachel

Saturday, November 28, 2009

Good to not so good

It started out as a very cool day and has devolved into darkness.

Our neighbors down the street, led by their soon to be son-in-law, arranged for Sgt. Santa to make a very special stop at our house this morning. It was so awesome! A pink and purple tree appeared on our front lawn along with a pile of presents for Charlotte. Sgt. Santa came by around 9:45 and we sat CJ in her new stroller while he stood with her and we brought her several of the presents to open. She got things like a princess fleece wrap (like a Snuggie), lots of Princess dolls of all kinds, and, of course, books and chocolate. Even Mommy and Daddy got stockings.

It was chilly out and I didn't want her exposed to the wind too long so we adjourned things outside and moved into the house. Rachel even manhandled the tree indoors since the wind was trying its best to knock it over. It's now in our front hallway filling it up and blocking the way. We don't care. It's cool!

The rest of the unopened presents filled up the front living room (what I call the "library") and we've been opening them, slowly but surely, all afternoon (between eating sessions, of course).

The gifts have come from all over the east coast and the generosity is truely amazing. There were even some checks in the mix guaranteeing a wonderful time in Disney World; however, as we've unwrapped them, we've been faced with some stark truths. Most everything she has been given, CJ will never use. One gift is a wonderful fairy treehouse set with everything one could want for playing this sort of role-playing game. She'll never play with it. There were several dolls with clothes and other "accessories" that are beyond her ability to manipulate. It made us rather sad.

We have noticed a marked decline in her motor skills today (especially in her right hand) and she even told us that it was hard for her to pick up her "square macaroni."

I don't think this Disney trip is coming a moment too soon. If she makes it to New Years I'll be very surprised.

Most of the time, I'm relatively together but today has been very hard. I sometimes feel so sad and even as I write this I'm having trouble keeping it together. I feel I'm being very selfish. It doesn't help when I see the videos being imported into the computer. I see how verbal she was and how easily she communicated with us, especially in the sweet voice everyone always talks about. I keep looking for reasons that aren't there and my rationalizations start to crumble. My only hopes, as they have been for some time now, are that Disney is magical for her and that the end is swift, peaceful, and painless. After Disney, I don't know.

We are past the point of needing most advice. We don't need any more gifts unless it's books or donations to her fund. What we CAN use is the main thing you've been giving us all this time, the knowledge that you're there, thinking about us and wishing us the best Disney trip ever. "There are no words" keeps popping up and you're right. There are none. Even if you've been through something like this before, nothing helps. We just have to slog through it day by day knowing you all are out there, sending us good thoughts, wishing you could do more and that every day with her is still a bonus.

Tomorrow we go up to Baltimore and the Ravens/Steelers game. Charlotte's Devon is meeting up with us there. We have VIP passes to everything downtown so we're gonna whoop it up until CJ poops out. By the way, THAT'S not a problem lately. Just in case you're keeping tabs.

Charlotte is already asleep and Rachel and I are going to watch "UP" with the commentary on.

Another "by the way," I can't believe we're about to go over 200,000 hits on Caringbridge. I might have mentioned it before and it may seem strange but I pull solace from that.

Thank you all for everything.

Thursday, November 26, 2009


It was not the best Thanksgiving on record but I can't complain too much.

First, let me back up to yesterday: we got Charlotte fitted for a larger stroller so we are now set for Disney and all our travels. In addition, all our travel documents and Make-A-Wish stuff arrived in the mail on Wednesday. We will have a limo picking us up at 6:45 AM on next Tuesday to whisk us off to the airport. We are already getting a tentative itinerary together for the friends and family who want to meet up with us while we are in Florida. I'm finally getting excited about the trip.

After Charlotte was fitted for the stroller, we actually managed to stop by Three Oaks Montessori to visit some of her friends. We needed to come by to sign the incorporation papers for CJSTUF (thanks and kudos to Kim for pulling all of this together in little or no time!) so Charlotte got to spend a little time with some old buddies. She was welcomed very warmly by the girls who knew her from her old school.

Later, we had some more visitors at home. Anja and Meredith came over for a playdate and finished watching Mary Poppins with Charlotte. They also shared a LOT of strawberries. Yum. Soon afterwards, her old teacher Ms. Christy (from the "Montessori House") came by for a very nice visit. She brought tons of books for Charlotte to borrow and read as well as a bottle of wine to share with me and Roger. We had a lovely evening socializing and Charlotte got to spend some very quality time with Christy.

