Every Day Is A Bonus!

That's one of our catch phrases.

It evolved during Charlotte's treatment out of the realization that we may be spending our last days with her.  It's our statement that no matter how inconvenient it may be to have to wait at the toll booth, or find that a piece of technology isn't working correctly, or to get mayo on your burger (when you expressly ordered one with NO MAYO!), it's all pretty insignificant when compared to the fact that the time you have to spend with loved ones is finite and can end at any moment.

Every Day Is A Bonus!

Like anyone, we find ourselves losing sight of this, occasionally (not very often but it happens).  We need reminders that Every Day Is A Bonus which is why we wear the bracelets, have photographs of Charlotte all over the place, and spend nearly every free moment we have working on/thinking about CJSTUF stuf.

Bedonna Wakeman's piece

The Fall Art Auction is coming up tomorrow at the Cultural Arts Center in Glen Allen and we're all working feverishly to get everything in place.   Besides the fact that it's a cool fundraiser, it's also one of those big reminders.  It's a reminder to us that what really matters isn't how much money we bring in but the fact that so many wonderfully talented artists have donated pieces for our event - everything from pieces of jewelry to a beautiful 4' X 5' painting from Pirate Alley Artist Bedonna Wakeman to a "commissioned" piece from one of our youngest contributors, Ani Checkosky.

These artists remind us that Every Day Is A Bonus!

There are also the volunteers who will be giving of their valuable time to make sure we have an event worth attending.  This includes three live interactive artists who will actually be creating pieces during the event to be auctioned off at the end of the evening.  There are also Brothers of Alpha Phi Omega from Randolph-Macon College, auctioneer Marlynn Turner, and of course, members of our amazing Board who will be helping to remind us.

The generous sponsors and those who have donated in lieu of tickets because they are able to attend remind us.

And the end result of it all,  besides keeping US centered, is continued support of the families in the best way we can with the resources we have been allowed to gather from you.

Now if we have a bit of fun while we gather those resources, can anyone blame us?  Because, "Hey, if you can't boogie, then what's the use?"

Did I mention the chocolate dessert bar with chocolate fountain?  What about the wine donated by Ian at the Caboose in Ashland or the very special surprise that we will be unveiling?  Reminders, reminders, reminders...

Tell those you love that you do.

Every Day Is A Bonus

Even now.

This Is Why We're Here

We here at CJ's ThumbsUp Foundation often post photos of financial assistance grants going out in the mail with the caption, "This is why we're here" or publish updates about this event or that, trying to keep everyone energized about the mission of CJSTUF.org.

But that's only part of it.

A large chunk of why this non-profit exists is because of a little girl named Charlotte Jennie who was born on July 9, 2005, seven years ago today.  SHE’S why this thing exists at all.

So many of you already know about Charlotte (CJ) that it seems ridiculously redundant to retell the story but what we will say is that because of this amazing, adorable, courageous, intelligent, curly-haired girl, and the way she charmed everyone she met (still seems to), we are moved to try and keep that energy moving forward.

It is very difficult to think that our little Monkey Butt would have just finished her second year of school, that she would now be swimming or going to camp, that we would be taking trips to see grandparents…

But that’s not the reality with which we’ve been entrusted.

The reality is that at any one time there might be upwards of 70 families of children receiving treatment on the 7^th floor of VCU/Children’s Hospital of Richmond and so many others moving through the various outpatient clinics.

The reality is that we just sent out 10 more Financial Assistance Grants totaling $5,000 and that just barely brought us even with demand FOR NOW.

The reality is that there are many, many other parents, grandparents, siblings, and caregivers all struggling to keep it together right now, at this very moment, through the worst nightmare imaginable.

The reality is that, because of Charlotte’s inspiration, upon which we draw every day, you have been moved to support our mission which, in turn, gives us a very strong coping mechanism allowing us to face each day as it comes.  Please believe it when we say that some days the act of getting out of bed seems like more than we can bear.

Today is one of those days.  But we WILL get out of bed because of Charlotte and what this Foundation has become to those who have built it and to those who have benefitted from it (some of the same people fit into both categories).

So Rachel will go to her first day of school at The Dominion School For Autism as principal and Roger will meet donors and do his show at WHAN Radio.  Many will raise a chocolate milk toast and watch Mary Poppins or Finding Nemo or Lady and the Tramp or one of her other favorite movies (she had several).  A listen to the Curious George Soundtrack is in order as well. Or giving "five" to Snook from "Big, Big World."

Hopefully all will be inspired to be more than they are right now and keep growing from there.

