A few updates are in order:
First of all, we have our "clerical" volunteers lined up so thanks to those of you who expressed interest in helping. Don't worry...there will be more to do as time goes on.
The website relaunch is taking a little longer than expected so I wanted to make sure some important events and announcements made it onto your calendars.
The Mu Phi Epsilon chapter (music fraternity) at Randolph-Macon is hosting a concert to benefit CJSTUF on Thursday, April 15th from 6-8:30 PM at the college in the Alumni Gym. Tickets are $5 each. There are five groups performing and they are featuring a wide variety of genres: jazz, rock, gospel, acoustic, and bluegrass. We have a few tickets available at Romp n' Roll and I think others will be available at the door.
Megan Blake and her friends are organizing a Kid Stuff Sale (gently used kid gear, kids clothes, maternity clothes, etc.) at St. Thomas' Church (3602 Hawthorne Ave in Richmond). Proceeds will be donated to a number of local organizations and CJSTUF is one of the benificiaries. There is a sip-n-shop on Friday 4/16 from 5-8 PM. For $10, you can get refreshments and first pick at the goodies. The regular sale is Saturday 4/17 from 8 am-1 pm.
Saturday 4/24 is the ASK Fun Run/5K at Short Pump Town Center. This is not a CSJTUF fundraiser or event but our good friends at ReeseStrong will have quite the team. Roger is running in this event. Come on out to support the crowd if you're available.
Have we talked about the Cow Drop yet? The 3rd Annual chick-fil-a Cow Drop is on Saturday May 8th. If you've never been before, the event is held at the Hanover Airport. There is a family fun day from 11 AM-3 PM with face painting, moonbounces, vendors, food, and kid's games. Around 1:30 PM, an airplane loaded with hundreds of little plush COWS will fly overhead and drop the animals from the sky. Those landing closest to a predetermined target will win FABULOUS prizes. Over 20 great prizes will be given including a Disney Family Vacation, a Romp n' Roll birthday party, a year of movie passes from Regal Cinemas, and MORE.
All Cow Drop tickets bought at the Virginia Center Chick-fil-A locations benefit CJSTUF. Tickets are just $10 each and include a coupon for a free milkshake. You don't have to be present on the day of the Cow Drop to win either.
On Tuesday 4/27...there will be a mini-concert and promotion for the Chick-Fil-A Cow Drop at the Virginia Center Chick-Fil-A from 6-6:45 PM. Silly Bus will be playing a small concert as a preview of the Cow Drop event on May 8th and this will be a great opportunity to buy your Cow Drop tickets. This is also Kids Eat Free night at Chick-Fil-A so bring the kids for an evening of fun.
I think that takes you through the month of April (and even into a little bit of May). With Romp n' Roll moving to Mechanicsville, we won't have too much going on CJSTUF-wise during May.
If you haven't been on Facebook lately, Roger started a fan page JUST for the Butterfly Bush (CJ's butterfly bush). He is taking daily pictures and posting them. The page reached over 200 fans in about a day and many of them were not already fans of CJSTUF. Gotta love viral marketing.
I think I will close for now. Happy weekend, everyone.
Showing posts with label Chick Fil A. Show all posts
Showing posts with label Chick Fil A. Show all posts
Friday, April 9, 2010
Wednesday, November 25, 2009
More of the Same?
There isn't a whole lot of news to report but I suppose an update of some type is in order.
Charlotte spends her days eating, reading, watching tv/movies, and sleeping. Roger and I have been puttering around getting things ready for our upcoming trip, doing Foundation "stuff", staying on top of activities at RNR....sometimes I wonder where the time goes. It's very nice to just snuggle up with her and watch movies sometimes.
On Monday, we journeyed out in the rain for story time at the Ashland Library. We saw a few friends and it was good to get out of the house. Later, I met with our social worker from Noah's Children and then went to RNR to catch up on some work. Charlotte's Devon came by to spend the day and she had a great visit. They read books, Charlotte ate, and they watched a few shows together. Good bonding time.
Tuesday we had a nurse visit from Noah's Children and then ran some more errands to get out of the house. One ominous errand was to go by the doctor's office and get Charlotte's DNR (do not resusciatate) order signed by the physician. It seems very strange to have something like that in our posession. I just look at it and it makes everything very REAL.
Lunch was at Chick-fil-A (of COURSE!) and Charlotte ate well. She eats slowly but well. Sometimes it's very difficult to be in a place with so many other children because you immediately see the differences between her abilities and those of typical children. It's still a shock to me to see kids much younger than her who are able to manipulate stairs, climb the playground equipment, and feed themselves. It kind of slaps me back into reality. Yesterday it made me really sad. After our day out, we returned to the house and Charlotte and I watched the Tinkerbell movie (the new sequel, actually) to rest.
Last night, Roger and I had a much-needed date night. We went out with some friends to Emilios Tapas out in the Short Pump area. It was a small group and Roger was the only guy. (poor thing!) We had a good time eating, drinking Sangria, talking, and generally enjoying one another's company. It was a great escape and much thanks to Jan Light and her friend Anne for coming over to hang out with Charlotte. I think they had a great time with our girl as well.
This morning we are off to Children's Hospital to get a new stroller and (hopefully) a walker that may help Charlotte get around a little more independently. Her balance is WAY off right now and she can't walk well without holding one of our hands. We don't have huge plans for Thanksgiving but we've got a LOT coming up in the next week so it will give us some time to get ready.
Gotta go take a shower and face the day.
Charlotte spends her days eating, reading, watching tv/movies, and sleeping. Roger and I have been puttering around getting things ready for our upcoming trip, doing Foundation "stuff", staying on top of activities at RNR....sometimes I wonder where the time goes. It's very nice to just snuggle up with her and watch movies sometimes.
On Monday, we journeyed out in the rain for story time at the Ashland Library. We saw a few friends and it was good to get out of the house. Later, I met with our social worker from Noah's Children and then went to RNR to catch up on some work. Charlotte's Devon came by to spend the day and she had a great visit. They read books, Charlotte ate, and they watched a few shows together. Good bonding time.
Tuesday we had a nurse visit from Noah's Children and then ran some more errands to get out of the house. One ominous errand was to go by the doctor's office and get Charlotte's DNR (do not resusciatate) order signed by the physician. It seems very strange to have something like that in our posession. I just look at it and it makes everything very REAL.
Lunch was at Chick-fil-A (of COURSE!) and Charlotte ate well. She eats slowly but well. Sometimes it's very difficult to be in a place with so many other children because you immediately see the differences between her abilities and those of typical children. It's still a shock to me to see kids much younger than her who are able to manipulate stairs, climb the playground equipment, and feed themselves. It kind of slaps me back into reality. Yesterday it made me really sad. After our day out, we returned to the house and Charlotte and I watched the Tinkerbell movie (the new sequel, actually) to rest.
Last night, Roger and I had a much-needed date night. We went out with some friends to Emilios Tapas out in the Short Pump area. It was a small group and Roger was the only guy. (poor thing!) We had a good time eating, drinking Sangria, talking, and generally enjoying one another's company. It was a great escape and much thanks to Jan Light and her friend Anne for coming over to hang out with Charlotte. I think they had a great time with our girl as well.
This morning we are off to Children's Hospital to get a new stroller and (hopefully) a walker that may help Charlotte get around a little more independently. Her balance is WAY off right now and she can't walk well without holding one of our hands. We don't have huge plans for Thanksgiving but we've got a LOT coming up in the next week so it will give us some time to get ready.
Gotta go take a shower and face the day.
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 entropy...off 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: http://www.caringbridge.org/visit/vincenttickle
Thanks everyone.
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: http://www.caringbridge.org/visit/vincenttickle
Thanks everyone.
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
Thursday, September 3, 2009
Fighting a cold
There really isn't much to report but I'm so addicted to this Caring Bridge site that I have to write something before I go to bed...The biggest news is that now I'm fighting some kind of cold/bug. I don't think it's very bad and I'm (hopefully) coming off the worst of it already but last night I was achy with a sore throat. At least no fever. I didn't sleep very well but Roger was very nice to me and went in to teach camp (I was supposed to be on morning shift). This allowed me to sleep and convalesce a bit, especially since Charlotte slept till after 10 (!!!).We went down to Romp n' Roll at about noon and took Roger over to Chick-Fil-A for lunch. Charlotte has become quite the "regular" around there and they hadn't seen her for a while so Tim (one of the manager/franchise trainees) and Linda (another adoring fan) took extra good care of us today. Then we did the trade-off and I went to work while Roger took Charlotte down to MCV to visit our employee Lindsey.I don't think we have had the time to update everyone on Lindsey. She is a Patrick Henry high school senior who has been working for us at Romp n' Roll since the beginning of the summer. Anyway, she's having a rough week (to say the least). Her dad was in a bike accident on Friday and then SHE was in a car accident on Monday and has a crushed hand that will require multiple surgeries. Otherwise she seems to be ok but Roger has been able to go by and visit her twice now and today she and Charlotte brought a movie that they watched together. Please add Lindsey and her family to your prayer list!! While at MCV, Roger did some "nosing around" just to see if there was any progress. The only news is that Dr. Tye also saw the scans and agreed with Dr. Khan with what they saw on the MRI. The ball is in motion to get the July scans from MDA. That's all we know.From MCV, Roger took Charlotte over to RMC where they met the Yellow Jacket Field Hockey Team that has recently adopted CJ as part of the Friends of Jaclyn Foundation. They had dinner with the team at Estes Dining Hall and Charlotte really seemed to bond with some of the girls. It will be fun to have her involved in their games. They were all wearing Charlotte bracelets and gave her lots of positive attention. Thanks to all of you for your thoughts, concerns, and messages in the past 24 hours. Roger and I are dealing with the ambiguity as best we can right now and doing as best we can to keep our spirits up. It's a very bizarre time for me right now emotionally and I can't really describe it. So I won't even try. Lots of thoughts in my head. Some good. Some not so good. Just be patient with us if we seem distracted or not really in the mood to talk about it. I guess that's mostly where we are.Signing off so I can get some sleep...Rachel
Saturday, August 15, 2009
Riddle me this, Batman...
"Riddle me this, Batman..."Why would Humana One, our illustrious insurance company, pay for IV topotecan treatments which require a visit to the clinic, supervision by at least one medical professional, and the actual drug which costs well over $1000 just for the little package they hang on the pole (not to mention all the medical waste created when tubes, swabs, even the covering on the table, all have to be thrown away) and then refuse to cover the little liquid oral syringes manufactured right here at the hopsital, which we can do at home without supervision, and which costs about $800 for 14 days worth (and all we throw away is the little syringe)?Well, that's what they're doing. If you're looking for places where the wasted money goes, there's one. I would think other policy holders of Humana One or even shareholders of the company might be interested to see that inefficiency.
I just paid over $400 for a week’s worth of the oral version (It’s certainly not a financial hardship thanks to all of you filling up CJ’s account) and Charlotte took it with very little trouble. Dr. Wolff recommended this avenue because he said, “You have to get out of town; you have to go to Disney World.” The oral version offers us a lot more flexibility all around. Going into the clinic everyday is an acceptable pain but being able to forgo the visit is a very attractive proposition. I’m sure they don’t cover it because it hasn’t been “approved.” I think they ought to approve it. Otherwise, I’m pretty sure we wouldn’t be able to maintain that outflow of cash for the long term and we’d have to go back to the IV route.
Charlotte doesn’t really give a hoot either way.The other, and much more serious insurance development: Humana sent us a letter saying that the proton therapy is considered out of network. This would be much more than a "convenience" issue and would normally have us extremely concerned except that we already got a coverage waiver (serial number and all) way before we even came out. Our angel in this matter, Yvette, is out of town, however, so she’s not available at the moment to check things out. Another person in the radiation dept. talked to me and after a little minor investigating, it looks like all the important information is still there in the computers so when Monday rolls around, hopefully this can get nipped immediately.
I groused at the person manning The House front desk this morning for turning out the lights on me while I was using the kitchen, twice. I told her it was a matter of being polite and all she had to do was ask me if it was ok or at least warn me she was going to do it. She, for her part was calm and tried to explain policy, electricity costs, yadda yadda yadda (of course I wasn’t interested in listening because I was mad) but after a short bit, I realized, again, that it’s really not that big of a deal.
Then after all that, Charlotte melted down because I had cut up the apple which was why I was using the kitchen area in the first place.
OI!
I see my irritation level rising slightly, which is weird because things seem to be going so well, but I get over most of it pretty quickly. Mostly because I’m not shy anymore about letting the offending party know that I’m irritated and then I let go of it right away. Keeps it from swirling around in my mind and making me stew over things. Makes far less bad energy in the long run. I could still use better judgment as to whom I aim my grousing.
So yesterday…Not a bad day again. Charlotte has started getting “the look” again so I wasn’t surprised when later, I got a call from the Children’s Clinic saying they wanted to give her a transfusion next Monday. Her numbers are still a little low but not going down but they wanted to make sure and I don’t think it’s a bad idea at all.
Rachel comes in tonight and Merilee Beasley is watching CJ for our date. No real plans this time. Just mingling auras.
A small yet massive victory today and it had nothing to do with poop.
A friend of my cousin Jeff’s, Larry, lives in Houston and we meet up today to hang out and get a little break from The House. At Charlotte’s request, we went to Chick-fil-a (surprise!!!). She ate like a champ and then told me she wanted to play in the playroom.
We got her hat, shoes, and brace off and she started climbing up the play “thing.” She got three tiers up when a boisterous older boy came whizzing down and bonked her on the head with his arm. No harm but lots of tears and I had to go up and get her down.
I held her at the table while she got herself together. She ate some more and to my surprise, she asked to back into the play area. I told her the big boys were still in there and she said, “That’s OK.” That’s my girl! She started back up the steps and I only helped her a little and once she go up high enough that I couldn’t contort myself any more, I asked one of the boys, David (pronounced Dah-veed), to just watch that she’s ok and he agreed (nice kid). I think he actually helped CJ onto the slide and down she came! It took a very long time but she was tenacious, determined, and never even hinted at giving up. That’s my girl.
I tell you, I’ve seen more and more of the old Charlotte every day (not wanting help getting off a couch, actually sitting up in bed on her own, trying suggestions I’ve given her as to how to bend over to pick things up, etc…) and today was a big glimpse of her. Warmed my heart.
