I don't feel old...or do I?

It's been a busy week. I celebrated my 35th birthday yesterday.  I'm not sure if I feel my age.  I mean, what does 35 feel like?  I guess it depends on the day.  Most days I don't feel like that is an old number.  Then I look at everything that's happened to me in the last year...5 years...10 years.  Wow! 

We just hired a few a new staff member at Romp n' Roll.  She was born the year I went to college!  It's only when I hear things along those lines that I feel old.  Anyway, it was a good birthday.  As low key as I would like with well-wishes from many friends and family.  As with any holiday this year, though, something was missing.  A pretty big something.  I suppose that is the most difficult thing about life these days.  No matter how good things get, you remember that something (or someone) isn't there to share the experience. 

Earlier this week, Roger went down to the James Center where ASK launched the Kourageous Kids exhibit, showing all the courageous cancer warriors who are being served through the clinic this year. The theme this year was "Hats Off for Kourageous Kids" and we donated one of CJ's hats to the cause.  Another reminder that September is Childhood Cancer Awareness Month.  Also, it's not too late to register for the ReeseStrong 5K this Saturday, 9/18, in Mechanicsville.  Roger will be running in his Team CJ pink and purple.  Feel free to join him!

Richmond Rocks books are selling at Romp n' Roll-Mechanicsville all month to benefit CJSTUF.  Books are $14.95+ tax and 30% of the proceeds will benefit our organization.  This is an adorable children's book written and illustrated by local Richmonders.  Not only does it support CJSTUF but it also supports local small businesses!  You can pay for the books with checks, cash, or credit card so get your autographed copy today!



We received some more donations this week towards Roger's Double Marathon challenge.  So far, the vast majority of the donations are going towards the University of Miami Hurricanes side of things.  Are there any Hokies out there that want to see Roger run in a turkey suit?  If they are, they've been vewy vewy quiet!  The challenge continues till November 13th so let's see if we can meet the 10K fundraising goal!

Busy week ahead with Board meetings for the foundation.  By the way, if you haven't noticed yet, you can now access this blog directly through our website.  We've added a tab at the top of the page and the blog will feed there every time we update it.  Thanks to all our supporters who continue to follow us on Facebook and through this blog. 

On the road again

This afternoon, Roger and I are headed to Denver for a much needed (and to toot our horn I'll say much deserved) few days away. His niece Cerissa is getting married on Thursday and we are very excited. I am sure it will be quite the celebration.

The move is completed. Romp n' Roll-Mechanicsville is OPEN for business and let's all exhale... There are still a few polishing touches to do but now the main thing is to just fill the place with kids. We have had overwhelming positive reactions from the Mechanicsville community as well as from our current customers so we are excited by that. Summer session starts in three weeks so tell all your friends and neighbors in Mechanicsville to hop on over and sign up for a class, camp, or birthday party. That's my shameless RNR plug of the week...

In CJSTUF news, our board met last week. While we don't have any major activities planned right now, there are some potentially large projects in the works for fall. Look for some CJSTUF merchandise to launch this summer (T-shirts, mugs, diaper pads...). Ok, maybe not diaper pads. These will be available on the website. In addition, Sarah Blankenship of Crystal Paintbrush is making some original jewelry designed exclusively for CJSTUF. It will feature lots of pink, purple, and butterflies! She is making a limited number of pieces and they will all be unique. We are hoping to launch this in September...just in time for the holiday shopping season. I saw a preview yesterday and was thrilled with the results!

In just a week we will launch our Home Based Biz of the Month. The business for June will be Tupperware! Dot Heffron and Jody Harmon will be the local reps handling this sale. I will post an update in the next week with all the details and we will update the website accordingly so stay tuned. This program is currently booked through August. July will feature Stella & Dot as well as design services by Reflections Interior Design. August will feature Mary Kay cosmetics. If you have any interest in any of these products, stay tuned for more information because a good portion of proceeds from the sale of these items will be donated to CJSTUF. We appreciate these entrepreneurs for their generosity.

If you have a Home-Based or Small Business and would like to be a featured fundraiser for CJSTUF, contact us and we will get you on the docket for the fall.

Once we return from Colorado, Roger will also be launching his official training schedule for his Double Marathon Madness this fall. He will run both the Chicago Marathon (in October) and the Richmond Marathon (in November). He has an ad hoc committee working with him on fundraising plans and events with a goal to raise $10,000.

Finally, soon after we return we will be distributing our first set of Financial Assistance Grants to 10 families served by MCV. I am excited that everyone that submitted an application qualified for funds, including two families that have two children (each) with a significant health need. We are very excited that we are able to do some GOOD WORK for the community this early in our development! The second set of applications are due October 1st so if you know anyone who would qualify, please encourage them to submit an application now.

On the personal front, I appreciate the many people who have inquired about our mental and physical health and well-being over the past few weeks. Roger and I continue to have our ups and downs on the emotional front. I was able to get away to NYC for a few days for Devon's graduation and that was a big help in the stress relief department. I'm really glad the opportunity presented itself. (Congrats, Devon!)

Preparing for this trip has been particularly emotional for me. Getting ready to fly on a plane just hearkens back all those memories of last year: commuting back and forth to Houston, the Disney trip, all of that travel with a very sick child. And now we fly alone. I don't need to tell anyone with kids that flying (or traveling) anywhere with a kid is an adventure in patience. Your packing style is different (why bother bringing a book to read? you won't need it!), there's so much more to think about. And getting on this plane without her is just another reminder that she is gone. Last year at this time, we were in Houston for the first time. We were meeting a new set of doctors, exploring options, wondering about the future.

Now here we are. This is our first truly "pleasure" trip in almost two years (I don't count the Make-A-Wish trip. As wonderful as that was, it was truly bittersweet and I'm not sure traveling with your terminally ill daughter qualifies as a vacation). We're traveling with one large suitcase for two people, a laptop, and a camera bag. Sometimes I think we're forgetting something. I hope that in these next few days we can just relax and recharge. I'm very happy that we can leave the store in such good hands. Our staff is amazing!

I'm sorry to leave you with sad news but we found out early this morning that Casey DeSombre passed away from Leukemia overnight. We never met Casey or his family but they were Caring Bridge folks who we have journeyed with for over a year. Casey was not quite three years old. Despite many innovative treatments and all the best care, he lost the battle. We pray for peace for his family at this difficult time. Cancer sucks. No other way to say it.

The most stress-full-est week ever

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

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

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

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

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

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

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

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

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

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

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

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

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

A busy week & a beautiful picture.

There are two big events of note this week so I wanted to pass along a few reminders:

1. The Used Book Sale hosted by Mechanicsville Moms is TOMORROW (Thursday, 5/6) from 3 PM-7 PM at the Romp n' Roll at Virginia Center. There will be used books for all ages AND baked goods. Come on out during one of the LAST Open Gym sessions at the Virginia Center location to get some great books.
   
   
2. The Chick-Fil-A Cow Drop is Saturday, May 8th from 11 AM-3 PM. Roger will be there with a romp n' roll obstacle course. You can buy $10 tickets at the Virginia Center Chick-Fil-A until Friday May 7th. $6 from every ticket benefits CJSTUF! You do NOT have to be present the day of the cow drop to win any of the fabulous prizes....but if you are able to be there it's always a fun event with kid's activities, family entertainment, chick-fil-a FOOD, and more!