This is why we’re here.

Happy Birthday, Baby Girl.

CJSTUF Spotlight: Rachel Reynolds

Position: Executive Director, Co-Founder, CJ’s Mommy

Rachel Reynolds is originally from Daytona Beach, Florida where her mother, Gayellen, and stepfather, John, currently live.  She grew up listening to the roar emanating from Daytona International Speedway and working at her godmother’s hotel on the beach.

An exceptional student, Rachel participated in the International Baccalaureate program at Spruce Creek HighSchool in Port Orange and graduated second in her class.  She entered the University of Miami in Coral Gables as a Music Therapy Major and graduated with her Bachelor’s Degree in 1997.

While at “The U,” Rachel met a long-haired, wild dressing, authority bucking jazz vocal graduate student named Roger who eventually, somehow, talked her into marrying him and running away to Richmond, Virginia.  It just so happens that she conveniently had an internship waiting for her at the Virginia Treatment Center For Children so it worked out ok.

After two years in Richmond, they picked up stakes and moved to Boone, NC where Rachel started graduate studies in Speech Language Pathology at Appalachian State University.  After earning her Master’s, Virginia called again and they moved back; first to Fredericksburg and then finally to Ashland where they bought their first home and where they still reside.

Rachel began working at Commonwealth Autism Services in 2004, left in 2007 to run a small business, and returned to CAS in 2011.  She specializes in ABA Therapy and recently began her run as principal of The Dominion School For Autism.

Right in the middle of all that (2004 to be precise), Rachel found out she was pregnant and on July 9, 2005, gave birth to Charlotte Jennie Reynolds who became the center of Rachel’s life.  Charlotte was a beautiful, sweet (mostly), curly-haired little girl who learned quickly that “being adorable gets you stuff.” She had an amazing little voice that melted hearts and made everyone fall in love with her.  She was, indeed, very special.

In 2009, an ultimate burden was placed upon Rachel and Roger when CJ was diagnosed with a primitive neuroectodermal tumor (PNET) in her brain.  Rachel was pushed to the limit of what a parent should endure and was pushed past it when Charlotte lost her battle on January 7, 2005.

Despite the nightmare, Rachel has been able to continue her life, co-founding CJ’s Thumbs Up Foundation with Roger, acting as executive director.  And through the pain, she has retained her ability to laugh even so far as joining an improve comedy troupe in her tiny amount of spare time.  Because she knows, first hand, the healing power of laughter.

And so, through the sadness and tears, she can also smile as she answers “4-1/2 Questions.”

Four And A Half Questions:

1)      Q: What is your favorite food that you’ve never eaten?

A: Lobster

2)      Q: What is your day job?
A: Principal of The Dominion School For Autism/CAS

3)      Q: What is one of your favorite things about Charlotte?
A: Her laugh and her voice (which is technically 2 things but we’ll let it slide).

4)      Q: What is your top goal for CJSTUF.org?

A: Be recognized nationwide.

            ½)   Q: Wouldn’t it be cool if…
                        A: a celebrity played for CJSTUF on Jeopardy?

For more information on her journey through the world of pediatric cancer, check out her book: Four Seasons For Charlotte on Palari Books or follow her personal blog, I See What You Meme.

Thumbs Up Campaign: Who Will Win?

The Thumbs Up Campaign is still going strong at many local Ashland businesses.  Have you seen the logo in some neighborhood storefronts lately?


Local Ashland businesses have volunteered to support the Thumbs Up Campaign.  Add a $1 (or more) donation to each transaction and 100% of the proceeds will benefit CJSTUF.  Each donor gets their name on a card which will be posted prominently in the business.

Current participating businesses include:
Pepicellis Pizza         208 S. Washington Highway, Ashland
NY Nails & Tan          107 N. Washington Highway (Ashland-Hanover Shopping Center)
Ashland Pack & Ship  225 N. Washington Highway (Ashland-Hanover Shopping Center)
Flower Depot           211 N. Washington Highway (Ashland-Hanover Shopping Center)
Cross Bros. Grocery   107 S. Railroad Avenue
Train Town Toy & Hobby 104 S. Railroad Avenue
1st Capital Bank-Ashland  409 S. Washington Highway, Ashland


100% of the proceeds will go to CJSTUF's programs, providing financial assistance to families in need.  The business that sells the most cards will win a team-building workshop from Comedy Sportz Improv Theater valued at $1500!


The Thumbs Up Campaign will be going on through May 31st. 

