We Still Mourn, But It's Different

It never really ends.  We think about our beautiful baby girl every day; several times a day.  Sometimes it's pretty much constant.

Our adorable little ladybug

Take Wednesday, October 31 for example.  Throughout the day, as many of our friends and family were posting photos of their kids' costumes and discussing preparations for the evening's festivities, we were constantly reminded of the four Halloweens we were fortunate enough to spend with Charlotte.  One of our strongest memories is of Charlotte's second Halloween when she dressed as a ladybug and was quite possibly the cutest thing that EVER walked this Earth!  We took her to Randolph-Macon College to trick or treat in the dorms and it was so amazing to watch her figure out that when she knocked on doors and babbled something, the smitten students would give her stuff.  It was the first time I felt that parental melancholy that comes with knowing she'll never be this small again.

This year, we set up our traditional table out by the street and had a great time handing out goodies and seeing all the kids and great costumes; all the while thinking of our little peanut.

CJ on Election Day 2008

Or take Tuesday, November 6.  Election Day.  This was always a BIG day for us.  Both of Rachel and I were determined to teach Charlotte about the democratic process and to encourage her to develop her own voice on whatever issues she would face as she grew into an adult.  We always brought her with us when we voted, even in the local elections.  I would schedule my day around when I would be able to take Charlotte to the polling place and often she would "vote" twice in a day.

She filled our thoughts as we participated in the 2012 election.

And now we head into the Holiday Season and a new round of memories are poised to take over, keeping the mourning front and center.

It never really ends.

And yet, it's a little different now.  There are more of those good moments.  Like last Thursday at the Lunch Bunch which CJSTUF  facilitates at Children's Hospital of Richmond at VCU in conjunction with Connor's Heroes Foundation.  The food was catered by Christopher's Runaway Gormay (SO yummy!) and we served 71 people a good, moderately healthy meal when they might have had to visit the vending machines or resort to paying for fast food downstairs.  We know from experience that is something families should NOT have to deal with while facing a child's health crisis.

We also meet new friends every time we serve meals which lets them know about resources and provides us more reason to continue to expand the program.


Then there was November 10.  I ran the American Family Fitness Half-Marathon (part of the Richmond Marathon) and Rachel did a book signing at an arts and craft show where she sold some books and connected with several supporters.

Saturday morning, I almost decided not to do the half-marathon at all since I had popped something in my knee last Monday and it had been hurting all week.  I wasn't sure if I could even finish the race.  Then, of course, when I thought of Charlotte and what all the other families have endured, I put my whining away and suited up.

Good thing I did because it was probably the most fulfilling race I've ever run!  I got a lot of extra motivation right at the start line when I saw a man wearing a t-shirt that read, "13.1 Is Still Easier Than Chemo." Amen, dude.

Throughout the event, my mind was full of thoughts of Charlotte and so many others whose paths we've crossed.  I thought of Abbie Waters as I passed her old school, I thought of CJ's Godparents as I passed their house, I thought of the Klauers, the Goodmans, the Hubbels...lots of others.  I met a woman within the the first two miles from Newport News who was running her first half and only the third time, "in front of people."  I fell in with a small group of people at around the halfway point, many of whom just happened to have leg and knee issues.  There was a lot of self deprecating humor being passed around but we all finished!  And all along the way, were the occasional shout-outs to CJ's Daddy (on my bib) or Team CJ (on the shirt) or people who recognized me and shouted encouragement. I can't tell you how much that helps!

Kristin Mudd's Funky Shoes

Kristin's Funky Shoes Flipside

I finished (the main goal!) in about 2 hours and 40 minutes, the knee held out, and crossing the finish line, I let out a "WHOOP" like I never have before.  It was a great moment.  Then I caught up to Kristin Mudd and her funky shoes!  It was her first half EVER!  Kudos to her.