Just though I’d pass that along. Thanks, Larry, for a fun afternoon.
I just paid over $400 for a week’s worth of the oral version (It’s certainly not a financial hardship thanks to all of you filling up CJ’s account) and Charlotte took it with very little trouble. Dr. Wolff recommended this avenue because he said, “You have to get out of town; you have to go to Disney World.” The oral version offers us a lot more flexibility all around. Going into the clinic everyday is an acceptable pain but being able to forgo the visit is a very attractive proposition. I’m sure they don’t cover it because it hasn’t been “approved.” I think they ought to approve it. Otherwise, I’m pretty sure we wouldn’t be able to maintain that outflow of cash for the long term and we’d have to go back to the IV route.
Charlotte doesn’t really give a hoot either way.The other, and much more serious insurance development: Humana sent us a letter saying that the proton therapy is considered out of network. This would be much more than a "convenience" issue and would normally have us extremely concerned except that we already got a coverage waiver (serial number and all) way before we even came out. Our angel in this matter, Yvette, is out of town, however, so she’s not available at the moment to check things out. Another person in the radiation dept. talked to me and after a little minor investigating, it looks like all the important information is still there in the computers so when Monday rolls around, hopefully this can get nipped immediately.
I groused at the person manning The House front desk this morning for turning out the lights on me while I was using the kitchen, twice. I told her it was a matter of being polite and all she had to do was ask me if it was ok or at least warn me she was going to do it. She, for her part was calm and tried to explain policy, electricity costs, yadda yadda yadda (of course I wasn’t interested in listening because I was mad) but after a short bit, I realized, again, that it’s really not that big of a deal.
Then after all that, Charlotte melted down because I had cut up the apple which was why I was using the kitchen area in the first place.
OI!
I see my irritation level rising slightly, which is weird because things seem to be going so well, but I get over most of it pretty quickly. Mostly because I’m not shy anymore about letting the offending party know that I’m irritated and then I let go of it right away. Keeps it from swirling around in my mind and making me stew over things. Makes far less bad energy in the long run. I could still use better judgment as to whom I aim my grousing.
So yesterday…Not a bad day again. Charlotte has started getting “the look” again so I wasn’t surprised when later, I got a call from the Children’s Clinic saying they wanted to give her a transfusion next Monday. Her numbers are still a little low but not going down but they wanted to make sure and I don’t think it’s a bad idea at all.
Rachel comes in tonight and Merilee Beasley is watching CJ for our date. No real plans this time. Just mingling auras.
A small yet massive victory today and it had nothing to do with poop.
A friend of my cousin Jeff’s, Larry, lives in Houston and we meet up today to hang out and get a little break from The House. At Charlotte’s request, we went to Chick-fil-a (surprise!!!). She ate like a champ and then told me she wanted to play in the playroom.
We got her hat, shoes, and brace off and she started climbing up the play “thing.” She got three tiers up when a boisterous older boy came whizzing down and bonked her on the head with his arm. No harm but lots of tears and I had to go up and get her down.
I held her at the table while she got herself together. She ate some more and to my surprise, she asked to back into the play area. I told her the big boys were still in there and she said, “That’s OK.” That’s my girl! She started back up the steps and I only helped her a little and once she go up high enough that I couldn’t contort myself any more, I asked one of the boys, David (pronounced Dah-veed), to just watch that she’s ok and he agreed (nice kid). I think he actually helped CJ onto the slide and down she came! It took a very long time but she was tenacious, determined, and never even hinted at giving up. That’s my girl.
I tell you, I’ve seen more and more of the old Charlotte every day (not wanting help getting off a couch, actually sitting up in bed on her own, trying suggestions I’ve given her as to how to bend over to pick things up, etc…) and today was a big glimpse of her. Warmed my heart.
Just though I’d pass that along. Thanks, Larry, for a fun afternoon.
Friday, July 24, 2009
All is Much Better
We all had a much better night last night and day today. We keep getting rides in ambulances and I think Charlotte is developing a thing for one of the "Ambu-Guys," Isreal. It must be the ponytail, goatee and earring. Hey, wait a minute!!! ::-)
The Bonitas are uber-helpful as usual. When we got settled in the hospital room, Juanita stayed with Charlotte and Dad and I went to get dinner downstairs. It was wonderful because I got to have Chick-fil-a for the first time in 2 weeks or so. It was also bad because I haven’t had hardly any fast food in that amount of time so the fried food sure did a number on me! Still working that out (so to speak).
Sitting down with Dad was so strange. Mostly because I wasn’t sitting next to Charlotte and I wasn’t freaking out about anything. And boy, did I feel tired!
So this am she ate a little and we had a relatively quiet morning. She still seemed a little sullen but her fluids sure are "fluiding."
The ambulance folk showed up at about 1:30 to take CJ to the proton center this time Isreal came with Laura (who reminded me a huge amount of one of our fellow Romp n’ Roll franchise owners). This time we got there very early and waited for about an hour until our appointment time. Grandpa held her on his lap for most of that time. She sure loves her Grandpa!
After she went in (with the accompanying rendition of Frosty. I hope she doesn’t get sick of it but her little hand out for “STOP!” just tickles the staff to no end) the Bonitas and I went back to The House so I could check mail (stuff keeps coming in, thanks), get a few things, and eat. Juanita made me some amazingly good stew and we were treated to another big o’ hairy thunderstorm that dumped a large amount of rain on our area.
Radiation treatment #3 went fine and CJ was in the recovery room when we got back. The Bonitas (isn’t that a kind of sport fish?) had to go check on the dog and awnings on the RV so they left planning to meet back up at the hospital.
Not much else happened until the ambu-guys showed up to take us back. It was Laura and Isreal again (that guy keeps showing up! Gotta go clean my shotgun! If I had one, that is). One thing I’m going to say about the drivers, they have to have super senses of direction because the maze that is MDAnderson Cancer Center is mind boggling. I do pretty well with directions and I’ve been so turned around multiple times, if I had been alone, I would have ended up like Jack Nicholson in The Shining.
Charlotte was actually feeling much better and was chatting up a storm. Laura had never seen the real Charlotte and was amazed.
So after we got resettled in the hospital room, Dr. Wolff came by to do what he does and work out what he thought might be a good plan of action. The short-term plan is to keep watching her at least one more day, do the new routine of hang out here, ride the ambulance ( Isreal is off tomorrow so I don’t have to worry about him! ), and see how she improves. He was happy with the looseness of her legs but her neck is still stiff. She interacted with him pretty well and smiled for him. It definitely helps that he’s a friend of Dr. Kahn, “one of my favorite doctors!”
As far as the chemo goes, he is deferring to Dr. Mahajan (radiation oncologist) who feels uncomfortable having her on the multiple drugs for which her protocol calls so I think they will only be doing one. Dr. Wolff mentioned Acutane but that’s the one that really dries out the skin so that may not end up being the one.
After Dr. Wolff left, the Bonitas came back and Dad and I turned right around and went to the Target for sinus headache stuff for me (nothing happening now but just in case) and a Clifford video. We didn’t find one but I found a cheap Thomas video and one with several Nick Jr. characters doing bedtime stories including, but not limited to, Wonder Pets, Blue, and Dora. Perfect.
We got back to Juanita teaching CJ about swimming in chocolate pools (not a bad thing at all) and to say “AWESOME!” (could be a bad thing). She was feeling restless so we went for a walk!!! She was raring to go and didn’t have to asked twice. It’s the first walking she’d done since Wednesday and that wasn’t much. I guess it was the first real walking since Tuesday night.
The rest is actually nice and boring. The Bonitas left, Charlotte and I snuggled on the bed for a bit, I got into my jammies, and here I am typing the update. I can deal with boring for a few days.
There! Got it done in under 3 pages!
The Bonitas are uber-helpful as usual. When we got settled in the hospital room, Juanita stayed with Charlotte and Dad and I went to get dinner downstairs. It was wonderful because I got to have Chick-fil-a for the first time in 2 weeks or so. It was also bad because I haven’t had hardly any fast food in that amount of time so the fried food sure did a number on me! Still working that out (so to speak).
Sitting down with Dad was so strange. Mostly because I wasn’t sitting next to Charlotte and I wasn’t freaking out about anything. And boy, did I feel tired!
So this am she ate a little and we had a relatively quiet morning. She still seemed a little sullen but her fluids sure are "fluiding."
The ambulance folk showed up at about 1:30 to take CJ to the proton center this time Isreal came with Laura (who reminded me a huge amount of one of our fellow Romp n’ Roll franchise owners). This time we got there very early and waited for about an hour until our appointment time. Grandpa held her on his lap for most of that time. She sure loves her Grandpa!
After she went in (with the accompanying rendition of Frosty. I hope she doesn’t get sick of it but her little hand out for “STOP!” just tickles the staff to no end) the Bonitas and I went back to The House so I could check mail (stuff keeps coming in, thanks), get a few things, and eat. Juanita made me some amazingly good stew and we were treated to another big o’ hairy thunderstorm that dumped a large amount of rain on our area.
Radiation treatment #3 went fine and CJ was in the recovery room when we got back. The Bonitas (isn’t that a kind of sport fish?) had to go check on the dog and awnings on the RV so they left planning to meet back up at the hospital.
Not much else happened until the ambu-guys showed up to take us back. It was Laura and Isreal again (that guy keeps showing up! Gotta go clean my shotgun! If I had one, that is). One thing I’m going to say about the drivers, they have to have super senses of direction because the maze that is MDAnderson Cancer Center is mind boggling. I do pretty well with directions and I’ve been so turned around multiple times, if I had been alone, I would have ended up like Jack Nicholson in The Shining.
Charlotte was actually feeling much better and was chatting up a storm. Laura had never seen the real Charlotte and was amazed.
So after we got resettled in the hospital room, Dr. Wolff came by to do what he does and work out what he thought might be a good plan of action. The short-term plan is to keep watching her at least one more day, do the new routine of hang out here, ride the ambulance ( Isreal is off tomorrow so I don’t have to worry about him! ), and see how she improves. He was happy with the looseness of her legs but her neck is still stiff. She interacted with him pretty well and smiled for him. It definitely helps that he’s a friend of Dr. Kahn, “one of my favorite doctors!”
As far as the chemo goes, he is deferring to Dr. Mahajan (radiation oncologist) who feels uncomfortable having her on the multiple drugs for which her protocol calls so I think they will only be doing one. Dr. Wolff mentioned Acutane but that’s the one that really dries out the skin so that may not end up being the one.
After Dr. Wolff left, the Bonitas came back and Dad and I turned right around and went to the Target for sinus headache stuff for me (nothing happening now but just in case) and a Clifford video. We didn’t find one but I found a cheap Thomas video and one with several Nick Jr. characters doing bedtime stories including, but not limited to, Wonder Pets, Blue, and Dora. Perfect.
We got back to Juanita teaching CJ about swimming in chocolate pools (not a bad thing at all) and to say “AWESOME!” (could be a bad thing). She was feeling restless so we went for a walk!!! She was raring to go and didn’t have to asked twice. It’s the first walking she’d done since Wednesday and that wasn’t much. I guess it was the first real walking since Tuesday night.
The rest is actually nice and boring. The Bonitas left, Charlotte and I snuggled on the bed for a bit, I got into my jammies, and here I am typing the update. I can deal with boring for a few days.
There! Got it done in under 3 pages!
Thursday, July 9, 2009
Happy Birthday to Charlotte!
Happy Birthday to my Beautiful Baby Girl, my Monkey Butt, my 'Mater (she was born during the Hanover Tomato Festival), Zazou the Amazing Can Can Dancing Creature (long story)!
Today will be one of those ultimate special days. We get to meet former Redskins football players at the clinic (OK, it's more for Daddy than CJ!), we get to see a concert at Chcik-fil-a with great music, great food, and Star Wars characters walking around. Really, the 501st Star Wars Regiment will be there for pics and all!
Charlotte will be there for a little while, not sure exactly how long, "Big" Rompy (strangely Daddy sized) will be there as will a parade of folk/bluegrass musicians. Bring your "axe" and someone might let you jump in! Music should commence at about 5:30pm
Romp ' Roll will be open for free Open Gym starting at 5:00pm so if you want to take a break from the festivities, come on over!
Mommy and Daddy are giving her a kid-themed digital camera because she was showing a definite interest in taking pictures earlier. Good occupational therapy as well. (SHHH! Don't tell Charlotte.)
THEN!!! The big O' Birthday Bash on Friday at 6:00pm! Charlotte's official party ar Romp n' Roll. EVERYONE is invited. There will be enough cake for both the Hatfields and the McCoys (Chek yer wepuns at the door). Don't bring presents, just love and an appetite for cake and pizza.
Concerning the trip: we are getting our appointments lined up bit by bit and we've found out that Monday the 13th will be a simulation run to give everyone a chance to organize exactly what's going to happen. Then she gets an MRI on Tuesday and then...nothing until NEXT Monday. That's right, they say they need a few days to plan everything so we will be doing just chemo at that time. (JUST CHEMO?!?!)
We have a temporary place to stay until an official agency comes through with an appartment thanks every so much to our guardian angel, Meredith, for getting that going.
I've contacted the Washington Nationals and the Houston Astros about covering the Sunday game between the two. (Why not multi-task while we're down there, eh?) If it happens, I'll let you know where to hear/read it. Most probably WHAN 1430AM on Monday morning.
Update:
What a day! Busy and good...and did I mention BUSY?
My day consisted of a haircut, many errands, and then off to Romp n' Roll to work.
Daddy took CJ to the clinic where they got to meet some retired Washington Redskins. Charlotte actually got to hold a Super Bowl ring in her hand. I'm not sure who was more excited about this visit (Charlotte or Daddy) but I think the icing on the cake was when the football players sang "Frosty the Snowman" to Charlotte in honor of her birthday. Our nurse (April) was back from vacation and everyone made a big deal out of the birthday girl's big day. She got a present from the clinic (wrapped in SNOWMAN paper...too cute!). And, of course, Charlotte got to see Dr. Khan (her favorite doctor). Rumor has it that the moment with the football players was captured by WTVR and was on the news but I haven't seen it yet. Couldn't find it online.
In medical news, we have our first appointments for next week so things do seem to be lining up. We are in email communication with our nurse practitioner out there and the Houston Angel Network is coming out in full force. We continue to get messages from people who know us or know of us and are helping us make connections for ANYTHING we might need in TX. I know that we will be well cared for.