Other than that, there is not much to report. Romp n' Roll's move to Mechanicsville is coming along. It's very stressful right now for all of us but it will all be over in a few weeks. I am grateful to my family and others who have been helping with painting. We also have our great employees and some other volunteers who are donating vehicles and/or their able bodies to help with the move. There is a lot to get done before May 16th but I think we will get there.

Emotionally, I've been a wreck this week. I don't think I've felt this bad since January. Everything just kind of slammed me in the face and between the stress of the move and other issues, missing Charlotte has just been an added stressor that's made me "on edge". I apologize to anyone who I might have snapped at or been less than courteous to this week. I am grateful for the many friends and family (and most especially my husband) who have been leaving lovely notes, special gifts (often anonymously) and just giving me extra encouragement this week.

To close, I will leave you with my new favorite picture of our girl. I just finished uploading a bunch of pics to Costco so I could actually get prints made. Going through the photos of our trip to Florida, etc. and this one is certainly one of the best, in my opinion. I nabbed this one during our Penguin Encounter at Sea World. Those eyes just speak volumes....

Rest, Reflection, and....Retirement?

I think the theme of my life lately is: I'm tired. Roger and I are working a LOT. Between....

1. The regular running of the business (usually unto itself a 60 hour per week endeavor....a few glitches this week had me working about 18 hours more than usual)
2. Moving the business to Mechanicsville (No, we don't have a moving date. Yes, we would love your assistance when we finally know when we are moving. Yes, we are excited about the move but it is CRAZY stressful right now.) I'll be much happier when the permit is finally approved by the county and work may continue as usual.
3. Continuing to work on CJSTUF matters. Thanks to everyone who has sent in their donations this week. Still working on final tallies as donations trickle in. We are also getting ready to launch version 2.0 of the website (it will look GREAT) and are working on our nonprofit filing status.

Speaking of CJSTUF, we do have need for ONE volunteer to help Meredith with some clerical/secretary duties (mainly help addressing thank you notes). If you have some interest in this, email me. First person to do so wins the prize!

Aside from all of that, there is the "normal" business of laundry, cooking, cleaning the house, regular exercise...oh yeah...a LIFE. There hasn't been much effort on the domestic side lately as Roger and I are both burning candles at both ends. Just nobody come over for a visit any time soon. Or do so with low expectations.

The approach of yet another holiday and the emotions rear their ugly head. It's not that Easter holds any kind of sentimentality for me related to Charlotte. It's just another holiday where everyone is happy and excited and celebrating and I'm...not. I'm just not feeling it and to pretend that I am would only make it worse. In fact, I don't think it is the holiday itself that is the problem. It is all the extra fluff that goes on in the name of the holiday that makes me a little crazy. Even before losing Charlotte, I have always had a general issue with things that people do in the name of a holiday (especially a religious holiday) that really just speaks to the base nature of our secular consumerism. Or something that is done out of "obligation"...because we always do it that way.

Example: Roger overheard a few people "complaining" about the number of Easter Egg Hunts that they were taking their kids to over the last week or so. Why complain? If you don't want to do something, don't do it. There's nothing inherently Christian about egg hunts anyway. They really delve back into the pagan fertility rituals of Spring and were just adopted by Christians along the way...possibly as a way of appeasing and/or assimilating new converts to the faith.

Along with that, I have no patience for Chreasters. What is a Chreaster, you might ask? Well, some of you may have your own name for these folks. They're the ones who show up at church only on Christmas and Easter...or at other such times as they feel "obligated" to attend church. It's not just about attending or not attending services either. Chreasters also celebrate holidays (mainly Christmas and Easter) for the sole purpose of acquiring more stuff for themselves or for others. The focus is not on How Will I Use Lent and Easter to Help Me Grow Spiritually This Year? but What Is Going Into My Kid's Easter Basket This Year?

These are the people that go WAY overboard with the Easter baskets and the Santa presents and the gifts to anyone and everyone without delving into the true reason for the season. These are the people who find any excuse to get drunk on Mardi Gras but don't really give up anything for Lent. (Lent...what's that?? Oh, yeah, I gave up chocolate for Lent once. I mean I tried.). Interestingly, both seasons leading up to the biggest celebrations in the Christian calendar (Easter and Christmas) are periods for sacrifice and reflection (Advent and Lent) but to look at our society's focus on the acquisition of materials for Easter baskets and Christmas presents, you'd never realize that. I think because it is SO overblown by our commercial culture I do everything I can in my mind to rear back against it.

Now I'm not so righteous or holy as to advocate that everyone should go to church every week. I know that sometimes I just don't go. And for many different reasons. My spirituality is a very important part of my life and it's very personal. I know people who are incredibly spiritual and never (or rarely) set foot in a church. That's not what this is about. I'm sure there are also a variety of reasons why some people only show up for church on these dates and I want to make it clear: I am not judging your decision. Last year was the first year that I could ever remember that I didn't go to Easter service and it just felt strange to me. I'm certainly used to the Chreaster crowd year after year and I have nothing against anyone personally who follows this habit.

It's more the idea that having a Happy Easter has nothing to do with the size of your basket or the number of egg hunts you attended or the pictures you took with the Easter Bunny (again...a pagan symbol) in your new outfits. These secular acts don't make you a part of a circle of faith. To me, Easter is about realizing the grace that the Holy Trinity creates in our lives through the sacrifice that Jesus made. It's remembering that grace every day as we live our lives and finding some time to reflect on how we can use that grace to make us better people. This actually starts to get into Pentecost and all that the Trinity entails but that's a Sunday School lesson for another day. It's all connected.

There is another part in all this and maybe it speaks to the reason why I now have little patience for things that never used to bother me. I am starting to understand the point of view of retired individuals. Now, again, without generalizing too much, I know from conversations that I have had with friends and family and from general observations in life that people who are retired have a distinct view on the world. They have worked the 9-5 jobs, they have spent their time in the "rat race" and they have now made a conscious decision to leave that way of life for another. Some people spend their retirement on the golf course, others travel, others continue to "work" but in different capacities (maybe more volunteer endeavors or a part time job in their chosen field). The thing that I notice about individuals who are now retired is that they finally realize what truly matters in life. It's not about doing things out of obligation or because society says so. You realize at a certain point that you are only going to have a finite amount of time left on this Earth and doing things out of obligation or duty is just a waste of time. While I'm nowhere close to the point that I can retire from my job, sometimes I think that maybe I've been forced into early retirement from Parenthood and that gives me a whole new perspective on the world.

Which brings us to How I Spent My Easter Holiday. We planted Charlotte. The butterfly bush that was a gift from the Glass family was delivered this week so this morning, Roger and I took the seedling, her ashes, and the biodegradable urn, and planted Charlotte in the sunniest spot we have in the yard. We plan to add a few more plants to the bed. Haven't decided yet whether it will be more butterfly plants or a few daisies. It was a beautiful day and it felt good to be out in the garden working with our hands. You can see more of the pictures here.

