Three Years (Pt. 1)

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

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

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

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

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

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

Love,

Roger and Rachel

Charlotte Jennie's Grownups

Some VERY quick announcements!

Roger will be wrapping gifts at the Chesterfield Towne Center Barnes & Noble from 10am-2pm today!  There are other dates as well and some need a volunteer or two.  You can go to the website and sign up if you'd like to help out.



Today is also "Cyber-Monday" so please surf the web on over to HandmadeHomies4CJ which is our Business Of The Month for November.

If you are planning travel in the next year and can wait to book until February, the BOTM will be right up your alley.


Rachel and Roger will be travelling to Tiffin, Ohio this weekend for a multi-pronged event at Tiffin University.  Roger will be guest-performing at the annual "Christmas At The Ritz" concert on Saturday, Dec 1 and MIGHT be doing a vocal improv clinic for the students.  Rachel will be doing a book signing at the TU Bookstore as well.

The concert is a fundraiser and CJSTUF will be one of the beneficiaries.

Besides Black Friday and Cyber-Monday, another new trend is "Give Back Tuesday" where people are encouraged to donate to the charity of their choice.  Here's the DONATE button.  Why wait 'til Tuesday?

From Laughter to WINE-ing and Back to Tears

First the laughter…

We definitely know that laughter is very therapeutic.  And slightly lucrative for non-profits. Rachel and I have become involved with ComedySportz Improv Theatre of Richmond and throughout the month of June, they let CJSTUF take over during halftime of every show in order to play “Stick The Butterfly To The Flower.”  People bought little paper butterflies with sticky dots on them for a few bucks and for some crazy reason, allowed us to blindfold them.  Then they tried to stick the butterflies to a big flower on the wall.  The butterfly that ended up closest to one of the numbers on the flower won a prize.

Just that little game garnered over $300 for CJSTUF.

On top of that, during the last weekend of June, $2 of every ticket for the Friday night and Saturday early shows were donated to CJSTUF.  We don’t have a final tally yet but we’re confident that overall, we raised enough to help one family.  Thanks ComedySpotrz!

Now for the WINE-ing…

This month, our Business Of The Month is really only it for one day but it’s a doosie!  Kate Hall over at RichmondMom.com has developed a tremendous relationship with the Wine Loft in Short Pump and the first Wednesday of every month is what’s called the Wine Down where a local non-profit benefits from ticket sales, raffles, and other donations.  They’ve raised as much as $900 during these events and the last time CJSTUF was the beneficiary of a Wine Down, it was the largest event they had had up to that point.  We’re hoping to set another record on the 11^th.  It is certainly possible because this year, an anonymous donor has offered to match donations if over $500 is raised at the event.  How's that for incentive?

Yeah, it’s not the first Wednesday but the whole July 4^th thing got in the way.

Tickets are $10 and include a raffle ticket (more available for $1 each), appetizers, and discounted wine.

The Wine Loft of Richmond is located at 4035 Whittall Way, Glen Allen, VA 23060 right next to Spirited Art (which just happens to have been our BOTM for May).  Festivities will get underway at 6:30 and you are strongly encouraged to arrive early.

Time for the BONUS ROUND!

Rachel has surpassed the 1200 vote mark in her quest to repeat as an Eagle Rare Life grant winner.  This year the grand prize has been increased to $30,000 to be donated to the charity of the winner’s choice and we feel confident that we can win it this year.  Last year’s secondary prize is helping to fund the new Lunch Bunch at MCV/Children’s Hospital Of Richmond for which CJSTUF has partnered with Connor’s Heroes Foundation and local restaurants to provide meals for the families of children receiving treatment on the 7^th floor of VCU’s Children’s Hospital of Richmond.  $30,000 would take care of a lot of meals.

People can vote once every 24 hours here.  Please set your alarms and spread the word.