Thumbs Up Campaign: Local Businesses Give Back

If you're shopping around Ashland in the next month or two, you might say some of the proprietors are "all thumbs".  


Local Ashland businesses have volunteered to support the Thumbs Up Campaign.  Add a $1 (or more) donation to each transaction and 100% of the proceeds will benefit CJSTUF.  Each donor gets their name on a card which will be posted prominently in the business.

Current participating businesses include:
Pepicellis Pizza         208 S. Washington Highway, Ashland
NY Nails & Tan          107 N. Washington Highway, Ashland (Martin's Shopping Center)
Ashland Pack & Ship 225 N. Washington Highway, Ashland (Martin's Shopping Center)
Flower Depot           211 N. Washington Highway, Ashland (Martin's Shopping Center)
The Thumbs Up Campaign will be going on through May 31st. 


If you own a local business that would like to participate, contact Roger ASAP.  We will supply each business with donor cards, posters, and information about the foundation that can be distributed to customers.  The business that raises the most funds by May 31st will win a team-building comedy workshop for their staff from Comedy Sportz Improv Theater valued at $1500!


PS You don't have to be an Ashland business to participate! 

FAQs about the Thumbs Up Ball

The Thumbs Up Ball is less than 2 weeks away! 
Do you have your tickets yet?


Over the last few weeks, we've received some questions about the event so I figured I would give some answers right here on the blog.  


What is the Thumbs Up Ball?

It's a family dance celebrating Valentine's Day! It's a great opportunity for the family to enjoy an evening out.  Plus, you will help your community. 100% of the proceeds from the event will benefit families in the Richmond area dealing with chronic and life threatening illness.  


When and where does the Thumbs Up Ball take place?
The event is on February 18th from 4:30-7 PM at Shady Grove UMC in Richmond's West End, 4825 Pouncey Tract Rd. 


What should I wear to the Thumbs Up Ball?
There is no official dress code. You can come in your fanciest party clothes or your most outlandish Hawaiian shirt.  If you have been looking for an opportunity to get dressed up for a night on the town, though, this is a great excuse.  Richmond Photographics will be on hand to take family photos for a nominal donation to CJSTUF. How often do you get the whole family looking spiffy in one place?


What will there be to eat?
Pepicelli's Pizza of Ashland has donated pizza and subs. Kelly's Cakes will be providing cupcakes and a cake as well.  We will also have coffee, tea, punch, and assorted snacks.  This is an alcohol free event.


What activities will be there for the kids?
We will have some simple craft activities for all ages.  Plus, musical entertainment from Offering will provide great opportunities to strut your stuff on the dance floor.  There will be something for everyone.


I've never been to a Silent Auction before. How does it work?
Local businesses have provided some great items for our Silent Auction. We have everything from homemade kid's clothes to yard tools to manicures, massages, and gift certificates from great local restaurants. Each item or package will have a starting bid (usually half the item's value). During the event, add your name and bid to the items you want.  At the close of the auction, the highest bidder wins! We have Silent Auction packages ranging in value from $35 for a ionic foot spa from Massage Within to $1500 for a corporate team-building training package from Comedy Sportz Richmond!


Do I have to bid on items in order to come to the event?
No. The Silent Auction and raffle are optional.  

Raffle? There's a raffle too?
Each ticket to the event will give you one entry into the raffle. You can buy additional raffle tickets for $1 each at the event.  We have a variety of raffle items including gift cards to local businesses and tickets to local events.


Should I bring money to the event?
If you wish to purchase family photos or bid on silent auction items, be sure to bring a little extra dough. We will be able to accept cash, checks, or credit/debit cards at the event.


Ok, you've convinced me. I'm in! How do I get tickets?
Go to the CJSTUF website and order tickets online. You can pay via credit card through our website or send a check within 3 business days.  


Will you have tickets available at the door?
Tickets are $10 in advance.  If we don't sell out, tickets will be $15 at the door.  


See you there!

Here Comes Big Sur!

Now that the Monument Ave 10K is over and I finished in the mind numbing time of 1:03:58, it is time I focused on the ultimate challenge of the season and that’s the Big Sur International Marathon May 1 near Monterey, California.

As usual, I’m FUN-raising for CJSTUF.org and I have a personal FUN-raising page to gather pledges! Please click here to support me in my endeavors. My goal is to raise $10,000 overall which will make CJSTUF ready for the 2012 year.

The wonderful part is that I’m not alone in this. Some very special people are helping to make it a successful event including Shelley Wilkinson, my very good friend from my college days at the Univ. of Northern Colorado, and the amazing people at the Children’s Hospice & Palliative Care Coallition.

