Saturday, October 31, 2009

Granny's episode, Kolbey's Birthday

Charlotte has been doing very well. Still eating like a horse and increasing her energy slowly but surely. The tremors continue but that's to be expected.The problem child now is Rachel's Mother. She had what everyone thought was an asthma attack at about 9pm last night and got to ride in an ambulance to the hospital. The real fun began when none of her treatments were effective including inhalers, prednesone, albuterol (all spellings are subject to change), deep massage, boots to the head, nothing worked. Then when the ambulance arrived, they put the mask on her and carted her out the door.I guess they tried to intebate her (put a breathing tube down her throat) in the ambulance before they left but were unsuccessful.When they got to the hospital, they did labs and an EKG and saw something they didn't like so they decided to keep her overnight (much to Granny's chagrin). They ran more tests and decided to do a heart catheterization but found no blockages. Rachel said Granny was having a spasm that should resolve over time but they were going to keep her one more night just in case.
On top of that, yesterday was Uncle Kolbey’s Birthday. At least it was memorable.
Rachel stayed at the hospital for most of the night and I taught her Saturday morning classes (great classes by the way!). We’re still on for all the Halloween festivities this afternoon but I don’t think we’ll make it to the R-MC Field Hockey playoff game at 1pm. Sorry ladies.
More updates as they come.

Tuesday, October 27, 2009

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...

Sunday, October 25, 2009

Thanks to everyone who braved the rain and wind for the ReeseStrong 5K yesterday.

Thanks to everyone who braved the rain and wind for the ReeseStrong 5K yesterday. I got there at the height of the rain and there were some great troopers out there. Big thanks to all the volunteers, organizers, and participants who made such a fun event happen.Roger has posted many pics on his Facebook site with the little princess. She and Reese hung out in the truck for most of the race after doing their obligatory princess waves and grand marshal duties. She went home to eat...and eat...and eat. I even made a late night (ok it was only 7 pm, but still...) run to Chick-Fil-A because the princess wanted chicken nuggets!She was in bed by about 8:30 and Roger and I were able to settle in and spend an evening together with a movie. Yay.She was awake, however, at 5:30 this morning!!! I got up with her and she watched tv downstairs for a while. I did get her some breakfast but she didn't eat anything. About 8 AM, she vomited. Yikes! We had every intention of taking her to church today but those plans got scrapped. No fever so we cleaned her up (good excuse to do some laundry) and my mom stayed home with her so I could go to church. Roger, of course, is off at Romp n' Roll doing his "thing".She fell asleep again around 9 and slept for most of the morning. Since I got home from church she's been eating some light stuff (cereal and crackers) and being kind of lazy. I'm hoping maybe she just over-did it the last few days.So my latest task today is to decrease the ENTROPY in the house. For those of you unfamiliar with the term, it's a science term referring to chaos in a system. With props to my high school science teacher (Hooray, Mary Frances Aumiller!), the forces of ENERGY and ENTROPY are inversely proportional. As Mrs. Aumiller used to explain via a wonderful analogy, if you are busy and working and getting things done (increased ENERGY) there is usually less chaos and mess (decreased ENTROPY) but if you sit around on the couch all day or ignore your daily tasks and chores (decreased ENERGY), trash and clutter accumulates resulting in mass chaos (increased ENTROPY). So that is your chemistry lesson for the week. My house is MASS ENTROPY at the moment. Not dirty but cluttered and chaotic. When we don't have the energy (or time) to put things in their rightful place, chaos ensues. I must increase my energy to decrease the I go.