May your Easter journey allow you to find the true peace that passes all understanding.

Reading and Writing

I returned from my retreat with a draft of the memoir...and the beginnings of a cold. I'm fighting the cold with zinc, vitamin c, and chicken soup. I don't have time to get sick.

So, yes. Many of you have commented for months that we should turn this story into a book. Thanks to our endless blog postings and some other things that I had already begun to write during the last half of 2009, I worked further over the weekend and emerged with a 37,000 word (or so) manuscript.

The draft of the book is kind of crazy. I actually have it printed. With a cover and binding. (Thanks Office Max). I keep telling myself, "It's just a draft." It needs editing and it may even need some more content. I have a few people, most assuredly members of Garrison Keillor's Professional Organization of English Majors, [You public radio nerds know what I'm talking about] who have already volunteered to take a glance at it and offer suggestions.

I'm also not-so-actively searching for a literary agent. I know that's the next logical step but I don't want to rush things. Like I don't have enough on my plate?

It was very nice to get away for a few days. I was by myself and literally in a cabin in the woods. Of course, it still had all the comforts of home (electricity, running water, WiFi) but I wasn't pulled every other minute to something in the house or to the phone.

In between typing I took breaks reading some literature that has crossed my path in the last few months. One book is called A Grace Disguised: How the Soul Grows Through Loss by Gary Sittser. Great book. The chapters are very short and it's a pretty quick read but the content is powerful. His life had been touched by some pretty significant tragedy and through his grief and healing, he found some very powerful insights about what it means to deal with it from day to day. I could relate to his prose.

The other book is A Broken Heart Still Beats: When Your Child Dies. It contains short stories and excerpts from larger works by both famous people (Paul Newman, Mark Twain) as well as lesser known authors regarding their experiences dealing with their child's death. I haven't read much of the book yet BUT I was thrilled and surprised to see that one of the endorsing quotes on the first page was by Ashland's own Phyllis Theroux. Small world.

Reading and re-reading the manuscript brought back so many memories. I was very glad that we had taken the time to record so much in our blog posts. The bulk of my writing this weekend revolved around those final two months that we had with Charlotte so a lot of emotions came flooding back as I wrote.

In order for me to get away, Roger worked his tail off. We had a very busy weekend at Romp n' Roll with classes, a Kids Night Out, and a full slate of birthday parties so he is very tired. I'm grateful to him for all of his hard work.

Speaking of Romp n' Roll, for those of you who haven't heard the news, we are officially moving the Virginia Center location to Mechanicsville.





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Our lease at Virginia Center is up at the end of May and we needed to find a location with more affordable rent. The long term goal had also always been to distinguish ourselves geographically from the other two locations so that our "territory" had better definition. While some of this has been in the works on our end for a little while, it's brand new information to many of our customers and fans and the reactions have certainly been mixed. I certainly hate that we will lose some of our regular customers because of the move. We expected this would happen. At the same time, I am touched by the level at which some of our customers have been upset by this situation. I suppose that if we were just any old kid's place, our relocation would be a small blip on our customer's personal radar. The fact that people can get so out of sorts by the news tells me that we have a somewhat loyal following. That I like.

The next two months will be BUSY. We have already begun meetings with the architect and contractor. The space is built but the interior must be completed so that it looks like a real
Romp n' Roll so that will take some kind-of major construction. Fortunately, it looks like we can take many of the current elements of the store (our front desk, barn doors, etc.) with us so that should help with some of the expense. Be on the alert for a moving party! We will accept any willing hands (or trucks) when the time comes. I pay willing workers in pizza and beer.

So I think that will get you caught up for the weekend. Spring is definitely in the air. I walked around in short sleeves today! It was fabulous. Interestingly, at my retreat, there was STILL snow on the ground. Be gone Ol' Man Winter!

Time Marches On....

It's March! Spring is slowly creeping into the air. I heard a rumor that while we are supposed to get almost an inch of snow tonight (nothing compared to what we've had this year), it is supposed to hit the 60's later this week!!! I am tired of looking at gray skies and bare trees. Even with my pollen allergies, I am longing for spring.

We have a lot going on with CJSTUF this month. First of all, I announced in the last blog post that we are holding an online Pampered Chef sale for CJSTUF until March 20th. Susan Ferguson is hosting the show and Jessica Pittman is the Pampered Chef consultant. 15% of sales will go to CJSTUF. You can order online by going to the link above (www.pamperedchef.biz/jessicasapron). Enter CJSTUF as the host.

Of course, at the end of the month (March 27th) we will have the Monument Ave. 10K. We are already getting some donations trickling in from runners. Keep up the great work. I understand there may be some special prizes for those that bring in $$$!! Even if you can't run (or walk), come on out to cheer on Team CJ.

Speaking of Team CJ...I am excited to announce that we received the TEAM CJ race shirts yesterday. Drum roll please...

Front of the shirt

Back of the shirt

If you can't tell from the pictures (sorry, not the highest quality pic), the shirts are light purple. Everyone running and raising money for TEAM CJ will get a shirt. If you are cheering for TEAM CJ at the race, you can have a shirt for $8. Any extra shirts will be available for a minimum donation of $10. We will let you know when we have shirts available.

We have more merchandise in the works and on the way. The board has been very busy working on designs, pricing, etc. and we hope to have the CJSTUFF (online store) up and running by April. (Fingers crossed). Special thanks to Madison Fairburn for the t-shirt designs.

Roger has been busy shuttling back and forth from MCV helping to care for our friends, the Berry Family. Wesley had a brain surgery last week. He is still in the hospital and on the mend. We have had some generous people donate meals and Roger has been helping with the coordination of that effort.

I think that the pervasive sadness has reared its ugly head this week for both me and for Roger. We are settling into our new life and new routine and it is both heartbreaking and surreal (there's that word again). We were having dinner last night and talking about Charlotte and the entire experience. Again. There are times when it seems like a dream. A nightmare. Something that happened a long time ago, in another lifetime. Sometimes I think that if I didn't have the pictures, videos, and other memorabilia to remind me, I would wonder if I didn't just dream her existence. Her life on this earth was so short and yet strangely full and complete. It amazes me when I think of all the lives that she touched with her grace, beauty, and charm.

There I go waxing poetic again. I feel like I'm repeating myself and if I do, I apologize.

Anyway, this weekend I have the opportunity for a much-needed retreat. Thanks to some friends, I am headed off to a cabin in the woods for some rest BUT I actually have a very focused task. Many of you have mentioned putting our experience into book form. Not far into this process Roger and I agreed that we wanted to do this and the constant support and encouragement from our rabid fans have convinced us to move forward with the effort. Thanks to our blogs and some more work I have done over the past year, the bulk of the memoir is actually complete. I need to find some time to sit, without distraction of email and work, and actually flesh out the rest of the book.

I am not sure what we will do in terms of publishing. I know that we could always self-publish (go-getters that we are, what's one more thing on the to-do list?). We have also been talking very informally with a local publisher in Richmond but that's about the extent of our progress in this effort. If anyone in our network has resources or connections in the publishing world and you think they might be interested in our story, please have them contact Roger or me directly.