Because of them, we will be using some of the money raised to benefit families right there in the Monterey Peninsula so PLEASE tell any and all friends, family, acquaintances anywhere remotely near the west coast to pledge a few bucks to the cause.

The 26.2 mile course has been modified this year from a one-way, “point-to-point” race starting in Big Sur and finishing in Carmel to an “out-and-back” course beginning “just before the Carmel River Bridge and heading south on Highway One. The Marathoners will start first at 6:45 AM, followed by the 21-Milers. The turnaround is yet to be determined but will be in the vicinity of Rocky Creek Bridge. The 21-Milers will tentatively turn around at Rocky Point Restaurant. On the return trip the Marathoners will take an approximate 1.7 mile detour through Pt. Lobos State Park before returning to Highway One.”

This is due to a 40+ foot section of Highway 1 falling into the ocean making the traditional course impassable. There are many people griping about not being able to run the traditional course but as I’ve never run it, the scenery should still be breathtaking both ways for me.

It’s also convenient for me in that they have extended the maximum finish to 6-1/2 hours. I have the feeling I’ll need every second of that! I will finish triumphantly; in last place but triumphantly!

I expect this will be my last marathon for a while as my knee is still giving me fits but I plan on running smaller races after a little PT and sports rehab.

Thank you all very much for your support. Please remember that Every Day Is A Bonus.

Roger

CJSTUF is born!

It's October!!! Can you believe that it is October???I am very happy about the weather lately. We have been enjoying it as much as possible. Today we are headed over to RMC for the women's Field Hockey game (go Jackets!). Charlotte continues to be a DREAM. We are finally (we've only been home for a month, can you believe it?) getting into something of a routine. Next week we start Velcade again and a new drug. So far so good. The physical stuff seems to be improving slowly too. Her energy is pretty low but she manages to make it through each day. She eats well and she sleeps VERY well at night. I can't ask for much more right now. A few notes of thanks: Thanks to the many families at Three Oaks Montessori who have sent us meals this week. We have eaten many of them already and our freezer is well stocked again. My mom leaves on Monday (boo!) so we will have a nice stash to tide us over. Fortunately, mom will be back in a few weeks (with Gramps in tow!). I think we are going to try to get the Hopecam going on a regular basis too with getting Charlotte to participate in circle time and other school activities. Fingers crossed.Roger attended Charlotte's first IEP meeting last week. What irony! I was supposed to attend but had my makeover session. It was a short meeting and they did initiate an evaluation so we are officially involved in the Special Education process. I'm glad I understand the system. I am hoping that this will enable us to receive some extra support with PT/OT services as well as ease our transition into Kindergarten next year. I haven't received any official numbers yet, but I know that over 211 people had been registered already for the ReeseStrong 5K and Sherry mentioned that about 100 registrations poured in between 9/30 and 10/1. Hooray! I know this will be a fun event!Of course, we are barely approaching Halloween but I'm sure many out there are already thinking about the Thanksgiving and Christmas holidays. I just wanted to go ahead and put out there that we do NOT need anything for Charlotte. Please resist your urge to buy us/her lots of presents. We have been so blessed by everyone's generosity and support throughout what has been a very difficult year. She has plenty of fall/winter clothes, thanks in part to hand-me-downs and gifts from the family. She also has plenty of hats to get us through the winter season and a beautiful coat (purple, of course!!). She also has more than enough toys, art supplies, stuffed animals, books, and blankets. If you truly feel the need to give, please give to one of the many organizations that have helped make this year bearable for us. These include: Connor's Heroes, ASK, Starlight Foundation, Friends of Jaclyn, HopeCam, National Children's Cancer Society, Caring Bridge, and Ronald McDonald House. St Judes is also always a deserving organization. I have a few items on my to-do list with which I could use some help. We are trying to push forward with the creation of Charlotte's Foundation (The CJ's Thumbs Up Foundation) as well as the accompanying website. If you have experience and/or knowledge in the area of the creation of non-profit foundations or if you would like to be a part of the formation of this organization, please contact me ASAP. We definitely need some resources and knowledge to help with the legal formation as well as determining what the scope and focus of our "way to give back" will entail. That's all for now. Hope everyone is out there enjoying this fabulous weekend!!!Rachel

Things are Going Very Well at Home

First off, Sorry about the lack of update. We are having trouble getting on to Caringbridge from home. Not sure why when the rest of our internet service at home works fine. Anyone have an insight into why that may be?