Great day yesterday! We went to the field hockey game and saw the seniors honored (Yay, Walker and everyone!). They scored two goals early and seemed to have things well in hand so we left before the bad weather could really move in. Charlotte was as sociable as she'd been in a couple weeks. I got a few very good pics of her. Some are on my Facebook page already. More coming. The Lady-Jackets won 4-1!I really hope we can get together with the team again soon for a function of some kind. I think we should have a big party with the women's basketball team which has adopted Reese (we keep doing together and that's cool!Speaking of that, the Reesestrong 5k was wet but successful! We had lots of fun and even though the rain came down in buckets. Charlotte and Reese had their throne in the back of the pickup truck before the rain came and everyone had to come by and take pics and say hi. It was great and Charlotte did wonderfully. I think the fact that people were far enough away that they couldn’t get too much in her face helped keep her sociable.
The rain moved in and we moved Reese and Charlotte into the back seat of the truck where they remained for the rest of the event.
The Lollipop Kids Run had to be run in two waves and there were some great costumes! My personal favorites were the Cub Scout costumes until someone told me they were actual Cub Scouts! Imagine that! J
The adults lined up next and after a rendition of the National Anthem with a questionable lyric or two, the countdown was on. I left the Princesses in good hands (Reeses Daddy and Meredith among others) and zipped down to the starting line. I didn’t really decide to run until that morning and of course everything depended ion Charlotte who was actually happy as a clam hanging with Reese, eating pizza and other goodies. It’s almost as satisfying to see Reese come back into her own personality as it is to see the same in Charlotte. Reese is back to being perky, precocious, and calling me “really silly!” LOVE IT!
So I ran with the rest. My costume was the Romp n’ Roll referee shirt combined with a black cape that we have and I called myself “Count Ref-ula.” It was cute until the wind and rain came. The clothing got soaked and heavy and the wind pulled at the cape making me remember what Edna said in The Incredibles, “NO CAPES!”
Rachel came down from her conference in DC and made it before the end of the race. She has been at the finish of many of my races and it’s always nice when that happens.
What’s amazing about the run/walk is how many people were there and finished the race even with the rain. It was also great to see all the people who came out to support the runners, to volunteer and all that. Big “hats off” to the Mudds and everyone who put the event together. Can’t wait to see how big it gets next year!
The only downer to the weekend so far is that Charlotte was sick to her stomach this morning. It’s a little concerning but we think it’s most probably the barge-load of food she’s been eating the last few days. I’m at Birthday Bashes today and the last call I had was that she was sleeping.
For our Houston network, there is a friend of ours, Vincent Tickle, is in Houston now getting treatment so I’d appreciate if you’d reach out the his family to see if they need any help. Here’s his CB site:
Thanks everyone.

Saturday, October 24, 2009

Charlotte's race day!

Big day today!The Randolph-Macon College women's field hockey team play their last home game today at 2pm and Charlotte is going to be there to help celebrate Senior Day, weather permitting. It's cloudy and occasionally rainy but that's not too bad as long as the thunderstorms that are threatening clear out by then. (I don't do lightening very well)It's also the day of the Reesestrong 5k for Reese Klauer and Lollipop Kids' Run for Charlotte. We'll also try to be there at least for the send-off. Rumor has it, some old, fat, bald guy is going to sing the National Anthem. The rain won't stop the run. Go to for more info.Then maybe after that we can actually gather as a family once again.Charlotte continues to improve. She ate like a horse yesterday and is "moving it through effeciently" (if ya know what I mean!).Everyone be careful on your travels through the rain today, not the least of whom is my lovely wife, headed down from DC.Happy Halloween week!

Tuesday, October 20, 2009

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

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

Monday, October 19, 2009

The ReeseStrong 5K and Charlotte Lollipop Kids Run is this Saturday!!!