My emotions have been all over the place the last few days. Mostly I'm just sad and the smallest thing can make it worse. Right now it's very difficult for me to be around other kids sometimes. I guess that's a good reason not to be back at work right now. I'll also see stuff on TV or in other places that will just spark something and then I'm a basket case (darn those St. Jude's Childrens Hospital commericals!). It is so bizarre to me to think that last year at this time, I would see something like that and think, "Oh, what a good cause." and now all I can think is, "That's MY kid!" It is truly strange to be on the receiving end of charities such as those and then see commercials or hear plugs for them in the mass media. You realize how important they are. The first time I realized it was back in March or April. I was at Costco and they were doing a fund drive fro the Children's Miracle Network. They did the standard plug, asking for a $1 donation to benefit the Children's Miracle Network at MCV. I normally do these things anyway but it was then that I realized: this benefits MY kid! I heard a plug today during the Macy's Parade for Ronald McDonald Children's Charities as well and it brought back all kinds of memories.

When I think of these things, I am reminded of that which I am truly grateful. It is a bittersweet Thanksgiving and I am pretty sure my mood won't change much by the end of the year. You might think it would be difficult to find a lot to be thankful for right now. I am grateful, though, for friends, family, and the extended family that we have built this year. Our network is wide and strong and it is the foundation on which I rest day in and day out. Without this network, I would be a blubbering fool hiding under the bed. I am grateful for the time that I have with my precious girl and I am grateful for my sweet husband who tolerates me and all my quirks.

The bulk of the day was very relaxing. We watched the Macy's parade and then Roger, Charlotte, Kolbey, and I went to Cracker Barrel for dinner. It was simple, inexpensive, and nobody had to cook or clean up. Everyone was happy. We came home and the boys and Charlotte watched footbal while I caught up on some paperwork and computer stuff. Charlotte had another marathon eating day. She took lots of laps around the house (with our encouragement and help) and, of course, read quite a few books.

Tomorrow I am actually going to work for a little bit. I'm leading a birthday party so wish me luck! This should be interesting.

Roger is currently downloading a lot of our old video of Charlotte into the computer for editing. I can't tell you how mixed my emotions are when I watch these old clips of her. She was so tiny! And it was easy to see from such an early age how smart she much she just LOVED to learn. I think every other film clip has her reading or singing or jibber-jabbering in that sweet little voice. I'm glad that we have these memories.

Time for bed. Good luck to all you crazy shoppers out there! Take it easy.


Wednesday, November 25, 2009

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.

Monday, November 23, 2009


Charlotte was the epitome of a couch potato today. She was up early and ate and watched TV pretty much ALL DAY. The kid never seemed to get full. She ate a great variety of foods, including almost a whole carton of strawberries (thanks Meredith), some peas, cheerios, and macaroni and cheese ravioli (a new favorite). She watched a LOT of TV and every time we would try to divert her attention, it pretty much went back to TV. Oh well. We all have those days.

Roger went to emcee the Ashland Parade and then came home just in time for us to head out to Short Pump mall. Charlotte's Christmas Wish from the ASK folks was to do Build-A-Bear. We had never done it before. Ladies from an organization called TRI-girls (they train for triathalons) sponsored our family and paid for our experience as well as some other gifts that Santa will deliver personally soon for all of us (!!). They got the Build-a-Bear staff to stay open for us and allow us to have the store to ourselves as a way to both avoid germs and let CJ go at her own pace.

Well, she fell asleep on the way to Build-a-Bear so she was still rather sleepy when we went in. We had the gift certificates from ASK but we also had a few other gift certificates from previous gifts so the plan was to make 3 creatures: one for Charlotte, one for mommy, and one for daddy. We picked the creatures but she got to pick the outfits and we had Charlotte record her voice on a little chip that went into each of our personal creations.

Charlotte got a Frosty. We already had the scarf, broom, and boots thanks to another gift so we added a Harley Davidson leather jacket, HD shirt, and black jeans with hi-top sneakers (all her choice).

My creature was a fuzzy teddy bear and she chose a pink and purple fairy dress (with wings) and silver shoes.

Roger's creature was a monkey (since she's his monkey butt) with a Green Bay Packers jersey and helmet.

Ellen captured some great pictures as well.

She fell asleep midway through the process but the ladies at Build-a-Bear were so nice and accomodating. It was a great experience. Big thanks to Ellen Hart (an ASK volunteer who coordinated this for us and also took pictures tonight) and the TRI-girls.

We came home and I caught up on some emails. Charlotte's now awake (of course) and reading in bed with her Frosty. Roger's headed to bed too. Off to a busy week. I feel like I have a lot to do on the work and personal fronts before we leave town for two weeks! And a holiday weekend to boot!