So we come back to the tears.  It always seems to happen about every 6 months and July is very tough for us.  This 4^th of July weekend, we are traveling to Tennessee to visit my dad and have something of a small family reunion.  Rachel also has two book signings this weekend in Morristown at JavaGarden on Saturday and my dad’s church on Sunday (gotta take the opportunities when they happen).  Then we head back to Richmond to face the 9^th and think about our beautiful baby girl on her 7^th Birthday.

With every success that comes to CJSTUF, we are given a little solace.  The latest drop comes from knowing that because of Rachel’s initial book sales, we’ve been able to fund one family’s financial assistance grant.  That’s YOU, Network.  Because you have purchased books, because you voted Rachel into an Eagle Rare Life Award grant, because you donate what you can, when you can, we are able to fulfill our Mission which helps us to deal with things like July 9 and allows us think of Charlotte without curling up into

a fetal position.

And speaking of fulfilling the CJSTUF Mission, 10 Financial Assistance Grants totaling ($5,000) went out in the mail today.  You again.

So thank you for the world’s largest coping mechanism.  Thanks for just being there for us.

Don’t forget to love on your children.

I’ll take that glass of wine now.

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.

Oh! The Chafing!

At the risk of slighting those of you in the “over 21” age range, I am rarely inspired by grownups anymore.  Not that grownups don’t do amazing deeds all the time, it’s just that on average, those deeds pale in comparison to what “our kids” achieve daily.

Len on the road

                This weekend, I was inspired by a grown up.  His name is Len Forkas and he (along with many others) got on a bicycle in Oceanside, California and pedaled nearly 3,000 miles across the United States, all the way to Annapolis, Maryland in what was called the Race AcrossAmerica.  Not only that, he won his division (50-59 years old) and placed 10^th overall, edging out riders much younger than himself.

                Len had a bucket load of inspiration as he was using the event to fundraise for Hopecam.org, the non-profit organization he founded that connects homebound children undergoing treatment for cancer, and other life threatening illnesses, with their friends, families, and schools using laptops, high speed internet, and web cameras.

                Charlotte received a Hopecam notebook computer while she was undergoing treatment and we used it for Skyping, emailing, writing Caringbridge updates, and most importantly, for the Reading Vigil. We played recordings of friends/family reading books to CJ and people Skyped in from all over including our friend, Dr. Karen Massar who, while sitting in The Netherlands, read to Charlotte in Dutch.  It’s still one of the most beautiful things I’ve ever heard.

                One of the methods employed for keeping the purpose of the ride front and center (not to mention keeping Len pumped and focused), was to dedicate each day of his ride to one of the many children who have benefited from Hopecam’s endeavors.  On that day, Len would be read descriptions of the child as he rode. Charlotte got day 8 and a video dedication.

They also invited Rachel and me to Annapolis to be among the cheering crowd as Len crossed the finish line.  The wonderful people at Hopecam, including interim Executive Director Jennifer Bond, took very good care of us, paying for the room at The Doubletree Hotel and breakfast Sunday morning. When it became clear that Len was going to get in much later on Sunday then they had anticipated, they offered to pay for another night at the hotel so that we could stay and still see Len cross the “FINISH” line Sunday evening.

We didn’t mind since Annapolis is a beautiful town and was calling out to be explored by us. We figured we could leave early Monday morning in order to get Rachel to work in time.

So after a full day of walking, we settled at the courtyard into which the cyclists would be riding and waited.  There was a rather long time in between finishers which gave us time to network with people in the Hopecam crowd and with other riders’ crews.  One Canadian rider, nicknamed “The Hammer,” actually got hit by a car in Arizona yet was relatively uninjured and finished the race in ninth place overall.  One member of his crew had the torn up jersey he had been wearing at the time of the crash and waved it as he crossed the line.  There are many other stories and not nearly enough space.

Len hoisting his bike in celebration

We finally got word that Len was on his way and the large Hopecam crowd excitedly gathered around the finish line.  When he came around the corner in the dark with his various lights shining and blinking like a big rig on the highway, the crowd went nuts, us included.  When he got off that bike and immediately bent down to greet all the children who were assembled up front (and there were a LOT of them), it showed, even in his exhausted state, where his priorities lay.