The ReeseStrong 5K and Charlotte Lollipop Kids Run is this Saturday!!! Are you ready?If you have not registered, you still have time! You can register online through Thursday at midnight at OR in person at the packet pick up here in Royal Glen Friday from 4-7 or Saturday from 2-4. We have 274 people registered as of yesterday!IF YOU ARE PARTICIPATING IN THE RACE/WALK - here are some things you may want to know:1) Packet pick up - Friday from 4-7pm OR Saturday from 2-4pm here in Royal Glen.2) Parking - I recommend carpooling if you can! There will be parking in the neighborhood on the streets of Royal Glen and there is a parking lot with some additional spaces as well. Overflow will be directed to a church just north of our neighborhood with a shuttle back to the neighborhood. I would shoot to be here no later than 3:30 and no earlier than 2 (we have another event in the neighborhood from 11-2).3) There will be a RAFFLE for some wonderful gifts and gift cards. If you would like to participate, please bring cash! We have restaurant gift cards, spa services, a big Longaberger basket - just to name a few...don't miss out!4) We are still in need of some volunteers - mostly to help guide runners during the race. If you can help out please let us know!This is gearing up to be a busy week. At the end of the week, I have a conference to attend in N. VA (Friday and Saturday) and then I will be rushing back here for the race. Granny and Gramps will arrive on Wednesday and we plan to immediately put them to work! Fortunately, this is a "no-Velcade" week for Charlotte. Her appetite has already picked up. She ate a good deal yesterday during her playdate at the Ferias. Lots of popcorn and chocolate milk. Then she came home and ate even MORE popcorn and chocolate milk. This morning, she ate 3 bowls of cereal! Now she is resting but she was up and awake at 3 AM (as was Roger...thanks, dear).I am hoping that maybe we are "over the hump" of this syndrome and maybe another week will have Charlotte back to normal. We have a visit with Dr. Khan on Wednesday. Plans are kind of up in the air for Saturday's race although we have every intention of having Charlotte there for the big day. Roger and I had a very nice date yesterday. We had planned to do dinner and a movie but we just ended up going to a LONG dinner and talking and then missed the movie times so we used the opportunity to walk off our huge meal and do some window shopping (and a little actual shopping) at Short Pump Mall. Gotta get a move on before the day runs away...Rachel

Sunday, October 18, 2009

The Richmond Mommies hosted a Bake Sale over at the West End Ukrops yesterday.

AMAZING!!!Just to recap the events of the last few days:The Richmond Mommies hosted a Bake Sale over at the West End Ukrops yesterday. There were many wonderful women who baked tons of goodies and/or sold baked goods in the chilly rain for over three hours. They raised over $1000 (I think early estimate is about $1500). Thank you to everyone who helped with extra special thanks to Judy Read and Diane Murphy who were the main organizers. I also understand that the fundraiser at Ebenezer Lutheran in Florida (a church my parents are involved with) raised over $3500 yesterday for Charlotte. That is also amazing! This is on top of the yard sale my friend Amy held a few weeks ago in Ohio that raised about $2100 and the church bazaar at Lakeside Baptist that raised another $1500. I continue to be amazed by the generosity of people. It is so reassuring to know that at least as far as medical expenses go, we are doing ok and will not have to worry. At this point, our biggest medical expense is Charlotte's outpatient therapy bills and I am sure that the recent money raised will help cover this. In addition, once the new year comes, we will have a new (rather large) deductible to pay before insurance starts to cover her medical expenses again. In other news, Charlotte continues to sleep a LOT. She tried to go to the RMC Field Hockey game yesterday. She made an appearance right before the game started but was immediately tired so Roger took her home to sleep again. She did wake up later and they trekked down to RNR for our friend Matthew's birthday party. At the party, she ate at least 7 chicken nuggets (yay!) and ate a few cookies when we got home. I feel like her appetite is picking up a little bit. She was in bed early again last night. Then she woke up around 6 this morning and is now (at 8:30) back in bed. She just can't stay awake for very long. In other news, I am getting slightly more paranoid and just a little concerned about the H1N1 stuff. As I am sure many of you have heard, the flu outbreaks have reached epidemic levels. I heard yesterday on the news that there have already been twice as many child deaths from the flu as they normally have all year (and it's only October). I would normally not be a worrier over things like this but having a child with compromised immunity definitely makes me more concerned. PLEASE vaccinate yourself and your children. I got my first flu shot EVER this year (and have rarely had the flu). I don't think this is a year to take chances. PLEASE do everything you can to keep yourself healthy including eating well, getting plenty of rest, and supplementing your diet with vitamin C and zinc (it really does work!)PLEASE wash your hands rigorously and avoid touching your nose and mouthPLEASE stay home if you feel sick. Do not go to work or send your kids to school if they are sick. It's better to miss a day or two and play it safe than to go out in public and infect others. That is my health-wise PSA of the day...Rumor has it that Roger and I may get a date this afternoon/evening. We will see how the day goes