So I am going to a non-profit leadership class at VCU on Friday and then I will be retreating to the woods until Sunday evening (no Henry David Thoreau references, please). Much thanks to Roger for covering my shifts at the store on Friday and Saturday. We have a full weekend of parties and classes at RNR and he has agreed to take that on so I can be distraction free.

Ok, so I will close this now. I just got a call from Roger that he just finished a post himself so you will get 2 for the price of 1 today. Hopefully we weren't too repetitively redundant.

A hole in my heart

A year ago at this time, they were wheeling my baby in for her FIRST brain surgery. We had no idea what would happen. I was a mess (to say the least).

And what a difference a year makes.

This has definitely been a crazy week. More good than bad, I think. Getting back to work has been rejuvenating, energizing, and positive in so many ways. I have enjoyed it but, man, am I tired! I have had a lot to do and, fortunately, the to-do list is slowly being whittled down.

I miss Charlotte. I see her everywhere. Not in the creepy ghost-like sense but in everything I do. I go shopping and see clothes and toys that I will never buy her. I pack my lunch and realize that I don't need to pack hers. I plan my day and realize that I don't need to pick someone up from preschool or make sure we have a babysitter when Roger and I both need to be at the store. I realize how much time and energy goes into being a parent and what an empty space has been left by her departure.

I think of that song: "There's a hole in my heart that can only be filled by you..."

At the same time, I am realizing what a drain Charlotte's illness has been on us in this past year. Charlotte herself was not a drain. She was a JOY but the CANCER and everything that it involved SUCKED our time, our energy, our sanity, our money.....it sure SUCKED. Now that she is gone, the pain is still there but we are going about the process of reclaiming that time and energy (and sanity?).

Last night, we had another CJSTUF board meeting. It was wonderful! Our current board is filled with very talented, intelligent, and motivated individuals. I know that there are many more of you looking to participate in our organization and activities. Do not despair: there will be a place for you! Keep your eyes and ears peeled for news in the coming weeks.

Two final notes before I trot off to a FULL day at Romp n' Roll: Meriwether Gilmore writes the news for the Town of Ashland that appears in both the Herald Progress and on her blog. She wrote a wonderful tribute this week to Charlotte describing her memorial service. Thank you, Meriwether, for a beautiful article! I was moved!

Finally, the only downside to a huge network is that you have many people who want to make sure you are supported. That doesn't sound right as I type this but what I'm trying to say is: I know that many of you have called, emailed, and offered support in multiple ways this week. If I haven't responded, please don't be offended. I am feeling the love but haven't gotten around to returning your correspondence! I have more offers to drink beer/margaritas/wine than my liver will allow and more offers for trips and getaways than my schedule will currently allow BUT I am appreciative of all of them and I hope to be able to follow up on many of these offers in due time.

Stay warm and dry and think sunny thoughts. It's gonna be a dismal day in Central Virginia.

The Best Christmas

It was a really wonderful Christmas, full of traditions and joy. On Christmas Eve, we all got ready for church and made our way to the service. Charlotte was dressed in her most adorable outfit (as usual). We even opened a few presents before church. Roger and I are horrible about waiting. After church, we came home to what has become our "traditional meal" of pizza and wine. A nice, low-key, easy (and yummy) way to celebrate the day. Once we had all eaten, it was time to open presents. The family presents were opened one after another and we marveled at ALL the stuff for Charlotte. There were, as usual, about twice as many presents for Charlotte as there were for Roger and myself combined. Tis the reason for the season, eh? It's all about the kids.

Once all the family presents were opened, it was time to settle into bed. Charlotte got to sleep easily so Santa could do his job. When the morning dawned bright and early, we took Charlotte into the living room to see what Santa had left. We were excited to share in her glee as she opened the "pony phone" that she had been requesting for the last four months!

Yes, it was a wonderful Christmas.

Last year. 2008.

So much has changed since then. At that time, we were oblivious to all of this. Unaware of the year that lay ahead. Unaware of the monstrous tumor that was already a substantial size and growing in her brain. Charlotte was a "normal" kid. Singing, dancing, working on being potty-trained, playing with friends, already beginning to read. She was doing all the things that preschoolers do. For us, cancer was something that happened to other people. Other families. Cancer was the thing that we fought through walk-a-thons and annual donations to St. Judes. We didn't know we would very soon have to go nine rounds in the ring with Cancer...only to be knocked down over and over throughout the year.

This Christmas, on the other hand, has been pretty sucky. (To put it bluntly.) Despite everything that our network and friends have done for us (and there have been wonderful things coming our way for which we are MOST appreciative), it is still just a difficult holiday.

It's challenging to be joyful.

We did not engage in many of our regular traditions: the annual Christmas letter did not go out (but you do get daily blog posts...how GREEN of us!); we did not participate in the regular gift exchange to family and friends (although we have been the recipient of some very healthy and very yummy food and wine); we did not attend Christmas Eve service although we did Skype into the service at my home church in Daytona Beach where Aunt Jamie was singing (beautifully, as usual).

I realized something last night as I was finishing Charlotte's late evening medications and preparing to fall asleep on the trundle bed next to her: in many ways, she is already gone. She may be breathing and eating and even responsive to our stories and queries, but the Charlotte that we knew and loved...her personality and her spirit and her voice are all but gone. She cannot walk. She can barely talk. She cannot interact with us as she could even two weeks ago.

Even the most innocuous things will make me sad. I was watching a Rice Krispies commercial where the mom and two kids are decorating rice krispy treats for the holidays. The girl in the commercial is around four. She is talking and decorating and participating in the activity. And I think: Charlotte will NEVER do that again. She couldn't do it now if she tried. These are the things that make me sad.

I went to work yesterday and it was a mixed experience. It was nice to see some of our regular customers and I was able to use the time to get caught up on some very important RNR work. It also gave me an opportunity to get out of the house. All good things. Then, you get the random person who comes in who knows about Charlotte's situation but has not kept up with the blog posts and perhaps has not seen us in a few weeks or months. They say things like, "So is Charlotte excited about Santa?" or "So how's that pretty little girl of yours doing?". They obviously don't know. And how do you tell them? Do you ruin their Christmas? Do you say, "Well, she's in the final stages of her life right now and we don't really know how many days we have left with her. She is completely bedridden and hooked up to medications constantly and she's going to die. Other than that, we can't complain."

Yeah, there's no right answer to those questions. You just kind of smile, nod your head, say something obscure like, "She's ok" and move on. But it's comments like that which will smack you back into reality and make your heart ache.

I am ready for this year to end. More importantly, I am ready for Charlotte's life to end. I will miss her when she is gone. She will leave a huge hole in our lives and in my heart. But her life as we knew it is already over and this has been the most difficult year of MY life. I hope this post doesn't ruin everyone else's Christmas. As usual, I am seizing the opportunity to be brutally honest.

Before I close, I will just piggyback on Roger's previous post about the Butterflyaway event on December 27th (and probably again on January 2nd). I think this will be a great opportunity for parents to help their kids understand what is happening (and what will happen) to Charlotte. We hope that as many people who want to attend can make it. If you cannot make it and still have questions about how to handle this with your kids, please let us know individually. We have a lot of resources through Noah's Children and ASK that can be of service. Also, if you as a parent want to attend without your kids just so you can ask your own questions or figure out how to share this information on your own, that is ok too.