Shannon

Soon, the emcee brought Len on stage to receive his medal, given to him by two time survivor and Hopecam beneficiary, Shannon Eastman.  Len wasted no time making sure everyone knew who the star of this event was.  “I just finished the toughest bike race in the world but it’s peanuts compared to what Shannon has had to do.” With Shannon standing close on the stage, he said, “I could stop at any time, Shannon couldn’t.  She had to finish.”

Throughout the evening, I found myself wondering over and over again, “How can I do something like this?”  It wouldn’t be easy.  Just thinking about the amount of time and effort it took to train Len, assemble the crew, plan who was going to do what and where, not to mention feeding everyone, is enough to make a lot of people quit before they even begin trying.

Roger, Len, and Rachel

But you know us; especially when we’re inspired.

Anyone wanna go for a bike ride?

Moving Forward

              

Our New Logo

Can’t do much else can we?  As Bruce Barton said, “When you are through changing, you are through.”  We’re hardwired to keep moving forward; to continually try to make our situation better even though sometimes all we do is repeat the mistakes of the past.  But move forward we must and that is what we’re doing here at CJ’s Thumbs Up Foundation (hopefully not with the whole repeating-past-mistakes thing).

Thanks to our generous Network (that’s YOU, generous reader) we’ve had a very good first half of the year.  Revenue is exceeding expectations due to increased donations, more successful fundraising events, and the release of Rachel’s book, Four Seasons ForCharlotte: A Parent’s Year With Pediatric Cancer.  It seems that so far, we have been doing things the correct way and our mission is being well-supported.

The Cover of Rachel's Book

                With all that in mind, it’s time to take some more baby steps forward.  This year, we will award a total of at least 25 financial assistance grants.  This almost doubles our impact from 2011 (so maybe “baby steps” is too conservative a term).  We also have plans to expand our Board of Directors and have welcomed some extremely capable members to the current board.  Our fundraising initiatives like the Butterfly Socials, the Thumbs Up Ball, and the Fall Art Auction continue to evolve into our primary annual events and we continue to seek ways to improve upon the last event’s success.

We are also modifying our online presence a bit.  In the near future, you will see more regular (weekly) blog posts covering various aspects of CJSTUF.org.  We are currently gathering stories and profiles of our Board of Directors, staff, local medical professionals, events, partnering non-profits, and most importantly, the reason we exist - our families.  We will spotlight these courageous families in an attempt to inspire the reader to do more, to dig deeper, or simply to help the healing process by making the families aware that they are not alone in their struggle.

You will soon be seeing small updates (in both look and function) to the website and social media outlets to include software upgrades, calendars, new widgets, and more efficient ways to keep up, and become involved, with CJSTUF.org.

One thing we are NOT changing is the mission.  We will also never forget the curly-haired, sweet-voiced little girl whose strength and courage is the inspiration for what we do every day. (We still miss you, Charlotte!)

It’s an exciting and bittersweet time for us here at CJ’s Thumbs Up Foundation as we continue to move forward, or as Jonathan Agin signs off of daughter Alexis’, Caringbridge posts, “…we are one day further, yet one day closer…”

We are so thankful to all who are helping us make unbearable situations a little more bearable.

Here In Monterey! (Seaside, Actually)

Rachel and I arrived in San Francisco, CA very late last night (in the wee hours of the morning, truth be told) and were promptly picked up and carted away by Shelley Wilkinson, our most gracious host, chauffeur, cook, and tour guide (not to mention West Coast Chairperson for TEAM CJ). We wasted no time completely collapsing into bed when we got to her and husband David’s house in Seaside but my body wouldn’t let me sleep past 6:00am Pacific Time (which is 9:00am Eastern) so it was another short night.

I’ll be napping as soon as I get done with this post!