And CJSTUF continues to grow.  Thanks very much to Rachel's very capable Executive Directorship, our wonderful board, and support from the Network, we are having a tremendous year of fundraising and providing resources to our families.  We just had a very productive Strategic Planning Session and we have homework to do, after which, we will be ready to take a step up to the next level of operation for 2013 and beyond.

At Positive Vibe Cafe

So the therapy continues and, quite possibly, it's working.  Maybe.  Just a little.

The Week Of Chaos!

As Childhood Cancer Awareness Month continues, we are having another typical week in the life of CJSTUF.org!  Lot's of stuff going on.

1) Groupon Grassroots:  Recently, we were awarded a Groupon Grassroots Campaign during which $10 donations are taken to help fund one Lunch Bunch meal for the families being treated up on the 7th floor of Children's Hospital of Richmond  (This is our meal program for which we have teamed up with Connor's Heroes Foundation). The campaign is live through Sept. 23rd and is taking $10 donations right now. The "tipping point" is $300. It's difficult to imagine that we wouldn't reach that amount but if somehow we don't, then the funds raised up to that point are not distributed and no one's credit card will be charged. If nothing else, we get exposure and experience.

If  the tipping point is reached, which it will, then the Lunch Bunch is guaranteed one more event.  We hope we end up with several.

2) The Amazing Raise: This is an exciting, 36-hour fundraising event being hosted by The Community Foundation/GiveRichmond.org.  It begins Wednesday, Sept. 19 at 6:00AM (we'll post the link as soon as we possibly can after it goes live at 6:00:01AM) and ends the next day at 6:00PM.  There are MANY creative ways to win matching funds and CJSTUF will be aiming for three specifically.

The first is the 50/50 Early Bird Match.  The first 15 organizations (and there are dozens) that receive 50 unique donations of $50 will receive $2,500 matching grants from the Community Foundation (That's FIVE families helped).  So please plan to wake up early and help us capitalize on this opportunity.

The second is called "Midnight Madness."  Simply put, the donation (of at least $25) that comes in closest to midnight on Wed night will receive an extra $1,000 (2 families).  We will be having a wildly fun karaoke party at ComedySportz in Richmond starting at 10:00PM and when midnight approaches, we will countdown to zero and get everyone to push the "send" buttons as close to 12:00 as possible.  YOU are invited.  Come stay up late on a school night.  You know you've always wanted to!

The third focal area is the "Lunch Break" on Thursday 12:00PM-2:00PM.  The organization that receives the most unique donations of $25 or more within that time frame will win $1,000 (2 more families helped).  We will be lunching at Pepicelli's Pizza in Ashland during that time and any donations that come in throughout the Lunch Break will be applied to the Lunch Bunch.  (Pepi's, by the way, just happens to be CJSTUF's Business Of The Month for September; another great reason to come in!)

There is a fourth area that we think we could win and that's the Long Distance Donor Award.  The donation that comes in from the farthest point on the planet (determined by billing address of the card used) will earn the non-profit $1,000 (2 MORE families)  The Network is pretty widespread and if the right people donate (all you in Europe,  New Zealand, Australia, Japan, Malaysia, Africa, China, Korea, etc... know who you are!), we could win that one as well.

Last year was our first experience with the Amazing Raise and with very little effort, you helped us raise just over $1,000 (2 families).  This year, if we win only one of the contests at which we're aiming, we'll more than double that.

3 and 4) Rachel still continues to hold her own in the two voting-based contests.  The Eagle Rare Life contest has her at 4732 at this writing and we have no way of knowing how well she's doing in the Lady Godiva Program.  Just keep voting every 24 hours and we'll let you know something when we do.

5) The "Every Day Is A Bonus" Fall Art Auction is coming up on Friday October 19th.  We've already started receiving reservations and artist donations, some of which are pretty amazing.  There will be live and silent auctions featuring paintings, photographs, children's art, stained glass art, arts services and an interactive experience where live artists will be creating pieces right there in front of everyone. And don't forget the chocolate dessert bar! If you'd like to reserve your place, click here.