Our local Angel Network is hopping too. The concert was a success. God served up some beautiful weather, Chris Fuller and Charles Arthur played their greatest hits, Childtime had some fun kid's crafts, the 501st Brigade was there (Darth Vader, Storm Troopers, even an Obi Wan Kenobi) taking pictures to raise money for charity. I even saw a few storm troopers directing traffic! The Star Wars group raised over $200 for Charlotte PLUS, Chick-Fil-A donated 10% of the evenings proceeds to us (a little over $100) PLUS over 23 people donated blood today! Yay! Even Rompy got in on the action and came to visit all the kids.
Our biggest Angel of the evening came in the form of plane tickets. I am not sure if this Angel wants to be acknowledged yet so I will let her remain anonymous, but let me tell everyone that almost ALL of our remaining plane tickets for travel to and from Houston have been bought and paid for. We will only need to purchase Charlotte's and my return trip at the end of August (and we just don't know the date for that yet). What a gift! What a blessing!
So 36 hours from now, we will actually be IN Houston (that's scary!!). I've got a lot of packing to do and before that we are going to party like it's on sale for $19.99. Romp n' Roll: be there or be square. 6 PM. We may have to call the Fire Marshall :-)
Gotta run and be productive (oh and rest...)
Rachel
Today will be one of those ultimate special days. We get to meet former Redskins football players at the clinic (OK, it's more for Daddy than CJ!), we get to see a concert at Chcik-fil-a with great music, great food, and Star Wars characters walking around. Really, the 501st Star Wars Regiment will be there for pics and all!
Charlotte will be there for a little while, not sure exactly how long, "Big" Rompy (strangely Daddy sized) will be there as will a parade of folk/bluegrass musicians. Bring your "axe" and someone might let you jump in! Music should commence at about 5:30pm
Romp ' Roll will be open for free Open Gym starting at 5:00pm so if you want to take a break from the festivities, come on over!
Mommy and Daddy are giving her a kid-themed digital camera because she was showing a definite interest in taking pictures earlier. Good occupational therapy as well. (SHHH! Don't tell Charlotte.)
THEN!!! The big O' Birthday Bash on Friday at 6:00pm! Charlotte's official party ar Romp n' Roll. EVERYONE is invited. There will be enough cake for both the Hatfields and the McCoys (Chek yer wepuns at the door). Don't bring presents, just love and an appetite for cake and pizza.
Concerning the trip: we are getting our appointments lined up bit by bit and we've found out that Monday the 13th will be a simulation run to give everyone a chance to organize exactly what's going to happen. Then she gets an MRI on Tuesday and then...nothing until NEXT Monday. That's right, they say they need a few days to plan everything so we will be doing just chemo at that time. (JUST CHEMO?!?!)
We have a temporary place to stay until an official agency comes through with an appartment thanks every so much to our guardian angel, Meredith, for getting that going.
I've contacted the Washington Nationals and the Houston Astros about covering the Sunday game between the two. (Why not multi-task while we're down there, eh?) If it happens, I'll let you know where to hear/read it. Most probably WHAN 1430AM on Monday morning.
Update:
What a day! Busy and good...and did I mention BUSY?
My day consisted of a haircut, many errands, and then off to Romp n' Roll to work.
Daddy took CJ to the clinic where they got to meet some retired Washington Redskins. Charlotte actually got to hold a Super Bowl ring in her hand. I'm not sure who was more excited about this visit (Charlotte or Daddy) but I think the icing on the cake was when the football players sang "Frosty the Snowman" to Charlotte in honor of her birthday. Our nurse (April) was back from vacation and everyone made a big deal out of the birthday girl's big day. She got a present from the clinic (wrapped in SNOWMAN paper...too cute!). And, of course, Charlotte got to see Dr. Khan (her favorite doctor). Rumor has it that the moment with the football players was captured by WTVR and was on the news but I haven't seen it yet. Couldn't find it online.
In medical news, we have our first appointments for next week so things do seem to be lining up. We are in email communication with our nurse practitioner out there and the Houston Angel Network is coming out in full force. We continue to get messages from people who know us or know of us and are helping us make connections for ANYTHING we might need in TX. I know that we will be well cared for.
Our local Angel Network is hopping too. The concert was a success. God served up some beautiful weather, Chris Fuller and Charles Arthur played their greatest hits, Childtime had some fun kid's crafts, the 501st Brigade was there (Darth Vader, Storm Troopers, even an Obi Wan Kenobi) taking pictures to raise money for charity. I even saw a few storm troopers directing traffic! The Star Wars group raised over $200 for Charlotte PLUS, Chick-Fil-A donated 10% of the evenings proceeds to us (a little over $100) PLUS over 23 people donated blood today! Yay! Even Rompy got in on the action and came to visit all the kids.
Our biggest Angel of the evening came in the form of plane tickets. I am not sure if this Angel wants to be acknowledged yet so I will let her remain anonymous, but let me tell everyone that almost ALL of our remaining plane tickets for travel to and from Houston have been bought and paid for. We will only need to purchase Charlotte's and my return trip at the end of August (and we just don't know the date for that yet). What a gift! What a blessing!
So 36 hours from now, we will actually be IN Houston (that's scary!!). I've got a lot of packing to do and before that we are going to party like it's on sale for $19.99. Romp n' Roll: be there or be square. 6 PM. We may have to call the Fire Marshall :-)
Gotta run and be productive (oh and rest...)
Rachel
Sunday, July 5, 2009
A Really Good Day
Today was a really good day for everyone, I think. We made it to church and then spent the afternoon catching up on various projects. I worked on some RNR stuff and even wrote a few thank you notes. Roger watched some tennis and golf and caught up on some emails, and Charlotte pretty much entertained herself with books, drawing, and (her new favorite) toting around daddy's shoelaces which she removes from his shoes. At least it's good OT practice.
We had a lovely dinner at the Smokey Pig (thanks to Gramps) and just got back.
We asked Dr. Khan if it would be possible to postpone the TX trip so that our first day in clinic (even though it wouldn't be the first day of radiation) would be the 13th. This would make coordination on all our parts much easier. He did email me back to say that would be fine. SOOOOO....here's the plan:
We WILL have the Rompy's Summer Concert Series on July 9th at 5:30 in the Chick-Fil-A parking lot. Give blood at the bloodmobile in Charlotte's honor (if you can...they'll be there from 3-8 PM), bring some non-perishable food for the food bank, or just come out for a good time. The weather and the music should be GREAT.
We WILL have her birthday party on July 10th at 6 PM as originally planned. Tinkerbell theme. NO presents. Everyone come to romp n' roll and wear pink and/or purple. This will be her big sendoff.
We will plan to leave for TX sometime on the 11th. I am looking into flights right now. We have a few folks investigating some free options for us too but if it doesn't work out, Roger and I will have many other opportunities to take advantage with our new "commute". I will try to help get everything and everyone settled over the weekend, stay for the first day of everything on the 13th, and then catch a flight back either late on the 13th or early on the 14th. We will switch sometime on or around the 25th of July.
So now Roger and I need to get travel plans together, make lots of packing lists, figure out where we will stay while in TX, etc. etc. etc. Please be patient if we are minimally responsive to emails, etc. at this time.
Granny and Gramps plan to stay in VA until after I return from TX so that will help with the transition too.
That's all for now. Her comes Monday. What a week this will be!!!!
Rachel
We had a lovely dinner at the Smokey Pig (thanks to Gramps) and just got back.
We asked Dr. Khan if it would be possible to postpone the TX trip so that our first day in clinic (even though it wouldn't be the first day of radiation) would be the 13th. This would make coordination on all our parts much easier. He did email me back to say that would be fine. SOOOOO....here's the plan:
We WILL have the Rompy's Summer Concert Series on July 9th at 5:30 in the Chick-Fil-A parking lot. Give blood at the bloodmobile in Charlotte's honor (if you can...they'll be there from 3-8 PM), bring some non-perishable food for the food bank, or just come out for a good time. The weather and the music should be GREAT.
We WILL have her birthday party on July 10th at 6 PM as originally planned. Tinkerbell theme. NO presents. Everyone come to romp n' roll and wear pink and/or purple. This will be her big sendoff.
We will plan to leave for TX sometime on the 11th. I am looking into flights right now. We have a few folks investigating some free options for us too but if it doesn't work out, Roger and I will have many other opportunities to take advantage with our new "commute". I will try to help get everything and everyone settled over the weekend, stay for the first day of everything on the 13th, and then catch a flight back either late on the 13th or early on the 14th. We will switch sometime on or around the 25th of July.
So now Roger and I need to get travel plans together, make lots of packing lists, figure out where we will stay while in TX, etc. etc. etc. Please be patient if we are minimally responsive to emails, etc. at this time.
Granny and Gramps plan to stay in VA until after I return from TX so that will help with the transition too.
That's all for now. Her comes Monday. What a week this will be!!!!
Rachel
Wednesday, June 24, 2009
Charlotte made her "Wish"
The last couple of days in the Nelson Clinic have been much smoother. We've been calling in ahead to give them "warning." Dr. Kahn wasn't there today so we didn't get to ask our latest questions but nurse April promised to corner him this afternoon and make sure he addresses them.
Saw Nile and his mother today. He was furiously playing video games in the waiting room. He looked pretty good.
Also saw Reese's Mom. She was back and forth taking loads to the car in hopes of going home. Hope it happens soon.
There were others we passed here and there who we knew or at least knew CJ. Drs., nurses, parents, staff. I actually am starting to really hate the fact that we know so many people there. As I like to say to those we meet, "Not that I don't want to see you but I sure wish it was at Ukrop's or something."
Charlotte is resting comfortably and watching Big, Big, World. I'm starting to notice "the look" creep back in. She's smiling a little less and looking more tired. Fortunately, the nausea and other problems haven't materalized yet. I'm sure they will be by soon. She's still eating so that's good. No poop for a couple days now. Can't be long as the topo-stuff is supposed to make her stool very, very loose.
Can't beat the weather the last couple of days. Tomorrow should be more like normal - Hot, humid, and icky.
Make-a-Wish is coming by soon so we'll be one step closer to that.
Phyllis is upstairs ripping carpet out of the closet. I didn't know there was anything left to do! We've got an electrical project for Grandpa next time he comes up. Our hall light looked like it needed a bulb so we tried to get the cover off to change it. I don't think we had done anything to that fixture in a very long time and it sort of fell apart when we finally got it loose. It's salvagable but I don't do electricity so Dad get's to! :-)
Got to chop a little wood yesterday. Might run out and grab some wood from a neighbour who just cut down a tree.
The business front is looking a bit better. We hit our overall membership goal, which earned the staff an ice cream party, and our Awesome Adventure Party promo is cooking along with great vigor. We've booked a large number of parties as far forward as mid-late 2010! There are some other great things coming up that will amaze and mystify you! :-) Stay tuned.
The Home-Based Business Bazaar is Saturday at St. Anne's Catholic Church from 10am-2pm.
Update:
So Charlotte made her official "wish" today. The Make-A-Wish ladies (Toni and Emily) came by to visit. Emily helped us fill out the "grownup" paperwork (releases and such) while Charlotte and Toni chatted it up. She told her that she wanted to go "Where Annette and her kids went". When probed for more clarification, Charlotte said "Minnie-Land" or "The place where the princesses are". AKA: Disney World! It was definitely her wish and her decision. Roger and I are both excited as well. We are tentatively looking at a winter date (Dec/Jan/Feb) to be solidified once radiation is over and we have a better idea of how her treatment plan will play out. We will get to stay at Disney for about a week and we will stay at the Give Kids the World hotel. It is a resort on the Disney property that was started by a man who wanted to make sure that kids with medical needs could have a great Disney vacation. They have a doctor and nurse on staff and (word has it) you can get ice cream sundaes 24/7. My kind of place. I think they also have characters who visit the hotel from time to time. Did I mention I'm excited? We are basically not getting a vacation this year (surprise) so this will be something special to look forward to. Once we have dates, anyone who is in the immediate area (or anyone who wants to travel to join us) is most welcome. I know we have a pretty big Florida fan club.
In other news, our nurse at the clinic called back with the answers we had about her protocol so that was cleared up. She will start a new medication next week (temozolamide) and will only be on the accutane till Sunday. Dr. Khan assured her that he is working on the insurance "stuff" and will update us when he has more news.
Charlotte is playing it pretty low key right now but managing to keep herself busy. She needs to poop but otherwise seems fine. She's gnawing on a HUGE apple as we speak. As Roger mentioned, we are getting ready to be pretty germophobic as her counts will soon plummet so be aware that playdates will be kept to a minimum.
Granny and Gramps will arrive tomorrow (hooray) and we will be on the official countdown to her birthday. Can you believe it's two weeks away?
Remember: two upcoming events for her birthday
1. The Summer Concert Series on July 9th (her actual birthday) in the Chick-Fil-A parking lot. Come out for the concert, donate blood, and bring food for the food bank.
2. Her birthday party at Romp n' Roll, Friday July 10th, 6 PM. All are welcome! We will have cake and some assorted food goodies, we'll put up the moonbounce and let the kids (and grownups) P-L-A-Y. No presents, please. We just want to celebrate HER! OH and the theme will be Tinkerbell. Charlotte wants everyone to wear pink and/or purple to the event so come decked out.
That's all I have to report for now. Some very good news.
Rachel
Saw Nile and his mother today. He was furiously playing video games in the waiting room. He looked pretty good.
Also saw Reese's Mom. She was back and forth taking loads to the car in hopes of going home. Hope it happens soon.
There were others we passed here and there who we knew or at least knew CJ. Drs., nurses, parents, staff. I actually am starting to really hate the fact that we know so many people there. As I like to say to those we meet, "Not that I don't want to see you but I sure wish it was at Ukrop's or something."
Charlotte is resting comfortably and watching Big, Big, World. I'm starting to notice "the look" creep back in. She's smiling a little less and looking more tired. Fortunately, the nausea and other problems haven't materalized yet. I'm sure they will be by soon. She's still eating so that's good. No poop for a couple days now. Can't be long as the topo-stuff is supposed to make her stool very, very loose.
Can't beat the weather the last couple of days. Tomorrow should be more like normal - Hot, humid, and icky.