Friday, October 16, 2009

Very quick update. CJ is doing OK. Just OK.

Very quick update. CJ is doing OK. Just OK. Definitely not thriving but hanging in there. She's still pretty tired although she has been eating and walking around a bit more.She slept nearly all day on Wednesday which meant she woke up at 3am on Thursday morning. Mommy had to work all day Thursday so I took CJ duty. We read books, watched Finding Nemo, ate some...I took her to the clinic to get her Velcade and to get her dressing changed. Nurse April is so good at it, Charlotte didn't even whimper once as she pulled of the cover. Nurse Debbie talked at length with me about how she's doing and whether we should continue the IV fluids overnight (we will).After clinic, we went to People's Bank to drop some more paperwork for the stimulus loan and drop off a $1550.00 check we got from a bazaar held at a church in Charlotte's honor. Thanks so much everyone. We are increasingly having to use CJ funds for things like PT, OT, possible leftover bills from the proton radiation treatments, it is being utilized. While we were there, Charlotte ate plain M&Ms. (Won't touch the peanut ones)After the bank we went and got "PIZZA AND ICE CREAM!!!" (well only pizza really) at COSTCO. CJ ate about 1/3 of a piece which is pretty good and then we went shopping. I bought her the Snow White DVD set so if anyone was thinking of getting that for her for Christmas, sorry to foil your plans. After an afternnon nap for both CJ and Daddy, we watched it and she watched the whole thing even the scary parts.This morning, Mommy got to get up about 5:30 to take care of the pump. CJ was eating waffles when I came down."Her Devon"is in town and will be visiting sometime today. Should be a bright event in a rainy day.Gotta go play...I mean work.

Since it's rainy and cold today and most of you (at least in VA) are stuck indoors, I will give you all a second update for the day! Lucky you!First of all, good news and not so good news about some of our friends. Our friend Halle's latest MRI was today and it was clear. Hooray! Unfortunately, our friend Alex also had an MRI today and his is showing regrowth. He will probably have another surgery soon.These are both kids (and their families) that we met while in Texas. We will think positive thoughts for both of them!Also, Reese has given up her wheelchair and continues to improve each week. We are so happy that she is on the road to recovery. When Roger was at the clinic yesterday, he got our photo of Charlotte from the Kourageous Kids exhibit. We also got about 8 copies of the Kourageous Kids flyer that features a wonderful picture of Reese on the cover, a great story about her families journey with ASK, and then photos of all the other Kourageous Kids. What is really funny is that on the same page as Reese's story, there is a picture of Charlotte that was taken at the Head Shaving Party (wearing her "Bald Chicks rock" tee). I'm not sure why they used it unless they saw it on Reese's website and thought maybe it was a picture of her (???) but it's a great picture of CJ and a fun surprise for us. Charlotte was up around 5:30 this morning with the beeping of the IV pump. She was awake until about 10 AM. Watched TV for about 3 hours and then just pooped out again.Speaking of poop, a little extra laxative helped the girl along so that is one less worry for the day.I am expecting "Charlotte's Devon" any minute now for a visit so I'm hoping her almost 2.5 hour nap will have been enough to refresh her so that she can be a little bit social. Tomorrow there will be a Bake Sale at the West Park Ukrops (across from Costco on W. Broad Street). Ladies from Richmond Mommies (many of whom are also Romp n' Roll customers) have come together to bake and organize this fundraiser for Charlotte. There will also be Charlotte Bracelets sold there. Please come out from 1-4 PM (brave the weather) and support these fabulous ladies!One of the churches that my parents are involved in (Ebenezer Lutheran in Central Florida) is also holding a rummage sale/bazaar this Saturday for Charlotte. Funds raised will also be matched by Thrivent (a Lutheran Fraternal organization) so they are hoping to raise a good deal of $$. From what I understand, the community has really rallied around Charlotte and especially my parents at this difficult time. We have already been blessed by notes and gifts from members of this church and we are very grateful for their compassion and generosity. My brain keeps gearing up for the (as yet to be scheduled) MRI that will be coming our way in a few weeks. I am trying not to get too worked up about it but I know that this will be a very important scan that will most certainly set our direction for treatment for the next while. One day at a time...I guess that's all I have to say for now. It looks like it will be a cold and rainy weekend in VA so I hope everyone stays warm and dry. I can't believe we had to turn on the heat before October 15th!Rachel