Other than that, things are going very well at home. Charlotte was extremely mellow yesterday and we kept an eye on her just to make sure she wasn't getting sick or something but she seemed fine. Her BM last night was very healthy!

As with the second surgery, she's now going through a bit of an "emotional" phase. Devon came by and spent some great quality time with CJ, snuggling with her, reading to her, and watching videos but she had a couple meltdowns when things didn't go exactly the way she wanted them. Like when the Sesame Street Halloween video ended. It took a moment to figure out exactly why she was bawling but we did and it's par for the course of recovery.

We went to Qdoba to get the official check for the burrito eating contest from Lisa. Everything added together, we raised $975! Thanks everyone who helped. CJ has such a following, the Army recruiter from across the parking lot actually came over just to see her when he found out she was there. A couple other people did as well.

We're very excited about the upcoming events at Romp n' Roll and in the surrounding community:

Our free week of preview classes has been received with a great deal of excitement and there are not many spaces left. I think the most vancies are with the babies class but we booked several of those yesterday.

The Ashland Strawberry Faire is looking to be a very nice change from this rainy weather. Forecasts call for partly cloudy skies with a high of around 81. Couldn't ask for a better outlook. We'll be there with face painting, crafts, and the bubble gun!

Rompy's Summer Concert Series kicks off on Thursday the 11th with Clay Mottley and the Taters. Food donations for the Central Virginia Food Bank will be accepted as well as donations for Charlotte's fund. There will also be a bloodmobile on site starting at 3pm.

Gotta go get ready for "Big Friday!"

Rog

As a followup to the last post:

There's now a sign-up sheet at Romp n' Roll for the Bloodmobile. Appointments start at 3:00pm and there's an average of 6 slots for every hour which equals 26 pints of badly needed blood. If you're available and eligible to give blood, please call the store to sign up. Think of it this way, after this, you get a 3-month break from VA Blood Services calling you every day to come in and give blood! :-) You're giving in CJ's name but not for her directly as she has mercifully needed very little. I'm sure, however, that that will change when we move into the next phase of treatment, whatever that means.

On another tangent...We're gonna pass 100,000 hits today!!! How exciting! You guys are amazing. Wish I knew how to save and print the page when it goes over.

I would like to paste an email I received from the father of a child who passed away from a brain tumor. They have a very active foundation and I would engourage you to learn more about what they do. I saw them featured on the Golf Channel while Charlotte was recovering from the last surgery.

"Reynolds family,

Thank you so much for writing on Payton’s blog and it is strange how these things happen to bring people together. Flipping through the channels late at night is something I know all to well about.

It sounds like your daughter is getting great care. We did the same as far as getting several opinions and ended up at Duke Hospital at the Preston Robert Tisch Brain Tumor Center. I was recently there and spoke to Payton’s doctor, Dr. Gururangan and he said they are working on a vaccine that may have helped Payton. I could introduce you to him if you like to see if your hospital is collaborating with Duke on any of their studies. M.D. Anderson is another top notch hospital. I have been invited to meet the president and tour their hospital soon and can’t wait.

Payton was first diagnosed with a PNET as well and after two weeks of collaboration between 5 different hospitals they determined it was a Medulloepithelioma tumor.

I know how you feel and what your family is going through so stay strong. That is an easy thing to say, but much harder to do. I don’t have any magic words that can make you feel better or to help you get through this. There just isn’t any. People always say I couldn’t do what you both did, I wouldn’t of made it through, I can’t believe how strong you are….many things along those lines…well you just do it. As you know, you just get through each day and take it on. There is no other choice. I am sure you have said to your daughter that you would take this cancer if you could. I said it every day. CANCER SUCKS. But you guys keep fighting because I am sure your daughter will.

Sorry if I didn’t make sense in this email or offended you in anyway. As much as I do it, it is still hard for me as someone who has lived through the horrors and seen the things you have seen to communicate with folks living through it now. Hang in there and let me know if I can help.

www.paytonwright.org"

I especially like the fact that many of the things in Mr. Wright's email are things we've found ourselves saying like "CANCER SUCKS!" I understand the last golf tournament they had raised over $70,000!

The ball is rolling again to get "CJ's Thumbs Up! Foundation" up and running. We hope it will be a "fun-raising" organization that will privide financial (and sometimes personell) assistance to individuals and other organizations that already do the things we were thinking of doing. We'll let you know when the tires hit the road.

So here's to 100,000 hits, the Strawberry Faire, and the Concert Series!

Thanks for everything past, present, and future!

Roger