A Blessed Christmas and a Peaceful New Year to one and all.

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?

Quite the day of reading...

It's no wonder that Charlotte is sleeping. Snoring actually. We had readers at the house at 6 AM this morning and aside from a few minutes break here and there, we had almost constant readers until almost 8:45 tonight! I can't begin to tell you what a wonderful energy it creates in the house. I love it! And thanks to all those who are bringing us healthy snacks (or wine).

Nothing new to report on the medical front for her. She continues to be awake for a few hours at a time and then sleep for a few hours. The meds have remained fairly constant. She doesn't talk much (every once in a while a word slips out) but she usually responds to yes/no questions and sometimes waves. Every once in a while her eyes open as well.

I actually went to work at romp n' roll this morning. I helped Emily with winter camp and it was great. Emily actually ran camp and I just helped on the front desk and was the "trusty assistant". It was so much fun to play tickle monster with the kids. They were a great group and I think it was a good return.

I also got to meet with Matt today. He was nice enough to come over to my neck of the woods and we had a good chat.

We did have to say goodbye to Aunt B today. She was very helpful during her stay here and I know she enjoyed her time with Charlotte. We will miss her a lot! (We always do.)

If you haven't been on our website lately, you should check out the photo page. It's Charlotte-palooza! We have slide shows from many of our recent adventures posted there. For many of our friends who do not have access to Facebook, this is your chance to catch up!

Many have asked if we have plans for the Christmas holiday and we don't. We just plan to stay home and "lay low". Visitors and readers (especially Skype-ers) are welcome. Just let us know.

By the way, the house is FULL of food (and I'm happy to say most of it is healthy). The fridge is FULL to capacity and the freezer has some good stuff in it too. Just want to make sure everyone knows we are grateful and we are being well-cared for.

Have a great evening, everyone.

Animal Kingdom

Yesterday was our final day at GKTW. We checked out of our Villa and got the car all packed. We have a whole suitcase full of gifts from GKTW as well as a few souvenirs. Good thing one of her daily gifts at GKTW was a GKTW duffel bag! Before we checked out, we got to meet Leah. She is one of the event coordinators at GKTW and her dad is pastor at the church in Pierson where my stepdad (John) helps out from time to time. Small world, eh?

One of the coolest things about our checkout process was that they give us this passport. We have a full year to visit places all over the country that participate in the GKTW program. We can go to places like Hershey Park, Kings Dominion, Hyland Hills Water World, etc. for FREE with usually a week or two notice. What a great thing. At some point, I will list all the corporate sponsors and companies that make places like GKTW possible. These are businesses doing great things for families in need and they deserve your business!

After we said goodbye to GKTW, we headed over to Animal Kingdom. Again, we got the primo parking. We made our way into the park and headed off to the safari ride. Got to see lots of animals from crocs to hippos to lions. We then went on the Rafiki train ride and over at the Conservation Station we met Rafiki and Jiminy Cricket. Another great example of how Disney employees treat the Make-A-Wish families: as we were coming in to the Conservation Station, we saw Rafiki doing his meet and greet. We went up to see him and Rafiki's "assistant" told us that he was about to take a break and would be back in about 5 minutes. No problem. We were totally cool with that. Rafiki, however, had other ideas. He saw CJ (and probably Roger's Make-A-Wish tee) and stopped to greet her and take a few pictures. We got nice hugs from him too.
Later, when we went to see Jiminy Cricket, we pulled up to stand in line. It wasn't a very long line (maybe about 3-4 families) so we just pulled into the queue. One of the assistants looks over at us and says, "You know that you don't get in line. Come on over here!" And with that, we were bumped to the front. It was funny!

During the morning, Charlotte was very low key. She didn't really perk up and was very quiet. Roger and I weren't really feeling all that great either so it was kind of a rough morning. Things got better after lunch, though. We ate at the Yak and Yeti which was a Pan-Asian restaurant with cool Hindu decor. You felt like you were in a lodge in the mountains of India or Pakistan. Roger had a great meal of pan-seared miso salmon with rice and veggies. I had fried green beans with a chili-plum sauce and pan seared pork wontons with a lime soy sauce. Both were yummy!

After lunch, CJ seemed to perk up a bit and became much more talkative. We headed over to the Finding Nemo Musical show and we were AMAZED! First of all, we totally beat the crowds with our access pass. The musical was great and we were all entranced. They use puppets and live singers a la The Lion King musical. I think that was the highlight of everyone's day. CJ laughed at the funny parts and was entranced by the music.

From there, we went to see the 3-D bug movie (from A Bug's Life) and then found our stations for the parade. The parade at Animal Kingdom was not as interactive as the Magic Kingdom parade but there were great animal costumes, floats, and some of our favorite characters. From there, we left the park and drove to Daytona Beach. We had dinner with my mom and got settled in our condo. We are staying in one of my godmother's condominium units and it's GORGEOUS. 2nd floor...right on the ocean. I had forgotten how calming the sound of the ocean can be. We have had a nice night of rest and we have been enjoying the morning. Roger's dad drove down to spend a few days with us and we are planning to take the next few days VERY easily.

Roger noted yesterday that the extra steroid seemed to help with the tremors. We are already noticing those effects wearing off, though. The tremors seem to be coming back and we are debating the advantages of increasing the steroid versus letting things progress. May need to consult with the docs before the trip is over.

Before I sign off, one final plug for an event in the Richmond area:

The Mechanicsville Moms are holding a used book sale at Romp n' Roll-VCM tomorrow (12/10) from 3-7 PM. There will be books available for all ages. Please stop by. All funds raised will go towards CJSTUF.

Also, the CJSTUF website is LIVE. Go there and check it out. Huge thanks to Ruth and Jay Campbell who have worked so diligently to get this going for us. It looks great! There is an events calendar where we will post upcoming events of all kinds. There is also a "read with CJ" calendar. If you are one of the many who would like to read with CJ, please fill out the form (on the Contact Us link) and we will get back to you about dates and times. We will officially start that upon our return from Florida (on or about 12/16). You will also be able to read the blog and connect through Facebook via the website. More changes to come but this is a wonderful start.

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)

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)

I'm thinking (hoping) we've made it over the hump.