Monday, October 12, 2009

"Cancer sucks 99.99 percent of the time.

"Cancer sucks 99.99 percent of the time. But if you want your pool cleaned the next day or you want to go to the head of the buffet line, cancer rocks. Yeah, .01 percent of the time, having cancer is a real plus." -- Robert Schimmel in Cancer on $5 a Day* (*Chemo not included)I have been reading this book and it is great. It's a short read (less than 200 pages) and chronicles Schimmel's battle with non-Hodgkins Lymphoma. He is a rather crass comedian so some of the humor is on the harsh(er) side but I dig it. The memoir is both poignant and hilarious. He also lost his son to cancer 8 years before his diagnosis so he's seen cancer from many aspects. Highly recommend.In other news, Charlotte and I had a busy day. I had a part recalled on my VW so we had to trek over to the west end to get it fixed today. The guy at the dealership that checked us in saw Charlotte curled up in my arms (not wanting to be put down) and said, "Oh, someone's sleepy today? Yeah, my kids didn't want to get out of bed today either.". The guy meant well but all I could think was, "Dude! You have no idea." She had her hood up on her jacket so it was kind of hard for him to see the "cancer kid" hidden underneath all those clothes. This is just one example of the funny (funny-strange) ways that cancer effects your day-to-day life that you really don't think about until it happens to you. I mean, before this, I would never even THINK that a kid holding tight to mom for dear life was doing so because she was exhausted from chemo and wanted nothing more than to curl up and go to sleep...because of CANCER. So it stands to reason that other people would not make that assumption as well. And yet, you want to sit there and scream, "No! You idiot! My kid has cancer and gets toxic chemo medicines every week (every day) that drain her system of her last ounce of strength! She can't walk normally and doesn't have normal balance because her THREE brain surgeries have damaged her nervous system and all her coordination. Possibly permanently. She has a compromised immune system that makes any little germ a possible source of infection. She can't even get her regular immunizations because her immune system is shot. She hasn't been to preschool in almost a year and she hasn't had a normal playdate with another kid in months. Don't even THINK about telling me that YOUR kids are like MY kid. Don't even THINK about telling me how you can relate!!!"But I didn't say that. Thought it. Didn't say it. We all have our issues. Anyway, we went from the VW dealership to Occupational Therapy where Charlotte endured 45 minutes of clinical torture. She started off ok but had a really rough time and wanted to call it quits less than 30 minutes in. We took lots of breaks and gave her lots of encouragement. Still got the heartbreaking tears that made me want to cry myself!I grabbed a quick bite to eat on the way to the clinic. Charlotte munched a few crackers and a bit of cookie. Once at the clinic, they looked her over and got my report from the weekend. Amazingly, she didn't lose any weight but I am sure the overnight fluids helped that. We talked at length with the NP about the shakiness, lack of appetite, and fatigue. The best conclusion that we could reach is that Charlotte probably has Secondary Somnolence Syndrome which is a fancy term for an intermediate after-effect of the radiation that hits (surprise!) 6-8 weeks after the last treatment and (surprise!) causes fatigue, nausea, vomiting, and anorexia (lack of appetite/eating). So, that probably coupled with the effects of the Velcade is the best explanation for her current situation. It is expected that these symptoms will dissipate in about 2-3 weeks. Sometimes they will give steriods to help with the symptoms but they don't really think that is indicated in Charlotte's case. Her numbers were actually halfway decent so she got her flu shot (minimal drama), got her Velcade, and we were sent on our way till Thursday. They're going to order a few more packs of IV fluid to have at the house just to keep her sugar and hydration up. They did also check her blood for other levels such as thyroid, vitamin D, etc. just in case but so far everything looks ok.So that's pretty much it. She fell asleep on the way home and is currently resting in her "downstairs bedroom". I may seize the opportunity to get some paperwork done.Rachel