Make-a-Wish is coming by soon so we'll be one step closer to that.
Phyllis is upstairs ripping carpet out of the closet. I didn't know there was anything left to do! We've got an electrical project for Grandpa next time he comes up. Our hall light looked like it needed a bulb so we tried to get the cover off to change it. I don't think we had done anything to that fixture in a very long time and it sort of fell apart when we finally got it loose. It's salvagable but I don't do electricity so Dad get's to! :-)
Got to chop a little wood yesterday. Might run out and grab some wood from a neighbour who just cut down a tree.
The business front is looking a bit better. We hit our overall membership goal, which earned the staff an ice cream party, and our Awesome Adventure Party promo is cooking along with great vigor. We've booked a large number of parties as far forward as mid-late 2010! There are some other great things coming up that will amaze and mystify you! :-) Stay tuned.
The Home-Based Business Bazaar is Saturday at St. Anne's Catholic Church from 10am-2pm.
Update:
So Charlotte made her official "wish" today. The Make-A-Wish ladies (Toni and Emily) came by to visit. Emily helped us fill out the "grownup" paperwork (releases and such) while Charlotte and Toni chatted it up. She told her that she wanted to go "Where Annette and her kids went". When probed for more clarification, Charlotte said "Minnie-Land" or "The place where the princesses are". AKA: Disney World! It was definitely her wish and her decision. Roger and I are both excited as well. We are tentatively looking at a winter date (Dec/Jan/Feb) to be solidified once radiation is over and we have a better idea of how her treatment plan will play out. We will get to stay at Disney for about a week and we will stay at the Give Kids the World hotel. It is a resort on the Disney property that was started by a man who wanted to make sure that kids with medical needs could have a great Disney vacation. They have a doctor and nurse on staff and (word has it) you can get ice cream sundaes 24/7. My kind of place. I think they also have characters who visit the hotel from time to time. Did I mention I'm excited? We are basically not getting a vacation this year (surprise) so this will be something special to look forward to. Once we have dates, anyone who is in the immediate area (or anyone who wants to travel to join us) is most welcome. I know we have a pretty big Florida fan club.
In other news, our nurse at the clinic called back with the answers we had about her protocol so that was cleared up. She will start a new medication next week (temozolamide) and will only be on the accutane till Sunday. Dr. Khan assured her that he is working on the insurance "stuff" and will update us when he has more news.
Charlotte is playing it pretty low key right now but managing to keep herself busy. She needs to poop but otherwise seems fine. She's gnawing on a HUGE apple as we speak. As Roger mentioned, we are getting ready to be pretty germophobic as her counts will soon plummet so be aware that playdates will be kept to a minimum.
Granny and Gramps will arrive tomorrow (hooray) and we will be on the official countdown to her birthday. Can you believe it's two weeks away?
Remember: two upcoming events for her birthday
1. The Summer Concert Series on July 9th (her actual birthday) in the Chick-Fil-A parking lot. Come out for the concert, donate blood, and bring food for the food bank.
2. Her birthday party at Romp n' Roll, Friday July 10th, 6 PM. All are welcome! We will have cake and some assorted food goodies, we'll put up the moonbounce and let the kids (and grownups) P-L-A-Y. No presents, please. We just want to celebrate HER! OH and the theme will be Tinkerbell. Charlotte wants everyone to wear pink and/or purple to the event so come decked out.
That's all I have to report for now. Some very good news.
Rachel
Thursday, June 18, 2009
Her Protocol
Very quick update,
We're going in for the latest LP (spinal tap) this morning and hopefully we'll get to talk to Dr. Kahn about the next move.
If everything goes smoothly and there are no complications, Rachel and I are headed to the Capital Ale House to see a favorite of ours VINX! He's a percussionist/vocalist who was discovered quite by accident when Sting was passing by a club where VINX was playing. Sting heard the very cool music, pulled up short, and went to listen. He eventually produced VINX's first album. I stumbled upon it in college and Choosy Mama from his second album, "I Love My Job," has been used as sort of a theme song in our family.
Tomorrow is the award ceremony at Chick-fil-a at VCM and I think it would be very cool if the fire marshall closed the place down due to too many people! Just a thought. I'm actually feeling a little apprehensive about the LP today. Hope I can celebrate/appreciate it properly tomorrow
Gotta go wake up the princess.
Update:
We are back from the clinic. We were only there for 6 hours today. Sheesh. At least we got some answers.
First order of business was the spinal tap. They asked us to be there by 9 just in case anesthesia was ready early but they weren't so the spinal tap didn't happen until about 11 or so. Let's all remember that Charlotte had had nothing to eat since about 8 PM the night before and had to be NPO for the anesthesia. She really didn't complain too much but as soon as Charlotte was "out" Roger went downstairs to nab some (what else) Chick Fil A.
Speaking of which, y'all come on out tomorrow at 5:30 to the Chick-Fil-A at Virginia Center Marketplace to honor our Great Richmond DAD! Yay!
Back to the story...so as soon as they gave her the sleepy juice, she was pretty much out of it. It was hilarious to watch her engaged in converstaion and then, midsentence, to just flop over and go to sleep.
After the tap, we waited for her to rouse. Dr. Tye and Joanne came by to check in with her. Dr. Khan had taken out her stitches while she was out for the spinal tap so her head looks GREAT. Then Dr. Khan came back with (drum roll, please) her protocol. They are looking at starting some oral and IV medications on an outpatient basis for a few weeks. She will be on Accutane (yes, the acne drug), Topotecan (she will have to have this via IV 5 days a week in clinic because of the dosage needed), and eventually Temozolamide (another oral med). All of these meds carry their own share of side effects, all similar to many of the drugs she has been on before. The goal with all of these drugs will be to neutralize the malignant properties of the tumor (the Accutane does this) and stop the tumor growth.
We are also going to try to get her back into a somewhat regular PT/OT schedule in the next few weeks.
Radiation is tentatively scheduled to start mid-July and will be for 6-8 weeks. Pending results of the spinal tap (and assuming it is clear), we will start to coordinate with our new hospital for radiation. We agree with Dr. Khan that while many of the long term benefits of proton beam radiation are not well known (mainly because it is such a new therapy), it is worth the effort and risk given her age and all the potential benefits. He is going to work on checking with insurance and participating hospitals. She will actually stay on the other three chemotherapy drugs throughout radiation and then will continue them after radiation as well. There is a road map laid out week-by-week with all of the different drugs and when she takes them.
At this time, we don't have high dose chemo on the plan but we have to see how the tumor reacts to radiation and some of these other agents. Potentially, she could be on these medications for up to two years before treatment would be "done" BUT if we are "just" dealing with outpatient meds and an infusion or two, that is definitely more do-able than constant hospitalizations. That is good news in my mind.
In other news, as we realized that we now have a treatment timeline, we figured that we can now plan the Princess's birthday. while we were waiting in clinic, we discussed dates and I think we are going to have a party on July 10th (a Friday) sometime in the evening. Charlotte decided that she wants to have a Tinkerbell party with an ice cream cake and she wants to have the party at Romp n' Roll. So here's your official invitation:
EVERYONE that would like to come is invited to celebrate Charlotte's 4th birthday on Friday July 10th at 6 PM at Romp n' Roll. We will have ice cream cake and some food. Please no presents. This is not a fundraiser and we don't need any gifts. We would just like everyone to come out and celebrate. Hope to see you there!!!
In other event news, the Home Based Business Bazaar will be at St. Ann's Catholic Church in Ashland on June 27th. This is a great opportunity to find that perfect gift or get your Christmas shopping done early. Many home-based businesses including Pampered Chef, Arbonne, the Happy Gardener, Avon, PartyLite candles, and others will be represented and will be donating a portion of their sales to Charlotte. There will also be a silent auction.
Also on the calendar is the NEXT Rompy's Concert Series on July 9th (Charlotte's actual birthday) at Chick Fil A/Romp n' Roll. Chris Fuller and Charles Arthur will entertain and we will have the blood bank there as well as a collection for the Central VA Food Bank.
I think that's it for now. Roger and I need to get freshened up for our date with VINX. Very exciting!
I feel a huge weight lifted just to have some answers and know that we will begin treatment tomorrow.
Rachel
We're going in for the latest LP (spinal tap) this morning and hopefully we'll get to talk to Dr. Kahn about the next move.
If everything goes smoothly and there are no complications, Rachel and I are headed to the Capital Ale House to see a favorite of ours VINX! He's a percussionist/vocalist who was discovered quite by accident when Sting was passing by a club where VINX was playing. Sting heard the very cool music, pulled up short, and went to listen. He eventually produced VINX's first album. I stumbled upon it in college and Choosy Mama from his second album, "I Love My Job," has been used as sort of a theme song in our family.
Tomorrow is the award ceremony at Chick-fil-a at VCM and I think it would be very cool if the fire marshall closed the place down due to too many people! Just a thought. I'm actually feeling a little apprehensive about the LP today. Hope I can celebrate/appreciate it properly tomorrow
Gotta go wake up the princess.
Update:
We are back from the clinic. We were only there for 6 hours today. Sheesh. At least we got some answers.
First order of business was the spinal tap. They asked us to be there by 9 just in case anesthesia was ready early but they weren't so the spinal tap didn't happen until about 11 or so. Let's all remember that Charlotte had had nothing to eat since about 8 PM the night before and had to be NPO for the anesthesia. She really didn't complain too much but as soon as Charlotte was "out" Roger went downstairs to nab some (what else) Chick Fil A.
Speaking of which, y'all come on out tomorrow at 5:30 to the Chick-Fil-A at Virginia Center Marketplace to honor our Great Richmond DAD! Yay!
Back to the story...so as soon as they gave her the sleepy juice, she was pretty much out of it. It was hilarious to watch her engaged in converstaion and then, midsentence, to just flop over and go to sleep.
After the tap, we waited for her to rouse. Dr. Tye and Joanne came by to check in with her. Dr. Khan had taken out her stitches while she was out for the spinal tap so her head looks GREAT. Then Dr. Khan came back with (drum roll, please) her protocol. They are looking at starting some oral and IV medications on an outpatient basis for a few weeks. She will be on Accutane (yes, the acne drug), Topotecan (she will have to have this via IV 5 days a week in clinic because of the dosage needed), and eventually Temozolamide (another oral med). All of these meds carry their own share of side effects, all similar to many of the drugs she has been on before. The goal with all of these drugs will be to neutralize the malignant properties of the tumor (the Accutane does this) and stop the tumor growth.
We are also going to try to get her back into a somewhat regular PT/OT schedule in the next few weeks.
Radiation is tentatively scheduled to start mid-July and will be for 6-8 weeks. Pending results of the spinal tap (and assuming it is clear), we will start to coordinate with our new hospital for radiation. We agree with Dr. Khan that while many of the long term benefits of proton beam radiation are not well known (mainly because it is such a new therapy), it is worth the effort and risk given her age and all the potential benefits. He is going to work on checking with insurance and participating hospitals. She will actually stay on the other three chemotherapy drugs throughout radiation and then will continue them after radiation as well. There is a road map laid out week-by-week with all of the different drugs and when she takes them.
At this time, we don't have high dose chemo on the plan but we have to see how the tumor reacts to radiation and some of these other agents. Potentially, she could be on these medications for up to two years before treatment would be "done" BUT if we are "just" dealing with outpatient meds and an infusion or two, that is definitely more do-able than constant hospitalizations. That is good news in my mind.
In other news, as we realized that we now have a treatment timeline, we figured that we can now plan the Princess's birthday. while we were waiting in clinic, we discussed dates and I think we are going to have a party on July 10th (a Friday) sometime in the evening. Charlotte decided that she wants to have a Tinkerbell party with an ice cream cake and she wants to have the party at Romp n' Roll. So here's your official invitation:
EVERYONE that would like to come is invited to celebrate Charlotte's 4th birthday on Friday July 10th at 6 PM at Romp n' Roll. We will have ice cream cake and some food. Please no presents. This is not a fundraiser and we don't need any gifts. We would just like everyone to come out and celebrate. Hope to see you there!!!
In other event news, the Home Based Business Bazaar will be at St. Ann's Catholic Church in Ashland on June 27th. This is a great opportunity to find that perfect gift or get your Christmas shopping done early. Many home-based businesses including Pampered Chef, Arbonne, the Happy Gardener, Avon, PartyLite candles, and others will be represented and will be donating a portion of their sales to Charlotte. There will also be a silent auction.
Also on the calendar is the NEXT Rompy's Concert Series on July 9th (Charlotte's actual birthday) at Chick Fil A/Romp n' Roll. Chris Fuller and Charles Arthur will entertain and we will have the blood bank there as well as a collection for the Central VA Food Bank.
I think that's it for now. Roger and I need to get freshened up for our date with VINX. Very exciting!
I feel a huge weight lifted just to have some answers and know that we will begin treatment tomorrow.
Rachel
Monday, June 15, 2009
Great Richmond Dad and Other Good Stuff
What an awsome day! First off, my Uncle Jerry and Aunt Jeanne came by the store looking to take us out to lunch. Lunch is always good. They came by at the exact right time because I was at home and had just finished doing a bunch of stuff that needed to get done so I was available.
So I packed up Charlotte headed down. We went to Casa Grande (mmmm.....) and lunch was very good. Rachel had to leave early to teach but CJ and I stayed for a good long while. Charlotte is so good at entertaining herself, it's amazing!
Then, just as we were getting up to leave I get a call from Rachel at the store checking to see if I had received the text that Annette had sent. I really hadn't been parying attention so, no, I hadn't.
Seems Kate from Richmondmom.com called and I should call her right away. So I did. Looks like we won the Great Richmond Dad contest! (And I do mean "we.") Thanks to all who voted and made it possible. It's very exciting!!!
We're going to have an official event at the Chick-fil-a right here on Friday evening sometime. I'm sure when but there will be an announcement on the Richmondmom.com site.
Back to reality: Rachel went to talk to Dr. Matt this morning and she always feels better when she does. The rest of the day has been very busy with camp, classes, and all that at Romp n' Roll, and CJ drawing lots of pictures at home. Aunt Phyllis kept her dynamo ways up and with only a little help from me, had a new shelving unit installed in the upstairs office closet.