6) Did we mention that Pepicelli's Pizza is the Business Of The Month for September?  We won't have a BOTM for October due to the Art Auction.  We'll let you know about Nov. and Dec. as we get closer.  This post is long enough already!

We'll rest in January.

Board Member Spotlight: Tom Checkosky. Co-Owner of Pepicelli’s Pizza Ashland

Board member since: January 2012

Tom and Lisa Checkosky

“I don’t believe in coincidences.” Tom Checkosky will be the first person to tell you that he’s here (meaning Ashland) “by the grace of whatever it is you want to call God.”  Checkosky used to be operational partner for 7 Domino’s Pizza restaurants in Western Pennsylvania. He started out as driver, became manager, worked his way up the ladder, and then left.

Before the recession hit, he was a regional manager of Best Buy for three days until the economy made them cancel plans for 10 new stores.

Then, after almost two years out of the food sector, he went into a local Pizza Pan restaurant to pick up an order and then proceeded to reconfigure the entire kitchen for the owners who seemed to be having “organizational issues.”  This lit the fire within Tom to get back into the pizza business.

Pepi seriously enjoys summer!

After an exhaustive search, Tom stumbled onto a pizza place for sale in Ashland, Virginia.  The landlord gave him a great deal on rent and even paid to move his store when Smokey Pig Catering left the space next to Ashland Ace Hardware. Other local residents wowed Tom with kindness, dinner, and good advice.  "I'm from up north.  I'm not used to people being nice to me without there being some kind of ulterior motive. I was sold."

And so Pepicelli’s Pizza of Ashland was established.  This was in 2007 and they are about to celebrate their 5th year in business.

Tom with Jimmy and Ani

Tom brought down his wife, Lisa, and two kids, Jimmy and Ani and they've been here ever since (EVERYONE helps at the store when necessary).

"Something always seems to happen every couple of years or so to make us move or whatever.  We've been in Ashland five years and it hasn't happened yet.  I'm convinced that we're supposed to be here."

The Checkoskys (and Pepicelli's Pizza) are active throughout the Ashland community via MAP, the Ashland Street Parties, and several other activities.

Through a strange series of “non-coincidences,” the Checkoskys became aware of CJ’sThumbs Up Foundation and were touched by the Reynolds’ story.  Tom was so moved that he decided to do everything he could to help make CJSTUF successful and even quit smoking as a result of his involvement with the Foundation.

Pepicelli’s Pizza donates meals to The Lunch Bunch (A joint effort between CJSTUF and Conner's Heroes Foundation to feed the families on the 7^th floor of Children’s Hospital of Richmond) and was the Business Of The Month in May of 2011.  They will be the BOTM again in September, donating a portion of the month’s sales to CJSTUF.  On Monday, September 24th, CJSTUF co-founder Roger Reynolds will be delivering pizzas to Pepicelli's customers who add a small donation to their order.

Tom has dived into his CJSTUF participation with both feet and has become one of our most enthusiastic supporters.

Which is why we wanted to know the answers to:

4 and 1/2 Questions!!!

1) How often do you eat pizza made by another pizza place?

Answer: “Only on vacation and only mom and pop places.  Leonardo’s Pizza in the Outer Banks is a particular favorite as well as Causeway Pizza in Garden City Beach, NC.

2) Can you describe an atom? (I stole this from a website on interview questions)

Answer: “He’s the husband of Eve.”

(smart aleck)

3) How much taller than you is your wife, Lisa?

Answer: “5 inches.”

4) What animal, that you don't currently have, do you want most of all right now?

Answer: “I want either a big bird like an African Grey or a Cockatoo or a big dog (even though I already have two of each).”

and

1/2)  Don't you just love it when...

”employees don’t show up for work?”

Answer: “Yes I do!!!”  (There may have been a touch of sarcasm in his voice)

Visit www.pepicellis.com for information about Pepicelli's Pizza of Asland.