Rachel, Shelley, and I went down to Monterey to check out Cannery Row, scope out wineries in the area, and find lunch. If you find yourself out here, I strongly recommend you stop off at the Pacific Grove Chamber Of Commerce Visitor Center across the street from the Science Museum and have them tell you stuff. They love to do that kind of thing and will give you awesome coupons to use at area establishments; like free appetizers at local restaurants, discounts for whale watching (might use that Monday), and maps. (I LOVE MAPS!!!) They also have a statue of John Steinbeck and Rachel couldn't help flirting with one of her favorite authors!

We used said coupons at a place on the bay called Fish Hopper Seafood & Steaks and had a VERY yummy lunch that included clam chowder in a sourdough bread bowl (almost can’t come out here and NOT get that at least once), calamari, and artichoke heart. Rachel had fish, the name of which I can’t remotely remember (I had never heard of it before but it was good!).

We ate outside on a deck overlooking the bay and watched the waves come in and out and various birds do the same.

Then we headed around the bay to get a look at the “beaches” and snap some pics of the water smashing against the rocks but we didn’t stay out long as it is unseasonably cool with a brisk wind that made it a bit uncomfortable to be out for too long. What was amazing was what looked like this pink creeping flox (although I think Shelley said it wasn’t flox) covering a good portion of the hills up from the water. The blanket of pink wrapped all around the southern point of the bay and was striking to say the least.

Rachel was strongly reminded of the day we were in Daytona Beach after Charlotte’s Make-A-Wish trip to Disney World and CJ was sitting in a chair on the balcony all day, just enjoying the peace of the water. We asked her if she wanted to come in several times but she was comfy and we let her sit.

I agreed with Rachel and that photo is my Facebook profile pic again for a while.

Next was the short trek to the Fitness Expo to pick up race packet, shirt, and bus pass for the marathon on Sunday. It’s a smaller race overall (if you can call 13,000 participants small!) which translated to a much faster check-in experience. Strange but I was actually wanting more of “The Gauntlet.”

On an aside, here's a video of some of what we're in for.

Tomorrow we will join up with James Staudte and family for a day of Aquarium exploring and carbo-loading later at Shelley’s house. Some of the staff of the Children’s Hospice and Palliative Care Coalition will be coming over to the pasta-party and we’ll be presenting them with a check for 25% of the funds we’ve raised so far. Donations are still coming in and we’re so grateful to everyone who has helped.

Speaking of that, time for another bit of a family story:

“Yulisabel (Yuli) is a 3 year old with Acute Lymphoblastic Leukemia (ALL). She routinely needs rides to treatment (a considerable distance) as her father works and is the main driver and supporter for the family. She has a 4 year old brother and they live with 3 other families in a house on the outskirts of town. They share one bedroom.

Yuli loves to listen to the radio. Her mother also has music on her phone and she puts it up to her ear and this young girl is mesmerized. Her mother has recordings of her son singing and Yuli making noises around the house which keeps Yuli happy during the long rides to treatment.”

Yuli’s is one of four local Monterey Bay area families who will benefit from TEAM CJ’s FUN-raising efforts this week. We always like to say that we aren’t finding a cure but we are helping to make an un-bearable situation more bearable. Please don’t forget that YOU are a big part of that “WE.” CJSTUF couldn’t do it without your help.

Wanna help some more? Demand for what we do has increased dramatically this year as word of our mission and success has gotten out. We are already on track to receive double the number of applications we received last year and we would like to fund them if possible. If you’ve donated to any of our events, that’s wonderful and we’re not asking you for more. We ARE asking that you tell your friends and families about us and see if they’ll send us just 4 bucks ($1 for every year of Charlotte’s life) or a multiple thereof: $8, $12, $16, etc… You’d be amazed how it adds up. Here's the link

As usual, Rachel and I can’t thank you enough for helping to keep Charlotte’s legacy alive so we can “take care of the living.”

Love on your little ones like there’s no tomorrow.

I’ll blog atchya later.

Love,
Rog

p.s. Finally: Good luck to all doing the ASK 5K tomorrow morning. Our thoughts are with the Parents of Lois and Abbie as they begin their own marathon

Charlotte's energy is better but still not great.