A very odd thing, the next door neighbor took it upon herself to trim some branches off of our trees...on our property...without asking us. Now she's an uber gardener and all that but Gramps is a Master Gardener and he knows more about that sort of stuff than she will ever forget. I'm positive she thought she was doing us a favor but I think it was a bit presumptuous. What do you think? Whatever, I certainly have other things to worry about.
Saturday was odd. We had the morning to ourselves and we went to Poor Farm Park to play. As we got there, we nooticed other kids coming to a birthday party at the shelter right next to the playground. Chalrotte was very into the playground untill the kids really started showing up in numbers. She got manhandled by a few kids wanting to get around her and that kind of turned her off to the whole thing. We left after less than a half hour.
Then we went to downtown Ashland to see the Farmer's Market. A woman at a booth heard her name and said, "Is that THE Charlotte from St. James?" I'll say it again, I think CJ is over the whole minor celebrity thing. We did get to eat big marshmallow treats, though! YUM!
Gotta go teach Monday night classes,
WOOHOO!
Rog
Update:
Have I mentioned what a great day this has been? Besides my atrocious spelling, we've continued to have good stuff happen.
Charlotte had a great day playing with me, Uncle Kolbey, and Aunt Phyllis. (Right now she's sitting in bed, singing to herself; being cute as humanly possible.) She's also been drawing pictures to send to Pixar Studios as part of her "thank you" package for all the stuff they sent her.
We had two rather full classes this afternoon, both of which were not even on the schedule originally. Both were "requested" by groups and have filled out the evening nicely. One class, "Rhythm n' Roll" at 6:30, is nothing but girls! Never had that happen before. They're every bit as rowdy as the boys and don't listen even more! (did that make sense?) Total hoot! Gonna be a great session.
Tonight, Charlotte and I got to talk to Nile and little sister Olivia via Skype and I got to see the autographed Super Bowl champion footballs he got at the bowling event with the Pittsburgh Steelers. Dang it! He got to meet the Bus! :-)
Thank you all for the well wishes and comments. I really appreciate it.
Did you see how they (Richmondmom.com) pulled you along in the best American Idol fashion with the teases and first letter of the name revealed to get you to click deeper into the website and all that? It was awesome!! :-) Kudos to Richmondmom.com.
There's going to be an offical "award" event at Chick-fil-a on Friday evening. Stay tuned for more details.
Last but not least, we did NOT hear from Dr. Kahn today about THE PLAN. Feel free to nudge him to call us tomorrow if you see him. We are so over NOT having a road map. Someone just point or something and say, "Go there!" And we will. I promise.
Beside that, it's been a pretty good last few days. Thanks to all our customers for coming out and registering for classes, thanks to everyone who has been lining up to do things for us, thanks for the donations that are still coming in at a pretty good clip, thanks for the chocolate chip cookies and the home made mac & cheese with the bread crust topping! The thanking will never stop.
Time for milk and said cookies!
Rog
So I packed up Charlotte headed down. We went to Casa Grande (mmmm.....) and lunch was very good. Rachel had to leave early to teach but CJ and I stayed for a good long while. Charlotte is so good at entertaining herself, it's amazing!
Then, just as we were getting up to leave I get a call from Rachel at the store checking to see if I had received the text that Annette had sent. I really hadn't been parying attention so, no, I hadn't.
Seems Kate from Richmondmom.com called and I should call her right away. So I did. Looks like we won the Great Richmond Dad contest! (And I do mean "we.") Thanks to all who voted and made it possible. It's very exciting!!!
We're going to have an official event at the Chick-fil-a right here on Friday evening sometime. I'm sure when but there will be an announcement on the Richmondmom.com site.
Back to reality: Rachel went to talk to Dr. Matt this morning and she always feels better when she does. The rest of the day has been very busy with camp, classes, and all that at Romp n' Roll, and CJ drawing lots of pictures at home. Aunt Phyllis kept her dynamo ways up and with only a little help from me, had a new shelving unit installed in the upstairs office closet.
A very odd thing, the next door neighbor took it upon herself to trim some branches off of our trees...on our property...without asking us. Now she's an uber gardener and all that but Gramps is a Master Gardener and he knows more about that sort of stuff than she will ever forget. I'm positive she thought she was doing us a favor but I think it was a bit presumptuous. What do you think? Whatever, I certainly have other things to worry about.
Saturday was odd. We had the morning to ourselves and we went to Poor Farm Park to play. As we got there, we nooticed other kids coming to a birthday party at the shelter right next to the playground. Chalrotte was very into the playground untill the kids really started showing up in numbers. She got manhandled by a few kids wanting to get around her and that kind of turned her off to the whole thing. We left after less than a half hour.
Then we went to downtown Ashland to see the Farmer's Market. A woman at a booth heard her name and said, "Is that THE Charlotte from St. James?" I'll say it again, I think CJ is over the whole minor celebrity thing. We did get to eat big marshmallow treats, though! YUM!
Gotta go teach Monday night classes,
WOOHOO!
Rog
Update:
Have I mentioned what a great day this has been? Besides my atrocious spelling, we've continued to have good stuff happen.
Charlotte had a great day playing with me, Uncle Kolbey, and Aunt Phyllis. (Right now she's sitting in bed, singing to herself; being cute as humanly possible.) She's also been drawing pictures to send to Pixar Studios as part of her "thank you" package for all the stuff they sent her.
We had two rather full classes this afternoon, both of which were not even on the schedule originally. Both were "requested" by groups and have filled out the evening nicely. One class, "Rhythm n' Roll" at 6:30, is nothing but girls! Never had that happen before. They're every bit as rowdy as the boys and don't listen even more! (did that make sense?) Total hoot! Gonna be a great session.
Tonight, Charlotte and I got to talk to Nile and little sister Olivia via Skype and I got to see the autographed Super Bowl champion footballs he got at the bowling event with the Pittsburgh Steelers. Dang it! He got to meet the Bus! :-)
Thank you all for the well wishes and comments. I really appreciate it.
Did you see how they (Richmondmom.com) pulled you along in the best American Idol fashion with the teases and first letter of the name revealed to get you to click deeper into the website and all that? It was awesome!! :-) Kudos to Richmondmom.com.
There's going to be an offical "award" event at Chick-fil-a on Friday evening. Stay tuned for more details.
Last but not least, we did NOT hear from Dr. Kahn today about THE PLAN. Feel free to nudge him to call us tomorrow if you see him. We are so over NOT having a road map. Someone just point or something and say, "Go there!" And we will. I promise.
Beside that, it's been a pretty good last few days. Thanks to all our customers for coming out and registering for classes, thanks to everyone who has been lining up to do things for us, thanks for the donations that are still coming in at a pretty good clip, thanks for the chocolate chip cookies and the home made mac & cheese with the bread crust topping! The thanking will never stop.
Time for milk and said cookies!
Rog
Wednesday, May 20, 2009
Announcements
Some announcements for the week:
0. There was a green old navy jacket (adult size xs) left at the Head Shaving Party @ Romp n' Roll in April. If it belongs to you, please come by or call to claim it. It's really cute and I would take it but there's NO WAY I'm an XS :-)
1. Mini Golf/Batting Cages/Driving Range TONIGHT 7-10 PM at Glen Allen Golf on US1 to benefit Charlotte.
2. The Five Below event @ VCC seemed to be a success and Charlotte's story has really touched on the people there SO they are repeating the event for the next TWO weekends. Get your flyers at Romp n' Roll and take them in to buy all your summer tchotchkes (sp?).
3. Don't forget about the Brain Tumor Awareness Benefit Concert with Susan Greenbaum and Cheryl Fare at Ashland Coffee and Tea Saturday (5/23) from 3-6 PM. The event itself does not benefit Charlotte directly but it is a great cause with great music AND there will be a 50/50 raffle for Charlotte as well. Much thanks to Susan and Cheryl for letting us piggyback on this. We are sorry that we will miss it.
4. A shout-out to Christy, Wendy, and Torrie for helping Roger with the FACES event at Virginia Crossings tonight.
5. A HUGE shout-out to Jackie Plank for continuing the fundraising efforts.
6. On that note: another date change. The home based business bazaar will be June 27th at St. Ann's Catholic Church. More details to follow but there will be lots of vendors (Pampered Chef, Arbonne, Longaberger Baskets, etc.) selling their wares and donating a portion of the proceeds to Charlotte. Start your Christmas shopping early! Also, I think a Silent Auction is in the works.
With all of these fundraisers in the works, we are very grateful. We just found out that the insurance IS going to cover our visit to TX as a "second opinion" (they will cover the visit but not the tumor evaluation since that is considered experimental). We did receive a second denial of our appeal for considering the stem cell transplant services as "in-network" at MCV. The insurance ombudsman feels we made a great case and that the insurance did thoroughly review our cause but they continue to maintain that they are not denying us coverage and that we can go to an in-network hospital or pay the out-of-network rates. Given that we do not know right now how many stem cell transplants/rounds of high dose chemo she will need and/or whether this will go on past this calendar year (since our deductible is for the calendar year), this will probably increase our out-of-pocket medical costs to anywhere between $40-100K. We will definitely be talking with MCV about negotiating cost but there isn't much point until we know the direction where MD Anderson will point us...
That is all I have to report. I hope to see some of you tonight. Then I must pack and we leave for the airport about 5 AM tomorrow! Whew!
Rachel
First off and VERY IMPORTANT, the little thermometer to the right isn't our idea. It makes it look like Charlotte will somehow get donations if you click there. I've asked them to remove Charlotte's name from it. Seem a little sneaky to me. I've already sent them a donation when we first started the site and I know several of you have as well. Might be the last one I send if they keep that kind of crap up
Be that as it may, today was a HUGE day! First off, I woke up, completely alert, at 4AM this morning. No idea why.
Charlotte and I went down to Children's Hospital to get the fabled slides of the tumor which we will take with us to Houston ("Houston, Texas?!?")
This next event illustrated Cerisa's post brilliantly: While headed home, I asked Charlotte where she wanted to have lunch and she said the ever wonderful, "Chick-fil-a." When I said, OK, we're going to Chick-fil-a, she immediately said, "People eat there seven times a day!" If you don't know to what that refers, immediately open a new browser tab/window and go here:
http://www.youtube.com/watch?v=NsJHqstPuNo
No, really. Go do that now...
Hmmm dee dum dummm
Great, eh?
OK so we get to CFA and we meet Mommy there. We had a great lunch, CJ had ice cream with her lunch, and Mommy and I switched cars and Charlotte.
I then went to VA Crossings Resort to set up the Romp n' Roll stuff for the FACES of Virginia meeting. I was actually getting a little nervous because the final count was edging up into the low 40s which is a handful under primo conditions and I knew this wasn't going to have those conditions.
I got to the resort and realized they weren't going to have the two separate rooms for the kids or the other, OTHER separate room for the older kids to play board games. I figured that's OK since I'll have my star volunteers, Torrie (Too Tall Torrie) Heathcoat and Christy Yeadon MAN Am I glad they were there! Couldn't have done this without them. Thanks, ladies!
After teaching my classes at Romp n' Roll, I zoomed over and found the place in chaos already. We got the kids a little focused with a song or two and an idea of what an obsticle course should be and they took it from there. They really seemed to love the springboard! There were a few "breaks" and lots of redirection but a pretty fun time was had by all.
So we made a lot of FACES parents very happy to be able to have a nice, relatively quiet dinner. I also think it got us a bit of new business. If you've never plopped your head into the pensieve that is the world of foster parenting and adoption, it's had to imagine what a tough job it is. Foster and adoptive parents need and deserve access to every little bit of resources under the sun! That's why I dig this FACES of Virginia Families organization so much. That's what they do. If you don't get suckered in by the little thermometer over there and have given as much as you want to CJ's fund, I can think of few other places as deserving of your support. Heck! Boss woman, Cate Neubanks is even going to yoga with us on June 6th.
I had a ton of help tearing down and schlepping out to the car so it was next to no time before I was on to the Glen Allen Golf Fun-raiser! I sort of came in on the tail end of things but it seemed like it was a very successful evening there as well. We'll get final numbers out as soon as we can.
We still don't have final numbers from the burrito eating contest at Qdoba. Still working on it.
Now I'm home, trying to stay awake to finish this before I go pack for tomorrow. Rachel has most everything ready and lined up, I just need to make it all fit in the suitcase.
Thanks for all your well wishes for the safe trip. See you in Houston.
Rog
p.s. We got the ReeseStrong doll and will be taking it to Houston.
0. There was a green old navy jacket (adult size xs) left at the Head Shaving Party @ Romp n' Roll in April. If it belongs to you, please come by or call to claim it. It's really cute and I would take it but there's NO WAY I'm an XS :-)
1. Mini Golf/Batting Cages/Driving Range TONIGHT 7-10 PM at Glen Allen Golf on US1 to benefit Charlotte.
2. The Five Below event @ VCC seemed to be a success and Charlotte's story has really touched on the people there SO they are repeating the event for the next TWO weekends. Get your flyers at Romp n' Roll and take them in to buy all your summer tchotchkes (sp?).
3. Don't forget about the Brain Tumor Awareness Benefit Concert with Susan Greenbaum and Cheryl Fare at Ashland Coffee and Tea Saturday (5/23) from 3-6 PM. The event itself does not benefit Charlotte directly but it is a great cause with great music AND there will be a 50/50 raffle for Charlotte as well. Much thanks to Susan and Cheryl for letting us piggyback on this. We are sorry that we will miss it.
4. A shout-out to Christy, Wendy, and Torrie for helping Roger with the FACES event at Virginia Crossings tonight.
5. A HUGE shout-out to Jackie Plank for continuing the fundraising efforts.
6. On that note: another date change. The home based business bazaar will be June 27th at St. Ann's Catholic Church. More details to follow but there will be lots of vendors (Pampered Chef, Arbonne, Longaberger Baskets, etc.) selling their wares and donating a portion of the proceeds to Charlotte. Start your Christmas shopping early! Also, I think a Silent Auction is in the works.
With all of these fundraisers in the works, we are very grateful. We just found out that the insurance IS going to cover our visit to TX as a "second opinion" (they will cover the visit but not the tumor evaluation since that is considered experimental). We did receive a second denial of our appeal for considering the stem cell transplant services as "in-network" at MCV. The insurance ombudsman feels we made a great case and that the insurance did thoroughly review our cause but they continue to maintain that they are not denying us coverage and that we can go to an in-network hospital or pay the out-of-network rates. Given that we do not know right now how many stem cell transplants/rounds of high dose chemo she will need and/or whether this will go on past this calendar year (since our deductible is for the calendar year), this will probably increase our out-of-pocket medical costs to anywhere between $40-100K. We will definitely be talking with MCV about negotiating cost but there isn't much point until we know the direction where MD Anderson will point us...