Sunday, October 11, 2009

Charlotte has had a rough few days.

Roger here. Charlotte has had a rough few days. I think the various drugs she has been forced to take have finally caught up with her. She had been doing so well and everyone had been so amazed at how well she was tolerating the chemo, it was hard to imagine they were actually working. Guess we can put that notion to rest.She has been constantly lethargic and easily fatigued, hardly eating or drinking anything, and not really wanting to go anywhere much (she did, however, seem to perk up when she found out she was going to Anja's. Thanks Meredith). She's been very patient with Mommy and Daddy dragging her around to various places mostly because we had to when all she really wants us to do is hold her.She's had a few bouts with moderately severe abdominal pain, which we believe to be not much more than really bad gas but when she's writhing in pain and crying so hard it scares you, it's hard not to panic. We've had to resort to infant 101 training and bicycle her legs and rub her belly to get relief going. It seems to work.Yesterday was very busy as Rachel had to teach in the morning and I had to dress up as Rompy for the Mascot Mile at Children's Hospital in Richmond, zoom up to Short Pump Middle School to drop off the outfit to the Romp n' Roll tent at the Touch-A-Truck event, head down to John Tyler Community College for a duo Southern Horizon gig with John, then get back home in time for Mommy to get to RNR for a Birthday Bash.Rachel was pretty beat from the morning classes so I did the BB instead (she has covered plenty of classes and BB's for me and will do so again so it wasn't hard to decide). It was a Superhero Adventure Birthday Bash and although there were chaotic parts, it was a great time. I got to wear a cape the whole time and at the end, at least three kids were already browbeating their parents to have their parties at Romp n' Roll. Gotta love it!Mommy stayed home and took good care of Charlotte making sure the IV fluids pump was set up and running correctly. It didn’t take long for her to zonk out last night after I put her to bed. I don’t think she even made it through two books.Charlotte got up about 9:30 this morning, after I left to go teach and Rachel brought her down to the store so we could all go to lunch to speak to a friend about getting Charlotte's Thumbs Up Foundation rolling at a meaningful pace. We went to Panera (yum!) and although the meeting ended up not happening, Rachel, Charlotte, and I actually got to eat lunch together. Kind of a rarity these days. We jotted down a few more ideas about CJSTUF and we got CJ to eat a bit. Granted it was only a container of apple sauce but I was very happy about it. Tonight, after we got all her meds and fluids going, I got her to eat a container of Mandarine oranges and a half of a Honey Stix cracker. Not a 7 course meal but, again, something. Personally, I think she has gotten over the hump of this round.We had our Rompy's Rainbow Station Adventure Party tonight (open house, really) and CJ came down for the first part. She didn't do much and mostly she wanted to watch videos but at one point she asked to go into the gym where I tried to referee the mayhem of a gym and art room packed to capacity with kids and grownups.I think it was a great event and both RNR and Rainbow Station got some business out of it. We're thinking of making it an annual event. Don't see why not.Chick-fil-a gets an extra shout out because, with all the stuff going on yesterday, I forgot to go pick up the chicken nugget trays for today. D'OAH! Remember, they're closed on Sundays. (I think there's a song in there somewhere). Well Pam took pity on me and actually let me in on a Sunday(!) to get those trays. Yes, she was in the neighborhood and all that but it certainly wasn't something she had to do and because of her kindness, we didn’t have to go out of our way to get trays from Food Lion or Kroger that would not have been what we wanted. So go to Chick-fil-a at VA Center Marketplace and tell them how awesome they are.Tonight, CJ sat with me on the couch to see the end of the Denver Bronco/New England Patriot game (GO BRONCOS! 5-0 even in those godawful hideous uniforms!) and then slowly faded as Mommy and Daddy watched “The Soloist” On Demand (Wonderful movie). Just brought her up to bed and here I am.Side note-The Randolph-Macon College field hockey team won their fifth game in a row yesterday 5-1! Congrats ladies. Sorry CJ couldn't be there. We'll try for the next one. I would like to encourage as many Richmond area fans of Charlotte to try to make to a game. Check out and click on athletics for more info.Now about that Mascot Mile…I was placed at the first turn on the grass right by the traffic cones holding up the big sign with the arrows on it. I was being Rompy, waving at passing cars and pedestrians, and waiting for the kids to come running my way so I could bark my encouragement as they went by. The announcer said, “Go!” and they were off. Unfortunately, it doesn’t seem as if they were told to stay on the grass because as soon as they came to where they were supposed to get onto the grass and head my way, they simply stayed on the road around the parking lot and never even came close to me. So much for that. I’m very glad I went up to the start/finish line area to schmooze and pose for pictures or I would have thought it was a tremendous waste of time.The weather’s cooling off and I’m looking foreword to getting under the big comforter! Nighty-night.