Again, we apologize for the delay in posts but there hasn't been too much to say over the last few days. Charlotte's energy is better but still not great. She gets tired very easily. 45 minutes of OT on Monday pretty much wore her out. She loves to very dramatically wipe her hand across her forehead and say "Whew! I'm TIIII-RRED!" (What a drama queen!). The shakiness in her arms and legs still seems to be present and may actually be a little worse. Her OT and I discussed it on Monday and she has a few ideas for therapy so we'll see what happens. Based on my research, seems that Valproic Acid can cause tremors too so don't know if that's related. She has been having a great time with Granny and Gramps. Granny has become the Resident Reader, keeping Charlotte engaged with book after book. Anybody remember the Sweet Pickles series? Well, my mom had bought these books for me and my brother when we were young and loved them. She had given them away a long time ago but recently found a FULL set on ebay or amazon or something and ordered them for Charlotte for her birthday. Charlotte LOVES them. Granny reads them over and over again, interspersing library books and other stories along the way. I LOVE the fact that my child loves books. Some kids sleep with stuffed animals. My kid falls asleep with piles of books in her bed. It warms my heart, I tell you!Her appetite is good and regularity is not an issue. Hooray. Scanxiety is in full effect. It's just there. Can't be helped. The countdown begins (less than two weeks). I keep trying to push it aside. Can't do much about it till we're there. But it's definitely hard to NOT think about it. It's only Tuesday and it's already been a fun week at romp n' roll. Winter registration has started (have you registered for YOUR winter class yet?) and we have been having fun with our Halloween costumes. Today, i was Super Grover. Yesterday, Roger was Count Refula and today he was a Pirate (someone called him the Jolly Roger...CUTE!). We are so grateful to my parents for their presence here. They are taking care of all things domestic for us including having meals ready, trimming the garden, raking leaves, and cleaning the house. Not to mention caring for Charlotte so that we can focus our efforts on the business when needed. We will miss them when they go...I guess that's all I have to say for now. As you can tell by the time of the post, I'm having a bit of trouble sleeping but at least I'm being productive in giving you an update. Off to bed...

Hooray for poop!

Quick update:CJ pooped (twice) yesterday. Hooray for poop! She was in bed pretty much all day but we had the IV fluids going. She also ate a little bit for us so we are feeling much better about her overall health. Last night Roger gave her the first dose of the valproic acid. We also had to give Pepcid with it as it is supposed to cause stomach upset. I was kind of amused by the fact that both the valproic acid AND the pepcid have "may cause dizziness" on the prescription label. She is going to be one dizzy chick! I guess that's why we give that medication right before bedtime!This morning she was up and at 'em kind of early so Roger and I could go to our various activities. She has a playdate over at the Hayes house this morning so I am hoping that she will be able to actually engage in some interactive fun rather than just being a bump on a log. We shall see. Off to a busy weekend!Rachel

Thanks to everyone who sent me encouraging notes and thoughts after my last post.

Thanks to everyone who sent me encouraging notes and thoughts after my last post. I do appreciate it. I know I need to give myself a break and try to take things one day at a time. It's a struggle. It actually helps just to vent and lay it all out here on CB sometimes. Wow! The last few days have been SO busy and I don't see the pace slowing down any time soon.Roger and Charlotte left for NM/CO at about 4 AM on Friday. Roger has not posted pictures or an update yet because they have kind of limited internet access where they are, but I understand they are having a great time. Charlotte was (as usual) a great traveler. They were on 3 planes (Richmond --> Atlanta --> Denver --> Durango) so it was a long travel day on Friday followed by the Head Shaving Party where Aunt B lost her locks. I'll let Roger provide the details.Meanwhile, back at the ranch, I was teaching my tail off at Romp n' Roll Friday morning. Then my mom, Kolbey, and I had lunch at Casa Grande and I went back to RNR for the afternoon shift. Home for a light dinner at 8 PM, watched a movie and went to bed. Then back up this morning to teach. Home to do some "domestic stuff" and I will be going back to work this afternoon for an evening private event at RNR tonight. THEN I get to teach Roger's classes tomorrow morning, work a 4 PM birthday party and then drive to Lynchburg. I'm presenting at the Central Virginia Training Center's annual conference. Two presentations each on two days (one on Music Therapy and Autism and another on Augmentative Communication). They are both basic presentations on topics I've presented many times before so I'm not that nervous. Kind of excited about putting on my therapist hat again. I was asked to do this back in March or April and that seems like SOOOOO long ago. It's also a paid gig, so that's a nice plus. I'm just not enjoying all the coordination that goes along with it. Having Roger and Charlotte out of town for the weekend (and overlapping on Monday as they return from Colorado) has taken a bit of extra energy and coordination.Anyway, I no sooner return from that event on Tuesday then we're back into RNR schedule and Charlotte's appointments to the doctor, child study meetings, therapy, etc. I'm feeling a little harried! Thank goodness my mom has been here to provide some relief. So I just wanted to give everyone a quick update before I get a nap and head back to work. More news to follow...Rachel