That is all I have to report. I hope to see some of you tonight. Then I must pack and we leave for the airport about 5 AM tomorrow! Whew!
Rachel
First off and VERY IMPORTANT, the little thermometer to the right isn't our idea. It makes it look like Charlotte will somehow get donations if you click there. I've asked them to remove Charlotte's name from it. Seem a little sneaky to me. I've already sent them a donation when we first started the site and I know several of you have as well. Might be the last one I send if they keep that kind of crap up
Be that as it may, today was a HUGE day! First off, I woke up, completely alert, at 4AM this morning. No idea why.
Charlotte and I went down to Children's Hospital to get the fabled slides of the tumor which we will take with us to Houston ("Houston, Texas?!?")
This next event illustrated Cerisa's post brilliantly: While headed home, I asked Charlotte where she wanted to have lunch and she said the ever wonderful, "Chick-fil-a." When I said, OK, we're going to Chick-fil-a, she immediately said, "People eat there seven times a day!" If you don't know to what that refers, immediately open a new browser tab/window and go here:
http://www.youtube.com/watch?v=NsJHqstPuNo
No, really. Go do that now...
Hmmm dee dum dummm
Great, eh?
OK so we get to CFA and we meet Mommy there. We had a great lunch, CJ had ice cream with her lunch, and Mommy and I switched cars and Charlotte.
I then went to VA Crossings Resort to set up the Romp n' Roll stuff for the FACES of Virginia meeting. I was actually getting a little nervous because the final count was edging up into the low 40s which is a handful under primo conditions and I knew this wasn't going to have those conditions.
I got to the resort and realized they weren't going to have the two separate rooms for the kids or the other, OTHER separate room for the older kids to play board games. I figured that's OK since I'll have my star volunteers, Torrie (Too Tall Torrie) Heathcoat and Christy Yeadon MAN Am I glad they were there! Couldn't have done this without them. Thanks, ladies!
After teaching my classes at Romp n' Roll, I zoomed over and found the place in chaos already. We got the kids a little focused with a song or two and an idea of what an obsticle course should be and they took it from there. They really seemed to love the springboard! There were a few "breaks" and lots of redirection but a pretty fun time was had by all.
So we made a lot of FACES parents very happy to be able to have a nice, relatively quiet dinner. I also think it got us a bit of new business. If you've never plopped your head into the pensieve that is the world of foster parenting and adoption, it's had to imagine what a tough job it is. Foster and adoptive parents need and deserve access to every little bit of resources under the sun! That's why I dig this FACES of Virginia Families organization so much. That's what they do. If you don't get suckered in by the little thermometer over there and have given as much as you want to CJ's fund, I can think of few other places as deserving of your support. Heck! Boss woman, Cate Neubanks is even going to yoga with us on June 6th.
I had a ton of help tearing down and schlepping out to the car so it was next to no time before I was on to the Glen Allen Golf Fun-raiser! I sort of came in on the tail end of things but it seemed like it was a very successful evening there as well. We'll get final numbers out as soon as we can.
We still don't have final numbers from the burrito eating contest at Qdoba. Still working on it.
Now I'm home, trying to stay awake to finish this before I go pack for tomorrow. Rachel has most everything ready and lined up, I just need to make it all fit in the suitcase.
Thanks for all your well wishes for the safe trip. See you in Houston.
Rog
p.s. We got the ReeseStrong doll and will be taking it to Houston.
Thursday, May 14, 2009
We are Staying Busy
Hi Everyone,
We just found out that the Shopping Day for Charlotte at Five Below (at VCC) has been EXTENDED to Sunday May 17th as well! We prefer that you take a "Shopping for Charlotte" flyer (we have lots at Romp n' Roll) but you can also tell them that you are shopping on behalf of Charlotte and they should credit your sale.
What a great day yesterday! Charlotte went with us to Romp n' Roll. We haven't had a day like that since before January. She participated in classes that we taught and then went to Princess class with 6 other girls. She was dressed in her Snow White costume complete with wig (for those of you who have seen last Halloween's photos, you know the look). Then we had lunch at Chic-Fil-A (so yummy), Mommy got her new iphone (yay!) and we went home for more fun.
I got to have my own "adult" playdate with a friend at Chili's yesterday afternoon while Uncle Kolbey played with Charlotte. Then it was home for dinner and LOST.
I couldn't have asked for a better day and I think Charlotte had a good time as well.
Today it's off to Virginia Blood Services. They are going to test my blood to make sure I can donate for her surgery in 2 weeks. We did not have time to do this before the last surgeries but can now. She and I have the same blood type so I can actually donate and designate the blood directly for her. There's a small fee but we think it's worth it. This is a good chance to remind everyone though: if you are eligible and able to give blood, please do so regularly. Blood donations are ALWAYS needed in Virginia and you will be helping kids (like Charlotte) and adults in need by giving regularly.
That's my PSA for the day.
Then we are heading over to "montessori house" for a lunch date. I know Charlotte will be excited to see her friends. Gotta go get ready for the day...
Rachel
We just found out that the Shopping Day for Charlotte at Five Below (at VCC) has been EXTENDED to Sunday May 17th as well! We prefer that you take a "Shopping for Charlotte" flyer (we have lots at Romp n' Roll) but you can also tell them that you are shopping on behalf of Charlotte and they should credit your sale.
What a great day yesterday! Charlotte went with us to Romp n' Roll. We haven't had a day like that since before January. She participated in classes that we taught and then went to Princess class with 6 other girls. She was dressed in her Snow White costume complete with wig (for those of you who have seen last Halloween's photos, you know the look). Then we had lunch at Chic-Fil-A (so yummy), Mommy got her new iphone (yay!) and we went home for more fun.
I got to have my own "adult" playdate with a friend at Chili's yesterday afternoon while Uncle Kolbey played with Charlotte. Then it was home for dinner and LOST.
I couldn't have asked for a better day and I think Charlotte had a good time as well.
Today it's off to Virginia Blood Services. They are going to test my blood to make sure I can donate for her surgery in 2 weeks. We did not have time to do this before the last surgeries but can now. She and I have the same blood type so I can actually donate and designate the blood directly for her. There's a small fee but we think it's worth it. This is a good chance to remind everyone though: if you are eligible and able to give blood, please do so regularly. Blood donations are ALWAYS needed in Virginia and you will be helping kids (like Charlotte) and adults in need by giving regularly.
That's my PSA for the day.
Then we are heading over to "montessori house" for a lunch date. I know Charlotte will be excited to see her friends. Gotta go get ready for the day...
Rachel
Tuesday, May 12, 2009
What a Good Day!
What a good day! While I'm still not over feeling exhausted all the time, at least I'm not a bundle of nerves and anxiety over the unknown. that helps a lot.
Charlotte had a great day with visits from Wyatt and Heather, walks around the neighborhood, lots of exercising, and lots of eating.
We have a plan and an itinerary. We will be flying on Air Tran out to Houston on May 21st and returning on May 23rd. Our meeting at the clinic is on May 22nd. Thanks to our wonderful network of resources, we have learned about shuttles from the airport to the hotels/hospital area (hence no need for a rental car) as well as some good hotel accomodations for our stay.
Also, thanks to our wonderful staff at Romp n' Roll (as well as help from a few of the other Romp n' Rollers in the Richmond area), I think we've just about got coverage at the store covered while we are away.
We are still planning on surgery on the 27th. My mom leaves tomorrow to go back to Florida (bye Granny!). Roger's dad (Grandpa) and Juanita Bonita will be back her on the 26th in preparation for her surgery and we're getting some other "ducks in a row" for the weeks to come.
It's nice when the stars seem to align.
On a not so good note, it looks like the insurance appeals are not going to go as hoped. After our second appeal letter, Humana continues to maintain that we are well within our rights to choose MCV and they are well within THEIR rights to charge us an out-of-network rate for choosing MCV. End of story. The short answer is that I will follow up with our rep from the insurance commission and possibly make one final appeal through our delegate representative who has been following the case to see if he has any "pull" but I think the 8-ball is telling us "all signs point to NO".
Thank goodness to those of you who have led the charge on those fundraisers because we are gonna need them!!
Speaking of which, it looks like the Glen Allen Golf event has been rescheduled for next Wednesday (May 20th) from 7-10 PM. Mini-golf, batting cages, and driving range. Pray for sunshine and come out to see us off to Houston!
We also have the shopping events this weekend. Saturday 5/16: Five-Below (at VCC). You need to bring a flyer. We have LOTS of flyers at Romp n' Roll. 10% goes to Charlotte so stock up on your summer pool noodles, bouncy balls, and other un-necessary junk....
THEN Sunday 5/17 at Everything But Water (bathing suits, etc.) in the Short Pump Mall. I don't know if you need a flyer of some kind for this but 10-15% should go to Charlotte and I understand that there will be a chick-fil-a wheel with prizes and opportunities to help there as well (with food???). Thanks to Torrie for arranging this.
It looks like we will be getting back into town after the Brain Tumor Awareness concert at Ashland Coffee and Tea (featuring Susan Greenbaum and Cheryl Fare). I am SO sorry that we will miss this because I know it will be great. Please come out and support the event for us! There will be a 50/50 raffle for Charlotte and a chance to hear some great music.
That is all I have to say for now. Rumor has it Charlotte will be making an appearance at a Princess class tomorrow. And I get to watch the season finale of LOST tomorrow night. And did I mention that I get my new iphone tomorrow? Should be a good day....Signing off...
Rachel
Charlotte had a great day with visits from Wyatt and Heather, walks around the neighborhood, lots of exercising, and lots of eating.
We have a plan and an itinerary. We will be flying on Air Tran out to Houston on May 21st and returning on May 23rd. Our meeting at the clinic is on May 22nd. Thanks to our wonderful network of resources, we have learned about shuttles from the airport to the hotels/hospital area (hence no need for a rental car) as well as some good hotel accomodations for our stay.
Also, thanks to our wonderful staff at Romp n' Roll (as well as help from a few of the other Romp n' Rollers in the Richmond area), I think we've just about got coverage at the store covered while we are away.
We are still planning on surgery on the 27th. My mom leaves tomorrow to go back to Florida (bye Granny!). Roger's dad (Grandpa) and Juanita Bonita will be back her on the 26th in preparation for her surgery and we're getting some other "ducks in a row" for the weeks to come.
It's nice when the stars seem to align.
On a not so good note, it looks like the insurance appeals are not going to go as hoped. After our second appeal letter, Humana continues to maintain that we are well within our rights to choose MCV and they are well within THEIR rights to charge us an out-of-network rate for choosing MCV. End of story. The short answer is that I will follow up with our rep from the insurance commission and possibly make one final appeal through our delegate representative who has been following the case to see if he has any "pull" but I think the 8-ball is telling us "all signs point to NO".
Thank goodness to those of you who have led the charge on those fundraisers because we are gonna need them!!
Speaking of which, it looks like the Glen Allen Golf event has been rescheduled for next Wednesday (May 20th) from 7-10 PM. Mini-golf, batting cages, and driving range. Pray for sunshine and come out to see us off to Houston!
We also have the shopping events this weekend. Saturday 5/16: Five-Below (at VCC). You need to bring a flyer. We have LOTS of flyers at Romp n' Roll. 10% goes to Charlotte so stock up on your summer pool noodles, bouncy balls, and other un-necessary junk....
THEN Sunday 5/17 at Everything But Water (bathing suits, etc.) in the Short Pump Mall. I don't know if you need a flyer of some kind for this but 10-15% should go to Charlotte and I understand that there will be a chick-fil-a wheel with prizes and opportunities to help there as well (with food???). Thanks to Torrie for arranging this.
It looks like we will be getting back into town after the Brain Tumor Awareness concert at Ashland Coffee and Tea (featuring Susan Greenbaum and Cheryl Fare). I am SO sorry that we will miss this because I know it will be great. Please come out and support the event for us! There will be a 50/50 raffle for Charlotte and a chance to hear some great music.
That is all I have to say for now. Rumor has it Charlotte will be making an appearance at a Princess class tomorrow. And I get to watch the season finale of LOST tomorrow night. And did I mention that I get my new iphone tomorrow? Should be a good day....Signing off...
Rachel
Saturday, May 9, 2009
Another Busy Day
Another busy day. Charlotte and I are enjoying a quiet evening at home watching a movie (Cars) so I thought I'd use the time for an update.
First of all, we got a substitute Mickey and I understand more are on the way (that way we'll NEVER run out!!). Knowing our luck, by the time the new ones arrive, she will have a new "obsession".
Also, Roger now has the webcam with Skype hooked up so Charlotte can talk/meet with her preschool friends. If anyone else has Skype connections, please let us know. We would love to schedule some "Charlotte talk times" with you.
Thank you to everyone who has written or who we have seen in the last few days and offered their thoughts and concerns. We really appreciate it. As we have said to many people who have asked about Charlotte, she is doing great. Really, reallly great. That is part of what makes this so difficult. To look at her, you would still never really know (except for the bald head and the sometimes awkward motor stuff) that she had this tumor growing inside her. As usual, Roger and I are suffering more than her through a lot of this.
After some consideration, Roger and I have decided that we do not need to pursue a second opinion on the surgery. We trust Dr. Tye and his team and know that this is a necessary next step regardless of how we proceed with the oncology side of things. We will be talking with his office first thing on Monday to determine when exactly surgery will happen. It may be soon.
We still have some questions about the trip to Houston and MD Anderson. Mainly the questions revolve around "how" not "if". Mainly, we are concerned that the timeline the doctor has given us may involve travel sooner than we think Charlotte will be ready post-surgery so we just have some more questions to ask. Our initial thought is that we will take Charlotte to Tennesse to meet up with Roger's dad and from there we will take his RV to Houston. This will allow us to keep Charlotte as comfortable as possible on what will be a very long road trip. Others have mentioned Angel Flights and we are investigating that as well. There is a question about whether air travel will be a possibility so soon after brain surgery.
Anyway, we will report more as we know details. My mom is still planning to leave on Wednesday (the 13th) so we will let you know if we need help in the coming weeks.