May is right around the corner

It feels like a lifetime ago. On May 1, 2009, we were entering our third round of inpatient chemo. Life at that time revolved around the hospital. In fact, we felt like MCV had a literal revolving door between regular and unplanned admissions. This round started with an MRI...scheduled earlier than usual because Dr. Khan didn't really like what he had seen as a "shift" in the previous scan.

On May 1, we started to face the reality. That was when we realized that it might not work. The tumor was still growing. Despite the toxins pumping into her system. After that, everything snowballed and by the end of May, we were meeting a new team at MD Anderson.

Like I said...it feels like a lifetime ago.

Yesterday, my mom and I attended the annual memorial service for children who have passed away that were served by VCU Children's Medical Center. It was a very simple, lovely service of remembrance led by the team of Child Life specialists and chaplains at the hospital. The theme was kite flying and I was thrilled to learn that ASK chaplain Jim Bonomo's inspiration for the kite theme was Charlotte's memorial service. Another kudos to Mary Poppins! (Slight aside...I'm typing this at romp n' roll and Jolly Holiday is playing over the speakers during Open Gym.) Anyway, the event was another time to remember Charlotte. Some of the nurses and other specialists who had worked with us during our time at MCV were there and so was Miss Monica, the nutrition services staffer who frequently brought us meals on 7 East.

The memorial service aside, it's been another one of those emotionally charged weeks. There's all kinds of reasons. My emotions seem to wax and wane as it is. Couple that with the timing of my parents visiting from Florida...they haven't been here since Charlotte passed

...the oncoming media glare of Mother's Day (Yes, it's coming. Please stop reminding me, members of the mass market media.)

....and then just the activities of everyday life. I think of her every day. And I miss her.

BUT there is much to do and much to report.

First, I want to direct you to the RichmondMom website. The Super Mom contest is running again. Our good friend Megan Blake won last year with the support of many in our network. Then Roger won the Richmond Dad contest. This year, we have several friends who are nominated. Some of our favorites:

Sherry Klauer: Mom to Reese (and Rhett and Wade) and founder of ReeseStrong
Lisa Goodwin: Mom to Connor and founder of Connor's Heroes
Jennifer Morris: Mom to Rosie and Kellan, a constant cheerleader for all her kids endeavors and constantly positive through many challenges.

Voting ends April 30th. You can only vote once but please visit the website and make your choice. There are many other great moms nominated as well.

Other events coming soon:
The Chick-Fil-A Cow Drop is on May 8th. I will be at the Virginia Center Chick-Fil-A on Tuesday evening, 4/27, selling Cow Drop tickets for CJSTUF. Come on out for Kids Night (Kids Eat FREE!) and a mini concert from Silly Bus! The concert will be from about 6-7 PM. You can also buy your Cow Drop tickets at the Virginia Center Chick-Fil-A anytime before the Cow Drop on May 8th. CJSTUF gets $6 for every ticket bought!!!

The Mechanicsville Moms will hold a Used Book Sale at Romp n' Roll on May 6th from 3-7 PM benefitting CJSTUF. This is during Open Gym time so come on out and find some great books and videos. There will be media for all ages!

Be sure to check the website regularly for other fundraising updates and events.

For anyone wondering, the romp n' roll move to Mechanicsville is moving along well. Everything seems to be going according to schedule. We just started painting this week. Summer registration starts on Monday (there's my plug) and we are looking forward to the new space!

Have a good weekend, everyone. Might be a wet one if you're in VA. Hopefully the ASK 5K won't get too rained out.

Diggity Good Fun!

Scott Milstead (formerly of Carbon Leaf and majorly good drummer) has a new project playing family friendly music. Here's a letter he sent out about an upcoming benefit for Connor's Heroes and since we love Connor's Heroes, we encourage everyone to participate!

Well, it's happened...

... I'm in a kids band.