Ok, first the bad news: Miami Hurricanes are losing to the VT Hokies. Rough game in the pouring rain. Mah!BUT....I got a call from Kate at RichmondMom.com today. I'm one of the three lucky finalists for the Richmond Mommy Makeover (yay!). Kate joked that we are just sweeping the Richmond Mom contests this year. We'll have to find something for Charlotte to win...she's next!Anyway, I will be getting a new outfit sometime between now and Wednesday (possibly tomorrow) from Fiero Bella and then the actual makeover happens Wednesday afternoon. EVERYONE who is able is welcome to come out to the Shops at 5807 (5807 Patterson) at 6:30 on Wednesday 9/30 to see my "new" and updated look. There will be wine, appetizers, giveaways and all kinds of fun stuff. I think they're doing a raffle for Safe Place so it's all for a good cause. Now Roger and I get to figure out the coordination craziness that will be Wednesday because I think we will have to shuffle around some appointments....we'll figure it out, though. Thanks to everyone who voted for me. I really appreciate it and I'm looking forward to seeing what they "do" for me.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.

No new growth

Good News!!!!I just got off the phone with Dr. Khan. He (finally) got the scans from MD Anderson. He and Dr. Tye looked at them and he also spoke with Dr. Wolff. They all concurred that there does NOT seem to be any new growth. Any abnormalities, swelling, or growth that appear in the MRI were either there before or may be a result of things settling after the radiation. Furthermore, they believe that with the addition of the new drug (Velcade) to her protocol, we should just continue with things "as-is" and do another MRI in about 2 months (around the first of November) to assess progress. Yay!Can I say it again? YAY!! Huge weight lifted off our shoulders.We have had a VERY busy week between long days at Romp n' Roll, shuttling Charlotte to her many appointments, and the day-to-day business of life. Charlotte and I made it to the second half of the RMC Field Hockey game and then we went with them to Estes (the dining hall) for dinner. Charlotte wore her team jersey and hat and all the girls were excited to see her. It was a very fast-paced, intense game that went into overtime. Their opponent (Christopher Newport University) is outside their conference and pretty highly ranked so the fact that they lost in overtime, while kinda sad, was VERY GOOD for them as it means they are improving and ready to take on some of their conference opponents. Good luck, Macon girls!!! We will miss their next few games as they are all "away" but looking forward to their next home game in October.Even with the hectic schedule, it feels really good to be settling back in to the closest thing I can consider a "normal" life these days. Charlotte has been hanging out at Romp n' Roll more and that has been a blessing. It's great to see her participating in classes, playing with kids, and being a "kid" again. I think that's it for now. Granny (my mom) is on her way to Virginia right now. In fact, her plane may have already landed as we speak. Uncle Kolbey picking her up from the airport. It will be great to have her visit for a few weeks. Got to get back to work but I'm sure we'll have more updates soon. Rachel