Today was a busy day with the Chic-Fil-A Cow Drop. The weather cooperated and it was good to see many romp n' roll friends as well as meet some (hopefully) new customers. Roger is up in Maryland performing with Uptown Vocal Jazz Quartet at the Mainstay. He should be back late tonight.
I'm looking forward to a relaxing evening and day tomorrow. Happy Mother's Day to all the moms out there (especially mine!)
Reminder: Open Gym at Romp n' Roll tomorrow from 10 AM-4 PM for all those dads that need to give mom a break...
Enjoy the rest of your weekend.
Charlotte has asked to type a message so I'm going to let her type here:
098iooooooooooooooooooo]]]\]]]==]]]\]][[[[[[[[[[[][[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[-[[[[[[[[[[[[[[[[[[[[[[[[[[[p
First of all, we got a substitute Mickey and I understand more are on the way (that way we'll NEVER run out!!). Knowing our luck, by the time the new ones arrive, she will have a new "obsession".
Also, Roger now has the webcam with Skype hooked up so Charlotte can talk/meet with her preschool friends. If anyone else has Skype connections, please let us know. We would love to schedule some "Charlotte talk times" with you.
Thank you to everyone who has written or who we have seen in the last few days and offered their thoughts and concerns. We really appreciate it. As we have said to many people who have asked about Charlotte, she is doing great. Really, reallly great. That is part of what makes this so difficult. To look at her, you would still never really know (except for the bald head and the sometimes awkward motor stuff) that she had this tumor growing inside her. As usual, Roger and I are suffering more than her through a lot of this.
After some consideration, Roger and I have decided that we do not need to pursue a second opinion on the surgery. We trust Dr. Tye and his team and know that this is a necessary next step regardless of how we proceed with the oncology side of things. We will be talking with his office first thing on Monday to determine when exactly surgery will happen. It may be soon.
We still have some questions about the trip to Houston and MD Anderson. Mainly the questions revolve around "how" not "if". Mainly, we are concerned that the timeline the doctor has given us may involve travel sooner than we think Charlotte will be ready post-surgery so we just have some more questions to ask. Our initial thought is that we will take Charlotte to Tennesse to meet up with Roger's dad and from there we will take his RV to Houston. This will allow us to keep Charlotte as comfortable as possible on what will be a very long road trip. Others have mentioned Angel Flights and we are investigating that as well. There is a question about whether air travel will be a possibility so soon after brain surgery.
Anyway, we will report more as we know details. My mom is still planning to leave on Wednesday (the 13th) so we will let you know if we need help in the coming weeks.
Today was a busy day with the Chic-Fil-A Cow Drop. The weather cooperated and it was good to see many romp n' roll friends as well as meet some (hopefully) new customers. Roger is up in Maryland performing with Uptown Vocal Jazz Quartet at the Mainstay. He should be back late tonight.
I'm looking forward to a relaxing evening and day tomorrow. Happy Mother's Day to all the moms out there (especially mine!)
Reminder: Open Gym at Romp n' Roll tomorrow from 10 AM-4 PM for all those dads that need to give mom a break...
Enjoy the rest of your weekend.
Charlotte has asked to type a message so I'm going to let her type here:
098iooooooooooooooooooo]]]\]]]==]]]\]][[[[[[[[[[[][[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[-[[[[[[[[[[[[[[[[[[[[[[[[[[[p
Wednesday, April 15, 2009
Care Calendar has Been Updated
Needs to watch Charlotte over the next two weeks have been posted on the Care Calendar. Please go there if you think you can help. There are some morning and evening needs. You can also email me if you can do some of the time but not all. Some of the timing is flexible.
Instructions for accessing the Care Calendar (you need a code) are in the RESOURCES section of this Caring Bridge site.
I think I have also figured out how we can post a calendar with fun-raising events. More on that soon. Gotta go teach...
Rachel
Update:
Charlotte is sleeping. I hope that's not a bad sign but my kid never naps! She had a busy day,though. Roger took her to PT and she did very well. The therapist was very impressed with her progress and she got to ride the tricycle.
Then it was off to lunch with her "boyfriend" Wyatt at chick-fil-a. She actually climbed up the play area and went down the slide. She hasn't been able to do that for a while. We also ventured over to Romp n' Roll for some playtime. Needless to say, when she got home, she went to snuggle with Daddy and CRASHED.
Oh, and she POOPED this afternoon. Hooray for poop.
That's all the news to report so far.
Rachel
Instructions for accessing the Care Calendar (you need a code) are in the RESOURCES section of this Caring Bridge site.
I think I have also figured out how we can post a calendar with fun-raising events. More on that soon. Gotta go teach...
Rachel
Update:
Charlotte is sleeping. I hope that's not a bad sign but my kid never naps! She had a busy day,though. Roger took her to PT and she did very well. The therapist was very impressed with her progress and she got to ride the tricycle.
Then it was off to lunch with her "boyfriend" Wyatt at chick-fil-a. She actually climbed up the play area and went down the slide. She hasn't been able to do that for a while. We also ventured over to Romp n' Roll for some playtime. Needless to say, when she got home, she went to snuggle with Daddy and CRASHED.
Oh, and she POOPED this afternoon. Hooray for poop.
That's all the news to report so far.
Rachel
Tuesday, April 14, 2009
A Few Quick Notes
Very quick note.
The Randolph-Macon College bookstore (now owned by Wal-Mart! :-) ) has Charlotte bracelets!
There are also lots at the store and we'll be happy to deliver any where!
Thanks,
Rog
Next very quick note.
Ashland Breakfast and Lunch (Formerly Pete's Restaurant) on Ashcake and US 1 now has pink bracelets. (and pretty good chicken noodle soup as well).
Had a cool event in my babies class today. One of the more serious babies actually gave me a little bit of a smile while I was tickling her during Rompy's goodbye song. That was a first and it made my day!
Other news, I've confirmed the participation of the Uptown Vocal Jazz Quartet as the "headliners" for the final concert in Rompy's Summer Concert Series. The concerts will take place on the second Thursdays of June, July, and August. UVJQ will perform on August 13 and Gypsy Roots Swing (with Thomas Wakefield) will open the fun with their own brand of "jazz manouche." Both bands are donating their services.
All concerts will be used to gather food donations for the Central Virginia Food Bank and monetary donations for CJ's fund. They'll be in the Chick-fil-a parking lot and we're always looking for more sponsors!
As I get all the other bands confirmed, I'll send out the big press release. Just thought you get excited by the Uptown/Gypsy Roots development. Gotta love those guys!
OK, not such a quick note.
Mommy's turn:
Charlotte's days continue to be good. I can only assume that the overnight IV fluids that we have this time around have something to do with it (and maybe the glorious power of prayer). She continues to keep up her energy, appetite, and a poop at least every other day. We got permission today from our NP for IV fluids to continue until her clinic visit on Friday.
We will be very sad to see Granny, gramps, and Kolbey leave tomorrow. for Florida. Kolbey will fly home on Monday but Granny will not return until the end of the month....hopefully timed well with our next round of chemo.
As mentioned, i will be posting some "needs for help" on the care calendar soon. Hopefully by late tonight/early tomorrow.
ALSO, our fun-raising team has been busy, busy, busy. First of all, the checks keep floating in from the Head Shaving party with additional donations for Bob Flanagan and Mitch Hayes. Way to go! We also have a LOT of upcoming events in the remainder of April, May, and even into June that will benefit Charlotte. I am thinking that the best way to get the word out about this is through a published calendar; however, I'm not sure WHERE I can publish it. There are no spaces on Caring Bridge and Care Calendar doesn't seem to be the most user-friendly thing in the world. If anyone has any ideas about this, please email me directly. I was thinking of something in Publisher/PDF format that I could post online somewhere...I'll work on that.
Tomorrow morning it's RnR for mommy and PT for Charlotte (and Daddy). Then we'll do the big switcheroo in the afternoon.
I'd like to see the sun but I really won't complain...
Rachel
The Randolph-Macon College bookstore (now owned by Wal-Mart! :-) ) has Charlotte bracelets!
There are also lots at the store and we'll be happy to deliver any where!
Thanks,
Rog
Next very quick note.
Ashland Breakfast and Lunch (Formerly Pete's Restaurant) on Ashcake and US 1 now has pink bracelets. (and pretty good chicken noodle soup as well).
Had a cool event in my babies class today. One of the more serious babies actually gave me a little bit of a smile while I was tickling her during Rompy's goodbye song. That was a first and it made my day!
Other news, I've confirmed the participation of the Uptown Vocal Jazz Quartet as the "headliners" for the final concert in Rompy's Summer Concert Series. The concerts will take place on the second Thursdays of June, July, and August. UVJQ will perform on August 13 and Gypsy Roots Swing (with Thomas Wakefield) will open the fun with their own brand of "jazz manouche." Both bands are donating their services.
All concerts will be used to gather food donations for the Central Virginia Food Bank and monetary donations for CJ's fund. They'll be in the Chick-fil-a parking lot and we're always looking for more sponsors!
As I get all the other bands confirmed, I'll send out the big press release. Just thought you get excited by the Uptown/Gypsy Roots development. Gotta love those guys!
OK, not such a quick note.
Mommy's turn:
Charlotte's days continue to be good. I can only assume that the overnight IV fluids that we have this time around have something to do with it (and maybe the glorious power of prayer). She continues to keep up her energy, appetite, and a poop at least every other day. We got permission today from our NP for IV fluids to continue until her clinic visit on Friday.
We will be very sad to see Granny, gramps, and Kolbey leave tomorrow. for Florida. Kolbey will fly home on Monday but Granny will not return until the end of the month....hopefully timed well with our next round of chemo.
As mentioned, i will be posting some "needs for help" on the care calendar soon. Hopefully by late tonight/early tomorrow.
ALSO, our fun-raising team has been busy, busy, busy. First of all, the checks keep floating in from the Head Shaving party with additional donations for Bob Flanagan and Mitch Hayes. Way to go! We also have a LOT of upcoming events in the remainder of April, May, and even into June that will benefit Charlotte. I am thinking that the best way to get the word out about this is through a published calendar; however, I'm not sure WHERE I can publish it. There are no spaces on Caring Bridge and Care Calendar doesn't seem to be the most user-friendly thing in the world. If anyone has any ideas about this, please email me directly. I was thinking of something in Publisher/PDF format that I could post online somewhere...I'll work on that.
Tomorrow morning it's RnR for mommy and PT for Charlotte (and Daddy). Then we'll do the big switcheroo in the afternoon.
I'd like to see the sun but I really won't complain...
Rachel
Sunday, April 12, 2009
Happy Easter
Happy Easter everyone. Thanks so much, again, to all involved with the Head Shaving Party on Friday. It was a great day from the word "go."
The morning Open Gym was busy with lots of our regular faithful members and that meant more to me than most people can know. It meant that our members are invested and interested enough to keep track of our wacky schedule shifts and adapt with them. (This has actually been a very successful Spring Break and now we are VERY excited that the official Summer Session schedule will be available TOMORROW!)
Then, after Open Gym, I went running around, gathering stuff for the big event including some cool jars and vases for the donations, face paint for the freshly shaved heads, and prizes. I had some good karma going and the timing actually worked out perfectly to fit in a Dr.'s appointment for myself. (Yeah, I actually need those too sometimes) Just a checkup. My numbers were all good except my cholesterol for which I actually have medication but I had stopped taking for a while to see if my low numbers from last time were a result of the statin or better eating habits. Turns out it's a little of both so I started taking a half dose again since that's what worked so well for my last checkup.
So, back on task...Got everything together and got things rolling right at 3pm (again, perfect timing despite a bog ole' traffic jam on 95). The rest you know about. $4600+. THANKS!
Rachel gave out lots of thanks but I want to send out my own.
Amanda from Great Clips a couple doors up was so generous with her lunch hour and did such a great job of whipping out those heads.
Also, Cici's Pizza gave us TWO huge trays of brownies for the party and has often offered meals (which we've taken them up on once)
I can't tell you how much I appreciate Pam and Chick-fil-a for everything they've done and are planning to do for us/Charlotte. Thanks for letting me be a cow! :-)
The head shavees. You helped make it so much fun!
The completely AWSOME RNR staff who proved once again how much we couldn't do without them.
Sorry for forgetting anyone. I'll remember them during my Grammy acceptance speech!
Now we have our next event coming up:
The Lisa Nichols Richardson Memorial All-You-Can-Eat Benefit Dinner, titled, "Living With Cancer" On April 25 from 2-5pm. At the Elko Community Center in Sandston, VA. Tickets are $10 and will be on sale at Romp n' Roll VA Center! All proceeds to help Charlotte.
This post to be continued...gotta run to the store to get some last minute stuff for Easter dinner...
An Update:
OK, I'm back. Yummy Easter meal. Charlotte is still eating like a champ. She's been downing the strawberries like nobody's business. Need to get a little something else in her so she doesn't explode (if you know what I mean).
The Flannagans (Lou and Joanne) brought by a couple discs of pics from the head shaving party and I'm going to try to post a bunch of what I have to Facebook since that's the best place I've found to share lots of photos (given my limited technical ability). Thanks folks.
Back to schedules...Happy Start of the Civil War. Does licking my chops at the number of future Southern Horizon gigs make me a war profiteer? 150 years or so after the fact? :-)
Here's what else is going on:
Tomorrow evening: RNR to Go up to Caroline County for an adventure class. There were several people from up there at the Head Shaving Party. Thanks for being there.
Tuesday, April 21 - We're invited to participate in Come and Play With Chic-fil-a at Virginia Center Commons Mall (in the play area by Sears) Not exactly sure who's going to do that as I will be doing RNR to Go. Needs to be led by a trained employee but volunteer "helpers" are always welcome.
Thursday, April 23 - There's an Open House at Rainbow Station by Memorial Regional Hospital. We can use a volunteer "helper" and a babysitter for CJ.
Saturday, April 25. - Talk about a nuts day! Besides the "Living With Cancer" benefit dinner in Sandston, we also have The Connections Fair at the Childrens Museum all day, Miss Alyson's Wellness Fair in Ladysmith, and a Southern Horizon performance at Tredegar Ironworks at 1:00. So it's going to be a huge day. I would like to take Charlotte to the dinner after the SoHo (My personal abbreviation) performance but we will probably need "CJ coverage" before then if anyone is available.