I tried to resist it but the temptation was just too strong. And besides, regression is a strong suit of mine, so why not?

Please read on!


We hope everyone is thawing out from the recent snow and wanted to let you know about some very exciting stuff happening in Diggity World.

Many of you may not know us, but we are The Diggity Dudes, playing Hip Music for Hip kids (www.thediggitydudes.com). While most of you have been huddling around the fireplace and watching the snow melt, we've been hard at work rehearsing new songs as we get ready to record our debut CD in just over a week. Diggity Mike & Diggity Donny have recruited Diggity Scott to join the band on drums & percussion as the third fulltime Dude, while a host of other musicians are lined up to round out the music in the studio (Scott Duncan formerly of The Venture Rays on bass, Houston Scott of the Houston Scott Band on Harmonica, Sara Gleason of the Velvet Marias & Karen Lynn on back up vocals just to mention a few). The CD should be available in late spring and is going to be a Diggity Biggity Deal.

Of course we can't sit idly by and let our music go unheard, so on March 6th you're going to have 3 (YES THREE) chances to see us. First, we'll be playing in the Northside, at the 10th Annual Linwood Holton 5K, followed by a noon performance at The Diamond for the Flying Squirrels First Annual Family Festival. Then we wrap up the night with a huge full band benefit show at The National to support Connor's Heroes. Over the next few weeks, look for The Dudes in Style Magazine and appearing on Channel 6's Virginia This Morning promoting this epic day of events and great causes.

If you would like to support The Diggity Dudes, you can purchase tickets for The National from any "Dude" for only $10. This is an all ages show, and we take the stage at 7:00, so you can bring ALL YOUR LITTLE ONES and help us "Jump In The Air". The bill is headlined later by The Houston Scott Band, and all proceeds go to Connor's Heroes (www.connorsheroes.org) to benefit Childrens Cancer research.

Please pay our site a visit, or catch us on Facebook at The Diggity Dudes. Please, leave us a comment, and tell all your friends to support us on March 6th.

Thanks,
Diggity Mike, Diggity Donny & Diggity Scott

We're also in the early planning stages of a pasta dinner party the night before the Monument Ave 10K as a joint shindig for CJSTUF.org and Reesestrong.org. First thing we need is to get people to cook and/or provide the food. We'll have it in a location with a kitchen so noone has to risk losing any Pyrex or Pampered Chef. The more provisions we get donated, the cheaper it will be and I would love to provide it free to FUN-raising members of TEAM CJ and Reesestrong. The menu will probably be Spaghetti, garlic bread, good salad, tea, chocolate milk, and beermosas. We might add other things as time goes by. The purpose of the pasta party isn't to make/raise money but to celebrate community and carbo-load for the race.

After the Thumbs Up Ball on Saturday, we'll start taking reservations for the pasta party. (By the way, have you bought your tickets to the ball?)

Anyone want to chair the Pasta Party Planning Committee? I'll chair the Pasta EATING Committee! :-)

Romp n' Roll is open, the sun is actually peeking out, and I have new, free musical software toys with which to play.

Our friends from Colorado, the Goerolds, are in Bethesda and Allie started her experimental protocol a couple days ago. Very interesteing drug that seeks out a protein particular to her type of leukemia and then releases a toxin that attacks the cancer cells. Some serious smarts behind that one. Drug companies = 1

Now if they would spend as much time and money on that as they do on helping old men keep it up, cancer would be a footnote. (Woah, was that out loud? Guess so.)

Anyway, those of you in the MD/DC/NOVA area might want to look them up. They have family around but I'm sure a little extra help of any kind would be appreciated. Rachel and I might try to take a quick trip up.

We also have a newer member of the CANCER SUCKS! club. Her name is Kayla Webb and her family is from my dad's neck of the woods in Tennessee. They're now in Houston for proton beam therapy at MD Anderson. Please think good thoughts for them and if you're in the Houston network, please reach out to them.

That is all.

Rog