Happy Birthday Rachel

A bit of diversionary satire...Ah, 9/11: That National Holiday when we wake up early to put colored eggs into our stockings hung by the fire. We fast and pray all day because if we see our shadow, there are 40 more days of unleavened bread. When it gets dark, we dress up in costumes and go door to door giving candy hearts and chocolate to one another. Then we all get together to eat turkey, drink green beer, and spin the dreidel. Finally the evening ends with a big party where we watch a big ball drop at midnight. We sing the National Anthem as the forks blaze in the sky.And, oh yeah, it's my BIRTHDAY (can YOU spot all the holidays rolled into one???)That is all for now. Hope everyone has a good day. Rachel

There's a massive one coming (fair warning)

Very quick update. There's a massive one coming (fair warning) but it's taking too long to get finished so we thought we'd at least let you know the events of the past couple days.The Randolph-Macon College Ladies Field Hockey team officially adopted Charlotte yesterday after their game with Washington College. They read an official welcome complete with background of her situation, gave her a bag full of gifts (I understand there is at least on more on the way), had a big hand-painted banner reading “RMC FH (heart) CHARLOTTE!”, and even had a cake with Charlotte’s name along with the Yellowjacket and all that. There are pics on my Facebook site.Today, we traded off entertaining/working with Charlotte and organizing the house. Rachel has been under the weather with a nasty ear infection but a dynamo in the house. She also worked with CJ a while making her identify aspects of the puzzles that have gotten too easy for her.I taught her the phrase, “Don’t give up!”We then went to Cracker Barrel for dinner which was nice. We’re spoiled in that CB is usually beyond reproach for service and food. Tonight they weren’t on their “A” game but it was still pretty good. We even had dessert.Tomorrow is Labor Day so nothing medical going on. I have rehearsal for Southern Horizon and the U. of Miami/FSU game is on (I’ll keep track on the phone). GO CANES!!!Tuesday and Thursday are PT/OT days and Wednesday and Friday are clinic days to start the new drug,Stay tuned for the epic.

We're BA-ACK!!!

We're BA-ACK!!!A quick update before we all collapse. This has been a LOOOONG day. Charlotte slept in this morning (till after 10!!) while we cleaned up and packed up our room. We took three boxes to the post office (one of which we sent media mail as it was full of DVDs and books!). We came to Texas with three suitcases and left with FIVE (not counting our carry-on totes, the stroller, and the car seat). I have never traveled with that much stuff in my entire life! Actually used the skycaps!We said our goodbyes to our friends at RMH and I think Charlotte was a little upset by it all. She didn't want to say goodbye so we just said "see you later". All our recently made friends have carepages or caringbridge sites so I think we will all be able to keep in touch. I'm hoping a bald chicks reunion will be in the works within the next year. After some lunch and our final checkouts, we headed to the Museum of Fine Arts for a few hours. We only got to see about 1/2 the museum (I guess the second half will wait until next year) but it was one of the best collections of contemporary art I've ever seen. Very creative and interesting art (plus some "weird stuff"). There was also a beautiful collection of Indian, Korean, and Indonesian art. After that we headed to the airport. We went to turn in the rental car but had so many bags that the Hertz agent just drove us to the terminal to drop us off. Checked the bags, made it through security in record time, and grabbed an early dinner at Wendys in the airport. Charlotte was great on both legs of the flights. Roger saw one of the pilots waiting to board before we left Houston and mentioned to him that we were going home after finishing her radiation. As the plane landed in Atlanta, one of the flight attendants announced "One of our youngest passengers, Charlotte, has recently completed her cancer treatment and we are really proud of her". Everybody clapped, including Charlotte. Yes, we're not really done but that's ok. It's an accomplishment all the same.We had to wait for the stroller on the jetway after both flights so Charlotte waved at everyone leaving the plane and worked on her best flight attendant "buh-bye". We had a very short layover in Atlanta (less than 30 minutes) and both flights were uneventful. We arrived back in Richmond where the temperature is a LOVELY 60-some degrees. SWEET. The outside feels like the indoors in Texas felt the whole time we were there...It's late and it's dark but we already know that our house (and possibly our neighborhood?) has been decorated in anticipation of Charlotte's welcome home. Thanks in advance for the welcome wishes! We are looking forward to seeing everyone in the next few weeks. Unfortunately, we will hit the ground running. Tomorrow will be another long day. Roger will be taking her in early for the MRI, I will be going in to teach in the morning, and then I will meet up with them in the early afternoon to (hopefully) get results from Khan and Tye. Plus I have no idea how long it will take me to unpack, go through mail, and just kinda settle back in. I know everyone wants to see us (and Charlotte). Patience please! We can't wait to reunite with everyone. More updates to come!