Saturday, October 10, 2009

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

Friday, October 9, 2009

In the last 3 days, Charlotte has slept (and slept) (and slept).

In the last 3 days, Charlotte has slept (and slept) (and slept). Wednesday wasn't much better than Tuesday. She spent most of the day asleep, practically catatonic, and/or in bed resting. We were really getting worried since she wasn't taking in much food or drink and she hadn't pooped in DAYS. Yesterday, Roger took her to the clinic bright and early. She was still very sleepy. They agreed to give her IV fluids and she got about 2 hours worth. They also said that if she didn't improve significantly, they would have IV fluids brought to the house with a pump (we've done this before). She did get her Velcade but we had to put off the flu shot yet another day. We also got the prescription for the valproic acid BUT she threw up on the way home so Roger didn't get a chance to fill the Rx. She went home and got Zofran and went almost straight to bed (again). She was asleep by 5:30 PM. She slept the whole night. Now she is up and at least drinking a little (she has to drink a few sips before I will let her watch more video). Roger also got her some pedia-lax. Not as strong as the lactulose but with the lactulose she has to drink a LOT and with this she just has to keep some fluids going. I am hoping that if/when she poops she will feel much better. She already seems to have a bit more energy today but she's also still in bed and just watching videos. I am debating whether to take her to PT this afternoon. Going to kind of play it by ear.Aside from that, Roger and I just keep staying busy with work and our other endeavors. We have a busy weekend ahead with RNR events galore! Also, have you looked at the ticker lately? We've surpassed 160K!! Wow! That's an average of 17K hits per MONTH or almost 600 hits per DAY! Y'all are a devoted group of fans. I have said it before but it is worth repeating: Thank you to everyone who has given us their support these past months. Whether you have made us a meal, provided monetary or gift card donations, given gifts for Charlotte, covered shifts at RNR, organized fundraisers, sent a card, gave a hug, or just prayed for us and our little girl, we appreciate your support. Roger and I hear a lot about how "strong and amazing" we are. We definitely appreciate the praise and I have to admit that I'm kind of amazed myself...but NONE of our strength would be possible if we weren't bolstered by the incredible support that you provide. Even if we don't take you up on something you have offered, please know that just the fact that you OFFER to help lets us know that we have a soft place to fall if we need to. That makes the whole process just a bit easier. With that, I will close and ready myself for a busy Friday and even busier weekend. Happy Fall Y'all!