Saturday, November 21, 2009

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. 


Friday, November 20, 2009

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)

Thursday, November 19, 2009

Make-A-Wish for Charlotte


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)

Tuesday, November 17, 2009

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)
da Theatre,  Performing Arts Center Boro Stage
7719 Wisconsin Ave., Bethesda, MD
Tickets available at the door ($25) or in advance via InstantSeat
s ($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)

Sunday, November 15, 2009

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 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)

Saturday, November 14, 2009

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)

Thursday, November 12, 2009

CJsTUF on FaceBook!

CJ's Thumbs Up Foundation fan page on Facebook is over 1000!  Fabulous!

Also, for those not on Facebook, here's a link to Beth's pictures of Mary Poppins yesterday.  Enjoy!

What A Long Strange Day It's Been...

First of all, it was a long night.  After a mid-afternoon nap, Charlotte was "not tired" at bedtime.  We had watched the new Tinkerbell movie AND Cars and took her up to bed but she wanted to read books.  We let her read with her big pile of books and Roger and I went to bed.  We just listened to her singing and reading.  She stayed awake till after 3 AM!  Roger and I would go to sleep and wake up every hour or so, taking turns checking on her, occasionally reading a book with her, and listening to her read. 

Needless to say, she slept in until about 10 AM.  She dressed in her Tinkerbell outfit today and we prepared for our visit from Mary Poppins.  Unfortunately, the shock of the morning came when I went to put Ms. Poppins' "note" on the door, opened the front door, and was SHOCKED to find our cat Punkin dead on the front porch.  Yes, you read that correctly.

We don't use our front porch very often and just hadn't noticed him there but Roger thinks based on his "state" that he had been there a few days.  It looks like he just crawled up there and died.  No trauma, no injury.  I yelped and Roger came and did the noble job of disposing of him.  We buried him in an old pillowcase in the back corner of the backyard.  SIGH.  He was only about 5 years old, I think.  We had taken him and Tigger in from our friend Holly a few years ago. 

Can we cut a break?  Seriously. 

Our visit from Mary Poppins was great, though.  It has all been chronicled by Beth Harris who came and took pictures for us.  A link to the pics will be posted soon.  We had tea, cookies, sweets, and Charlotte ate plenty of jelly (both with and without bread).

Other than that, we've been laying low with the dismal weather.  We have been lining up some visits and events for the next few weeks.

One event of note for our Fredericksburg friends: I spoke with Rev. Kent Rahm at Trinity Episcopal Church in Fredericksburg and he is helping to organize a prayer service for Charlotte next week.  This will be a service of Compline (an evening prayer service) at 5 PM on Saturday 11/21.  Trinity Church is on College Avenue, directly across from Mary Washington Univ.  Anyone in the Fredericksburg area is invited.  It will be a very informal prayer service with a simple reception to follow.  This was the church in which Charlotte was born and baptized so our Trinity family is still very special to us.  We haven't seen many of these folks in almost 2 years although I keep in touch with a select few via email, etc.  I am glad we were able to organize this.

In other news, our CJ'S Thumbs Up Foundation fan page on facebook will hit 1000 fans today!  Hooray.  The advisory council will be meeting next week to work on some orgnaizational steps toward incorporation, etc. so I am very happy this will happen.  It gives us a focus for our energy (as well as everyone else's energy).

It feels very strange to be out of our normal routine.  I am enjoying being at home with Charlotte and Roger but I definitely miss my old routine.  I miss the kids at RNR and I miss teaching.  I am struggling to find elements of normalcy in each day because that helps me manage the sadness.  It will be nice when the weather clears a bit.  That will help us get out a little more, I think.

I guess that's all for now. 

- Rachel (Charlotte's Mom)

Tuesday, November 10, 2009

Thank YOU!

At the risk of sounding like a broken record, I will say again: THANK YOU!  To all of you who are supporting us in so many ways.  Many have used the analogy of a large circle of support in which we can safely fall and I feel that we are there.  I am still sad.  Oh man, am I sad!  But I feel safe and secure and able to BE in my grief because I know you are all out there to catch me.  It helps a little.

Thank you for all the loving messages today.  Thank you for the visits.  Thank you for the food (more than enough and oh so yummy).  Thank you for the coffee.  Thank you for the hugs.  Thank you for the prayers.  We do not have many physical needs right now.  Just love and mental support. 

I am not sure what God's plan is in all this but I always believe and still believe that God has a plan for each of us.  Somehow, Charlotte's journey is touching SO many people.  It is amazing.  I still can't make sense of it all but I have faith that we will be guided by the Holy Spirit to be at peace and make the best of what comes our way.  That is my prayer.