We are finished with radiation!

We are finished with radiation! Our appointment this morning was bright and early (7:30) and we drug ourselves out of bed for the occasion. Charlotte finished her treatment and then spent over 30 minutes waking up, drinking her chocolate milk, and then changed into her beautiful "teapot" outfit that came from Aunt B and Aunt Lynn. She was actually not TOO shy for the occasion and did a great job banging the going. Then we got many gifts from the folks at the proton center including a balloon bouquet, a tiara/princess set, a piggy bank, and a toy learning laptop that looks like a lot of fun. We said goodbye to some of the friends we had met while at the proton center, got the a-ok from Dr. Mahajan, and set off for the rest of our day.We decided to go to Chilis for lunch where I had a HUGE margarita. If you don't know, Chilis is doing a huge 10-year, $50 million fundraising campaign for St. Judes hospital. They are 5 years into the campaign and have already collected over $25 million. They were doing a "color the chili pepper" campaign so we decorated a chili pepper and donated some $$ to the cause. ALSO found out that September 28th, selected Chilis restaurants will be donating 100% of their profits from the day to St. Judes. Check out the Chilis in your area to see who is participating!After a yummy lunch (Charlotte ate a good bit of a grilled cheese and mandarin oranges), we tried to head over to the fine arts museum as that was one of the last "places of interest" we hadn't tried yet. Unfortunately, it's closed on Monday. Oh well.We came back to RMH and we've been chilling and packing slowly but surely. We are going to try to get as much packed as possible and then hit the Museum tomorrow before we leave for the airport. We also just spoke with the psychologist who did the neuropsych eval on Charlotte to collect a baseline. The basic results are that she scored in the high average range in all areas except motor and her vocabulary is in the 98-99th percentile for her age. Is anyone surprised? Ok, just checking. Before I forget, thanks to everyone who sent us cards, care packages, and all kinds of encouragement during our stay here in Texas. Everything helped to brighten our time here. Roger now has a ticket to go to the Texans/Vikings game tonight thanks to a wonderful donor to RMH. He should get to see Brett Favre play at least one more time! Monday Night Football! Yeah!

DADDY'S HERE!!!(

DADDY'S HERE!!!(this is Roger)The trip out had minimal adventure although at one point, I was told by the Hertz Customer Service rep I couldn't get the rental car until 5:30am Sunday because my flight gets back in after the airport "closes."Fortunately, the people at the actual Hertz location in Hobby are better informed and they told me they have to wait until all flights are in and several come in after Midnight.So I got the car. That's about as exciting as it got except for the amazing scenery out the window. Some pics are on the "Roger Reynolds" Facebook site.I got to The House a little past 1am and Rachel was still up. Another sleepless night as I'm still fighting the gunk and coughing is the big pain.Charlotte had been in bed for quite a while so she was out. The unfortunate part was that she woke up about 5am asking for a book from Mommy. I went over and let her see me. She was kind of out of it so it took her a moment to figure out what was happening. Of course when she did, she held out her arms to give me a hug.Then the focus shifted quickly back to books. I put on a mask and gooped up with sanitizer trying to expose her to a few germs as possible while getting some lovin' in. We have spent the morning reading, playing the spelling game on my iPhone ad nauseum, and watching the Sleepytime video. Her numbers are ok so I'm not too nervous about being around her. Just kind of.We're inviting any Houston area folks to stop by The House this afternoon starting about 3. Nothing official or organized. Just a chance to see everyone again and say thanks for all the help.