I'm thinking (hoping) we've made it over the hump. Charlotte's appetite seemed to come back with a vengeance yesterday. She was eating and drinking a LOT and she only had a two hour nap yesterday. We continued the fluids overnight just to be safe, but I think we will skip them tonight. She ate two chicken strips from Chick Fil A, about 3-4 bowls of cereal, some fruit, a few cookies, and LOTS of chocolate milk and apple juice. I hope that this means that the somnolence syndrome is fading.We go in to see Dr. Khan tomorrow and I'm sure they will run numbers as well as take a look at all the other vitals. We just got a letter in the mail today telling us that her MRI has been scheduled for early morning on Friday, November 7th (a Friday). The countdown begins!She had a busy day at Romp n' Roll today. Roger stopped by with her in between running errands while I was teaching this morning and she decided that she wanted to stay. She didn't participate a lot in classes. In fact, Ms. Annette ended up becoming Charlotte's personal reader but then we went home for a mid-afternoon nap and came back to RNR this evening for princess class and two for 2's. She participated to the best of her ability and it's been good to see her trying.I heard that the ReeseStrong 5K got a great plug this morning on Lite 98 by Bill Bevins! What a great connection for getting the word out. We are very excited about the weekend's activities and it looks like the weather will cooperate.Big today tomorrow, including the arrival of granny and gramps!That's all for now,Rachel

I posted on the Facebook site that Charlotte was simply amazing yesterday and she was. I continually draw inspiration from her determination.It's all little things, nothing Earth shattering but it adds up.Yesterday, a special ed teacher from Hanover County Schools came over to evaluate CJ for possible services through the school system. She talked a lot like Rachel.Charlotte was a little standoff-ish at first bit "Miss Terry" was very good at what she does and it took all of 3 minutes for Charlotte to be jabbering away at her.They did some hidden pictures, colors, counting, drawing, walking, stacking; but all camouflaged in play and Charlotte was amazing. Her physical limitations were clear and that's what we needed to establish. Her communication, vocabulary, and cognitive abilities shown brightly and I'm thinking Miss Terry left with a very clear idea of what we need. There's a meeting planned for next Wednesday to look into the options more deeply.After that, Charlotte and I went down to Romp n' Roll. She went to Good Sports Class and I did errands. She was all over the gym and was social with the members. She also spent a good amount of time pal-ing around with Miss Samantha.
When I got back to teach the afternoon classes, she was hanging out in the lobby with Mommy wearing a princess tiara with pink fluff on it getting ready to go into Princess Class. Very adorable.
THEN she came into my Two For 2s class and tried everything in the gym including climbing up the rock wall and sliding down the other side. I helped her quite a bit but she didn’t back down from anything and never gave up. She sat down on the red floor, got back up when it was time, picked up things from the floor without help, etc…I was immensely proud of her. She finally started to peter out around the second art project.
The off to home. She’s been asking to sleep in her upstairs room and although it has made me nervous, we put her to bed up there. She’s done great both nights and I’ve only put little obstacles in her way to alert us if she should get up in the middle of the night. The fact that she’s been completely out all night has helped.
The thing that made my night was when I went in to give her some medicine. She fussed a little like usual but afterwards, when I told her I’d stay with her for a bit, she gave me the biggest smile I’d seen in quite a while. Daddy is still a sucker for that smile.
This weekend, we go to Farmington, New Mexico for the cancer center walk and the “Aunt Soon-To-Be-Not-So-Hairy Head Shaving Party!” Should be a great time.

I got to see football!

Hi! Roger here. It's been a very, very busy few days since I've been back so I haven't had too much time to write. Rachel is doing a darn fine job of it anyway so I'm sure I wasn't missed too much.
This post is very long and has next to nothing to do with Charlotte so if you’re looking for CJ related stuff, feel free to skip it.So, I had something of an adventure on the trip back to Virginia. They say all roads lead to Rome. Well, all Airtran flights fly through Atlanta. Or at least most of them. Which is why I was in Atlanta on Sunday night at about 8:00pm waiting to board the plane from Atlanta to Richmond. As they were getting ready to open the doors, the gate agent got on the speaker and asked if there were any passengers who would be willing to give up their seats because they had overbooked the flight. They would give each volunteer two free round-trip tickets to anywhere Airtran flies, hotel accommodations for the night, a meal voucher, and a seat on the next plane out (Monday morning 8:05am; arriving 9:35am).
I quickly checked with both Rachel and Annette (the fearless Romp n’ Roll front desk manager) to see exactly when things got started Monday morning. We had a special free preview class planned at 10:30 and I took a calculated risk that there would be no significant delays and I could get to RNR by 10:30. Just in case I texted around to a couple other employees and got Miss Anna (all hail, Mack-Daddy-Momma Anna!!!) to come by in the morning JUST IN CASE.
Everything seemed in place so I volunteered. They did, indeed, use my seat, and at least three others, so I got to spend the night in the Sheraton Gateway Hotel in Atlanta with a big o’ hairy (not really hairy, that would be gross!) king-sized bed and a flat panel tv with the NFL Channel in HD!
I got to see football.
I GOT TO SEE FOOTBALL!
Who cares that it was pre-season with two teams I care nothing about?
I GOT TO SEE FOOTBALL!!!
Here’s my little informational review of the Sheraton Gateway Hotel in Atlanta…it ROCKED! Very, very nice. Cool soap in the bathroom, too.
The only not-so-good thing was that the other “Airtran refugees” and I were talking to a guy who was telling us about the horrors of getting through Atlanta Hartsfield-Jackson airport security on a Monday morning and knowing it’s the busiest airport in the world, we had no reason to doubt him. We decided as a group to meet for the shuttle at 5:25am to make sure we had plenty of time to make the flight. It was already coming up on 10:30 by the time we got into the rooms and I was so nervous about being late that I really didn’t sleep much. I set my iPhone alarm twice and called down for a wakeup call at 4:55am.
I tossed and turned all night and finally got out of bed at about 4:30 to get ready. I was getting ready to walk out the door when my 4:55 wake-up call came through.
At least I was there early enough to take the 5:05 shuttle to the airport. It took me all of 5 minutes TOPS to get through security and I was sitting at the gate, enjoying the spoils of my meal voucher by 5:30. One very interesting thing is that while there weren’t many people at the airport when I got there, they were set up for the crush. The zig-zag maze they have for the busy times has got to be 90-100 feet deep. That’s a lot of back and forth. Reminded me of a Disney ride line. Or maybe the “Line Ride” on South Park (TRIVIA!!!)
Anyway, we’re sitting there waiting for the time to pass; I’m reading Inkhart and starting to get really into it but I have to stop every chapter or so (they’re short chapters) and rest my eyes. That lack of sleep fatigued feeling is creeping in and I’m starting to really worry about the day awaiting me at Romp n’ Roll. I basically have no room for error with the timing of the flight, then I work the entire rest of the day with virtually no break until the end of the day at 7:30. Then after that, I had scheduled a rehearsal for the backup singers for the thing I’m doing at Rompy’s Summer Concert Series tomorrow.
I’m thinking to myself, “What have I done? There’s no way I’m going to make it even if I get a short nap on the plane.” I think I called myself a few choice names that I can’t repeat here.
And there was always the nagging fear that I wouldn’t make it to Romp n’ Roll in time.
Now, you have to realize that I hadn’t spoken to Rachel about this yet. I knew she would fuss at me if I told her my plan and if I screwed up and missed the class, I only wanted to get yelled at once when it all hit the fan. I was just trying to be efficient! :-) I also didn’t think Rachel needed the added stress. Especially if everything worked out. See, I was being thoughtful, too!
The gate agent finally started getting everyone ready to board and they announced that they were looking for volunteers to take the later flight as this one was overbooked! HA! The thought DID cross my mind but only for a second. I mean, what kind of hero would I be if I came home with FOUR roundtrip tickets to anywhere Airtran flies? I would definitely have missed the free preview class (with 20 kids registered!) and probably at least one other so my hero stock would have dwindled. I would have lost a lot of Venus/Mars points (More TRIVIA!!!) so it really wasn’t worth it.
Another thing about Atlanta Hartsfield-Jackson International Airport: it takes FOREVER to taxi out the actual runway. I think it took us a good 25 minutes to get out there, all the while I’m drumming my fingers nervously and my leg is bouncing like the “energetic” woman’s who I sat next to on the way out. I think I said, “Let’s go, let’s go, let’s go, let’s go” about a hundred times.
Finally we got up in the air and I was completely planning to lay back and sleep but I was simply too nervous and Inkhart was calling to me. So I read, drank some tea and coffee, and finally took a power nap on the descent into Richmond.
We got in about 7 minutes late and I still had to pick my guitar up from the Airtran baggage office, get the shuttle to the Park-n-Go lot, find the car, pull out all the pertinent cards (AAA, frequent parker, and credit), pay, and drive the 20-25 minutes to RNR.
I got to the baggage office and there was no one there but I could definitely see my baby sitting in there. It was safe so I decided to leave and come back late Monday night and get it.
Then I went to the courtesy phone and called Park-n-Go for the shuttle and they told me it was already at the terminal. From here on out, it was something of a dream the way everything fit together. I walked out, walked right onto the shuttle and within a couple minutes, we were headed to the lot. The only other guy on the shuttle had a problem related to a car that his father left there and the keys which no one seemed to be able to find (this was all discussed on the radio on the way over). This could have been a seriously delay but the shuttle driver had a great head on his shoulders and dropped the son off at the office so he could take me to my car first. It was also very convenient that right next to my car (Rachel’s blue Bug, actually) was a man waiting to be picked up to go to the airport.
I got loaded up and zipped out to the gate to pay. For all the cards, papers, etc…the attendant had to juggle, she got me out in very short order and I was on the road to RNR by 10:07. Good thing I just happened to pack a clean RNR shirt. Not sure what made me do that.
Traffic was light and I stayed calm, not wishing to go too fast and risk a ticket. Barring anything like a flat tire or bad traffic, I felt I was going to just barely make it. On the way, I called Airtran baggage and they told me I could leave the guitar until Tuesday morning which was fine by me!
I walked in the back door of the store at 10:28! Anna was there JUST IN CASE and so was a multitude of children! The class had 20 kids pre-registered and another 13 dropped in unannounced! Don’t forget that includes their grownups and a few grand grownups. YIKES!!! So it was completely nuts and very convenient that Anna was there. I asked her to stay because I knew I would never have been able to effectively teach the class with that many kids.
I stayed awake, it was a great class, as were all the other Monday classes/camp with the exception of when the wild and crazy all-girls 6:30 Rhythm n’ Roll class staged a revolt and everyone abandoned the class 15-minutes early so that they could all go get water. :-) I have little to no control over that class but we have a great time!
Rehearsal went well and I can’t wait until the concert tomorrow. It felt awesome when I realized that everything would work out the way I wanted it to.
I love it when a plan comes together!
p.s. Another great thing about the 2 free round trip tickets is that Charlotte and I can now go the New Mexico in September (if she’s up for it, that is). Aunt B and the NM contingent are walking in a fundraiser for the local cancer treatment center and they’re all wearing “Charlotte” hats. As a bonus, Becky (Aunt B) promised me that if I could get CJ out there for the walk, she would shave her head!!! She promised me and now I think we can make it. Now I’d like to line up a bunch of women in the Farmington, NM/Durango, CO area willing to shave their heads so Aunt “Not-so-Hairy” doesn’t have to do it alone. Everyone put your feelers out and spread the word.