Charlotte has been eating and resting all day.  The flow of doctors, nurses, and residents has been steady.  We have met with all specialties concerning her care and she is set for shunt surgery first thing tomorrow (probably between 7 and 8 AM).  The whole procedure, start to finish, should take about  2 hours.  Dr. Tye will be performing the surgery. 

I am on the "night shift" at MCV and Roger will be here in the morning as well.  I know Auntie Retta is planning to be here too. 

Charlotte's appetite has been great.  She is currently munching on chick-fil-a nuggets (can't get enough).  She's also had quite a few homemade gingerbread men (thanks, Eleanor!), mac and cheese, some chocolate croissant, applesauce, cheesburger, tater tots, and plenty of ketchup.  Gotta love the appetite inducing steroids!

She has watched a few movies today and slept for a good portion of the afternoon.  I haven't slept much but I will try (I promise) tonight.  As old veterans to the floor, we did our best to get one of the "good" parent beds (as opposed to the 2nd rate la-z-boy wannabes that fold up on you at the slightest movement).  That should help the effort, at least. 

I don't have much to say so I will close.  Hug your babies, count your blessings, and spread the love!


Sigma Alpha Iota Symphony

Thanks for all the words of kindness and inspiration. Roger's post yesterday was pretty powerful, I agree. Now it's my turn.

Another thing that has been wandering around in my head is the Sigma Alpha Iota Symphony.  A little background:

In college, Roger was in the men's music fraternity (phi mu alpha sinfonia) and I was in the women's music fraternity (sigma alpha iota).  And yes, it was a FRATERNITY.  Anyway, the social circles in which we ran basically created the opportunities that allowed Roger and I to become friends and, later, a couple.

SAI was a huge part of my college life.  Not only are my best friends from college also my sisters but my involvement in the organization allowed me to develop my leadership skills which, in turn, helped in my life beyond college.  Although my formal involvement with SAI has waned over the years, the concepts of our sisterhood stay with me.

A few days ago, I started replaying in my head our Sigma Alpha Iota Symphony.  This is a poem/credo that I think frames our values as an organization and as individuals.  One of the first things we learned as pledges was the SAI Symphony.  The elements of the poem have different interpretations to each member but I often liken it to a scripture.  It's an inspirational piece of wisdom by which you live your life.

Since it has been on my mind, I thought I would share it with all of you (and no, I am not breaking some vow that will put me on double-secret probation by sharing it.  This is kind of "public knowledge" fraternity stuff...).  Shout out to my Sigma Chi SAI's: "That's NOT the secret knock!!!"

Anyway, here it is...

The Sigma Alpha Iota Symphony

To study and practice the goodness of life, the beauty of art, the meaning of music.

To sing the song of sincerity and universal peace.

To speak the words that build, that bless, that comfort.

To play the harpstrings of loving kindness, tolerance, appreciation, and genuine gratitude.

To strive for the joy of simplicity, for the noble.  To be faithful over a few things.

To listen, to be still, and to know the harmony from within.

To falter never in seeking loving service, wisdom, and understanding.

In a word, to be loyal to Sigma Alpha Iota and her teachings; to find joy, hope, and inspiration; to remember that "every good gift and every perfect gift is from above" and "whatsoever ye do, do it heartily as to the Lord and not unto men."

And again to practice.

This is to be our Symphony.
-Rachel (Charlotte's Mom)

Monday, November 9, 2009

EPIC PART II (Kind Of...)

We are home from the hospital.  Charlotte is doing well.  She and Daddy are settling in on the couch in their Bronco outfits getting ready to watch Monday Night Footbal.  Below is Roger's post that he has been working on for the majority of the day.  Read on...

Not really Epic Part II but still long.

“Everything is on its way to somewhere else.”

Here we are looking at the probability of going home soon.  CJ woke up about 5:30 and the moment she saw me, she reached out and wanted to kiss my nose!

She's doing very well this morning, eating well and all that.  The only side effects of the surgery so far are an eye that pulls inward a little and a very stiff neck.  Neuro has already been up to see her and they say the eye thing is most probably a little swelling or maybe a nerve got "touched" during surgery.  She moves it well all around so the Doc wasn't too concerned and they'll be back to check up on her later.

The stiff neck was expected.  I've done my poor man's physical therapy on her head and left hand a little to try and help.  She doesn't necessarily like it but she tolerates me interrupting her Mary Poppins or Curious George or whatever she's watching at the moment.