Wednesday, April 29th - I have a conference in the morning and Rachel is teaching at RNR.
Saturday May 2 - Randolph-Macon College is having the Relay For Life and we might be involved a little. Several organizations on campus have contacted us one way or another about doing something for Charlotte. More details as they develop.
We're going to have "Rompy's Bluegrass Jam" at the store on Monday, May 4. Bring your axe. Free for adults, kids can play in the gym for $5.00 each. Donations to the cause always accepted! Charlotte will be having chemo round 3.
I'm sure we will eventually have all of this on the Care Calendar so please check there to volunteer/sign up.
The morning Open Gym was busy with lots of our regular faithful members and that meant more to me than most people can know. It meant that our members are invested and interested enough to keep track of our wacky schedule shifts and adapt with them. (This has actually been a very successful Spring Break and now we are VERY excited that the official Summer Session schedule will be available TOMORROW!)
Then, after Open Gym, I went running around, gathering stuff for the big event including some cool jars and vases for the donations, face paint for the freshly shaved heads, and prizes. I had some good karma going and the timing actually worked out perfectly to fit in a Dr.'s appointment for myself. (Yeah, I actually need those too sometimes) Just a checkup. My numbers were all good except my cholesterol for which I actually have medication but I had stopped taking for a while to see if my low numbers from last time were a result of the statin or better eating habits. Turns out it's a little of both so I started taking a half dose again since that's what worked so well for my last checkup.
So, back on task...Got everything together and got things rolling right at 3pm (again, perfect timing despite a bog ole' traffic jam on 95). The rest you know about. $4600+. THANKS!
Rachel gave out lots of thanks but I want to send out my own.
Amanda from Great Clips a couple doors up was so generous with her lunch hour and did such a great job of whipping out those heads.
Also, Cici's Pizza gave us TWO huge trays of brownies for the party and has often offered meals (which we've taken them up on once)
I can't tell you how much I appreciate Pam and Chick-fil-a for everything they've done and are planning to do for us/Charlotte. Thanks for letting me be a cow! :-)
The head shavees. You helped make it so much fun!
The completely AWSOME RNR staff who proved once again how much we couldn't do without them.
Sorry for forgetting anyone. I'll remember them during my Grammy acceptance speech!
Now we have our next event coming up:
The Lisa Nichols Richardson Memorial All-You-Can-Eat Benefit Dinner, titled, "Living With Cancer" On April 25 from 2-5pm. At the Elko Community Center in Sandston, VA. Tickets are $10 and will be on sale at Romp n' Roll VA Center! All proceeds to help Charlotte.
This post to be continued...gotta run to the store to get some last minute stuff for Easter dinner...
An Update:
OK, I'm back. Yummy Easter meal. Charlotte is still eating like a champ. She's been downing the strawberries like nobody's business. Need to get a little something else in her so she doesn't explode (if you know what I mean).
The Flannagans (Lou and Joanne) brought by a couple discs of pics from the head shaving party and I'm going to try to post a bunch of what I have to Facebook since that's the best place I've found to share lots of photos (given my limited technical ability). Thanks folks.
Back to schedules...Happy Start of the Civil War. Does licking my chops at the number of future Southern Horizon gigs make me a war profiteer? 150 years or so after the fact? :-)
Here's what else is going on:
Tomorrow evening: RNR to Go up to Caroline County for an adventure class. There were several people from up there at the Head Shaving Party. Thanks for being there.
Tuesday, April 21 - We're invited to participate in Come and Play With Chic-fil-a at Virginia Center Commons Mall (in the play area by Sears) Not exactly sure who's going to do that as I will be doing RNR to Go. Needs to be led by a trained employee but volunteer "helpers" are always welcome.
Thursday, April 23 - There's an Open House at Rainbow Station by Memorial Regional Hospital. We can use a volunteer "helper" and a babysitter for CJ.
Saturday, April 25. - Talk about a nuts day! Besides the "Living With Cancer" benefit dinner in Sandston, we also have The Connections Fair at the Childrens Museum all day, Miss Alyson's Wellness Fair in Ladysmith, and a Southern Horizon performance at Tredegar Ironworks at 1:00. So it's going to be a huge day. I would like to take Charlotte to the dinner after the SoHo (My personal abbreviation) performance but we will probably need "CJ coverage" before then if anyone is available.
Wednesday, April 29th - I have a conference in the morning and Rachel is teaching at RNR.
Saturday May 2 - Randolph-Macon College is having the Relay For Life and we might be involved a little. Several organizations on campus have contacted us one way or another about doing something for Charlotte. More details as they develop.
We're going to have "Rompy's Bluegrass Jam" at the store on Monday, May 4. Bring your axe. Free for adults, kids can play in the gym for $5.00 each. Donations to the cause always accepted! Charlotte will be having chemo round 3.
I'm sure we will eventually have all of this on the Care Calendar so please check there to volunteer/sign up.
Sunday, April 5, 2009
It has Been an Up and Down Day
It has been an up and down day. She slept fairly well and we spent most of the morning watching DVDs, reading books, and making our "rounds" both inside the hospital and out on the play deck. Taking the morning meds (oral) was still a battle. No pooping yet but I have heard a few toots.
Our best part of the day came around 3 PM when Charlotte got a special visitor: ELMO! One of our Romp n' Roll families (the Murphys) have an Elmo costume leftover from their daughter's birthday party and they stopped by to visit with an Elmo balloon as well (pics to follow). Charlotte seemed to enjoy Elmo's antics although she was a little reticent about hugs. She did talk to Elmo a lot about all his Sesame Street friends as well as her friend Dora. Then Elmo even got to visit with a few other kids on the unit. Thanks so much to the Murphy family! You really brightened her day...
Then we went to "Sunday School" and Charlotte made a butterfly, got a puzzle, and heard a few stories. The event was enjoyable enough but I just had to laugh at the concept of trying to share heaven/hell theology with a bunch of preschoolers. We were treated to a good ol' Bible tract and the concept that "There are only two places to go when you die: Heaven or to live in the fiery pit". [This is LITERALLY what the woman said to these kids]. I don't think Charlotte or any of the other kids (all but one were under the age of 5) really got that... The person sharing the experience was nice enough but as she was telling Bible stories, she kept saying things like, "Remember the time that Jesus was crucified and all the priests in the temple were against him?" Her "verbage" was not really for the pre-K set and I found it amusing that she would even consider the fact that these kids would "remember' theses stories, let alone have heard them before.
Anyway, I digress. Charlotte had a good enough time and that's all that matters...
At the moment I am trying to wipe "sauce" off of the cheese and bread that makes up the pizza. Apparently the cheese and bread are good; just not the sauce in between. And then when I wipe off the sauce it's "too soggy". We really need a grilled cheese option on the culinary menu (sadly there is none).
So here is the really bad news of the day: we were returning from Sunday School and had just stopped at the nurses station since her line was beeping and she needed a new flush of Leucovorin. Her nurse checked the line and sent us on our way. I got us back to the room, proceeded to lift her out of the stroller, and her line went in the other direction. Yes, Ladies and Gentlemen, her Central Line literally fell OUT of her chest!
Fortunately, I didn't panic and Charlotte hardly reacted at all. I asked her if her chest hurt and she said "not anymore". I called the nurses and they all came in and looked at it...shocked, to say the least. Also on a good note, it didn't bleed as some central lines do when they are "unplugged". My personal theory is that her body has rejected the line (rather than accepting it and forming scar tissue on the inside to hold it in) and it just kinda pushed itself out. That would explain the lack of blood.
So the ped on call said that we probably can't get surgery done to repair the line until tomorrow (apparently surgeons ascribe to the don't-work-on-Sunday motto that Chick-Fil-A and Ukrops ascribes to as well...except in cases of extreme emergency...which this isn't). BUT we have to keep fluids pumping through her to flush the methotrexate AND she still has to get some of the Leucovorin SOOOOO....the nurses had the extreme pleasure of putting an IV in her left arm. Plus we will need to get blood draws at 3 AM to check all her levels. More fun. It was not a pleasant experience but the nurses were (of course) awesome and got her IV in on the first stick. Hallelujah.
Just another bump in the road. But it still sucks.
I feel like lately, all the "little" bumps in the road are magnified. When you're driving down the road in a 2009 Cadillac Escalade (Hybrid, of course), it's smooth sailing and even if you hit a pothole, you can keep cruising along OK. But we're riding in a beat-up 1978 Chevy Nova with a rebuilt transmission, 200K miles, and we're barely passing inspection. We feel EVERY little bump in the road and we're on a cross country trip. So lately even the littlest thing (something that in the grand scheme of things is probably not that important and certainly not high priority) can upset me and ruin my day/week/month/life.
Charlotte has developed a few "odd" behaviors and sayings in the last few days. One is that she now LOVES the lemon cleaning wipe that comes with the silverware on every food tray. She has to clean her hands and face after every meal with it. The other is that she has said a few things like, "Kittens don't die" when looking at a picture of kittens. When I ask her about it she expands, "Kittens don't die because they're babies." Not sure where this stream of logic comes from or why she's suddenly obsessed with it butI find it fascinating. She really has such an interesting perspective on the world.
So daddy is on his way here and I'm very happy to give up the reins for the evening. Please pray for a quick fix to this central line mess as well as a quick flushing of this methotrexate from her system so we can get on with the rest of the chemo.
Rachel
Update from Roger:
Please join me in wishing strength to the Porterfield family as they mourn the passing of their little girl, Leah. We met them the second time we came to the hospital. Leah was admitted after they were involved in a car accident.
I'm not sure if you can view their website but here's a link...
http://www.carepages.com/carepages/leahaveryporterfield/updates/2072395?client_code=vcuhealth&ipc=mur
Love to all,
Rog
Our best part of the day came around 3 PM when Charlotte got a special visitor: ELMO! One of our Romp n' Roll families (the Murphys) have an Elmo costume leftover from their daughter's birthday party and they stopped by to visit with an Elmo balloon as well (pics to follow). Charlotte seemed to enjoy Elmo's antics although she was a little reticent about hugs. She did talk to Elmo a lot about all his Sesame Street friends as well as her friend Dora. Then Elmo even got to visit with a few other kids on the unit. Thanks so much to the Murphy family! You really brightened her day...
Then we went to "Sunday School" and Charlotte made a butterfly, got a puzzle, and heard a few stories. The event was enjoyable enough but I just had to laugh at the concept of trying to share heaven/hell theology with a bunch of preschoolers. We were treated to a good ol' Bible tract and the concept that "There are only two places to go when you die: Heaven or to live in the fiery pit". [This is LITERALLY what the woman said to these kids]. I don't think Charlotte or any of the other kids (all but one were under the age of 5) really got that... The person sharing the experience was nice enough but as she was telling Bible stories, she kept saying things like, "Remember the time that Jesus was crucified and all the priests in the temple were against him?" Her "verbage" was not really for the pre-K set and I found it amusing that she would even consider the fact that these kids would "remember' theses stories, let alone have heard them before.
Anyway, I digress. Charlotte had a good enough time and that's all that matters...
At the moment I am trying to wipe "sauce" off of the cheese and bread that makes up the pizza. Apparently the cheese and bread are good; just not the sauce in between. And then when I wipe off the sauce it's "too soggy". We really need a grilled cheese option on the culinary menu (sadly there is none).
So here is the really bad news of the day: we were returning from Sunday School and had just stopped at the nurses station since her line was beeping and she needed a new flush of Leucovorin. Her nurse checked the line and sent us on our way. I got us back to the room, proceeded to lift her out of the stroller, and her line went in the other direction. Yes, Ladies and Gentlemen, her Central Line literally fell OUT of her chest!
Fortunately, I didn't panic and Charlotte hardly reacted at all. I asked her if her chest hurt and she said "not anymore". I called the nurses and they all came in and looked at it...shocked, to say the least. Also on a good note, it didn't bleed as some central lines do when they are "unplugged". My personal theory is that her body has rejected the line (rather than accepting it and forming scar tissue on the inside to hold it in) and it just kinda pushed itself out. That would explain the lack of blood.
So the ped on call said that we probably can't get surgery done to repair the line until tomorrow (apparently surgeons ascribe to the don't-work-on-Sunday motto that Chick-Fil-A and Ukrops ascribes to as well...except in cases of extreme emergency...which this isn't). BUT we have to keep fluids pumping through her to flush the methotrexate AND she still has to get some of the Leucovorin SOOOOO....the nurses had the extreme pleasure of putting an IV in her left arm. Plus we will need to get blood draws at 3 AM to check all her levels. More fun. It was not a pleasant experience but the nurses were (of course) awesome and got her IV in on the first stick. Hallelujah.
Just another bump in the road. But it still sucks.
I feel like lately, all the "little" bumps in the road are magnified. When you're driving down the road in a 2009 Cadillac Escalade (Hybrid, of course), it's smooth sailing and even if you hit a pothole, you can keep cruising along OK. But we're riding in a beat-up 1978 Chevy Nova with a rebuilt transmission, 200K miles, and we're barely passing inspection. We feel EVERY little bump in the road and we're on a cross country trip. So lately even the littlest thing (something that in the grand scheme of things is probably not that important and certainly not high priority) can upset me and ruin my day/week/month/life.
Charlotte has developed a few "odd" behaviors and sayings in the last few days. One is that she now LOVES the lemon cleaning wipe that comes with the silverware on every food tray. She has to clean her hands and face after every meal with it. The other is that she has said a few things like, "Kittens don't die" when looking at a picture of kittens. When I ask her about it she expands, "Kittens don't die because they're babies." Not sure where this stream of logic comes from or why she's suddenly obsessed with it butI find it fascinating. She really has such an interesting perspective on the world.
So daddy is on his way here and I'm very happy to give up the reins for the evening. Please pray for a quick fix to this central line mess as well as a quick flushing of this methotrexate from her system so we can get on with the rest of the chemo.
Rachel
Update from Roger:
Please join me in wishing strength to the Porterfield family as they mourn the passing of their little girl, Leah. We met them the second time we came to the hospital. Leah was admitted after they were involved in a car accident.
I'm not sure if you can view their website but here's a link...
http://www.carepages.com/carepages/leahaveryporterfield/updates/2072395?client_code=vcuhealth&ipc=mur
Love to all,
Rog
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