Parents Have to Be Advocates for Their Children

Just about 4am (as you can read intelligent CJ lover) and we just had an interesting experience. It's also reason #42 why parents have to be advocates for their children.
Because the central line pulled out, they had to put a traditional IV line in her hand-not a lot of fun. When I got here everyone informed me they would have to poke her again to draw blood for her labs and, of course, they couldn't do it at any kind of sane hour, NOOOOOOOOOOOOOOOO!!! They have to do it at 3am because that's when they have to check her numbers.
So,
I settle in at around 11pm to see what kind of sleep I can get from this very noisy room and slightly lopsided chair knowing what's coming at 3.
Now being the kind of guy who gets a little freaked out about oversleeping when there's an early wake-ups time, I was up just about every hour until 3 when, as usual, nothing happened. (Hospital standard time). The nurse came in to do vitals and in the back of my mind, I was actually hoping they had decided to wait. No luck. On her way out the door after the vitals check, she warned me it would be about 10 minutes.
It was more like 7. Which is good because it didn't give me the chance to fall back asleep.
So,
in comes the nurse and another woman, presumedly (sp?) to hold Charlotte down. Of course, that's my unpleasant jorb. (yes I said, "jorb." That's the next trivia challenge...) Turns out the other woman was the one doing the actual poking. That, believe it or not, made me feel better as the night nurse, nice as she is, doesn't seem all that secure doing procedures above and beyond taking vitals and hooking up drugs to the pumps. The other nurse, Mary, came down from the PICU and we all know how highly trained they are down there. She said she gets called out to do draws all the time because it's so difficult to access little veins.
So,
I at least feel like CJ is in capable hands. I get on the bed next to her and shield her eyes as they lights go on and the "big rubber band" gets tied onto her other arm, which she doesn't like and lets us know. I mentioned out loud that they should have some kind of topical cream that would numb the pain right at the site. (There's a really bad movie in there somewhere with Phil Hartman and Sinbad involving liquid novacaine and mistaken idenity.) Can anyone tell me why they don't use it in hospitals for little pokes and things like that?
I'm thinking, "This is REALLY going to suck. I'm getting ready to help them inflict more pain on my baby and she'll be wide awake screaming and I'm never going to get a shower." (Yeah, selfish, I know)
Then I remember something the night nurse mentioned, totally in passing just after Rachel left, about pulling blood from the IV line and how she was scared to try it because it might pull out the IV which would be far more tramatic for Charlotte. Almost in desperation, I said, "So there's no way you can do this through the IV line?" Nurse Mary from the PICU looked up like the lightbulb went off and said something like, "Hey, let's try that."
Bless her and all her progeny from here to the mext millenium. It worked and all CJ had was some minor discomfort from the "big rubber band." She was out again in about a minute, and I'm not exaggerating.
Of course, I'm wide awake and about to get my wonderful shower.
So let that be a lesson to you. Ask those "dumb" questions and be the obnoxious, persistant parent.
In my hyper emotional state, I think "Mary" just made it to the list of potential names for future children/pets behind Tye, Joanne, Kahn (only as a Trekkie pseudonym), Melissa, etc...(about 10 others)
Speaking of that, we forgot to mention that Charlotte went by the PICU for a walk and just happened the see Nurse Melissa and another nurse, whose name I'm ashamed to say I've forgotten, near the front doors. They certainly remembered her and came out to fawn (faun?) all over her. She didn't mind.
So,
After having Leah's death weighing pretty heavily on me for most of the evening, we had a sliver of a good thing happen. It's all we can ask for, right?
The spring fling at Primrose went smashingly and a good chunk of money was raised for A.S.K. in CJ's name. Thanks to all there including the teenage volunteers and especially to Karen Giles who allowed me to leave and go perform with John Robison from Southern Horizon at the Confederate Heritage Days celebration down at the Old Chester Courthouse. (There's some irony in there somewhere)
An aside: Although I really love playing the music and I'm becoming a student of the history behind the "War of Northern Aggression," I think some folks need to realize that the Civil War is over. I used to think that sort of thing was just reserved for geeks like me who got caught up in the Renaissance Faire mentality. (Man, I loved those days!)
Hey, did I mention we're having a head shaving party Friday?!? :-) The golf tourny and other various fun-raisers are being planned and I'm blissfully unaware of most of the details. Just point and tell me to go, I'll be there. You'll probably know about it before I do.
Wesley Berry's family (who we met here) is having a golf tournament Friday April 17 up Cameron Hills Golf Links in King George County. Romp n' Roll is going to sponsor a hole and donate some prizes. Here's the link to a story about him:
http://fredericksburg.com/News/FLS/2009/042009/04032009/455786
Go play a round for us.
It's now 5:00am and I still haven't showered. Here I go.