They sent up her dose of steroid and it tasted awful (I checked).  So I didn't make her take it.  We have some good tasting stuff at home that we had brought down because one doctor said we could but the pharmacy refused to let us give it to her (I mean, what's it going to do to her?).  I appealed to them again and they finally agreed to let us give her ours.  Rachel had to turn around and go back home to get it but I think it's worth it to A) get it in her to help with the healing of the surgery, and B) not turn her taking it into a crisis situation. So everything is cool at the moment.

Miss Heather, Wyatt's mom, is bringing CJ a milkshake-shake this morning.  She got to talk to Wyatt on the phone for a bit this morning which was really nice.  He's certainly talking a lot these days.

Now for some heavier stuff...

As things progress, I think it's typical for people to fall into despair.  This is a horrible situation and both Rachel and I have cried more than we thought possible.  Personally, I have only "broken down" a couple times since we got the news on Friday but there seems to be a constant drip from the eyes like a faucet that can't be completely shut off and my heart constantly aches.  I know our friends and family are feeling awful as well.

But, and this is very important to me, as sad as this situation is, we can't despair. My spirituality runs slightly different than most but it's still very deep.  I am thoroughly convinced that things happen for a reason.  There has to be something holding the universe together; otherwise, according to chaos theory and quantum physics, there's no reason why we shouldn't all suddenly turn into random objects like ashtrays and lawn mowers or have VWs growing out of our heads at strange angles.  We have no idea the reasons but they are there.  My latest mantra is: Don't try to find the reason in the darkness of the moment.  The reason will show itself eventually.  Right now there is no reason. It's my version of faith.

That doesn't mean we're sitting back and just letting things happen.  We are still discussing options with Dr. Kahn, Dr. Wolff, and Dr. Tye.  They are reaching out, discussing CJ's case with other colleagues and we will be seeking out alternative therapies like acupressure and chiropractic if for no other purpose than to manage any pain.  The absolute main goal is for Charlotte to be as comfortable and functional as long as possible.

We appreciate the occasional message letting us know of treatment options or a doctor who does a certain kind of therapy but rest assured, between all of our medical and therapeutic professional friends, we have explored possible avenues everywhere you could think of.  Dr. Kahn and Dr. Wolff especially have discussed CJ's case with other Doctors all over the country.  The last chemo protocol and the Proton therapy were both cutting edge research/technology, all with high degrees of success.  None of it worked.  Anything is possible but we're not going to delude ourselves as painful as that may be.

Which brings me back to my discussion on spirituality and the word of the day, "Grace."  It's a word that has been floating around in my brain for quite a while and I'm still digesting it but I feel I'm finally starting to get the slightest glimpse if it's true meaning.  "Kung Fu" is one of my favorite TV shows of all time and it was full of little tidbits of wisdom including one I still use.  "When a man finds his true path, Heaven is gentle." That, very loosely, is what grace means to me. It's that Michael Brecker concert back in 1988 on the University of Miami patio that reached deep inside me and showed me what power music could wield.  It's that bartender at the Invershin Inn in Scotland who pulled out a guitar and reignited my passion for music.  It's the "Home" feeling I get when I'm teaching at Romp n' Roll.  It's the conviction I feel that CJ came here intentionally; that she chose us to be her parents because of some purpose way beyond our ability to comprehend. It's asking the network for a pony ride for Charlotte and getting 50 offers in an hour.

Here's something else...In Robert Schimmel's book, Cancer on $5 a Day (Chemo Not Included), he mentioned his son who had died from cancer some years before. He said his son was an old soul and that he believes they had known each other before.  It's easy for me to imagine that for Charlotte considering how easily she learns things and the amazingly deep connection CJ and I share but the one thing keeping me from truly believing that is the pure wonder with which she seems to view everything.  Like a very young soul.

So my take on it is that she is a "wondering/wandering" soul who came here this time to learn stuff and to touch peoples' hearts.  And she has done both extremely well.  I know I'm biased and (trying not to sound trite) that ALL children are special but I look at all the people Charlotte has touched, even those who have only heard about her or just seen a photograph, and I can't help but be convinced that she has something extra special about her.  How many of you fell in love with her the moment you saw/met her?  It's more than just chemical or visual.  She has SOMETHING about her and I can't tell you how privileged (full of grace?) I feel to have been allowed to be her parent; to watch her “collect” people’s hearts and see that special something in action.

And because of all the hearts CJ has touched, I'm fully convinced that CJ's Thumbs Up Foundation is going to be absolutely huge.  She will continue to collect people’s hearts long after she’s gone on to the next part of her journey and families in similar situations as ours will have at least one more place to turn for support.  Could that be a reason for all this? Odds are it’s just another step towards somewhere else.