Tuesday, October 6, 2009

So here's the latest:The word of the day/week is TIRED.

So here's the latest:The word of the day/week is TIRED.Charlotte woke up Sunday morning with kind of a low-grade fever. She never went above 100 but she was very tired and spent most of the day being a couch potato. We let her rest and scrapped plans to go to the field hockey game. She just enjoyed her last full day with Granny.Meanwhile, Roger and I did check in on the Ladies Field Hockey team. We got there with about 15 minutes to go in the game and watched them beat Wooster 2-1!! That's three wins in a row! Then we headed off to a wedding.Monday was B-U-S-Y. I had a dentist appointment. We shuttled from there to the clinic where we waited. And waited. And waited. What was supposed to be a 10:45 appointment had us going in to get vitals at 12:15!!! Apparently the clinic was overbooked (go figure) so they were running behind (an understatement). I let them know in my (hopefully) nice but forceful way that we had an OT appointment at 2 PM and we would need to leave by 1:30 if we were going to make it on time. This was right before 1 PM. Fortunately, her Velcade had been ordered and was ready so after a cursory update with the NP, we decided to forgo the flu shot until Thursday, give the Velcade, and then she was going to have to call me about the Valproic Acid. Because apparently even though it has been on her protocol since we got back from MD Anderson AND we were in the clinic last week for a visit to check on anything, they waited until MONDAY to try to verify the dosage and treatment protocol. At least she got the Velcade. SighThe Velcade pretty much wiped her out. We did manage to get to OT on time and she worked really hard but she barely lasted the 45 minute session. Then we took Granny to the airport and headed home. She was asleep before 9 PM (early for her) and slept till after NOON today. It's a little after 5 PM and she is back in bed. Not asleep but she wanted to get in bed and watch movies. In the little time she was "up and about" today, she and Roger went to the grocery store and then I met up with them at Ashwood Gardens to get our annual pumpkin collection. As many of you know, Roger is our resident pumpkin artist and always comes up with some creative creations. I have some ideas for him so we will see what happens this year...Oh! More big news on the fundraising front: My good friend Amy held a yard sale for Charlotte at her home (Cincinnati) last weekend and raised about $2000 for us!! I was so excited when she called to tell us. Thanks so much, Amy! (and friends). That is about 3 months of OT/PT!Also, discussion is moving on the nonprofit/foundation front. As usual, we put the word out on CB and our network gets rolling. We are hoping to have something in the works before the end of the year. That's all I have for now. Time to go fix some dinner...Rachel

Saturday, October 3, 2009

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

Thursday, October 1, 2009

Register for Charlotte's Run!

Hear Ye! Hear Ye!Registration for the ReeseStrong 5K, Family Walk, and Lollipop Kid’s Run for Charlotte has reached 211. To see the list of those who are participating, visit and click “See who’s participating.”

Although children and adults can register until the day of the event on October 24, children 12 and under will need to register by TODAY (Thursday, October 1) in order to have their names listed on the back of the event t-shirt.

To register, go to From there, you can register online or print out a mail-in registration sheet. If you print out a registration sheet, please place it in our mailbox at 9465 Assembly Way in the Royal Glen subdivision. Registration sheets are also available at Romp n' Roll-Virginia Center (on Brook Road...Target Shopping Center)

Mimmos Pizza is hosting a fundraising night to benefit the Klauer and Reynolds families. On Tuesday October 6th, Mimmos will donate 10% of their sales. So please go out and enjoy a pizza on Tuesday.
Thanks, Y'all!!