A Quick Update before going home for the day:
It was a great day at Romp n' Roll and Roger and I have been busy all day. Roger is now up in Caroline County launching our Adventure Classes at Ms. Alisons!
Charlotte is doing ok from what I understand. We FINALLY got a call from the surgeons asking for permission to re-insert her Central Line and that will happen first thing tomorrow morning. I don't have news on her methotrexate levels but I understand she was peeing like a racehorse today and eating well. Not sure if she's pooped.
Thanks to the Masseys for visiting with Easter Baskets. Riley's second grade class actually made baskets for all the kids on the floor and delivered them to Child Life today. What a sweet gift!
Now it's time for me to call gramps and get picked up from work. Did I mention that the alternator in my car died? More joy to the world.
On a positive note, I spent the morning running errands and got to listen to my This American Life podcast which was full of fabulous stories (as always). And through the rain I got to see a pretty cool rainbow while trekking down I-295. Plus I got to hang out with some pretty cool kids at Romp n' Roll today! At least I can find some joy in the day.
Time to sign off...my chariot awaits.
Rachel

It has Been an Up and Down Day

It has been an up and down day. She slept fairly well and we spent most of the morning watching DVDs, reading books, and making our "rounds" both inside the hospital and out on the play deck. Taking the morning meds (oral) was still a battle. No pooping yet but I have heard a few toots.
Our best part of the day came around 3 PM when Charlotte got a special visitor: ELMO! One of our Romp n' Roll families (the Murphys) have an Elmo costume leftover from their daughter's birthday party and they stopped by to visit with an Elmo balloon as well (pics to follow). Charlotte seemed to enjoy Elmo's antics although she was a little reticent about hugs. She did talk to Elmo a lot about all his Sesame Street friends as well as her friend Dora. Then Elmo even got to visit with a few other kids on the unit. Thanks so much to the Murphy family! You really brightened her day...
Then we went to "Sunday School" and Charlotte made a butterfly, got a puzzle, and heard a few stories. The event was enjoyable enough but I just had to laugh at the concept of trying to share heaven/hell theology with a bunch of preschoolers. We were treated to a good ol' Bible tract and the concept that "There are only two places to go when you die: Heaven or to live in the fiery pit". [This is LITERALLY what the woman said to these kids]. I don't think Charlotte or any of the other kids (all but one were under the age of 5) really got that... The person sharing the experience was nice enough but as she was telling Bible stories, she kept saying things like, "Remember the time that Jesus was crucified and all the priests in the temple were against him?" Her "verbage" was not really for the pre-K set and I found it amusing that she would even consider the fact that these kids would "remember' theses stories, let alone have heard them before.
Anyway, I digress. Charlotte had a good enough time and that's all that matters...
At the moment I am trying to wipe "sauce" off of the cheese and bread that makes up the pizza. Apparently the cheese and bread are good; just not the sauce in between. And then when I wipe off the sauce it's "too soggy". We really need a grilled cheese option on the culinary menu (sadly there is none).
So here is the really bad news of the day: we were returning from Sunday School and had just stopped at the nurses station since her line was beeping and she needed a new flush of Leucovorin. Her nurse checked the line and sent us on our way. I got us back to the room, proceeded to lift her out of the stroller, and her line went in the other direction. Yes, Ladies and Gentlemen, her Central Line literally fell OUT of her chest!
Fortunately, I didn't panic and Charlotte hardly reacted at all. I asked her if her chest hurt and she said "not anymore". I called the nurses and they all came in and looked at it...shocked, to say the least. Also on a good note, it didn't bleed as some central lines do when they are "unplugged". My personal theory is that her body has rejected the line (rather than accepting it and forming scar tissue on the inside to hold it in) and it just kinda pushed itself out. That would explain the lack of blood.
So the ped on call said that we probably can't get surgery done to repair the line until tomorrow (apparently surgeons ascribe to the don't-work-on-Sunday motto that Chick-Fil-A and Ukrops ascribes to as well...except in cases of extreme emergency...which this isn't). BUT we have to keep fluids pumping through her to flush the methotrexate AND she still has to get some of the Leucovorin SOOOOO....the nurses had the extreme pleasure of putting an IV in her left arm. Plus we will need to get blood draws at 3 AM to check all her levels. More fun. It was not a pleasant experience but the nurses were (of course) awesome and got her IV in on the first stick. Hallelujah.
Just another bump in the road. But it still sucks.
I feel like lately, all the "little" bumps in the road are magnified. When you're driving down the road in a 2009 Cadillac Escalade (Hybrid, of course), it's smooth sailing and even if you hit a pothole, you can keep cruising along OK. But we're riding in a beat-up 1978 Chevy Nova with a rebuilt transmission, 200K miles, and we're barely passing inspection. We feel EVERY little bump in the road and we're on a cross country trip. So lately even the littlest thing (something that in the grand scheme of things is probably not that important and certainly not high priority) can upset me and ruin my day/week/month/life.
Charlotte has developed a few "odd" behaviors and sayings in the last few days. One is that she now LOVES the lemon cleaning wipe that comes with the silverware on every food tray. She has to clean her hands and face after every meal with it. The other is that she has said a few things like, "Kittens don't die" when looking at a picture of kittens. When I ask her about it she expands, "Kittens don't die because they're babies." Not sure where this stream of logic comes from or why she's suddenly obsessed with it butI find it fascinating. She really has such an interesting perspective on the world.
So daddy is on his way here and I'm very happy to give up the reins for the evening. Please pray for a quick fix to this central line mess as well as a quick flushing of this methotrexate from her system so we can get on with the rest of the chemo.
Rachel

Update from Roger:
Please join me in wishing strength to the Porterfield family as they mourn the passing of their little girl, Leah. We met them the second time we came to the hospital. Leah was admitted after they were involved in a car accident.
I'm not sure if you can view their website but here's a link...
http://www.carepages.com/carepages/leahaveryporterfield/updates/2072395?client_code=vcuhealth&ipc=mur
Love to all,
Rog